Our journey to the hearing world

What I am Thankful for....

2011-11-11T07:49:00.002-05:00

The end of the 1st quarter was a couple weeks ago. We had Thomas' conference on Wednesday. I have to start off by saying that I love Thomas' teacher ~ she is an absolute perfect fit for him. She has genuine concern and love for each and every one of her students. One of the things she said to me during the conference was " I have the best job"..she loves what she does and that definitely gets passed on to her students. Thomas LOVES school and his teachers (the gym teacher is another one of his favorites).
Thomas is doing excellent in school. He is making progress in his academics, socially he is friends with everyone and gets along and participates and his teacher loves his personality. She said a few different times that he is very funny and he makes her laugh!
As a Mom in general you worry about your children...but when you have a child with special needs it seems that the worry gets kicked up a few notches. I remember a few years back when one of my biggest concerns (when talking with the early intervention specialists that used to come to the house and "play" with Thomas and I) was that Thomas be in a mainstream school, be at or above the level of his hearing peers...just to be another kid...not the kid with the things on his ears.
If I knew than what I know now I wouldnt have worried (as much)!
I have many things to be thankful for ~ my two beautiful, wonderful boys; my brother being home after 7weeks in the hospital (3 weeks of which were in ICU); my wonderful family and friends; our health...and all of the good times we have had and all of the good times that will be had in the future!
I am one lukcy lady!!!

A Question .....

2011-09-07T20:49:00.002-05:00

I have a question to any CI Moms/Dads/recipients...has this ever happened to you or have you heard of it?

On our way to school this morning Thomas says "Mom, God Bless You", I thought to myself "he must have thought I sneezed" so I said "Thank you" and we continued.

About a minute later, I heard screaming from Thomas. I turned around and saw him crying and ripping his ears off. I pulled over and jumped into the back seat.

He was so scared and panicked it broke my heart. I took the batteries out, waited a minute, pushed them back in, turned them on and placed them (slowly) back on his ears. He said they were better, he calmed down so we continued on to school.

He really couldnt describe what happened. The initial noise had to sound like a sneeze...maybe really loud static? I dont know what it was but it totally freaked me out and my heart ached for him all day. He was so worried that it was going to happen again (I did call and leave a message for his teacher to tell her what happened). Thank goodness...it didnt!

First day of Kindergarten

2011-08-24T09:04:00.003-05:00

Its a bit after 10am..Thomas has been in school for almost 2hrs now!

We both did fine this morning! I cried when I got back to my car (and a little while I walked him to his classroom..I saw my friend Mary crying walking out of school ~ that started my tears!).

Thomas put his lunch in his cubby, his bookbag on the hook and sat in his chair to start coloring (his absolute favorite thing to do)! I took one more picture, gave him a kiss, chatted w/his teacher for a minute and than left. As I walked out I picked up a poem that his teacher had left for the parents (next to a box of tissue)...I will share the poem (but change the "her" to "him")

He started school this morning

And he seemed so very small

As I walked there beside him

in the Kindergarten hall

And as he took his place beside

the others in the class,

I realized how all too soon

Those first few years can pass.

Remembering, I saw him as

He first learned how to walk.

The words that we alone made out

When he began to talk

This little boy so much absorbed

In learning how to write.

It seems as though he must have grown

To boyhood overnight

My eyes were blurred by hastily

I brushed the tears away

Lest by some word or sign of mine

I mar his first big day.

Oh how I longed to stay with him

And keep him by the hand

To lead him through the places

that he couldn't understand

And something closely kin to fear

Was mingled with my pride

I knew he would no longer be

A baby by my side

But he must have his chance to live,

To work his problems out,

The privilege to grow and learn

What life is all about.

And I must share my little boy

With friends and work and play;

He's not a baby anymore-

He's in Kindergarten today!

Can't stop crying....

2011-08-23T19:44:00.002-05:00

Nope, not Thomas ~ he's fine! ME!

I actually have been holding it together quite well. Today we went to the science center and a tour of the huge Mather ship, we went to both open houses, ate some subway, I cut the grass while the boys played. We came in they took their showers, had a snack and chilled for a bit. I laid out their school clothes, made sure bookbags were ready and lunch bags were ready to be packed in the morning!

Teeth brushed, prayers said and tucked them into bed. As I stood by their door, I thought about what an awesome summer we had. No big vacations....just alot of FUN! Hanging out together, taking little day trips, park visits, zoo (of course) and lots of swimming!

Now summer vacation is over and although I'm sad I am excited for the school year for my boys! New experiences, new friends, some homework, some fun and of course, weekend bonding! I think about next summer and hope that its just as fun as this summer! I know as long as I have my little guys..it will be!

So, now that they are in their rooms, winding down and getting ready to fall asleep and I think about tomorrow. Jonathan is in 6th grade! These past 12yrs have flown by. I can remember taking him to school on his 1st day of Kindergarten. He was fine...I cried like a baby all the way home! I will have a tear in my eye when I drop him off at school tomorrow ~ not because I'm sad ~but because of how proud I am of him. He really is a spectacular guy...I'm telling you when I had my kids I hit the jackpot. My note to Jonathan ~ you have made me so proud these past 12yrs...you are an amazing Son, Brother, Grandson, Nephew, Cousin and Friend! I am so excited to see what the future holds for you...I LOVE YOU more than words can say!

I start crying when I think of walking out of Thomas' classroom and leaving him there to fend for himself (I know he's technically not by himself..but you know what I mean). I start crying thinking about how empty the house will be for 8hrs each day. He's my little buddy and I'm going to miss him. Jonathan is older and is quite independent. Thomas has always been by my side ~ I can't believe my little buddy is in school all day. Whew..I'm a mess right now!

It was hard leaving Thomas for 2.5hrs, 4days a week.....8hrs is a very long day!

(a little poem I found online)

First day of school for my little boys, as they climb up the steps and are feeling the joy

I watch as the school bus drives up the street, I head to the house as I shuffle my feet

It seems only yesterday they brought him to me wrapped in a blue blanket, the feeling of glee

He's now 5yrs old,(Jon is 12) how i dreaded this day, they would have to leave mommy to cry and I may

They are such good boys and they will do fine.

My day will be lonely with them on my mind

At 4pm the bus pulls up and I watch them step off, wave and smile my way

I missed them so much but I don't let them know

They had so much fun and I have to let them go

Getting ready for Kindergarten

2011-08-21T08:48:00.002-05:00

I can not believe we are a few days away from starting Kindergarten! We have his uniforms bought and new shoes waiting...I have not had him try anything on (yet). We've had them sitting in his closet for weeks now ~ I just can't myself to have Thomas put them on. Something in thinks that the longer I wait than it just wont happen! yeah right!
Uniforms....... check
school shoes... check
hair cut. ... check
new bookbag.... check
lunch bag... check
school inservice check
FM system... check
tennis balls.. check (another teacher is bringing them in for the bottoms of all
the little chairs in Thomas' classroom)

Thomas is READY! I, on other hand, am not!

I am nervous thinking about...

leaving him for almost 8hrs.

Thomas NOT speaking up for himself

what if he misses something the teacher says?

if someone is mean to him

swim class in the Spring (still thinking about what I'm going to do with
that..i don't want him to miss out on fun with his class)

something, anything happening that I can NOT control!

Hopefully they wont mind me sitting outside the classroom window..I promise ~ I won't interrupt! lol

I have to add that I love this school. They have been AMAZING when it comes to accomodating Thomas. The principal is hands on and is already quite familiar with Thomas. His teacher is WONDERFUL! I couldn't have asked for anyone better! He is a lucky guy! Did I mention that there were almost 10 different faculty members at the in-service? We are very fortunate :-)

Thomas starts school on Wednesday (half of the class goes all day)..he is off on Thursday (the other half attends) and Friday is the first full day of school for the whole class! His teacher and I spoke about it and agreed that I will join the class Friday morning and talk (a little) about Thomas' ears and what they do, Answer any questions and than leave.

My little guy is becoming independent! It breaks my heart that I can't keep him in a bubble right next to me and protect him from anything and everything..but that's not reality!

He is pumped and so excited. He asked me a few questions "How am I going to make friends?" , "what happens if I have to go to the bathroom?".."will you be there to pick me up?". Although I am nervous and anxious I don't let any of that known to Thomas. As far as he knows..I am just as excited about kindergarten as he is!

Maybe today will be the day that he tries on his uniforms? maybe!

FAD 2011

2011-08-15T16:01:00.005-05:00

Thomas and Senator Sherrod Brown...right after Thomas gave him one of his All-Star cards!

Thomas waiting for our next meeting (I think with Bob Gibbs)

Most of the children's hospital patients and some siblings at the Monday night festivities.

I haven't blogged in a few weeks. I have to start off by saying that FAD was a success! We met with our legislatures and had an excellent two days. Thomas loved flying...even though our flight in was a little bumpy ~ Thomas loved it! There was ALOT of walking...thank goodness that we had our stroller ~ not sure if Thomas could have taken all of it. We were advocating for the importance of CHGME (children's hospital graduate medical education program) NOT to cut funding and medicaid...how important it is to both patients and children's hospitals.
We arrived a few minutes late for the family briefing ... but we were still able to enjoy the presentations and Thomas got to meet Miranda Cosgrove (I-Carly). We had a few hours to relax and enjoy DC...my Aunt and Uncle drove in from VA to visit with us ~ it was great! That evening NACH (National Association of Children's Hospitals) put on a great family celebration that was very kid friendly. Dancing, eating, each child got to pick out a very nice toy, caricatures, ice cream and face painting. We got back to the room, washed up and went right to bed.
Tuesday morning we were up early and after breakfast there was a full day of capital hill meetings! From 930 am til 3pm we were meeting and talking with our Ohio legislatures. It was intense but so rewarding and the experience itself was priceless. I don't think Thomas realized how important his story was (is). I'm keeping a journal for him so he can enjoy it when he gets older...along with all of the malings he has received from some of the politicians we met with.
I forgot to mention the local media attention .... the Sunday before we left we had 3 different local news stations interested in our story. They came to the house and interviewed both Thomas and myself and took alot of video of us playing.
Never did I think, 5yrs ago, that we would have had all of these unbelievable opportunities!
Now...we are 10 days away from the first day of school! Its almost dinner time so I'll have to blog about that later!

Family Advocacy Days

2011-07-13T22:09:00.004-05:00

http://childrenshospitals.typepad.com/2011allstars/2011/07/meet-thomas-k-parma-oh.html

This will be Thomas' card...like a baseball card that we can hand out to politicians (just in case he doesn't feel like talking).
Thomas and I are getting excited about visiting Washington DC for Family Advocacy Days. Along with patients from other children's hospitals around the country, Thomas and I will be telling our representatives about the importance of children's hospitals!
We know first hand how aggravating and helpless a parent feels when they are not getting answers or the help that they (and their child) not only need but deserves. The first few months after Thomas failed newborn hearing test were a whirlwind of misdiagnosis and needless tests. Not until we arrived at Rainbow did we start getting answers and the ball rolling for Thomas to get hearing aids and eventual cochlear implants.
Although I'm nervous about meeting our reps.... I know how important Children's hospitals are and I'm willing to speak up for them!!!
I'm hoping to take alot of pictures and will be bringing a notebook with me to jot down little notes and update my blog when I get home. I wish I had a phone that had fast internet access..but I don't!

Summer

2011-07-04T11:40:00.004-05:00

We've been enjoying our summer. We try to work on academics a little bit everyday and I've been trying to prepare myself to go out and buy Thomas his school uniforms. I can't believe he will be in school all day in just a few months. I'm going to miss my little buddy. We had his Meet the Teacher night a few weeks ago. She seems very nice and Thomas' best little buddy from preschool is in his class....YEAH! On our way out the assistant principal stopped to say Hi and to let us know that he has been talking with Thomas TOD and educational audiologist (he's had the same since he turned 3 and entered into the our local school district) ~ they will remain part of Thomas' support team at his new school...YEAHHHH! I am SOOO happy!! All of his equipment (batteries, FM system,etc) have been ordered and we are going to set up a date for some of the school personnel, his teacher, myself, assistant principal, TOD and Ed Audi to get together for training! We will also be doing a walk through his classroom to see if there are any changes that need to be made to help Thomas out a bit.
Besides that...Thomas and I have been asked by Rainbows to accompany them to this.... http://www.childrenshospitals.net/AM/Template.cfm?Template=/CustomSource/Calendar/ConferenceDescription.cfm&section=Event_Calendar2&Meeting=2465500_11
I'm pretty excited (and a little nervous) about it ~ I think this will be an experience of a lifetime for both of us. I agreed to it a few months ago and last month a few personal conflicts arose and I wasn't sure that we would be able to go. Jonathan was supposed to come along but I think he will be staying home with my Mom. We were also going to arrive a few days early and stay with my Aunt and Uncle in Fredericksburg...but I think those plans will have to change too! I will be bringing my camera and I hope to come home with some good stories, priceless memories and great pictures!

Graduation

2011-05-25T09:20:00.003-05:00

Today is Thomas' last day of school! I can't believe the school year has gone by so quickly! I love Thomas' preschool...I loved it when Jonathan went there and I continue to love it now. The staff are incredible and we will miss them dearly. I'm hoping I'll be able to occasionally see them while I'm waiting on the corner for the school bus. Jonathan has been taking the bus since a few months into Kindergarten...I would be standing on the corner and I would hear a horn honk..look over and it was Jonathan's preschool teacher! Now that he is in 5th grade he no longer needs (or wants) me to stand and wait for him ~ when Thomas starts taking the bus home...I'll be back on "my" corner patiently waiting for my prince's to arrive.
Tomorrow Thomas graduates. I remember when Jonathan graduated ~ how much he loved to stand up with his friends and sing to all of the adults. He was so proud of himself...and I was too! Friday is the Bubble show and a picnic lunch (keeping my fingers crossed the rain stays away).
I wonder what happened to my little baby boy? I cherish the times when he wants to cuddle with me and watch tv, read books or just talk. Sometimes Jonathan will snuggle with us too! I know soon enough the snuggle time will be no more...but until that happens ~ I'm taking full advantage of our snuggles, cuddles, laughs and talks!!

You heard that?

2011-05-17T09:41:00.006-05:00

Thomas had his Mapping appointment last week. His audiologist is great...very patient and listens to my every concern.
I mentioned to her that Thomas has been periodically saying "what" in response to some of my questions or in conversation. I had checked both ears with the monitor earphones and everything sounded fine. I was glad we had the mapping coming up.
Our mapping sessions have changed since he first got implanted. He is patient and since he loves to hear he realizes that by really paying attention and listening his ears will work better. He did phenomenally! After mapping both ears we moved to the sound booth. Thomas loves the little machine in the sound booth that gives out M&M's every time you hear a sound and press the "button". It still AMAZES me when the audi's voice gets quieter and softer and Thomas continues to press the "button". At one point he pushed the button and he looked over at me and I gave him a half smile (I didn't hear anything). Mapping session was over and I asked the audi what level Thomas was hearing at. She said she got a response at 5db's. WHAT? I didn't hear the noise at 5db's and Thomas did! AMAZING!
A few days later we were in the drive thru at McDonald's. I was giving my order and the cashier said something back to me which I didn't hear nor understand ...I whispered "What?" and from the middle seat of our van with his window shut I hear Thomas say "Mom, say Boy" I quietly responded to the cashier "Boy" and she said "Thank you...please pull around". Again from the back seat I hear "see Mom, I told you. She wanted to know if the kids meal was for a boy or a girl".
Cochlear Implants never cease to amaze me! I am so thankful for Thomas and his special ears. As well as his magnificent team ~ his surgeon, audiologist and speech therapist.

ROCKSTAR

2011-05-09T20:56:00.004-05:00

A few months ago we were asked if Thomas could be included in University Hospital's annual report...we haven't received a copy of it yet but this is the link to look at it online...click on the bottom right hand of the page to flip through...click 7 times and it should lead you to Thomas!
http://http//www.uhhospitals.org/portals/6/docs/about_uh/publications/2010annualreport/index.htm

OK..so the link doesnt work. I'll wait til it comes to the house and scan it in myself. It's pretty cool though ~ this is the picture that they used!

Happy 5th Birthday Thomas!!!

2011-04-16T07:01:00.004-05:00

I can't believe my baby will be 5 on Monday. It feels like just yesterday that we were preparing for "her" arrival (remember...we were told we were having a girl) and when all of the pushing and agony was over we were pleasantly surprised that we had a boy! Allison Elizabeth quickly turned into Thomas John. Fast forward to our discharge day. It was close to 9am and the nurse hadn't brought Thomas in to nurse (he was usually in our room by 6am...and would spend no more than 2hrs in the nursery during the night). My concern was relieved when they rolled him in but as the nurse walked out I noticed a little card in his bassinet. Little did I know how much that card would change our lives.

To say I was devastated in learning that Thomas had a profound hearing loss would be an understatement. No one in our family was deaf, I knew nothing about cochlear implants, we didn't know ASL. How would we communicate? He will never get to enjoy music or singing and dancing! How would he interact with friends? Where would he go to school? questions and questions and more questions would flood my brain...and than the crying would start. For the 1st few months I couldn't say the words "profound hearing loss" without crying. Looking back I feel bad for all of our family and friends that wanted to know how Thomas was doing but had to deal with my tears during the explanation!

What a journey this has been! Thinking back on all of the Dr. appointments, audiology, speech therapy, testing, surgery, activation and mapping ~ it was all SOOOOO worth it. To see Thomas now makes me feel silly for feeling how I did 5yrs ago. All the crying and sadness ~ but it was part of my process. It's how I dealt with things. Thomas is doing phenomenal. I am one of the luckiest women in the world to have been blessed with two of the most amazingly wonderful boys.

Believe me, we have our struggles and stresses but it's all part of our journey! A journey I am thankful to be on!!! Happy 5th Birthday to my little man, Thomas. You amaze me everyday and make me so proud to be your Mom!

Re-evaluations. testing and assessments galore

2011-03-16T04:46:00.002-05:00

Poor Thomas has been through so much testing, re-testing and assessments in the past few weeks he has NOT been looking forward to going to his therapy sessions. Although most try to make it quick and fun....he still doesnt care for it.
I have anxiety. I'm having trouble sleeping...not falling asleep ~ but staying asleep. I wake up thinking.....thinking about the decisions I have to make for Thomas. Where is my crystal ball so I can see into the future to help me with the decisions I have to make today? I want to make sure that everything is in place and that EVERYONE involved has Thomas' best interest when preparing for this IEP.
To tell you the truth, the thought of sending Thomas to all day Kindergarten next year scares me. Preschool isn't bad. I drop him off ...drive down the street back home and pick him up 2.5hrs later. Not much can happen in a few hours (not that I expect it too...his preschool is great). Thinking of my little Thomas away from me for 8hrs worries me. What if something happens at school, what if some kid is mean to him? Makes fun of him? What if Thomas misses something the teacher says? Please God give him the confidence to speak up for himself, to ask questions, ...whether it be to his teacher, school personnel or other students. I can't be with him, I can't stand right next to him and help guide him through his day. I know he has to grow up but he will only be 5.
I worry so much ... as i sit here and type this I'm crying (the lack of sleep doesnt help, I'm sure). We met with the school that I'm leaning towards sending Thomas...they were wonderful. I met with the vice principal and special education coordinator (who does have some background working with the deaf/hoh and he graduated from Gallaudet). He looked at Thomas last IEP and suggested ADDING speech therapy time! I told them that Thomas doesn't like any special attention brought to him...so they agreed that along with pull-out service the speech therapist would come into the classroom and work with him (and some friends). Of course, we will iron out the details when/if that school is chosen. At the beginning of the year we will have a little talk with the other studetns, introduce Thomas and explain what his processors are, what they do, that they are not toys (lol) answer any questions and hopefully make Thomas more comfortable so he doesn't get stares and lots of questions.
For now, I am mentally preparing for Friday's IEP. An invite went out to the 3 prospective schools, Thomas TOD will be in attendance along with the school psychologist, his speech therapist, educational audiologist, his itinerant teacher, myself (maybe Dad if he can get off work). Our private SLP (who has been communicating with the school therapist, teacher and TOD) assures me that everyone does have Thomas' best interest at heart. She is the one professional that knows Thomas the best..she has been seeing him since he was 6mths old. She also knows me pretty well...which is why I received a phone call from her yesterday answering some of my questions and calming my nerves! Thank you Lindsay ~ you are the best!
OK...breathe....breathe...whew! I'm glad I got all of this off my chest. I'm hoping to look back at this post, years from now, and laugh at how worried I was for nothing! But for now I will try to take one day at a time and love my little guys and cherish the time I have with them (and the time they want to spend with me).
p.s.
if you got through this rambling thank you for listening (or reading)!

Decisions, decisions, decisions

2011-02-07T12:45:00.004-05:00

Feb 23rd is Thomas' transition meeting. When we will meet with the "team" (school speech therapist, TOD, director, itinerant teacher and of course, us) to discus the testing that Thomas will go through and more importantly...we have until than to make the decision whether to send him to Kind. or pre-k next year.
I am on the fence with this one. We are still working on the alphabet, spelling our last name (its a hard one), not to mention his address and phone number. Socially he is ready for Kindergarten ~ I'm not so sure with his pre-academics.
I know in time he will "get it" but I don't want him entering Kindergarten behind his peers and try to play catch up. I spoke with Thomas' private SLP and her opinion was that he is ready. She doesn't think that another year of Pre-K will teach him anything more than K will.
I still want to talk with his pre-k teacher(s) to see what they think and of course, the rest of his "team". As for now, we will continue learning the alphabet, our address, phone number and the dreaded last name (never thought of that when I fell in love years ago...lol)

Freaking out

2010-11-29T20:24:00.004-05:00

Last night Thomas was telling me that he couldnt hear that well in his right ear. OK.."no problem" I told him to take it off and to please put his "ear" on the couch and I'll take a look at it when he goes to bed.
Last night was a goofy one...Thomas was in some kind of goofy mood and he didnt get to bed til after 10pm. Long story short....I can NOT find his right processor. Thank goodness for back ups because that is what he is using today. I've looked everywhere. Under the couches, in the cushions, behind tv stands, in the garbage (GROSS...but I had to make sure it wasn't in there) in the toy box, etc. I am driving myself crazy. I am done looking for today ~ I am going to read and (hopefully) get a good nights sleep and *hopefully* I'll find it tomorrow !
Keep your fingers crossed that we find it.

******* Update******
After looking in all of the garbage cans (super gross), toy box, couches, beds, clothes, anything that a magnet can stick to, etc. I sat down at my desk this morning to write out Thomas' tuition check ~ pulled out the sliding top and what do I see in front of my eyes....Thomas' right processor!!!! I must have been sitting at the desk Sunday night when Thomas told me about his ear not working properly....I put it down and finished my work...forgetting for a day and a half where I put it!
UGH...That was stressful!!!!!

Pre-K...Loving It

2010-10-08T16:00:00.002-05:00

Thomas started Pre-K at a mainstream preschool. I debated over this decision most of the summer. A few weeks before school started we finalized plans for Thomas to start Pre-K but still receive itinerant services (what a pain that was...trying to figure it all out and find appropriate appointment times..UGH).
I am happy to say that Thomas is LOVING his preschool. He had made alot of new friends. One of his new friends, Mikey, has the same birthday as Thomas. It was cute...they hit it off on the very first day of school (a 45minute visit).
Thomas' communication had really flourished....his speech sounds are much more clear (although we still have alot of work to do), his conversations have more depth. He goes into detail about things that he didnt before.
I am so happy that we made the decision to go for the mainstream school. Although we did have a few rough days in the beginning. A little boy called Thomas "weird" and didnt want to play with him....it broke my heart and I wanted to punch his Mom~ she just stood there and smiled at me. UGH! The teachers had a conversation with the kids about how people are different (some people have glasses, bumps bruises, and they brought up Thomas' ears, etc). After that no one really asked about "the things on his head".
I also have to work with Thomas about standing up for himself and speaking up, especially if someone is hurting him. Another little kid was upset that Thomas had pumpkin tattoos on his hand so he started rubbing them off. Thomas told me (after school) that it hurt and made him mad...he told him to stop but he wouldnt. I told him he should have told the teacher...he said he didnt want to get him in trouble! UGH!
All in all school is going really well for Thomas (and big brother, too)!

School Tomorrow:-)

2010-09-07T09:01:00.002-05:00

Thomas starts Pre-K tomorrow...YEAH!!!! Actually tomorrow is just a "visit" day...where Jim and I go with him and look around at his new classroom, meet his new teachers and meet some new friends!
At the end of the school year, Thomas' IEP was set up for him to go to his special-ed preschool in the A.M. and his mainstream (pre-K) preschool in the afternoon. After visiting his mainstream preschool and talking with a few people (SLP,family,teacher(s)) we made the decision to send Thomas to only Pre-K program (at the mainstream preschool) ~ although his teacher was disappointed that she wasn't going to be seeing Thomas this year she agrees that this is a great choice for Thomas.
He will attending school Monday -Thursday from 12:30-3pm. Jonathan attended Parma Preschool (mainstream) and both he and I LOVED it! They base their curriculum on the Reggio inspired approach to learning http://http//www.education.com/reference/article/Ref_Values_Reggio_Emilia/ .

In a simple statement.....The Reggio Approach makes the connection between children as co-constructors of knowledge and the importance of reciprocal communication and as a key element of learning. I know Thomas is going to love their hands on approach to learning. Jonathan thrived in preschool ~ he is in 5th grade now and doing phenomenally ~ I know his years at Parma Preschool helped prepare him to succeed in school and in life!

Thomas will still receive services through our city school district ~although we are having a bit of a problem with his itinerant teacher...she is hesitant for us to get together to sign the IEP before she speaks with other professionals at his special-ed school. She looked over his IEP and thinks that some of his "services" are geared for a child with cognitive delays. I told her I don't believe Thomas has any cognitive delays. I mentioned this to his private SLP last week and she couldn't believe it ~ he definitely does NOT have any cognitive delays. So, I left a message and am waiting for a call back!

TV Star

2010-08-09T09:59:00.005-05:00

Thomas and I were asked to be in an internal fundraising video a few months ago for UH. I did blog about it but for some reason it's not showing up. I'll find it on YouTube and post again.
We watched the video and it was fantastic (not just because Thomas was included..lol). We are in it for a few seconds (its actually about 5 minutes long) but it was done really well.
In June we were down in South Carolina visiting my sister in law for her birthday and I received a call from UH asking if Thomas and I would be interested in participating in a media profile for his surgeon (Dr. Megerian). I thought about it for a little while and decided to go for it! Dr. Megerian is an outstanding Doctor and if telling Thomas' story can help just 1 person than it would be worth it!
So, early July we headed down to UH's main campus and I was interviewed, with and without Thomas. Dr. M was interviewed than we went to a local park and we were recorded playing ~ Thomas being a normal kid.
Last week the call came in that the commercial would be aired Thursday (8/5) during the 11pm news and played again Saturday and Sunday during the 9am news. Although I cringe at the thought of being on tv I thought that the end product was great. They condensed 4hrs of recordings into less than 2 minutes ~ at the end of the video Thomas says "I hear real good"....its hard to hear exactly what he said. He was being a bit of a stinker and the 1st time he said " I love to hear thank you Dr" the camera wasn't recording....we tried our darnedest to get him to repeat it but Thomas being Thomas...he knew that we REALLY wanted him to say that and he was being goofy! Oh well!
On Saturday my Aunt took the boys to our church festival (my Grandma was in her final hours of life so we were sitting with her...my Aunt was nice enough to take the boys out to give them a little break). When they came back my Aunt told me that Thomas got recognized! A woman came up to them and asked my Aunt if that was the little boy who was on TV last night...they both said Yes! Thomas was being as sweet as could be and smiled at the woman and talked with her for a little bit!
When I received the dvd I'll upload it and post it on the blog!

This is the link to the UH video on YouTube
the entire video is excellent....we are 33seconds in and 5:04 in

http://http//www.youtube.com/watch?v=cUwzy9G14m8

Baby Smallies

2010-06-20T16:41:00.002-05:00

We are down in South Carolina visiting my sister in law and her husband. We usually make this trip once in the summer and spend a week at their house and a week at the beach. We decided to make a few trips down here this summer ~ this being the first and to celebrate Aunt Shelley's birthday (Happy Birthday Shelley)!!!!
So, Shelley took the boys for a walk on the path behind her house. When they came back Thomas was telling me all about the bugs he saw along the path. He was telling me about these specific bugs that were so tiny they couldnt fly. They just walked wherever they had to go. But (he told me) that when they got bigger they would be able to fly ~ he wasnt sure what kind of bug they were but he was pretty sure they were "baby smallies". I love his imagination. Honestly, when this child starts telling you a story he can go on and on for quite some time ~ he gets pretty deatailed too! You better be listening because at the end of some stories there is a question and answer period (I wonder who he learned that from? lol)

Prayers

2010-06-01T11:37:00.003-05:00

Today Thomas and I get to meet an older gentleman who will be receiving a Cochlear Implant soon! He is a friend of my Aunt's (Grandma's sister) and he is very nervous about what lies ahead for him. My Aunt asked Thomas and I to meet with him and his wife to ease any of their concerns and/or fears about the surgery/activation/equipment,etc! Although every person's reaction is different and some people may not like it I'm hoping that when he meets Thomas and talks to him and asks any questions that it will make him feel better about his decision to get a cochlear implant.
On another note~ We are going through some rough times here. My Grandma was diagnosed with bladder cancer last year ~ she had her bladder and part of her colon removed. Next scan showed a tumor in her breast...she had that removed. This past scan showed 3 different spots of cancer...in 3 different parts of her body. She went through her first chemo last Monday ~ this past week has not been good. Physically she is fine (a little tired and definitely not eating enough) but it really hit her hard mentally. I guess there is a side effect called "chemo brain" where the patient gets confused easily, very forgetful, talking kind of wacky. This has hit my Baba pretty hard. She was supposed to get her second treatment today but it was cancelled. Instead her oncologist wants to see her ~ we don't think will start again. The prognosis wasn't good either way (chemo or no chemo). Without Chemo 6-9mths...with chemo 12-18mths.
My Baba is one of my best friends. She is one person that I can talk to about ANYTHING. I never have to worry about my vent getting out to others or her passing judgement on the person(s) I may be complaining about. She is a part of my daily life. Both of my boys have been blessed to have their Great Grandmother in their life. I pray that Thomas remembers her. She has so much love and so many people love her....I can't imagine life without her.
On top of all of this crap happening to Baba, her hearing is pretty bad. It was bad before (she was having a hard time hearing all parts of a conversation) but now just after 1 treatment its apparent just how bad her hearing loss is. I sent an email to Thomas' audiologist seeing if Baba may be able to use Thomas' old hearing aids. Her insurance won't cover them so I'm hoping that she can use Thomas'! I want her involved as possible in her life...not living in an isolated bubble of silence!
Please keep my Baba in your thoughts and/or prayers!

Thomas and Baba

3 Yrs of Hearing

2010-05-24T20:20:00.002-05:00

I absolutely can not believe that it has been 3 yrs since Thomas' activation of his 1st (right ear) cochlear implant.
I looked back at my blog post of activation day ~ just as I remember....he didnt react! We have come so far in the past 3 yrs. Thomas is my bionic, bilateral boy! He loves school, has lots of friends and amazes me every day:-)
Never did I think that one day he and I would be walking through Lowes talking about the movies we saw the previous day. (I took Jonathan to see Iron Man 2 and my Mom took Thomas to see How to Train a Dragon). He was telling me details of the movie that my Mom didnt even remember until he talked about them. Heck, we passed one guy in the hardware aisle who said "he's a little chatterbox, isn't he?" I looked at the guy and proudly said "Yes,,,,yes he is"!!!! So badly did I want to tell him " excuse me sir...by the way, my little chatterbox is deaf"!
Thomas talks all the time. ALL THE TIME!!!! I seem to think it has alot to do with the constant talking, reading, over-emphasized play (Thomas is a VERY dramatic little guy) ~ he was so used to all of us talking to him about everything and anything that its his turn now!
I have to admit that there may be an occasion or two when i want to ask for "quiet time"....once in awhile I will ask ~ other times I thank God that Thomas can hear and talk to us.
Thomas has also been going to bed with 1 processor on. He told me he likes to talk to Jonathan, listen to me in the kitchen cleaning up and he likes to hear the outside noises. Although yesterday the two kids next door were out kind of late making alot noise ~ so Thomas got out of bed, walked over to his window and said :
"Hey ... why you making so much noise? I'm going to bed now so can you please stop making all that noise?". I stood by his door and giggled. I was pretty surprised when the kids listened to him!
Happy 3rd Hearing Birthday, Thomas!!!! This has been an amazing journey we have taken together ~ I can't wait to see what the future holds for you:-)

Birthday Party

2010-04-26T20:45:00.006-05:00

Looking through binoculars ~ trying to find some birds

The kids getting ready to celebrate Earth Day

He eventually fell asleep on the couch ~ I was given instructions that the super hero's by his feet were to go to his bed with him.

the gifts he received from his Pump It Up Party

Getting ready to open his presents

a quick picture of the kids before we headed to the party room

Whoooo...one of his favorites...the super fast slide

Line up at the beginning of the obstacle course

He loved this slide

Looking for trouble:-)

Getting ready to climb the first part of the course

Happy Birthday, Thomas~~ My Little Love:-)

Thomas turned 4 on April 18th ~ I still can't believe he is 4! He is still having some trouble with /f/ at the beginning of a word (when asked how old he is Thomas will say "gore"). So now, after many, many attempts to get him to say FOUR, when he is asked how old he is Thomas will hold up his little hand and show the person 4 fingers ~ much easier than trying to pronounce /f/. I swear when he starts consistently pronouncing /f/ correctly I am going to throw a big "F" party!!! We have been focusing on other speech goals ~ although during the day we make our bunny teeth and practice the /f/ sound~ he tries and gets it when we take it slow but there is still a hint of "g" in there ...it just frustrates him to no end.
On another note...his birthday party (I should say weekend) was fantastic. On the 16th we celebrated his birthday with family and some of his friends from school and home at Pump It Up. I'm not sure how every Pump It Up is ran but the facility here was outstanding! A few of Thomas' friends have special needs and I was a little nervous about how the staff would approach them and if they were going to treat them any different. I was amazed at just how well these young adults interacted with all of the children. They made sure that all of the kids were having fun ~ that each child had their turn and when it came to the obstacle course there were two outstanding staff members that went through the entire course with any child that needed some extra help. Everyone (kids and adults) had a fantastic time.
Saturday my sister in law came over and brought with her half of Toys R Us! lol Our entire living room was full of boxes, wrapping paper and spiderman, batman and any other super hero that TRU had! Thanks again Shelley ~ you came in the nick of time! I have to take a picture of Thomas lugging around his TRU recyclable tree frog bag with half of his super hero guys in it. Jim is starting to get worried that Thomas may turn into a hoarder! lol
On Sunday (his actual birthday) we celebrated his special Day with a trip to the zoo to celebrate Earth Day. We also went to dinner at our local favorite restaurant and I was a bit ticked when I mentioned to our waitress that it was Thomas' birthday and that I would like for them to sing to him (they really don't sing...but they have a little birthday thing they do)and it never happened. I don't think Thomas cared but I did ~ I wrote her a little note on the receipt. Nothing nasty ~ but I got my point across!
Happy 4th Birthday to my Thomas ~ Whose smile and laugh can bring sunshine to my gloomiest day:-)

Birthday time

2010-04-09T00:21:00.003-05:00

Thomas' IEP is complete ~ signed and sealed:-) I have a few decisions to make regarding next school year ~should we send Thomas back to his current preschool, send him to a mainstream preschool, do both (one in the morning and the other in the afternoon) or send him to mainstream preschool only but it would be in the Pre-K class. I am currently looking into different preschools in our area.
Thomas turns 4 on the 18th! He has been preparing for this birthday for a long time. We are having a birthday party for him at Pump It Up ~ he has invited his friends from school, their parents and of course, our family! There will definitly be more adults than kids ~ I'm hoping that they all have alot of fun:-)
With Thomas' birthday right around the corner it reminds us of his hearing birthday (right side)~ 3yrs! 3 yrs hearing!
I know without CI's Thomas would have been fine. He would have learned sign and done just as well in this world. But honestly, I can't imagine it. I can't imagine not hearing his sweet, little voice, his contagious laugh and I would also miss hearing him yell! I am thankful that we can dance to music he can hear, he can listen to me read him stories, he can hear our dog bark, our cat meow, the birds chirp, his baksetball bounce (and swoosh through the basket...just like "bron james") i am forever thankful he can hear me ~ remind him how much I love him, how proud I am of him ~ for all of his hard work, he can hear me overly pronunciate certain sounds and words that we happen to be working on and especially grateful that he can hear me warn him not to do things (don't run, STOP, watch out, please hold my hand, don't touch,etc, etc etc). I know he can hear all of these things ~ even if he doesnt listen to each and every one of them!
Happy 4th Birthday, Thomas!!! I Love You (and your brother) more than you will ever know:-)

IEP Time

2010-03-20T08:51:00.004-05:00

This is going to be a short post ~ things are going well and we are busy preparing for Thomas' IEP meeting this Thursday. I'm just waiting for a few notes from his private SLP and we should be good! I love his teacher and his school ~ I'm sure we won't have any problems (crossing my fingers). The idea was brought up about Thomas attending a mainstream preschool next year! We would still go back to his "old" preschool for Speech....he could even do both schools. Half day at mainstream and the other half at his special ed school. I'm planning a visit to the mainstream preschool this week...its the same school that big brother went to ~ I know Thomas would LOVE it there!!! On another note ~ I guess we could file this under "amazing CI's" ~ Yesterday afternoon Thomas and I walked to big brother's bus stop. We were standing on the corner waiting for the bus....it was a Friday afternoon so there was more traffic than usual. Add to that all the other background noise...dogs barking, kids yelling, basketballs bouncing, etc. Dad called (he has been in Florida this past week) and he wanted to talk to Thomas ~ I reminded him that we were outside and that Thomas probably wouldnt be able to hear him. Thomas took the phone and had a 5minute conversations with his Dad. With no problems! When I got the phone back he told me that Thomas answered all of his questions and responded with no problems!!! One word...UNBELIEVABLE!!!! This is a video of Thomas singing his new favorite song ~ you can hear how we are still working on /f/ and /l/, especially at the beginning of words ~ but I could hear sit and listen to him sing forever. To think, just a few years ago, I didnt think he would ever hear us, let alone talk....

Throwing Snow Balls

2010-02-24T23:04:00.003-05:00

I took this video a few weeks. My brothers were outside playing in the snow with Jonathan and Thomas. I was lucky enough to watch from inside the house. As I sat by the window I kept getting snowballs thrown at me (the window was shut). Thomas walked over to the window so I opened it up to see what he wanted ~

I think this is amazing....He can hear me and understand what I'm saying even though he is outside and I am inside, there is a bunch of background noise and he has two thick, winter hats on. Thanks again to the miracle of a Cochlear Implant!

Sneaky Therapy??

2010-02-11T14:50:00.002-05:00

I try everyday to get a little bit of actual sit down therapy with Thomas. I also try to sneak in a little bit of teaching while we play. Yesterday we didnt do any "sit down" therapy since he had his school SLP session and his session with his TOD. We're working on "wh" questions and locations (behind/in front/first/last/etc).
Yesterday we were playing with his Batman figures and a few minutes deep into play I start with "Too bad Batman...I'm going to stay here NEXT to your batcave"....."Oh no, I fell BEHIND Mr. Freeze's house"...a few minutes later I start to say something about being the "Last" one to do something ~ all of a sudden he looks at me and says "Mom, you need to stop that, I just want to play". Poor kid...he just wanted to play Batman toys ~ I stopped purposely emphasizing things and just played!
Today on our way to the hospital we passed Thomas' school. As we were passing the street that its on he says to me "Mom, there's my school"...Yep, Thomas ~ that is your school! "Mom~ I love my school" I love your school too Thomas. "My school is just perfect, Mom. Too bad Jonathan's school isnt perfect like my school (he says this last part while giving a sinister little laugh)". I explain to Thomas that
both of their schools are very good and that I love both of them. Thomas' response "Jonathan's school is nice ~ too bad its not perfect". I love that little boy!!!

Mr. Independent

2010-01-14T21:05:00.004-05:00

Thomas' first trip from school on the bus

Starting to get himself undressed

Darn it Mom...why did you put two shirts on me?

He laid his shirt out on the ground to make sure he was putting it on correctly

Last button through the hole ~ Whew ~ he's such a big boy:-)

Thomas had a big day Tuesday...he took the school bus home! I've been dropping him off picking him up since his 1st day ~ I think he's been ready for awhile to take the bus (hmmm..I wonder who wasn't ready? lol). I didn't realize it would be such a big ordeal to get him signed up for the bus..with Jonathan I make a phone call and the next day he's riding the bus. With Thomas there were some phone calls, some paperwork and of course, appending the IEP. His teacher (whom I'm so appreciative of) was a huge help so it went smoothly and it took less than a week.
All weekend we talked about how he was going to take bus home...he would tell pretty much anyone who would listen that he was "bigger, bigger, bigger and he was going to be taking the school bus home". The big day arrived and he was home around 11:30am ~ with a HUGE smile on his face. He LOVED it!!!
Wednesday came and he was disappointed that I was taking him home (I was volunteering at the library). Once we got home he told me he was going to put his pajamas on. I reminded him that we hadn't even ate lunch yet but he didn't care. He wanted to show me what a big boy he was and that he could change himself. He had done it Tuesday night after dinner...he came out of his room with his pajama bottoms on sideways, his turtleneck still on and his pajama shirt on backwards but it didn't matter...we all made such a big deal about what a big boy he was and how proud we were of him. I love living through these accomplishments with Thomas ~ we had such an awesome time going through them with Jonathan ~ its nice to do it one more time!
So I sat down on the floor in his room and he went to work. It was a struggle to get his shirts off (and he did yell at me for putting two shirts on him) but he got the shirts and his pants. He decided to wear Curious George yesterday..the shirt is a button up shirt. He did it all himself. Thinking about that moment brings a tear to m eye....I was so proud of Thomas and he was sooooo proud of himself. The smile and look of greatness he had on his face was priceless! UGH...I have to find my camera!!!!
He wants to start getting himself dressed in the morning ~ so tomorrow I'll be getting him up a few minutes early so he can do it all himself!!!

We've been pretty busy

2010-01-08T14:49:00.003-05:00

Thomas getting ready to bake Christmas cookies in his apron that his teacher gave him for Christmas.
Thomas continues to amaze me everyday. We've already had to append his IEP a few times...the goals that were made last Spring have been accomplished and than some! YEAH THOMAS!!! BTW...Thomas LOVES school. He has made so many friends and his teachers and the staff are awesome!!! I spoke with his teacher a few weeks ago and she recommended a mainstream preschool for next year. She said he is doing so well this year and adjusted very nicely that she believes he would do just fine in a mainstream setting. We go back in for our annual IEP review in a few months...i'm not looking forward to it!
We had a very nice Christmas. The boys received too many gifts but they
"needed" every single one. Thomas would open a gift and say "Ahh..thanks Santa..I really needed_(whatever he had just opened)_." My sister in law came up from South Carolina and the boys spent everyday with her ~ they loved it (and so did I) lol! We spent alot of time with friends and family ~ laughing and having good times! I just took our Christmas decorations down last week...as I took down our artificial tree Thomas stood in the middle of the living room and sang "Oh Christmas Tree, Oh Christmas Tree...I'm going to miss you" (over and over again..with different verses at times)lol

My Grandma was diagnosed with cancer this past year ~ her dr recommended surgery but she declined. She told us she was "ready to go" (btw..she is 85 but she acts like she is 60). She had an app. with a new oncologist who kind of "put it right out there"..without surgery she had 2-6mths to live. That scared the bejeezers out of Baba (what we call her) and she changed her mind and she had the surgery on December 3rd at University Hospital. She was in the hospital for a week than she was sent home...let me tell you those were a sketchy couple of weeks. Her recovery was very slow and she couldnt be left alone AT ALL! Its been a month now and she is doing better...she goes back in for scans on feb 8th...keeping my fingers crossed that all the cancer was taken out.
With the holidays behind us we're back to our same old routine (except for today...today was a snow day). Thomas goes back in for a Mapping on January 21st...I dont think there will be many changes but i am going to bring up the fact that he has been asking "what did you say" more these last few weeks. I'm not sure if its his age (and he's just not paying attention) or if he needs to be fine tuned and tweeked a bit. I checked both processors and they sound fine. Dr. Murray will definitly figure out if there is a problem!
I hope everyone had a wonderful Holiday season and has a very Happy New Year!

Happy Thanksgiving

2009-11-25T16:20:00.002-05:00

I have so much to be thankful for ~ and I really do love this Holiday!!! No worry about presents and who bought what for whom and what he/she REALLY wants (which is what I deal with at Christmas...although I do LOVE Christmas).
I have family coming in from Virginia, North Carolina and Wisconsin ~ the only ones missing are my sister in law and her husband (hopefully we'll see Shelley at Christmas time...its actually on Jonathan's wish list).
I love getting together and sharing special time with my family, talking about the "good old days" and laughing...we laugh ALOT!!!
I am thankful for my two healthy boys, my wonderful husband, my loving family, my wonderful friends, the excellent professional support team we have for Thomas (surgeon/audi/SLP), the wonderful teachers that both Jonathan and Thomas have and off their wonderful friends!!!
I hope each and everyone of you has a very safe and Happy Thanksgiving!!

Scare at the park

2009-11-01T19:12:00.005-05:00

Today was a sunny, cool day. I was VERY tired....we all went trick or treating last night and on the way to my aunt's house Thomas started falling asleep. He told us he wanted to go home and go to sleep (it was 645pm) ~ he still doesnt have all of his energy back from before he was sick.

We stopped home ~Thomas took a quick bath, pj's, books and he fell asleep...FAST! Jim stayed home and Jonathan and I went out to my Aunt's. While we were there somone reminded me to turn my clocks back and that we get an extra hour to sleep. I thought to myself...not me! Boy, was I right!
Jonathan and I got home around 11. He took a quick shower, pj's than right to bed. I didnt get to bed till after midnite (actually 1am). 5:15am I had quite an awakening ~ a wide eyed toddler came running into the bedroom and jumped right on me. Whew... there was no getting him back to sleep. That was it...we were UP!

We did alot of running around yesterday let alone all the trick or treating we did so today was kind of a lazy day. Mid afternoon the boys were getting bored so I took them up to the park ~ there is a nice path with exercise "stops" along the way. I wanted to stay away from the actual park area (swings/slides,etc) ~ I could telll when we drove past that it was a swamp, so I parked on the other side closer to the path. Halfway through the path Thomas took one look at the swings and wanted to go. I tried explaining to him that it was way too wet and muddy ~ he didnt care. He started running through the field (I should say swamp) and Jonathan and I started running after him. All of a sudden he stopped ~ looked back at us and started laughing. I could see one of his ears was falling off and I was calling for him to stop so I could fix it. Nope ~ he started shaking his head (in a "no" way) and there goes one CI...flying off of his head. I yelled "Thomas stop..stop shaking your head"....nope ~ he purposely shook it one last time and the 2nd CI goes flying off. I told Jonathan to stop where he was and I continued to chase after Thomas ~ he slid in a mud puddle so I was able to catch up to him. I picked him up and carried him like a football back to where Jonathan was.

Jonathan and I searched for almost a half hour walking up and down through the grass/water and SOOOOO many leaves. Two beige processors are very hard to find among all the fallen leaves. After about 10 minutes I found one, stuck it back on Thomas' ear and told him to stand in one place and not move. He knew I wasnt happy. Thankfully, Jonathan found the other processor ~ sans battery compartment. Oh well, I was SOOOOOO very thankful and relieved that we found both processors I wasnt worried about looking for the battery cage.

I can only imagine what we looked like walking back to the car. Our tennis shoes were drenched and muddy and our pants were full of mud spatters ~ Thomas was full of mud since he had taken a tumble on his run. We went through all of my wipes trying to get Thomas clean ~ so he drove home in his car seat with just his sweatershirt on, he was afraid someone would see him in his undies ~ so he took his coat off and laid it on his lap.

We have never had this happen to us before ~ we have had the occasional lost processor in the house although my sister in law did have a lost processor episode (I wrote about it here)but never both at the same time and in such an insanely hard place to find it (them) ~those leaves made perfect camoflauge. I hope that this never happens to us again~

T is for Thomas

2009-10-31T07:28:00.003-05:00

Whew..I haven't posted in awhile. Things have been kind of hectic around here ~ too much to get into now!
Yesterday was such a beautiful day. End of October and it was almost 75 ~ a rare treat here. Of course, this morning its chilly, rainy and cloudy ~ ugh! I wish the nice weather would have stayed for Halloween ~ oh well!
Anyway...yesterday we were playing outside ~ football, tag, bubbles, chalk, etc. It was starting to get dark so we cleaned up. While we were cleaning up Thomas says " Mom, T is for Thomas". I said "Good Job, Buddy ~ You're right ~ T is for Thomas" ( I went on to say it was the first letter of his name, blah blah blah....I don't think he was listening).
Than he says "Look Mom.... a T" I looked over at the driveway and saw a perfect "T" written with chalk. I looked over Jonathan ~ " did you write that?" "No, Mom..I did it" said Thomas! Jonathan agreed...It wasn't me Mom, it must have been Thomas.
We walked right up to the "T" and I pointed at it and asked Thomas what it was "Its T for Thomas". I was so excited!!! YEAH......my little guys first letter ~ we all celebrated and clapped and I told Thomas I was so proud of him. He had the biggest smile on his face...what a great moment.
I completely forgot to run back outside and take a picture of it....we were getting ready for bed and reading stories...by the time I remembered to go back out with the camera it had started raining and the "T" was washed away! Oh well, it was still an exciting moment ~ I'll have him draw it again in his book!!

A few of my favorite pictures

2009-09-28T21:03:00.004-05:00

At the county fair ~ the boys were able to pet a baby cow ~ she was born that morning.

This is when Thomas wanted to be a vampire for Halloween ~ he has since changed his mind...a few times!

Who knew the smallest thing could make kids SOOO happy. Both of them were ecstatic about making sand art.

Told you..he was happy!

This picture scares me. We were at the store looking for a new bike for Jonathan. Thomas wanted us to buy him this bike ~

Happy Birthday Baba!!! Myself and Thomas with Baba at her birthday party

The night before this pic was taken the boys were goofing around and Thomas got a teeny scratch below his eye. I put some neosporin on it before school with assurance that a band aid would be waiting for him upon pick up after school. I forgot to bring a small band aid from home..this was the smallest one I had in my purse. We came home, ate lunch, he didn't want to play outside ~ he wanted to watch some tv ~ a few minutes later this is how I found him! Too cute!

Baba and Thomas getting ready to bake

Birthdays, Waterparks and FUN!

2009-09-28T19:42:00.006-05:00

basketball pool

Thomas was SOOO tired in this picture ~ it didn't stop him though

Thomas and Jonathan having fun

Good Times

Thomas telling me that he DOES NOT want to eat "yunch" he wants to go back swimming

We have been busy these past few weeks. Along with our regular routine of school and therapy we celebrated my Baba's (my Grandma) Birthday, had fun at the waterpark and had a great family party for Baba.

Jim and I had planned a trip to Kalahari last month ~ just the 4 of us. I told my brother about it and he said it sounded like fun...long story short ~ after a few phone calls there were 10 of us going. The Friday before we left Jim got called into work so he wasn't able to go but the rest of were ready to go swimming. It had been a few years since we were all able to get together and go away (even if it was for only 1night). We all had SOOOO much fun. I havent laughed that hard and that much in a long time. It was a much needed getaway for all of us.

In the past I have blogged about my hesitance with taking Thomas to waterparks ~ where he doesn't have access to his "ears" at ALL times and he can get so distracted that he can't see me signing or when he knows I'm signing he will do anything in his power to NOT look at me, my hands or my mouth. This kid is good at it!!! There were a few times when we had some screaming (Thomas ~ not me...lol) the temper came out when Thomas wanted to stay in the kids area and it was either time to go eat lunch, take a break or pretty much anytime he wanted to go there and we didn't immediately take him. We spent time in the pool playing basketball (I love that both of my brothers are tall enough to hold Thomas up so that he can get the basketball in the hoop), spent time on the lazy river, had fun in the wave pool and of course, spent more than enough time in the kiddie area (where Thomas must have went down the slides at least 200 times).

My little construction guy

2009-09-28T19:11:00.003-05:00

Last month I was at Lowes and on my way out I noticed a sign that said "Build and Grow" ~ I was running late so when I got home I looked online and found out that Lowes has these clinics where they have children build different things ~ it looked pretty cool so I signed Jonathan up (online it recommended the clinics for 1st-5th graders).

I had prepped Thomas before we left, telling him that he was too young to make his own drum but that we could help Jonathan build his. We arrived a few minutes early so I signed Jonathan in and the associate asked if I wanted "the little guy" to make a drum ~ I said "Really? He isn't too young?" she said "Nope" and handed me another permission slip and a drum kit/apron/safety goggles and hammer.

The boys had the most fun building their drums. Let me tell you ~ it was a great language opportunity, too! We had such a great time that as soon as we got home I signed them up for the fire truck clinic (Lowes has these every 2wks).

This past Saturday was fire truck building and the room was filled to capacity. The 3 of us were squished into a corner and had very little room to build. Since we had limited workspace we laid out one set of directions...I read them and helped the boys build. The previous building experience was great ~ not many people...we had a lot of space to lay our materials out and we were able to take our time. Not so much this time ~I didn't mind though..we still had fun. Let's just say that when we got home I had to take both trucks apart and put them back together again. I put Thomas' sides on wrong , poor Jonathan followed my lead (I was reading the blue prints, just didn't read them correctly...lol). As he was tapping the nails into his 2nd side he asked me if I thought this was the correct way ~ I looked over at his and said "no, I did it wrong, you are right Jonathan". Thomas chimed in with "you are wrong, Mom? Oh no, that's OK, you tried"

If you have a Lowes around you I highly recommend checking out the Build and Grow clinics!

First few days of school

2009-09-03T14:19:00.003-05:00

I LOVE School

I had just picked him up...we saved his Super Star sticker...he kept telling us "I'm a tupa tar"

My boys ready to leave for school

Let's go Mom

Whew..i have calmed down after the whole Tuesday morning fiasco. Its amazing what a difference 24hrs can make ~ lol! Wednesday morning it was much more relaxed and routine...very nice. Instead of getting to school too early (don't want to get yelled at...although I haven't seen that guy again) we stop at the park and talk for a little bit. Yesterday morning the high school marching band was practicing... so we sat and watched and listened to them for a few minutes.

Thomas loves school. He has already made a few friends and I love to talk to him about school. He has so much to say ~ he tells me what they did, what friends he played with, he told me that on the 1st day of school a little girl cried because she missed her Dad ~ and when she started crying it made him sad!

One of my concerns with him being in a special ed classroom came up today. I am not going to elaborate....right now...but if it continues it may become an issue. It has to do with my concern of Thomas picking up other's "habits". I'm hoping what happened today is just a one time thing.

Another thing, Thomas has been coming home tired but WILL NOT take a nap. UGH! He fell asleep yesterday while we were waiting for Jonathan to get to the bus stop..that 15minutes nap is all Thomas needed to re-energize him ~ he was up until 9pm (he's usually in bed by 7). I had to wake him up this morning and he was NOT happy. I'm trying my hardest to keep him up now (its way too late for nap now) I'm hoping he'll be in bed around 6pm today!

Ticked

2009-09-01T07:50:00.002-05:00

I dropped Jonathan off at school at 8:10am. We were at Thomas' school by 8:15. I saw a few vans waiting...I thought even though its early I'll get in line, park and wait. I brought the video camera so I could record how excited he was.
I pulled in..a woman came up and asked if I was a parent or bus (really? I'm driving a mini van with 1 kid in it) I told her a parent and this guy starts ranting how parents should get here at 830....busses at 820...take him today but that's it.
The lady opens the van door ~ I get out to unbuckle him and she tells me to let him out her side..she takes the bag full of supplies and takes Thomas right out of the car....
I wasnt able to say Goodbye....
I wasnt able to say Have a good day....
I wasnt able to tell him "I Love You"...

Needless to say I am PISSED OFF RIGHT NOW!!! It may sound dramatic but this is a pretty big day...I have so many pictures of Jonathan's first day(s) of school ~ I have a few of Thomas in front of the house...none at school.
I go pick him up in a few hours. You bet your @$$ I'm parking and walking up to get him. Tomorrow..I'm parking and walking him in, too!
They obviously had no idea how to handle this new procedure. They did NO run through....it is going to be complete chaos at dismissal. School is supposed to start at 830...I can bet that parents were still waiting in line at 830 to drop their kids off. UGH!
I hope Thomas is having fun. I'm sitting here thinking of that woman taking him from the van and him trying to turn around to see me while she yanked him in to the building. That will NOT happen again!

Open House

2009-08-31T20:53:00.002-05:00

Today was open house at Thomas' preschool. A few days ago I received a letter from his school letting all the parents know that starting the 1st day of school we are to drop off/pick up via car ~ no parking and walking your child in. I read that and thought "YEAH RIGHT... I don't think so". See, because of the school levy not passing (over and over) there were budget cuts and schools were closed and some were consolidated. Thomas' preschool was moved and joined with the daycare (they are in a separate part of the school building). Parking is VERY limited...this morning the staff parked on the playground and there still wasn't enough parking for everyone. I ended up having to park across a main street. So I can see why they sent the letters out...even though its going to rip my heart out to not walk Thomas in on his first day I'll do as I am asked. But let me tell you...if I see one tear come down his sweet, little cheek or if he asks me to come in with him I'll park and run in with him.

Anyway, we walk in and I write Thomas' name on a name tag and stick it on his little shirt. We were escorted to his classroom....He held my hand through the hallway and into his classroom. We met his teacher, I introduced myself and Thomas...he said "Hello Ms Mong, nice to meet you" as I started talking with his teacher about my concerns on dropping him off and how attached he is to me, blah blah blah, Ms. Mong says "I think he'll do just fine..look" I looked over my shoulder and there is my little boy interacting with his new "frunds" ~ playing grocery store and telling them all about the "vegtles" they were holding. He played so well...I was talking with a few other parents and I bent down to tell Thomas that tomorrow I would have to leave, i wouldn't be able to stay with him but I would be there to pick him up....he said "you leave now...bye Mom..miss you...see ya later". Myself and the other mom's had a good laugh.
Although it makes me sad to know that my baby is growing up...that for a few hours a day I won't be there to protect him, to help him and to make sure everything is going well~ I know that he will be having fun, making friends and learning ~
goodness, the past 3yrs have gone by so quickly ~ whew.

Talkin on the phone

2009-08-21T14:21:00.003-05:00

We got back a few days ago..honestly ~ I'm still cleaning up, doing wash, etc. The last load of vacation laundry is in the dryer now.
Vacation was great ..much needed...next year ~ I'm thinking two weeks!!!!
I have almost 200 pictures ~I'll go through them and pick out a few of the best and share them.
Anyway...
Jonathan started school yesterday (Thursday) ..he was nervous but when we picked him up from the bus stop he told us that he LOVED it and was happy that he went back (like he had a choice...lol). Thomas starts school on September 1st ~ Open House August 31st. He is VERY excited about meeting new friends, his teacher and sitting at his desk.
Today we stopped at my Grandma's for a minute ~ Thomas wanted to stay and my Grandma said she would watch him so I left, came home and was able to finish all of my cleaning ~ its amazing how much faster I work without a 3 yr old helping.
I was putting away another load of laundry and my phone started ringing. I looked at the caller ID and seen it was my Grandma. I answered it and she told me that Thomas was fine but he really wanted a meatball sub (I had promised him one this morning ~ I'm not doing a subway run at 7am). She tells me that he wants to talk to me ~ I remind her that he won't be able to hear me but she gives him the phone anyway.
Here's the conversation:

Thomas : Hello Mom ...where are you

Me: Hello Thomas, I am still at home cleaning (I was about to repeat myself...I didnt
think he heard me)

Thomas: Oh..OK Mom. You bringing a meatball sub for me?

Me: Yes, Thomas..I'll stop at subway before I pick you up

Thomas: OK Mom...Bye Bye ~I'm going outside to pick up sticks (we had a wicked storm last
night so there were alot of sticks in Grandma's backyard)

Me: Bye Thomas...I love You

Thomas: Love You Mom, Bye

I was so happy. My Grandma didnt have to repeat anything I said...he heard me perfectly clear and answered all of my questions.
Thank God for the CI...I am able to talk on the phone with my profoundly deaf son!!!

2 days into vacation

2009-08-03T19:00:00.002-05:00

2 days into vacation and we have run into two different people who have had crazy reactions to Thomas' processors.
#1) We stopped to eat on our way down to South Carolina (I forgot which state we were in). Thomas was walking along a curb (holding my hand) and he jumped down and one of his processors fell off. As he usually does, he popped it right back into place and kept walking. As we were standing in line a man walked up to me and asked me "what kind of vacuum held the thing on my babies head"? I had no idea what he was talking about so I asked him (politely) to repeat his question. I tried to quickly explain to him that there was no vacuum...only a magnet that was surgically implanted in my son's head that held the coil on. He looked at me like I was insane and walked away.
#2) We visited a flea market yesterday. There were so many people there selling such different things...it was really a great place to people watch, too! We stopped at a bunch of stands ~ one in particular had a very sweet lady working at it. We were browsing through her items and she came up to us and asked "What those? What those on kids head?" My sister in law started to explain that Thomas was born deaf ~ he had surgery a few years ago to get Cochlear implants so he can hear..." in the middle of my sister in laws explanation the lady says "He can't hear? Thats too bad" so we tried explaining again what they were and what they were for ~ we still got "thats too bad for him...I pray"...I thanked her for her prayers and we moved on. I wish she would have given us a bit more time to explain to her that he could hear but she was very busy.

We have two more weeks of vacation ~ I wonder what else we have in store for us

summer vacation

2009-07-29T09:40:00.004-05:00

Thomas, Nick and Lexi posing on a dino at the zoo

Baba and Thomas having fun at McD's

Thomas at the Irish Festival ~ he heard the Pipe Band and we had to go and find them.

The dinosaur exhibit at the zoo. Thomas was a bit hesitant to stand so close to the dino.

Lexi, Nick and Thomas in front of the date display.
Let me tell you that Lexi is a FANTASTIC babysitter. She is only 15 but knows how to handle Thomas' processors and she is my go to girl when Thomas wants to go swimming! Love ya Lexi!!!!

I can't believe Jonathan starts school in a few weeks ~ where the heck has the summer gone? It's almost August and today is the first day we put our air on ~ it just doesn't seem like summer with temps in the low 70's and rain.

Oh well, we leave for South Carolina in a few days ~ we'll be gone for 2 weeks. 1 week visiting my sister in law and the next week in Myrtle Beach. A few months ago while we were planning our summer getaway we weren't sure where we were going to stay. Last year we had a really nice condo with a kiddie pool (that was too small for Thomas) but he wanted to spend more time in the big pool. Problem 1~ he didn't want to be held and there were no stairs, a constant struggle. With no ears it was even harder trying to explain to him that we HAD to hold on to him. Problem 2 ~ there were kids everywhere and they kept trying to talk to Thomas (while he graced them with his presence in the kiddie pool) and there were a few times when I heard "don't play with that kid ~ he doesn't listen to us" or "whats his problem?".....as the days went by and we seen the same kids all the time I was able to tell them that he was deaf and couldn't hear them ~ they really didn't care so that didn't change the fact that they still didn't want to play with them. All the while my little man stood there not understanding why he couldn't join in the fun (don't get me wrong...there were a few kids that did play with him...one little girl's older brother was deaf and had CI's so she understood).

This year we ended up renting a house with a private pool. No worries about the other kids and their comments (even though Thomas couldn't hear them ~ I could) and the fact that everyone that is in the pool with him will know that he is deaf and can't hear them in the pool and they don't care.

This may not be the best approach ~ but I really don't care. It REALLY stressed me out last year and I didn't want to have to worry about it this year. We will still be spending alot of time at the beach, so he will get plenty of socializing with other people and kids. We are also bringing our foodsaver, swim cap and neoprene head band ~ just in case Thomas wants to hear at the beach.

We tried it a few times at the waterpark and it worked pretty well , but each time I forgot to tighten the magnet so it kept falling off. I am keeping my fingers crossed that Cochlear is close to producing a water safe processor.

He does love music

2009-07-14T08:02:00.006-05:00

On saturday the boys and I were in the car waiting for Dad to get out of the store. It was really storming and Thomas and I were getting bored so I put on some music. I am so happy that I had my camera with me so I could capture Thomas jamming to the music. One of things that made me sad when Thomas was first diagnosed with a profound hearing loss was that he would never hear and enjoy music. Even when we first started looking into cochlear implants I didnt think that Thomas would be able to appreciate rythm, flow or follow a beat. In this video its pretty clear that I have no more worries about Thomas enjoying and loving this music. A few things....you may have to turn the volume down a bit ~ its kind of loud. The rain outside was beating on the car and it was hard to hear the music. Sorry for the lack of light ~ I had the dome light on but the video still comes out dark. ENJOY!

http://www.youtube.com/watch?v=DKU8bm1aOsw

I wanna hear.....

2009-07-04T21:56:00.006-05:00

Thomas waving his little flag in the air

Whew...picked up a piece of candy

This is great...they keep throwing candy ~ thanks guys!!

Jonathan, Nick (cousin) and Thomas ~ before the parade began

Baba (Great Grandma) and Thomas ~ just before he fell asleep!

We just got home from our 4th of July festivities. We went to the Parma Parade this morning ~ it didn't take my boys very long to get the hang of running after the candy thrown by the parade participants.
We came home, ate some lunch and rested a bit before heading over to my Mom' for a barbecue. Since our city (parma) didn't have their annual 4th of July fireworks display my brother and a few of his friends went and bought a few of our own to set off. Shortly after dinner they started and 2hrs later they were still going strong. Thomas had fallen asleep with my Grandma on the porch swing so I knew it was time to go home. We packed up and headed home (a 4minute trip).

The boys got washed up and they put their pj's on and were headed to bed. While I was helping Thomas put his pajamas on Jonathan was talking about how it was going to be hard for him to fall asleep with all the fireworks being set off in our neighborhood (some of them are VERY loud). I put them each in bed, they said their prayers and I gave them kisses goodnight.

I was in the kitchen cleaning up and Thomas walked out of his room and stood next to me. I asked him (he can lip read a bit) what he needed ~ he just stood there looking at me and than looking out the window (you could see some of the fireworks from the kitchen window and I'm sure it was lighting his room up a bit, too). I asked him again ~ what was wrong and he looked up at me and said "I wanna hear,
I wanna hear firwerks" (fireworks)

I hadn't put his processors in the dry n store yet so I grabbed one and put it back on and asked him "you want to hear the booms of the fireworks? and he answered "yes, Mom" ~ "I see em ~I wanna hear em".

So he is sleeping now with one processor on ~ he wanted both but I convinced him that he would be more comfortable with just one on ~ his other ear is reserved for the pillow.
I just went in to check on him ...He is still awake. I asked him how he was doing ~ he said "I yike(like) it, Mom".

First 2weeks of summer vacation

2009-06-16T20:35:00.004-05:00

I can't believe its only been two weeks ~ it feels a bit longer than that (already).
Although I love having both of my boys home all day with me it amazes me how much they torment each other. One minute they can be sitting and playing with their toys or watching a program and within seconds I hear screaming and yelling and than "MOOOOOOMMMMMM". UGH~
To think that I worried that the age gap between Jonathan and Thomas would cause problems (they would have nothing in common, not play with each other, not like each other, etc) they fight like my brothers used to (they are 18mths apart). At times, to quiet things down, I say 2 little words to Jonathan "Summer Camp" and he stops pestering his little brother.
A few days ago I was cooking dinner and the boys were playing in the living room. All was peaceful, too peaceful. Within minutes of me realizing the sweet quietness I hear:
"NOOO Jonathan" (sounds like jontun)
..... i hear Jonathan laughing....
"MOOOOOMMMMM"
....Jonathan saying "stop it Thomas"
Than I hear Thomas say
"UGH Jontun..leave me alone NOW" I see Thomas walk through the kitchen, into his room and shut his door.
Too funny!
Everyday it seems like Thomas is adding more words to his sentences. As long as Jonathan keeps pestering him ~ his vocabulary will keep growing! lol
In this picture Thomas was licking a blue sucker, which turned his mouth and lips blue (which happens to be his favorite color). I told Thomas to go to the mirror and look at his mouth....he walked over and said 'Hey Mom...I got boo whips..look...boo whips ~ boo my favorite color". I LOVED the way he said "blue lips"...every time we visited another family member I asked Thomas to tell them what happened to his mouth when he ate his sucker. He would tell them the story and than end up "boo whips".
I am truly amazed at how well he is progressing ~~ all the pestering and ticking each off is only a teeny part of our day. To watch the boys play and talk and trade Pokemon cards ~ its absolutely priceless!

End of School

2009-06-04T14:19:00.003-05:00

Tuesday was the last day of school for Jonathan, wednesday was Thomas' last day. The only constant that remains for the summer are Thomas' SLP appointments. He went to see his surgeon this past Tuesday...everything is fine..we go back in December. Thomas doesnt have another mapping until August (right before preschool starts) ~ soooo (knock on wood) we have no mappings or dr. appointments for the entire summer!!!! This is the first time since Thomas was born that we have not had any appointments. Don't get me wrong, I love his audiologist and otolaryngologist, but it will be nice to plan outings and vacations without having to plan around dr. visits. The only days we have to plan around are June 23rd (a concert I am going to) and July 18th (cousins grad party).
Everyone is doing well ~ Jonathan was bummed when he came home from school on Tuesday ~ he quickly recovered!! Although yesterday's weather stank...a high of 59 and rain all day. YUCK. Not a great way to start summer vacation. Today is a little nicer..atleast the sun is out!
Thomas' vocabulary is absolutly amazing. I love how we can all be sitting together and having a conversation ~ and Thomas keeps up with it. Answering questions, giving us his opinions, asking questions and tellind us stories. When Thomas is telling me something sometimes Jonathan will interupt, I used to have to remind Jonathan to wait his turn, not any mroe! Thomas will tell him "Stop Jonathan, me talking to Mom now"..I LOVE IT!!!!
We were at Thomas' school the other day waiting for his SLP to come out and get him....Thomas and i were sitting on one of the couches reading a book and the preschoolers were being exceptionally loud ~ Thomas looked over at me and said "UGH..I hate kids". Trying my best not to laugh I reminded Thomas that "hate" was not a nice word and that he didnt actually "hate" the kids, but he was upset that he couldnt hear me read the story. So he said "Sorry kids...i not hate you...be quiet". My little sweatheart.
I am looking forward to a very nice summer with my family. I hope all of you have a very nice summer, too!

Update

2009-05-13T15:35:00.009-05:00

Thomas and my cousin Kealan~ who flew in just for the communion and than flew back the next day~ Thank you again Kealan! That was a great surprise!!

Everyone (but Thomas) waiting to swing!

Goofy picture...my brothers Matthew and Michael, Mike's girlfriend Sara, Jonathan and Thomas

Thomas feeding some deer. It was cute ~ he was explaining to the deer that they had to share. Each deer was allowed one piece at a time (Thomas' rules)..they all kept trying to get the carrots and they weren't listening to him! It was very cute listening to Thomas ~ he sounded like a teacher!

After Jonathan's communion..Thomas REALLY loves his big brother!

Birthday cake:-)

Uncle Mike and Thomas

Jonathan and Thomas before the communion

Thomas loves his new Handy Manny table!

Thomas, Jonathan and Uncle Mitch who came in from Virginia (along with my Aunt Rose and cousin Kealan)for Jonathan's communion

Thomas and some of his birthday presents. he had a very hard time waiting to open them.

Thomas getting his haircut...Ms Laura was asking how much I wanted cut and he chimed in with "just a litte bit".

Its been awhile since I have last updated...sorry! Not much new has been happening. Thomas continues his speech therapy every Tuesday with our private SLP, on Monday's he has a session with his new TOD (she is AWESOME and she and our SLP "know" each other already...Brit (TOD) has a few students who also have therapy with Lindsay (private SLP) ~ I do have to say that the communication notebook is essential. Its a great way for everyone involved in Thomas' care to know what is going on and what specifically is being worked on.
Wednesday mornings Thomas goes to preschool for a session with the school's SLP. He things he is a pretty big deal now...going to "school" two days a week. Although this Fall his preschool will be in a different building (that's closer to our house..YEAH) I am hoping that it won't be that much of a transition ~ with him going a few days now it won't be that bad when he starts going every day.
We have been working on emphasizing the ends of words...specifically "p" and "t". The school's SLP gives him homework every Wednesday which is due the next week. We have also been playing regular preschool games (duck, duck, goose! red light/green light,etc), we have been reading books like crazy!!! Its usually a few books during the day and than atleast 4 at bedtime. We have had to move bath time up to accommodate the increase in books. I don't mind at all ~ Thomas really seems to be understanding the stories and the few books that he REALLY likes (that are read atleast once a day) I will leave bits out or ask him what comes next and 9 times out of 10 he can tell me.
These past few weeks have been busy ~ Thomas' birthday, Jonathan's communion, my brothers birthday, Mothers Day, Hubby's birthday...my Mom is having surgery this friday so she will be off of work all next week. Shame on me for hoping she is feeling better enough in a few days afterwards so she can watch the kids for a day (or two). We'll see if she is up for it. I know that Jim and I would really like a little getaway.
My brother graduates from college next week, than memorial day, mother in laws birthday..a few weeks of peace and than my Mommy night out with one of my best friends for the New Kids concert! I am soooo looking forward to spending the day with Jen, just hanging out (sans kids) enjoying a few drinks and than dinner and than the concert! I love my children with all of my heart and soul but I need a night out to unwind!!
I have so many pictures from the past few weeks...i will pick a few to share~
ENJOY!
Also, I hope all of my blog Mommy Friends had a wonderful Mother's Day ~ each and everyone of you deserves it!!!

Happy Birthday, Thomas!

2009-04-17T18:06:00.003-05:00

This is going to be a quick post...I am rushing around trying to get everything ready for Thomas' 3rd Birthday tomorrow (it is his actual birthday "day", too).
I also have to mark Thomas' anniversary as being a bilateral boy. 1yr ago today Thomas 2nd CI was activated ~ it didnt go as well as I had liked but within a few long weeks he was wearing both processors and within a few months he was loving hearing from both ears.
The decision for the 1st implant was a "no brainer". We wanted Thomas to hear and the CI was our only choice. Thomas' surgeon only implants one ear at a time and for us that was OK (looking back I would have preffered to have them both done at the same time). The decision for a 2nd implant was a difficult one. Thomas was profound in his left ear but he it wasnt as bad as his right ear. He could still turn to sound and hear some things ~ I think our hesitation had to do with cosmetic reasons also. I couldnt imagine my poor little boy having to have these things hanging off his ears and sticking to his head for the rest of his life ~ one side was OK..I couldnt imagine both sides. Looking back I realize how foolish that was but that's how we felt.
Now his processors have become a part of who he is. He wakes up and the processors go on....after bath ~ processors on...coil falls off ~ flip it back on. Its no longer a chore or a struggle. Thomas wants both ears on ALL the time. He loves to hear, he loves to listen, he loves to talk!
I can't believe Thomas will be 3yrs old tomorrow. We have come such a long way ~ it has been a road of ups and downs but it is SOOOO worth it. We are going to have a lovely Birthday party with our family tomorrow ~ we had to call a few friends with little ones to tell them that Thomas is sick so we'll get together next week. I kind of heard the sickies start in Thomas' voice yesterday ~ I thought it may have just been allergies. This morning he woke up with a cough, runny nose, sneezing and he told me his head hurt. Poor kid ~ i do hope he is feeling much better by tomorrow.
Happy 3rd Birthday, Thomas ~ my sweet bilateral boy!!!

IEP..done

2009-04-09T22:08:00.003-05:00

We had our meeting with the school district yesterday. It went fairly quick ~ there was some give and take ~ although the goals set up for Thomas are wonderful I am still not happy with the time allotted for speech therapy. So, we will give it a few months and if I don't think that Thomas is progressing like I think he should than I will request a change be made (and more meetings,etc.)
I pray that the IEP, as it is, will be perfect for Thomas. We will continue with our private SLP for as long as needed ~ carrying along our communication notebook so our private SLP, Thomas' TOD and the school's SLP can all communicate to one another.

These past few days have been quiet with no Dad or Big Brother. It has been nice to not get up at the crack of dawn and rush around and get things done. Thomas and I have been taking it easy, especially in the mornings. He wakes up ~ brings his toys in my room~ crawls up on my bed and snuggles in next to me. Sometimes we fall back asleep but we usually end up talking (he is becoming a pretty good lip reader) or watching the news (or playhouse disney)~ by this time his ears are on!
My older boys are expected home sometime Sunday evening or Monday afternoon (depending on when they leave). Until than, Thomas and I are going to enjoy the peace and quiet and have fun playing with play doh, magic sand, toys, playing school and pretending to be on the school bus (this is when we are in the car going someplace). Thomas and the "kids" are on the bus and I am the bus driver. He will say different things like "OK, kids, put your seat belts on"..."Kids, you have to be quiet"..."Kids, were almost at school". It's pretty cute. Thomas has such a wonderful imagination ~ you can't help but get wrapped up in it and feel like a little kid again. We went to the mall to get his pictures taken today and he even had the photographer involved in his story.
Just a few more lazy mornings ~ and we are going to thoroughly enjoy them before we are back to the hustle and bustle of our regular routine!

IEP...continued

2009-04-05T07:13:00.005-05:00

I don't know why ~ but this past week has been a sort of "hell week". I think I have cried almost every day for some reason or another. I am beyond frustration (which, I think, is the main reason I have been so emotional) with a few things. My main area of concern (and frustration) has been Thomas' IEP.
We had Thomas' IEP meeting this past Wednesday. I am very happy that Anedra was there with us...together we brought up most of what I wanted discussed. I have to admit that I'm not the best at remembering people's names. So when different people kept walking into the room, I was quickly introduced to them ~ told what their title was as they sat down and the meeting eventually started. As the different goals were introduced I was told "Mrs. so and so will be working with Thomas on this"...."Ms. so and so will be with him this time"..etc. I should have brought some name tags so they could have written their name and title on it ~ I would have liked to place a name and face with what they did and how they would be "helping" Thomas. After the 2hr meeting I pretty much had each person and their role imprinted in my brain.
There was myself, Anedra, psychologist, SLP (from school), itinerant teacher, educational audiologist, TOD (whom I found out has worked with our private SLP and our private SLP LOVES her) and a student teacher. There were 8 of us all together sitting around a table big enough for 6. I was told how Thomas did at his evaluation ~ I was told that Thomas does qualify for services based on his hearing loss alone (they go by pre-surgery diagnosis).
There were a few items that needed to be addressed and changed. One BIG one for me was addressed and NOT changed ~ which I was less than thrilled about.
The results from his testing are quite extensive, I won't go into every detail here, but he did test within normal range for both expressive and receptive language skills. Although he does have a moderate expressive language delay, a moderate delay in articulation, final consonant deletion, cluster reduction and syllable reduction.
By the end of the 2hr meeting (which was supposed to last an hour) ~ I left the meeting with the IEP NOT signed. Since the IEP was not signed and I have a few issues that need to be resolved another meeting had to be scheduled. The IEP is supposed to be signed by the time Thomas is 3 (April 18th)...the districts last day of school before spring break is April 9th, they will be on break the week before Thomas turns 3 so they need the IEP signed before the 9th. We scheduled the meeting for this Wednesday April 8th.
I think this is another point of my frustration. Jonathan is on spring break this week ~ we were supposed to take a family vacation to go visit my sister in law in South Carolina. We have ALL been looking forward to this trip. The weather here in Ohio has been pretty crappy and this week's forecast is miserable...rain/snow/wind temps in the mid 30's to low 40's. South Carolina's forecast ~ lower to mid 70's all week ~and sunny!!!! Jonathan was really bummed that we weren't going on our trip ~ we talked and decided that Jonathan and Jim should still go on vacation. So they left this morning around 330am ~ they should be arriving to a beautiful, sunny and warm Columbia early this afternoon.
This may get a little raw....
I am so totally pissed off. I am pissed off that Thomas and I are stuck at home. I am pissed off that although spring has officially arrived the weather here sucks. I am pissed that I feel alone during this process, hubby has decided to take a backseat instead of becoming more involved and taking some of the pressure off of me, I am pissed that when I talk about this to my family they listen but I know they don't understand, I am pissed that this whole IEP process is such a pain in the @$$. The parent knows what is needed for their child to succeed. They know their child best. They certainly know their child better than a professional who played with him for an hour. Certainly better than the professionals who NEVER met Thomas but based their assessments on test scores. We are not asking for alot but the school district barely wants to give a little. Do they understand that he needs these services to stay age appropriate and consistent with his hearing peers? What happened to wanting the best for each child? I won't mention which professional asked this question at our meeting but when I heard "can he even hear the sh sound?" I almost jumped on the table. The audi said "oh yes, he hears the sh sound. that is what is so great about the cochlears..they are so different than hearing aids". I wanted to ask the person who asked this question "Have you EVER worked with a child with CI's before?, If not, please leave". But I didn't. I kept my mouth shut. If I would have said anything at that point I knew I would have spoke in a really $hitty tone ~ I don't want to be labeled "difficult" before Thomas starts school.
I am pissed that we even need to do this IEP for Thomas. I am pissed that he will never have it "easy" in school. I am pissed that the school district doesn't care that he needs some extra help in certain areas. I am pissed that I am not on vacation, I am pissed that its going to rain and snow again. I am pissed that I have not gotten a good nights sleep all week, which I think is fueling my feelings of helplessness and frustration.
Today is supposed to be sunny and cold (rain tonite). I am going to get Thomas bundled up and go for a nice, long walk. This afternoon we are going out with family and watch the Cavs game. I hope Thomas goes to bed early tonite ~ the house will be quiet, I will be tired and I am hoping to get a good nights sleep. After venting in this post, taking a nice hot shower, going on a long, much needed walk, having a good time and alot of laughs this afternoon and getting a full night sleep ~ I certainly hope that this will be the end of my hell week. I haven't had days like this in a long time. Thanks for listening to me and letting me get this off of my chest. I feel better already!!! Keep your fingers crossed that everything gets ironed out with the IEP Wednesday ~ I REALLY don't want this to have to go to mediation! But, I will fight for my kids forever!!!!

IEP Meeting

2009-04-01T09:12:00.002-05:00

I can't believe this day has come already. My little boy is turning 3 in 3weeks ~ which means (for IEP purposes) that his IEP must be completed and signed by April
18th.
I have thought about this for a long time..preparing and freaking out a bit. Thank goodness for early intervention...especially our RIHP outreach specialist, Ms. Anedra. She has been SOOOO helpful helping us prepare for Thomas' IEP. Thankfully she will be sitting next to me today, and she has my permission to speak up if I miss something or if I start to get nervous. She stopped over yesterday and we spent alot of time going over my goals/requests and questions. We went over a sample IEP and discussed what I should do when something is brought up that I dont agree with ~Now i know that I can interject at any time..I don't want to be rude and interrupt them but they have to remember that I am there to advocate for Thomas...I will try my best to be polite and considerate.
Jim was called in to work today so he won't be able to attend the meeting. Which means I will fill him in when he gets home and we will go through every last detail...the IEP will be signed when we both agree on everything written. So the IEP will not be signed today.
I'm not sure why I'm so nervous about this meeting. I pray that it goes smoothly, that Thomas receives everything that we request and that there is no drama. I also hope that I dont start crying. While Anedra and I were sitting around are bounty of papers yesterday I had said "This is really hard for me to put someone else in "control" of Thomas, I have been his primary teacher for the past 3yrs ~ staying at home with him has been an absolute blessing ~ but it also makes it really hard for me to let go of him (even if its only for afew hours a day)". And by the end of my sentence I was tearing up.
A big THANK YOU also goes to Thomas' SLP. Anedra asked her if she could fax/email over her recommendations. At Thomas' therapy appointment yesterday she gave me her recommendations....I brought it home and showed it to Anedra. She read it over and said "this is your IEP". Its perfect! It includes everything we want for Thomas ~ from FM system/speech therapy/audiological services/personnel training/lesson accomodations/supplies/communication/classroom acoustics, etc. After we go over what the school is offering I will hand them Lindsay's (SLP) letter.
I also have a list of Thomas' spoken words/phrases. I hadnt updated it in a few months, as most of you know with our little CI rockstars, its hard to keep up with all of their new vocabulary! So I updated it as much as I could ~ this morning while Thomas and I were chatting I realized that I missed words! Oh well...they will get the point. The list is 7 pages long ~ I will try write in what I think I missed.
So I am going in armed with his book of spoken words, my personal checklist of questions/concerns, Lindsays recomendations, Anedra and a feeling of wanting ONLY the BEST for Thomas. Anything less than that will not be accepted!

For the Love of Music

2009-03-20T09:20:00.006-05:00

In the hurry and rush of every day life sometimes I forget just how lucky I am. I have a wonderful husband, two amazing children, a loving family and great friends.
The other day we were running late getting Jonathan to the bus stop ~ as we pulled up to the stop I seen the bus about 5 blocks ahead of us. Instead of chasing the bus down we decided to have a nice relaxing drive to school! I turned the radio on and there was no good music playing(according to Jonathan) so I pressed play and my new kids cd started playing. It wasnt up very loud so Jonathan and I discussed the "New Kids" and how I have been a huge fan of theirs for years and he was asking me about the different songs. One in particular he really liked ~ so we listened to it 3 times before we dropped him off at the front doors of school.
As we pulled away I turned the music off and started talking to Thomas. We usually talk about what we see~ we count the school buses, find out the color of the car next to us, any airplanes in the sky? etc. As I turned the music off he yelled ~
Thomas~ "NO Mom...Mutic ON"....

Me: "You want to listen to music, Thomas?"

Thomas: "YEAH,...Mutic On"

Me: "OK" (as I turn the radio on and some random song started playing)

He yells "NO" again.

I turn the radio down and asked him what he wanted.

Thomas: "New Tids On"

Me: "You want to listen to the New Kids music?"

Thomas: "Yes, New Tids"

So I put the new kids back on and I watched (in the baby mirror) as my deaf son was thoroughly enjoying music. When Jonathan's favorite song came on Thomas started singing ~ making up his own words of course, but singing in perfect tune with the music. He was trying to click his fingers and his little head was bopping back and forth ~ it was too cute.
I was stopped at a red light and as I watched Thomas singing and dancing tears started to trickle down my cheeks. I am so thankful for his cochlear implants ~ for everyone who has helped us get to this point ~ early intervention (help me grow, RIHP), his CI team (Dr. Megerian, Dr. Murray and Lindsay Zombeck SLP), our family and friends ~ for all of their endless support and the Pediatric CI Circle ~ everytime I had a question or concern (no matter what time of day/night) someone was always there to answer and help.
I am thankful for everyone who has been there with us on Thomas' journey. We couldnt have done it with you!!!

Preschool

2009-03-13T20:29:00.003-05:00

Today I spoke with the psychologist from Thomas' assessment this past Monday. She had a few more questions and I asked her about Thomas starting preschool this April. She told me that she and the supervisor were discussing this very topic and she suggested that since there will only be 6wks left of school (after Thomas turns 3) that we could use their itinerant services ~ bringing Thomas up to school, once a week, for speech therapy. I think this is a wonderful idea! Thomas can get used to going to "school" ~ even though it will only be once a week he will be acquainted to the surroundings and be a bit more prepared when September rolls around.
I should hear back from her next week to schedule the IEP meeting. I can't believe my baby is turning 3 and is getting ready for school!!!

Evaluation

2009-03-12T10:56:00.004-05:00

Thomas had his play based assessment(MFE..multi-factored evaluations) this past Monday~ this is a part of the transition for Thomas to start preschool. I think it went well...I met with the school psychologist while Thomas played with one of the school's SLP's. While I sat and answered questions I could hear Thomas talking and carrying on conversations with the SLP. He played for about 30minutes and than he was finished I heard him say "I done...I go see my Mom".
I have had to fax a few papers over and they are waiting for some test results from Thomas' SLP ~ I am waiting for the call to schedule the IEP meeting. I am pretty sure that he will be eligible for their services based on his hearing loss alone. We took a tour a few weeks ago, met a few teachers and that went well. All of the teachers have masters degree's and the teacher that Thomas would have has alot of experience with deaf/hoh children (and kids with CI's). There is a school a few cities away that we are also interested in. We still have to tour that school and speak with their principal.
I was surprised when the psychologist told us that Thomas would be starting school right after he turns 3 (April 18th). I thought we were going to wait until the start of the new school year. I figure if they do want him to start next month, we'll send him and see how it goes. I don't like the fact that Thomas will be put in a class where students have been in school for the past 7mths. They know the routine, they have their own schedule and they know the rules. This, of course, brings up a few more questions for our IEP meeting!
I think about where we were 2.5yrs ago...almost lost in a world that we knew little about! The only thing we knew for certain was that our baby was deaf ~ these past few years have gone by quickly. Our little boy is getting ready for school ~ I'm not sure if I'm ready for that, yet!

Beautiful Day

2009-03-12T10:44:00.003-05:00

Although it was a chilly day here, Thomas and I spent some time outside and it seems like we talked about everything. From the birds that flew in to eat (we have a few bird feeders around the backyard) to the two squirrels that took turns eating their food. Thomas and I made the decision yesterday to go out and buy the squirrels their own food. They used to hang upside down to try to get the bird seed.
We went up to store and Thomas found the squirrel food ~ he picked the bag he thought we should buy and carried to the clerk. Explaining to her that this was for the "tirls ~ they eat all the bird food"...she looked at me and smiled. She was very sweet and patient and listened to Thomas' entire story.
We got back home and had to immediately go into the backyard and put the new food out. We also put some on our front porch ~ right next to our flower boxes (which have no flowers in them right now). Thomas yelled "Tirls...here's your food...Eat NOW". To his surprise the squirrels did not run over and start eating.
We came inside, washed up and ate some lunch. As soon as we were done eating Thomas walked over to the front window and he saw two squirrels enjoying their lunch. Thomas was ecstatic. We talked about their black eyes, brown fur, long nails, bushy, furry tail, whiskers, the different kinds of food they were eating. How picky they were and the fact that they were a little messy! It was great to sit by the window with him and talk so much about squirrels (who would have thought there was that much to talk about).

Twister

2009-03-04T20:46:00.004-05:00

I have to preface this story with the fact that we have been practicing colors with Thomas for quite some time. Just the basics, nothing fancy ~ and it has been a bit frustrating. While we were practicing yesterday Jim whispers to me "I don't think he cares too much". I think he is right. Thomas doesn't see learning his colors as super important so he doesnt pay close attention ~ no matter how interesting we make it. He usually picks things up pretty quickly~ within the first few times he watched Handy manny he could tell you the name of every tool (pipe wrench, hammer, etc) what its name was (Pat,Turner,etc) and what job they do.
Here goes what happened today....

Today Thomas and I were spending some time at my Grandma's. She fell on some ice last week and fractured her elbow. She had pretty extensive surgery yesterday ~ we picked her up from the hospital today and needless to say she was very happy to be home.

I was doing some cleaning up and my Mom was trying to rest on the couch before she left for work. My Grandma, Baba, was sitting in her super comfy recliner ~ although she definitely was not super comfy.

I walked into the living room and Thomas told me he wanted to play twister. I said "really Thomas? Oh Ok...go in your toy closet and get your twister game". I finished putting some things away and by the time I was done Thomas had the sheet laid out perfectly on the floor. He handed the spinner to me and said "GO, Mom!".

I flicked the little black pointer and it landed on "left foot green"...so I announced "Left foot green". Thomas walked over to green and stood on it.
My Mom and I look at each other..HMMMM~was it a lucky guess?

Spin again ~ right hand red
Thomas walked over to red and put both hands down.

I look at my Mom and smile.

Left foot yellow ~ Thomas found it.
Right foot blue ~ again..Thomas found it!!!

The little stinker knows his colors. At least red, yellow, blue and green! lol We made a big deal about how great he did with all of his colors and when we started to play again he ran around in circles and started acting goofy ~he was done with the game!

Oh well, atleast my Mom and I saw him do it! I want to try to get it on video for our SLP. She has been helping us on this color road and she will be very happy to see that it has finally paid off!!

Its broken

2009-02-28T08:54:00.004-05:00

This morning while I was making breakfast Jonathan was searching for cartooons to watch. He found "Dora" on the menu so he switched to that channel. After a few minutes Thomas came into the kitchen to tell me "my ears broke, Mom". I looked them over and saw that they were both powered on and the correct programs were locked in. I walked into the living room and realized that Jonathan had picked the all spanish channel ~ every word is in spanish. Poor Thomas was watching and listening but not understanding what Dora was saying.
When backpack came on Thomas said "Mom, backpack?" with a very confused look on his face ~ he didnt recognize the backpack song. Thomas got frustrated and walked away. Jonathan took the remote and searched again thank goodness he found Spongebob on one of the Nick channels ~ crisis averted!

Live Webcast ~ Sequential Bilateral Cochlear Implant

2009-02-19T14:46:00.003-05:00

This Tuesday February, 24, 2009 @ 4pm you have the opportunity to watch a sequential bilateral cochlear implant procedure. It will be performed from University Hospital's Rainbow Babies and Children's Hospital by Dr. Cliff Megerian (Thomas' surgeon). Dr. Megerian will perform the procedure and provide detailed narration. Audiologist Dr.Gail Murray (Thomas' audi) will supply additional commentary.
During the webcast you will have the opportunity to email the physicians directly with any questions by clicking the "MDirectAccess" link, it will bring up an email box to send in questions to be answered live during the webcast.
Here is the link...
Webcast of Sequential Bilateral Cochlear Implant

I'm not sure if I will be able to watch the surgery ~ but I thought I would post this information on Thomas' blog just in case anyone is interested. Thomas' CI team are an outstanding team of professionals ~ this should be a fantastic webcast!

HUH?

2009-02-18T12:59:00.004-05:00

I wish I could get a video of Thomas saying his new word, its hard to describe in words. I noticed it the last couple of days but our SLP heard it yesterday for the 1st time and said something about incidental hearing and we all laughed.

Occasionally if Thomas is busy playing or eating and I say something to him he will shoot me a disgusted look and say "HUH?" (sometimes it comes out "Wha") ~ its like a teenager in a toddler body!

On another note~ my Dad's side of the family celebrated the "winter" birthdays this past weekend. I enjoy these parties ~ its fun to get together and talk, laugh and let the kids play with their cousins.

My cousin and his wife had their baby this past November, little Jade Rose is absolutely adorable and I hadn't seen her since we visited them in the hospital. My cousin and his wife were sick so they didn't come to the party but my Aunt and Uncle brought Jade with them. My boys were smitten with her....Jade was talking to Jonathan and he was talking back with her. Thomas was amazed with Jade ~ he was asked if he wanted to hold the baby and he said "Yes". I was a bit nervous but he was so gentle with her ~ it was adorable. Thomas is no longer the baby of the family but I don't think he minds too much!

Belly hurt

2009-02-06T14:24:00.003-05:00

Whew...its been a long week. Last Thursday Jonathan came down with a nasty stomach virus ~ about around 330am and was extremely sick all day. I literally followed him scrubbing down anything and everything he touched. I did not want Thomas getting this icky thing. By Thursday night Jonathan was better and within a few days his appetite came back.
Forward to Saturday morning ~around 230am ~ when I woke up to a toddler standing next to our bed vomitting. OH NO...Thomas got it. I felt so bad for him ~ he kept asking me to take him to the doctor so he could feel better. He was so lethargic ..he laid down all day. I made a little bed for him next to the couch in the living room. His Elmo couch really came in handy ~ it was the perfect bed for him. Now Thomas' icky was different than Jonathan's. Thomas had a very high fever and it lasted over 2 days. Its been almost a week and his appetite still isnt back to normal. Actually, its not even close to what it used to be and its starting to concern me. Add to that the complaining he has been doing about his belly hurting. It will happen at random times and sometimes it will stop him in the middle of what he is doing ~ he looks at me and tells me his belly hurts. I told the pediatrician and he prescribed a laxative for him. He seems to think that Thomas needs some "help" with going to the bathroom. He has been taking it and nothing has changed (the belly hurting thing has been going on over a month). I may give it a couple more days than take him back to the pedi or take him to the hospital (rainbow babies).
On another note...some of you will think I am nuts but we just took Thomas' crib down last week. Yep, he will be 3 in April and he has been sleeping in a crib. He has only tried to climb out once ~ before he was 2~ and never tried again. I think he enjoyed the security of his crib...i don't know. Jim really wanted him in a big boy bed so we took the crib down and put his Thomas bed up. We did this Friday afternoon ~ he got sick that night (very early saturday morning). The first few nights he was getting up at random times ~ but he was still sick. There were also a few times when he insisted on keeping atleast one of his ears in. I'm not sure what that was all about ~ it may have made him feel more secure, I'm not sure.
The past week he has been doing pretty well and will only get up right after we tuck him in. Hopefully he will continue to love his new bed. While we were taking his crib apart we found a few pacifiers that had fallen through to the floor. I told him those were his baby tootsers (our name for paci's)and to throw them away...I walked in to check on him napping yesterday and I saw him with one in his mouth and one on his nose. He must have hid them from me and found them again before naptime.

Thomas enjoying his new bed

The dreaded tootsers!

Language Explosion and Imagination

2009-01-28T10:30:00.004-05:00

We had a great appointment (as usual) with our SLP yesterday. We missed last week's appointment due to a stomach bug (although I do believe I had food poisoning~ that's a whole nother story)...Ms. Lindsay was amazed at how Thomas is doing. She confirmed that he is going through another language explosion. It's great to hear a professional say that...even though I really thought that he was talking alot and family and friends have been making comments it has been "officially" confirmed!
Thomas is like a little boy now...it may sound funny but he no longer talks like a baby. I can carry a conversation with him ~ and I LOVE it!!!! We talk about everything ~ I never thought 2yrs ago that this day would come when my deaf little boy would be sitting next to me and we would be discussing the weather, a tv show (his favorite~ Handy Manny) or pretty much anything.
Yesterday I was making dinner and Thomas walked in with his bat under his armpit. I asked him if he wanted to play guitar here (he will pretend that his guitar is his guitar) and he said "no, I'm hurt....AAhhh Mom...me hurt" I said "You're hurt...oh my goodness...what happened?"
Thomas ~ "I hurt my leg....these my crutches" (as he wobbled away with a bat under his arm)
I stood by my sink peeling potatoes and I teared up. It was so great to hear him not only use his imagination but to use the word crutches. That one really threw me for a loop....he must have been watching some cartoon and someone got hurt and had to use crutches ~ no one in our family or any of our friends have used crutches so a cartoon is my only guess. If he does it again I will try to get it on video ~ or atleast a picture ..its pretty cute.
On another note ~ we have a bunch of snow...AGAIN!!! Jonathan is off of school so we are heading over to my Mom's to celebrate her Birthday. Her school was called off today as well and both of my brothers are off work so we will have a nice family celebration. I'll make sure I bring their snowsuits ~ hopefully my brothers will take them both outside and get rid of some of this energy that both Thomas and Jonathan have ~ and I wish I had a bit of!!!

Swimming

2009-01-21T08:27:00.004-05:00

On our way out ~ waiting for Jim to pull the truck up. It was -15 out...it was nice to jump into a warm vehicle!!

Thomas enjoying the music ~I forgot his tennis shoes..it was either crocs or boots

Jonathan trying to get Thomas down the baby slide. There was a line forming behind him

Thomas with his swim cap on ~ loving the sounds of water and swimming

My boys going down one of the slides. Jonathan and Thomas thought it was funny that Daddy was on the tiny slide!!

We did end up going swimming last week. Thursday we did the swimming cap set up and Friday he went without sound. I think the swimming cap pushed the processor too hard on his head ~ i will have to come up with something to make it softer. I was amazed at how well he heard ~ it was VERY noisy inside the waterpark, the processor was sealed and there was a swimming cap covering everything ~ he still heard us.
We received many comments on how cute he was with his little swimming cap ~ no one seemed to notice bulging right side of his ear. The lifegaurds were talking to him and he was answering ~ we were talking to him and he would answer. It made for a much calmer Mom!
Friday was a bit frustrating. For some reason the coil wouldnt stay in place so after 3 attempts I asked Thomas if he wanted to go in with no ears~ he said YES...took the cap off and ran into the water. UGH...it felt like I was chasing him all over the place. He would climb up the steps to the waterslide and I was gesturing to him to slide down (on Thursday I would say "ok Thomas, slide down ~and he would)and he would just sit there ~ with a line of kids forming behind him. Some of them would start yelling to him to go and he just sat there ~ almost spaced out just looking around. At one point a kid (who was telling Thomas to slide down) said to his friend "what's wrong with this kid...why is he just sitting there". I tried my best to hold it in but I couldnt ~ I started crying, right there in the middle of the toddler pool! Other parents may have thought I was nuts but I thought tears were better than grabbing their children and telling them that my child was deaf and couldnt hear them yelling at him.
Most of the time Jonathan went with Thomas on the slides ~ so they would go on side by side slides and go down together. I knew it wasnt fair for Jonathan to be stuck in the toddler pool so he would go in the wave pool or the hot tub (I should say luke warm tub) with Dad from time to time. There were a couple other little one's in the pool and Thomas was playing with them. The two little girls would start talking and Thomas would chime in (he would see their mouths moving and he knew they were talking) so he would start talking and moving his hands around and the one little girl looked over at him and said "what are you saying? I don't know what you are saying. Get away from us" Jonathan looked over at me and seeing the look on my face steps in and tells the 3 yr old "leave my brother alone ~ you are not being very nice". The little girl didnt care much but I was proud of Jonathan for standing up for his little brother.
All in a all we had a good time. By the time we got home we unpacked, ate dinner and we all went to bed early. Castaway Bay was OK...I'm going to stick with Kalahari from now on though!
Today Thomas and I have our first Toddler storytime at the library. He enjoys reading books and having books read to him so I know he will really like storytime. Afterwards we will grab some lunch and than I am going to the salon for a haircut!

Transitional meeting

2009-01-14T22:07:00.003-05:00

Today was our meeting with our local school district...specifically the special ed. preschool.
I'm not sure why but I was a bit nervous before the meeting...once we arrived and checked in things went smoothly. I registered Thomas and met the secretary ~ the three of us sat in the lobby and Thomas played and watched the students go to the library/the gym/ walking around ~ he really wanted to go with them. I hope his eagerness to go to school is still there in September.
Our Help Me Grow coordinator was there with us and I am so glad that she was. She had asked a few important questions that completely slipped my mind~ whew! We met the director (she was very nice)and spoke about our goals for Thomas and at the end of the meeting we set the appoinemnt for Thomas' Evaluation ~ that will be March 9th.
On another note...the bitter cold has hit us. With wind chills the temp tonite will be between -5/-10. I am watching the news and they are already posting school closings. I am thinking that Jonathan won't have school tomorrow so I am going ahead with the plans for a visit to an indoor waterpark. I am not a person who likes change but I think we are going to try another waterpark ~ I really like the one we usually go to, Kalahari but we are going to go to Castaway Bay ~ I am crossing my fingers that we all enjoy ourselves.
I am again dreading that Thomas will not be able to hear us once he gets into the water. I am very tempted to bring our foodsaver and his swim cap and try out the waterproofing, I'll see how I feel tomorrow. If I feel daring than I may go for it. If he doesnt mind not hearing in the water than it really shouldnt bother me...it kind of makes me sad that he won't hear all the laughing, yelling and rushing water while he is playing. Oh well, I know that both boys will be ecstatic with the surprise outing. Thomas has been talking about swimming for the past of couple days...Jonathan will be excited that he has off (plus he is off Friday for a teacher in service and Monday for MLK) ~ I'll try to pack the car without them noticing and leave it a big surprise ~ we'll see if it works!

Winding down

2009-01-11T19:40:00.003-05:00

Poor Thomas ~ he slid down the hill, landed on his back and couldnt back up without help

Thomas with Uncle Matt and Uncle Mike ~ Jonathan was in this picture until he had snow thrown on him ~ right after this picture was taken Thomas took a mittenful of snow and threw it at Uncle Matthew ~ nobody but Thomas is allowed to pick on Jonathan!

Uncle Matthew and Thomas

Someone forgot to put this swing back in the garage before winter..oh well, the boys had fun playing on it.

Thomas all suited up for fun in the snow!!!

It is Sunday evening...I think having two weeks off for Christmas spoiled me ~ the first week back at school went smooth but this weekend seemed to go by too quick. I can't believe its back to school tomorrow. Oh well~ Jonathan has this Friday and and next Monday off...I would like to plan a little outing somewhere. Thomas and I were watching the news today and they had a segment on "cheap vacations". Every time they showed a picture of a swimming pool or someone swimming Thomas would look at me and say "I go wimmin...lets go, u wanna go?" "Daddy wanna go? Jonchan wanna go?...ok let's go". Daddy came home from visiting a friend in the hospital and Thomas almost knocked him over ~ Daddy quickly understood that Thomas NEEDS to go swimming ~SOON!!!
I have to admit that I cheated a bit yesterday...Jim dropped us off at my Mom's and my brothers played with the boys in the snow. I was out there for awhile but I had my camera in the my hand the whole time...ensuring that I wouldn't get thrown in the snow by either of my loving brothers. My little one's weren't that lucky!
My brothers built a little mountain in the backyard and blew up one of the snow tubes ~ Thomas had so much fun getting pushed up one side of the mountain and sliding doooowwwwwnnn the other side. I am telling you ~ this little man is fearless!!! Jonathan had fun with his Uncle's by running from one side of the yard, jumping on top of the mountain with the tube and sliding down the other slide. Of course, there were also snow ball fights and just goofing around getting tackled in the snow (which is why I had the camera in my hand).
I was a little bit worried about any snow getting in his coat or under his had and reaching his processors but he was pretty well bundled. His snow gear wouldn't win his fashion king of the day but he stayed warm. He hasn't worn his dinosaur hat since last year but it was tight enough that it kept his coils on the entire time..YEAH!!! Unlike last year there was no stopping mid-play trying to get a pair of dry hands in his hat to flop a coil back on.
We all had a great weekend ~ this week is supposed to bring us more snow and bitter cold temperature~ Thursday we may have a high of 2!!!! I better start looking into weekend getaways!!!!

SNOW

2009-01-10T11:45:00.002-05:00

I think we may head outside this afternoon. The boys are driving me crazy~ they both want to go outside and play in the snow. I took the dog out this morning ~ she took one step into the backyard and sunk down so I could only see her head and the top of her body and a bit of her tail. She was loving it.
I havent watched the local news yet but from what I can see I would say we received about 8inches of snow already and it keeps coming. I guess I better go get our snow gear ~ boots, snow suits, hats, gloves, scarves, etc. and head outside. It should tire them out...for some reason they have ALOT of energy this morning. UGH..I wish I had some!!! lol

Start Brushing

2009-01-07T19:24:00.002-05:00

One of the gifts in the boys stockings were new toothbrushes. They each received this kind of toothbrush (Thomas has the Lion King). He refused to throw out his other toothbrush so he has been switching between both.
Tonite after his bath he wanted to use his "tingin toobrah" (singing toothbrush). We put a dab of toothpaste on the bristles and he pressed the button and i heard a very faint "are you ready to brush?" and Thomas said "Yeah". I was pretty surprised he had heard it...I barely heard it. He was busy brushing and when he stopped I heard "you're not done yet..keep brushing" and Thomas answered "Oh..Ok" and kept on brushing.
I don't think I will ever stop being amazed at how much Thomas' being deaf and the eventual receiving of his CI's has changed our lives. There is so much I used to take for granted, hearing wise, and now I am so much more aware of the sounds around us. The sounds Thomas misses out on while he is in the bath or sleeping....and of course, each and every sound he is able to hear with the processors on. And to think back a few years ago and how upset I was thinking that he would never hear me say "I Love You". Not only does he hear me say it to him (and big brother and Daddy) but he is also saying it. It will come out at some of the most random times~ just the other day he walked up to my brother and said "Maffew...I Luv You" my brother really got a kick out of hearing Thomas say that to him.
On another note...I have been having problems with his one processor. In the morning before while I am putting the processors on I do the listening check and for the past few mornings the one processor has had its Sensitivity to "1" and the other is at "10". I am going to try it again tomorrow morning and it if happens I will make a call to the audiologist to see what she thinks is going on.
Next Wednesday (14th) we have our initial transition planning meeting at the preschool Thomas will be attending in the Fall. I can't believe my baby will be 3 in a few months. I'm not sure exactly what is going to happen but I believe its more of a meet n greet..look around at the school..let them meet Thomas and set up the next few appointments. I will definitly update after our appointment!!!

Happy New Year

2008-12-31T10:29:00.004-05:00

This post will be short....(maybe)

Our Christmas was wonderful. We had such a terrific time visiting with family, having fun playing with all the new toys and having lazy days at home. We usually run on somewhat of a schedule ~ let me tell you~ our schedule is completely out of whack!!! Usually this drives me crazy but I have learned to work with it. Thomas hasnt had a nap in a few days and he has been going to be kind of late (9/930pm) but the upside is that he has been sleeping in until 9/10am. This can continue only for the next few days~ once school starts back on Monday we will back to our same old routine (UGH). In the meantime I am enjoying wearing my pj's until mid morning.
The boys each received some great gifts and have had SOOOO much fun going out with Aunt Shelley. Aunt Shelley lives in South Carolina so when she comes up to visit the boys get spoiled rotten. She is such a fantastic person...always willing to help out and so patient (with everyone). You can look back at this post to see what happened to poor Aunt Shelley when we went down to visit her. She was giving me a break and taking all the kids (I say all the kids~ 2 children and hubby) to a local chuck e cheese/dave n busters kind of place ~ you can read to see what happened!
My Aunt Rose and Uncle Mitch from Virginia sent the boys a few more Christmas gifts. Thomas loved the outfit he received so much that he had to put it on right after he opened it. When we stopped over at my Mom's my brother had his rock band set up so Thomas went over by the couch, grabbed the drum sticks and jammed a little bit. He stopped when Baba asked him to keep singing ~ Thomas got upset and put his sticks down. I guess he doesnt take requests. Oh well...I guess the rock n roll outfit brought out his toddler ego. My Uncle is an excellent drummer~ I can't to go visit Fredericksburg and let Thomas and Uncle Mitch rock out together.
I want to wish everyone a Happy and Safe New Years Eve and an amazing, Happy Healthy New Year!!!

Merry Chirstmas

2008-12-24T15:50:00.003-05:00

From our family to yours....we want to wish each and everyone of you a

M e r r y C h r i s t m a s.

We will be busy the next couple of days. Today we made a quick run to the mall~ surprisingly it was not too crowded so the boys were able to ride the train two times. We got home and Thomas laid down for a nap while I made cookies (Jonathan did help a little). When Thomas woke up he was able to help us finish the cookies and decorate them. This evening, after mass, we are going to the hospital to visit my mother in law. She was admitted yesterday and will be in for a few days. We bought her a little Christmas tree, a santa that says "Ho Ho Ho, Merry Christmas (Thomas loved this so I bought the boys one for the home) a balloon and we made some homemade ornaments. We will also be bringing some of our cookies and cakes for the nurses and doctors that have to work during the Holiday's.
Tomorrow morning after opening presents that Santa brings us we are going to head over to my Mom's, open presents and have a delicious dinner. In the evening we are heading over to my Aunt's house where we get together with my Dad's side of the family for more presents, food and family. Tomorrow night my sister in law is coming in from South Carolina and she will be in town until new years eve.
I love spending time with our families...we always have such a great time together talking,laughing, sharing our memories and talking about life. Its not so much about the presents for us (although Jonathan and Thomas enjoy that part) for me its about family and friends. I thank God every day for the blessings he has bestowed on us. I am so thankful for my husband, my two wonderful children, my family, Jim's family and all of our friends. In my everyday prayer I ask God to keep a watch over all of us...help us in our everyday life, in the decisions we have to make and the dilemmas that arise. Please keep us all safe, happy and healthy in 2009!!!
Again...Merry Christmas to everyone!!!!

Santa, Choo Choo and memories that will never be forgotten

2008-12-21T18:01:00.005-05:00

Notice the finger in the mouth? I think Thomas does this when he is nervous. He was doing it for the last 15minutes as we approached Santa.

Mom..I am NOT looking at Santa!!

I am not going to look at Santa OR the camera!

Great~ now he is talking to me. UGH!

Whew...we are done with Santa! Time for the train~ I love the choo choo!!!!

I woke up this morning and took the dog outside...YIKES~ it was COLD. I came back inside and told Jonathan that we will probably just stay inside today and make cookies (I have SOOO much wrapping to do but that has to be done when the kids are sleeping). He answers with "MOM...when are we going to see Santa? We should go today and make cookies tomorrow".
The reason we hadn't seen Santa was due to the fact that the two times that we were within about 200ft of Santa Thomas would stop cold and just stare. Telling us "NO Danta...I no sit with him". The thought of making him sit on his lap and having him scream and yell tired me out. I didn't think that Jonathan (at 9yrs old) still wanted to visit...silly Mom....when he mentioned it this morning I knew he was serious. So we ate breakfast, cleaned up, got ready and headed out in the cold to go to the mall and wait in line for Santa.

Last year we tried pictures with Santa but Thomas screamed and cried and we didn't even get 1 picture taken. The year before both Thomas and Jonathan sat on his lap (Thomas was only 7 mths. old). I remember that visit so well...both Jim and I stood by the camera trying to wave and get Thomas' attention so he would look at the camera. The elf kept shaking the jingle bells and said "he doesn't seem to care about the bells...he's not even looking over here". I answered "He can't hear the bells...he is deaf" (this is after telling the elf in line that he is deaf~ she asked when she seen his hearing aids). "OH...OK" as she continued to jingle the bells, but tried desperately to shake them louder. I prefer that mall but they seemed to want to rush everyone through and you were not able to take your own pictures. The mall we went to this year isn't my favorite but their customer service was great. The helpers were sweet and helpful (even to agitated parents that had been standing in line for an hour~ it seemed there were agitated parents all around us..oh well) and Santa was FANTASTIC!!! The boys sat on each side of him and he spoke to each one. Giving each one a few minutes of his time. As we stood there (taking our own pictures) we watched Santa talk to Thomas, we seen Thomas smile and nod his head, listening intently on what Santa had to say. We said their names so they would look up and we could take their picture (Santa was quite a talker) and Thomas looked right at us. Jim nudged me and said "remember a few years ago the elf with the jingle bells? That seems like so long ago". Thomas has made such awesome progress in the last few years.

I was very proud of Thomas for sitting next to Santa (although as you see in the pictures he did not once look Santa in the eye). He was so brave and didn't cry once. He almost chewed one of his fingers off (just kidding) but he sat there like a big boy and was looking forward to the "dandy (candy) and choo choo ride" they were promised after the visit.

As we walked away they both received their candy cane and Thomas looked over in the direction of Santa and said "bye bye Danta, ank you". After lunch we headed over to a few stores so the men could shop for Mommy. When we met back up Thomas ran over to me and said "Mom...choo choo...les go". I almost forgot~ thank goodness he didn't!!

I was surpised at how well the visit went. We were there early so we only stood in line for about 45 minutes. There was a huge line behind us ~ I am glad we arrived when we did or else I may have turned into one of the agitated parents.

Merry Christmas to everyone!!!

Here ya go, Mom

2008-12-17T09:30:00.003-05:00

That is what I have been hearing all morning. Thomas is starting to get into the Christmas spirit...he will put his Santa hat on~ try to put his blanket around his face (as to look like a beard) and grab some of his toys and hand them out. All the while saying "Ho, Ho, Ho, Here ya go, Mom!"
I will try getting a video of him doing this after his nap.

Barney

2008-12-12T15:10:00.003-05:00

Thomas and I have been finishing the last of the Christmas decorations this afternoon (and I have quietly been going through toys and packing away the ones that he or Jon don't play with anymore).
As I was hanging up the cats stockings (every person/animal gets a stocking and gifts in our family) Thomas was looking through some mail. He was flipping through the pages and saying "I like this...I like this one..etc" and than I heard ..." I like this..Barnee". I wish I would have had my camera..he said Barney perfectly!!!! the "Ba" in the beginning the "r" in the middle and the long "e" at the end. I almost fell right off of the couch I was standing on (I know..not great to show my active little boy Mommy standing on the couch).
All the homework and therapy is paying off...although when I asked him to repeat it he said "ba ee". Oh well...atleast I heard him say it correctly once!!!
YEAH THOMAS!!!!

Test Results

2008-12-10T10:33:00.005-05:00

AGGHHH....Thomas trying to be scary!!!

Here comes Thomas...

running up to me to take the camera and take some "pica"

Daddy and the boys riding ...Mom stayed off and took pictures (plus spinny rides make me sick)

Great Grandma (Baba) with Thomas and Jonathan on her Birthday!!!

Thomas SLP actually sent these to us last week...I am just getting around to posting them today.
Here's the test info:
The test was the Preschool Language Scale-4. It is a test measure that looks at Auditory Comprehension (what Thomas is understanding) and Expressive Communication (what Thomas is saying). Each section is scored and given a Standard Score. This Standard Score is what we use to "compare" Thomas with his peers. The average score on the test is 100. That being said, there is a range of "normal." Anything above an 85, we consider to be within the normal range (so 85 and below we consider to be below average). On the Auditory Comprehension section, Thomas scored a 94 which is considered well within the range of normal/age-appropriate. On Expressive Communication, Thomas scored a 92 which also is considered within the range of normal/age-appropriate. That doesn't mean he demonstrated every skill he should be able to demonstrate (plurals, possessives, pronouns, etc) which would still qualify him for therapy, but does tell us that he is well on his way to catching up with his peers, that he is making more than a year's progress in a year's time, and that he is on track!

For his speech, we used the Goldman-Fristoe Test of Articulation-2. I am trying to remember off the top of my head but I think he got a standard score of 65 or something. That has the same scale as above( 100 is average, we want to see above an 85). I would consider Thomas to have moderate speech articulation delays at this time. He has a wide sound inventory (he uses a wide variety of sounds), and I feel that when he's putting the end of words on, his scores on this test and our ability to understand what he is saying will go up dramatically. I think this is a function of his young age and his younger hearing age.

Thomas is starting to catch on with the ending of words. He can be so dramatic sometimes. I would love to catch one of his episodes on tape. When he is done with homework sometimes he will say "all done" and walk away. Other times it's a full on eye rolling than he will kneel on the ground and put lay forehead on the floor. It is sort of like a melt down but without screaming or yelling...no tantrums!!!

We will keep on emphasizing the end of words. He is starting to use "he" now. When we ask where is Jon he will say "He at koo" or when I ask "where is daddy" Thomas will say "he at wook". Working on pronouns is starting to show in a postive way!!!

Emphasis on the end

2008-12-03T17:51:00.005-05:00

I'm not a very technical person, I don't know the exact name of the language test that Thomas' SLP has been giving him these last few weeks but at our session yesterday she went over Thomas' test scores. We were both happy (I was ecstatic) with his scores ~in the 90's (again...I didn't have my notebook with me so I was unable to write down everything she said..I don't remember exactly what he scored where~ I have an email out to her now...I should be able to update sometime tomorrow with specifics).
This test was more of a general test~ nothing too specific...if he didnt quite get one question and/or picture they moved on to the next or she gave him credit for answering a question partially correct. She will administer another test when he is 3yrs old (it can not be given until the child is at least 3yrs old) which will be more specific and more difficult!
One thing that we are starting to REALLY, REALLY practice is giving emphasis to the end of words. In therapy yesterday he did pretty well with repeating words and giving them some type of ending (even if it wasn't the correct ending)...this morning we made up a game with words~making the end louder , that was fun~ we sat down again this afternoon and did our "homework" (at the same time Jonathan was doing his homework...Thomas loved that they were both very busy doing work). We had a good 10minutes in and than he said "No Mo Mom! I Dun!" He than walked away and went into his room.
We have a binder full of papers with pictures on them and the describing word under it. I have already talked with our family...Mom, Grandma, Brothers, etc. and informed them of our new way of talking. Of course, we aren't going to talk like that all of the time but when Thomas says a word or words and the end is missing we will repeat the word(s) with emphasis on the ending. In time, I am confident that he will catch on. Either that or people around us will continue to think that we are crazy.... for example
Thomas~ "Mom...Da"
Me ~ "Yes Thomas...that it is a browN doG"
Me ~ " She is a pretty browN doG" (if he hasn't tried saying it again)
Me~ "your turn , Thomas....browN doG"
Thomas~ bown DOhhh (at least it is something)
I will do anything to help Thomas acquire all the skills he needs to continue to succeed ~ I am way over worrying about what other people think of us!!!! I am very happy that we are surrounded by family, friends and neighbors that love us, help us out and understand why we do what we do!!!! lol

Manners

2008-11-26T09:21:00.004-05:00

Having and displaying manners is and always has been a big thing for me. I didn't realize until yesterday that Thomas is consistently saying "thank you", "please", and "God bless you"~(when someone sneezes)~ his version sounds like "od et u". We are working on excuse me...he says it sometimes but not consistent (its usually said to our dog Kesha who always seems to be in his way).
Yesterday turned into a big clean up day (due to the fact that it was snowing and even though my accident was 2yrs ago I still get nervous driving in the snow). Thomas and I spent most of the day downstairs going through all of the toys, clothes and misc. stuff that my father in law dropped off for me to give to charity ~ whew...there is alot.
While we were cleaning and rearranging Thomas was right there behind me.
"Mom...eep this?"....
"Hmmm...no, put ..(whatever it was) in that bag please...Thank you Thomas!"
"elcum Mom".
If he was busy playing with toys in one room and I walked out without him noticing within a few minutes I would hear "Where are you?"...clear as day!!! I would reply "I'm in here" and he would follow my voice until he found me and he would say "Dere you are" and we would laugh.
We had a fantastic language day. It was just Thomas and I...quiet~no distractions~ and we spoke to each other all day. There were a few time he would ask for something (juice, toy, etc) and he would walk out into another room...he would quickly turn around, poke his head back in the room and say "Ank U, Mom"...You are welcome Thomas!!!!!!
I think Thomas is hitting one of his language explosions...and its awesome. We were watching Sesame Street the other day and in one scene they were saying the alphabet. He intently watched and repeated each and every letter. Of course, not every one came out perfect but he tried and we did a little "Yippee" afterwards....now he loves doing his ABC's.

Pluralsssssss

2008-11-21T12:39:00.002-05:00

We have been working with Thomas with plurals and pronouns. We have been trying to overemphasize the ending "s" sound.
"Is that Mommiezzzzzz ball?"
"Oh...its Thomasssssss ball!"
"How many truckssssss do you have, Thomassss?"
"Whose truckssss are these?"
etc, etc,etc!

We try and try to get him to give us a any type of ending sound (s or z)....we repeat ourselvesssss a few timessss (lol) and we end up getting a response of "yeah"! He gets it but isnt using it yet. We will keep working and eventually Thomas will get it.
On another note...Jonathan and I were studying for his multiplication test (7's). He went from getting 18 out of 50 in under a minute to 50 out of 50 in 1 minute. Thomas must have been listening to us repeating "5 times 7", "3 x7", "9x7", etc. I asked him to help me help Jonathan. Thomas would repeat the number and there were a few times we heard the "s" after times ~ I know he can do it~ practice, practice, practice!!!

Jessica's Story....very uplifting

2008-11-14T09:35:00.003-05:00

I was watching our local news months ago and there was a story about a young woman named Jessica who has condition called Neurofibromatosis....it causes tumors to grow throughout her body. She has had 20 tumors removed since she was 15.
When I first watched her story it was about her difficult decision to get more tumors removed...1 in particular was pressing on her brain stem and if she did get it removed it would leave her completely deaf. She chronicled her journey through a video blog...and she learned a few months ago that she may be able to hear again...via a Cochlear Implant.
I am so happy that our local news updated us on Jessica (she lives in Michigan).... I am posting the link to her story...I recommend watching the video (click on the video at the upper right)~ it brought tears to my eyes and took me right back to the day of Thomas' activation.
Jessica a true inspiration.

http://www.wkyc.com/news/local/news_article.aspx?storyid=100745&catid=45#comments

I go too, Mommy!

2008-10-26T19:54:00.003-05:00

I wanted to make a quick run to the store today (which means no children). Thomas, Jonathan and Daddy were playing in the living room so I thought I would be slick and try to sneak out the side door.
I very slowly opened the door, walked down the first step, turned around to slowly and quietly close the door and I hear "MOM..I go too" and I look into the kitchen and see Thomas running through to his room to grab his coat and shoes.
My trip to the store was not so quick BUT I was thrilled that Thomas heard the door from three rooms away.

Finally...

2008-10-22T20:15:00.002-05:00

Well, after months and months of Thomas yelling for us after one of his coils would fall off...
DRUM ROLL PLEASE....

Thomas is finally putting his coils back on by himself...EVERY time one slips and I say "wait Thomas, let Mommy get it" he will respond with "NOOO, I do it self".
It doesn't seem like such a big thing to many but its HUGE for us. Before this new found independence, whenever one of his coils would fall off he would dead stop and either yell "EAR~EAR... (insert name of whomever is closest to him)" or if I was anywhere around him, it wouldn't matter if 5 other family members were right next to him, only I would be able to flop the coil back on.
He started doing this by himself a few days ago but its funny how different family members react to it when they see him dead stop (of course, they are waiting for him to yell for help) , he finds the coil and so precisely puts it back in its place. My brothers both seen it for the 1st time yesterday, Grandma seen it earlier today and the boys and Daddy were playing together this afternoon and Dad called for me from another room...I already knew what he was going to say but I humored him and went into the playroom to hear him tell me that Thomas put his own coil back on.
Each time he would do it we would yell "Hooray Thomas" and clap~ Thomas really got a kick out of that!
So we reached a milestone today...My little boy is becoming a little more independent!!!

Back to reality

2008-10-20T12:30:00.002-05:00

Thomas had his 30mth check up today. The nurse took his height, weight and head circumference...everything is on track. She handed me the "Your Child at 30 Months" handout, asked me to undress Thomas down to his diaper and she walked out. While Thomas was busy coloring I was reading over the checklist...
Does your child.....?
Use 3 word sentences Yes

Engage in pretend play Yes

Imitate a facial expression YES

Take an interest in other children Yes

Look at an object to which you are pointing Yes

Bring something interesting over to show you Yes

Display interest in toilet training Yes, sort of...lol

Walk up and down stairs Yes

Kick a ball YES~ already plays soccer like a pro

Say first and last name NO

When the doctor (finally) came in we started chatting and he asked me about the handout..if I had any concerns. I asked him if it was "normal" for a child at 30mths to say his/her full name and he said "yes". UGH! Well, Thomas is not saying his full name. He is just starting to say Thomas ~ I can't imagine getting him to say our last name (even normal hearing adults have trouble with it..whenever we go out and I have to give a name I will usually give a first name). I guess I should have thought about last names back when I was dating!!! lol
We have speech tomorrow so I will ask our SLP what she thinks. Our pedi also had a whole speech fluency test to administer~ which he didn't do. He said it's mainly used to see if a child has a problem and/or delay in any area ~ since he already knows that Thomas is receiving speech once a week and has a diagnosis he didn't give the test. I didn't think too much of it at the appointment but now I am a bit ticked that he didn't give Thomas the test. I would have been curious to see how Thomas measured up with normal hearing peers (according to the speech fluency test the pedi has).
I am going to bring that up with our SLP tomorrow and depending on what she says I may call our pedi back and tell them that I want the test done.

Is this the problem?

2008-10-19T18:52:00.002-05:00

For about 2 wks we have been having problems with Thomas' right processor turning off. At first I thought it may have been the pin pressing on the power button so I would lock the program in after I turned it on ~ it still turned off MANY times during the day.
We than moved on to the battery. I thought it may be the rechargeable battery ~ so we switch over to the disposable batteries. Gave it a few days...still turning off.
We had a CI Support Group Meeting last Tuesday..it was "Ask the Doctors"...Thomas surgeon was there as well as another well respected Dr. from the Cleveland Clinic. Our audiologist happen to there as well as a rep from Cochlear. I spoke with the rep. and she said she would talk with our audi. I ended up sitting next to our audi. so I asked her what she thought the problem would be. She suggested swapping out the coil with our back up coil. That next day I made the switch and it worked. YEAH! Now I have to call Cochlear tomorrow to get them to switch the malfunctioning coil with a new one!

What a weekend...

2008-10-12T19:50:00.003-05:00

Thomas and Daddy on the hay ride

Thomas riding his horse, Georgia. Or as Thomas called her " Come on orja..faster"

Jim...trying to feed the nice cow

The poor cow after she opened her mouth and almost ate Jim's hand...the carrot was on the ground:-)

Close up of Thomas while we were waiting for a table at his new favorite restaurant..Red Lobster.

I am bummed that I have not been able to updload my pictures from this weekend...we took a few from Dad's phone but they do not even begin to describe the fun we had this weekend.
Friday Jonathan didnt have school so myself, my Mom, my brother, Jonathan and Thomas all went out to The Barn restaurant. They have a huge restauran but the big sells for us are the duck pond outside, the cute little shops and the huge corn stalk maze.
While we were eating my brother said "Wow, Thomas is really talking up a storm...he is actually making sentences now". It's pretty cute...I will ask him to go put his crocs on and he will say "Hmmmmm...I like green crocs" (while he is standing in front of all of his shoes) and picks up the green crocs and puts them on. While we were looking for pumpkins "I no like that pumpkin" (sounds like...I no yike at pumkee)...I really have grab my video camera and record these milestone sentences.
We fed the ducks, ate some ice cream, Thomas and Jonathan went through a hay maze (the hay bales came up to Thomas' knees) and than it was time for the HUGE corn maze...the 4 us walked in ( Grandma opted out) walked through for about 15 minutes and ended up at the beginning again. I REALLY had to go to the bathroom so the 3 boys went back in and finished the maze in about 20minutes...enough time for me to go potty and go through one store that Thomas is not allowed in (per Mommy)..it has way too many breakables. A not so quick at the toy store and we were headed home.
Saturday Jonathan hung out with my aunt and cousin so Jim, Thomas and I went to a local farmers market where they were having a fall harvest fest. SOOO much fun. We thought we were going to stop in and only stay for a few minutes..we stayed for 2hrs. There were HUGE language opportunities there. There were animals, music, painting, horse rides, hay rides, pumpkin picking and painting~ and so much more. It was incredible. Jim, Thomas and I talked about everything there (OK..almost everything). From the Big Horses and Little Horses, to the colors of the leaves, different colored paints, animals, sounds...it was unbelievable. We had so much fun. So we picked some pumpkins and painted them, went for a hay ride, Thomas went for a horse ride (for some reason he did not get a pony..he got to ride a full size horse and I tried to hang onto the saddle and run with them at the same time...it was pretty funny..thank goodness no pictures of that were taken). We also were able to feed the animals..Thomas was a bit leery of feeding so he watched us feed and Jim almost got his hand bitten off by a cow...it was hilarious watching a grown man freak out when the cow opened his mouth so big to take the carrot.
When we were done there we went costume shopping. That became pretty boring after the 3rd shop but there were ALOT of things to look at. Thomas and I were pointing out the things that we thought were scary or not scary. "Oh Mommy...that is scary"..."No Mommy...that not scary".
I can't wait for my camera to start working...until than I will post a few pics from the phone!

There is a magnet in his head?

2008-10-01T19:50:00.002-05:00

Thomas and I stopped at a local grocery store today to pick up a few things before picking Jonathan up from the bus stop.
I stuffed Thomas in the cart while we were still outside by the car (he does NOT like sitting in a cart). We were walking in the doors and I hear "BEEP BEEP BEEP BEEP" I stop and look over at customer service...she says 'your fine...don't worry about it".
We were in the store for about 20 minutes....checked out, put the bags in the cart and walked over to the exit door. While walking out "BEEP, BEEP, BEEP, BEEP". The exit was much louder and there were lights to go along with the loud beeping and lest not forget the security guard standing by the exit (she was talking on the phone...I think she was a bit ticked that she had to end her conversation because of all the loud beeping). I explain to the security guard that I did not buy anything that would have a censor on it and that it was probably the magnets in my son's head that triggered the alarm. She made a menial attempt to look through my bags and told me to go ahead. I am sure she had to get back to her phone call.
Thomas and I walked out and we were about ten steps from the store when I heard a voice "Why does your son have magnets in his head?" I turned around and was quite amazed at the following of people I had behind me. I guess there was a hold up at the exit (since I couldnt move out the way...the security guard kept us between the two alarm posts completely blocking the only door to the exit). I am sure they were annoyed that they had to wait an extra minute but they became intrigued when they heard me say that my son had magnets IN his head. Outside of this grocery store I gave an impromptu talk about Thomas, being born deaf, hearings aids, the many medical appointments and finished with the awesome technology that enables my son to hear...his Cochlear Implants!!!
Don't get me wrong...we get asked about his processors and we may get another question or two. But the people we met today were so into learning about a CI and hearing about Thomas...I had to apologize to them~ we had to leave or we would have been late getting Jonathan from the bus. I handed out a few of my cards from Cochlear (which have this blog address on them) and I look forward to hearing from them....and I wanted to thank them for showing such enthusiasm....I truely enjoyed meeting each and every one of them!!!

It's been awhile...

2008-09-17T20:31:00.002-05:00

I can't believe its been almost 1mth since my last update. Oops!!!
Alot has been happening. Jonathan started school and Thomas is less than thrilled that Jonathan gets to go while he stays in the car and we drive away. I may start going back to work out at the YMCA and let Thomas go into the daycare there...I will call it school and he will (hopefully) like it.
Thomas has REALLY been talking ALOT. I have had a few concerns here and there but I asked the appropriate professional (SLP, RIHP,Audi) and my concerns have been adressed and I was again able to relax. I get into these occasionl mindsets that I have not been doing enough for Thomas or that he is not on target like we think he should be, etc..you get the picture. Our SLP gave us an assessment of Thomas and he is actually ahead of schedule (or where they expect a child to be 1yr post act). I was thrilled to hear that.
One of my concerns was that we thought that Thomas was having trouble with comprehension. I was told about a "6second rule" ~ when Thomas gets asked a question wait about 6 seconds...if he doesnt answer try to reword it so he will understand. After a few tries I realized that Thomas did not have the problem...it was MOMMY!!! I needed the few seconds to let him answer. For simple questions like "where is Jonathan?" "who is this?" "where is your truck?" he answers right away...no problem. For more indepth questions "what just happened to the cat?" "Where did the doggy go?" , etc. I wait a few seconds and he will answer..whew...you wouldn't believe how nervous I was getting.
Thomas is also speaking in more 2 and 3 even 4 word sentences. Today we were leaving the store, after taking Jonathan to school, and I said to Thomas "we are going back home..maybe we will see Daddy" and Thomas looked up at me and said "No, Daddy at work...Bye Bye Daddy". Sunday is my Grandma's Birthday and I was tellin Thomas that we have to get ready for Baba's Birthday (we call her Baba) and he said "appy boofday Baba" she will be so excited to hear Thomas say that...it will surely be one of her best gifts.
I should have some more pictures to put up. My Uncle Mitch and Aunt Rose from Virginia came in for Labor Day and we had the BEST time together. My Uncle, myself, Jonathan and Thomas went to the zoo and it brought back so many incredible memories of when my Uncle used to take me to the zoo when I was little...In the 3 days they were visiting my Uncle took over 500 pictures. I am awaiting the flashdrive so I can check them out!!!
All is well over at our house. After Sunday and the 60MPH winds leftover from Ike tore down a few tree limbs at our house~ but that's about it. My Mom and Grandma got hit kind of hard. A few broken windows and torn power lines. They have had no electricity since Sunday night. Although yesterday their neighbor came over and offered to run an extension cord from his garage to their living room...they took him up on his offer. So now they have a lamp and a tv ~ I thought that was really nice of their neighbor. For the first few days while visiting Thomas would pull out all of his trucks and start playing. He would glance up at us and say "te be on" (tv on). i would tell him that the tv is broken so he he would get up and walk over to the tv and try pressing the power button while saying "te be..ON"..he would walk over to the remote and hand it to my Grandma and say "Baba..te be on?" it was really bugging him that the tv and the ceiling fans were not working. Tomorrow night they will be staying at a hotel so the boys and I will stop over so they can swim for a bit.

What a week...

2008-08-22T18:53:00.003-05:00

Thomas enjoying HIS icee.

Thomas enjoying his icee AND Jon's icee (while Jon was at the wave pool with Mama)

These geese were pretty bold but it made for a good language opportunity. We would give this goose 1 piece of food...we would give those geese 3 pieces of food, etc.

These were the geese that preferred to stay in the water. They also got fed, along with ducks and some fish, too! We are definitly going back to this park...we had a fantastic time talking about everything that was around us.

On Sunday Jonathan and I went out for a few hours doing some school shopping while Thomas and Dad were at home..playing and having fun. About 2hrs into our shopping my phone rings ~ it was Jim. He goes on to tell me that Thomas pulled both ears off and when he went to put them back on the window is reading H6. I tell him that means that the coils have come in touch with each other but once he puts them back on his head they should be fine. He than tells me that it was still showing H6. I told him that was impossible and it was probably an H2 or H1 and the batteries needed changing. I told him I would be home in a bit and that he could try swapping batteries so Thomas could hear.
Jonathan and I got home and Thomas was playing (quietly) in the middle of the living room with his right processor on. I called him and he didnt respond. I started waving my hand so he caught a glimpse of movement from the corner of his eye. He saw me and ran over and gave me a huge hug. I sat down to check out what was going on. I about LOST it!!!! Jim had the processors on the WRONG ears. I know this can happen and that I should be more understanding but I made it (almost) foolproof. WHen Thomas received his 2nd CI I put a basketball sticker on his right side...so that whomever was watching him if/when the processor came off would know that the CI with the basketball sticker goes on the right ear...make sure the sticker is facing you when you put the CI on. I even told him that before I left. I called him over to show him his mistake. I hope that was a lesson learned and it won't happen again.
Tuesday we went to the waterpark ~ Jon, Thomas, myself and my Mom. We had a blast and we really enjoyed our cabana. My Mom went and bought the boys each an icee. My Mom and Jonathan went back in the wave pool and Thomas and I stayed in the shade. While Jon was away Thomas had fun drinking from both of their cups. I had to take a few pics of Thomas...doing cheers with the two cups and smiling...knowing that Jonathan would flip out if he knew what Thomas was doing!!!
Thursday was Jonathan's first day of school and Thomas was pretty upset when we dropped Jon off and we pulled away from the school. So we came home and ate some breakfast, did some one on one therapy (played a bit), cleaned up and went to the store. I told him that we could go to the park before we picked Jonathan up so he was happy. When we got to the park he climbed up the steps and walked over to the slide...I kept saying to him "wait, Thomas" but he didnt look over. Darn it..his CI's must have turned off or the coils fells off. I followed him up and seen both coils on. I looke at the left side...it was on. I looked over at the right side..it was off. I went to turn it on and it didnt turn on. I knew the batteries were not dead since we just replaced them the day before. I went to press the button again and SURPRISE...the entire battery assembly had falled OUT! I searched the park and the car..nothing. UGH. At that moment I thought.."good thing he is bilateral or else he would not be able to hear for the next few hours". We were already up by Jon's school so running home and driving all the way back up was not going to happen.
He did fine with just 1 CI but I could definitly tell the difference with just the 1. He had problems finding my voice but after a few tries he would find me and hear what I was saying. Now I am paranoid with the batteries...I make sure they are REALLY pushed in.

Wearing "ears" on the ears

2008-08-04T07:54:00.002-05:00

It has been 3mths since Thomas' 2nd CI was activated. He has been wearing his right(1st) processor with the snugfit/babyworn set up for about the past 8mths. It took a few months of wearing the entire processor pinned to his shirt with the long cord and coil. We eventually started using the snugfit when the babyworn was sent to us.
When Thomas was initially activated back in April he wanted nothing to do with anything on his left ear. So we went back to what we did with the right side.....pinnned the processor to his shirt with the long cord and coil. While we were on vacation he startd pulling the coil off..ALOT! A few days before we came home he pulled the entire thing off and wanted nothing to do with it. He went a few days with only 1 "ear" so when we finally got back home I switched out what I could and also attached the snugfit and babyworn. Last Tuesday I put his right ear on...no problem as usual. I went and picked up the left CI and showed it to him. I slipped it on his ear and he slid down the bed and ran into the living room and started playing. NO problem at all!
I am thinking that with wearing the processor on his shirt he was getting alot of "bad noise" (rubbing from his car seat straps, his shirt rustling, etc) we were spending alot of time in the car driving from place to place and that is usually when he would pull the left processor off of his shirt (we have a few shirts that are now ruined with two big holes in the back from him pulling so hard that the pin would start ripping the fabric...oh well)
It has been almost 1 week and so far (knock on wood) no problems!!!!
We had Jonathan's birthday party this past weekend (today is his actually birthday...Happy 9th Birthday Jon) and I had received alot of comments on how talkative Thomas was and how clear his speech is becoming. We have been trying to get him to repeat things that he has said when they are not too clear. "Thank you" used to come out as "ahh uuu" after some repeating and help he now says "ank you"...still have some problems with "th". He is doing great with multiple commands...can you pick up the dinosaur and give it to Daddy? Can you take your plate and put it in the sink and than put your tray in the kitchen? (after snack time). Although a few plates have been chipped by Thomas helping clean up after dinner...he insists on putting the dishes in the sink ~sometimes not too gentle!
It is amazing how far he has come. To think a few years back at how helpless I felt ~ whew...how far we have come!!!

Some Pictures from vacation

2008-07-30T21:01:00.003-05:00

The boys on the beach. This is the 1st thing we did after arriving in Myrtle Beach. Nothing is more soothing than the sound of the ocean.

This picture was taken at the aquarium at the Riverbanks zoo ~ the jellyfish look so cool!

Thomas couldnt keep his eyes off of Spongebob, Squidward or Patrick...I don't think he could believe that they were "real"...he is used to seeing them on TV.

What a life!!! Thomas spent a little bit of time splashing in the ocean. Once one of the waves knocked him over he got mad and sat down at his toddler paradise! Snacks, Juice and toys!

I thought this ride was going to be calm. I was wrong! We walked on, I sat with Jon and Daddy sat with Thomas. When the ride operator started her speel about directions, etc. I heard her say "no one under 40" is allowed". YIKES! They let him on..they seen how short he is (just 36") I looked over at Jim and being a "man's man" he said "Don't worry, he will be fine!" The ride was fast, spinny and each individual boat spun around. Thomas LOVED it. He kept yelling and throwing his hands in the air whenever the ride operator would ask if everyone was having fun! What a little daredevil!!

Back from vacation

2008-07-28T22:07:00.002-05:00

We got back from our trip this past Saturday. It had been a fantastic two weeks (minus the driving..although the boys did amazingly well for a 11 hr trip).
I forgot just how HOT the south gets! Whew...we didnt get to spend too much time on the beach due to heat (and sand being EVERYWHERE). I mean everywhere...thank goodness for the otter box~ that kept the processors clean, dry and sand free! I have a great picture of Thomas sitting in his beach chair, under the umbrella and in front of his beach tent...the kid had it made! Big brother had a blast with Dad and their body boards floating around the ocean. I went in up to my knee's and that was enough! lol Thomas, being the dare devil he is, wanted to walk in and swim with Dad and Jon..that is until a wave came and knocked him over. I had a really good grip on his hand so I pulled him right back up. He yelled a big "NO" to the ocean and walked back to his toddler paradise that was waiting for him.
When we were in Myrtle Beach we stayed at a beautiful resort with alot of nice people (except for the note that was left for us...long story). Thomas and I were in the pool when a little girl swam over to us and started talking. While we were talking Thomas started talking. The little girl asked me what Thomas was saying. I avoided the question a few times (thinking she was too young to understand CI's and deafness...she was 7) than I started with "Thomas was born deaf and he has things called cochlear implants that help him hear...." I wasnt finished with my sentence when she says "my brother has one of those". I explained a bit further and she looked at me like "DUH..what did I just say?". lol She went on to tell me that her older brother had gotten really sick when he was younger and lost his hearing. He only wears one but he had already lost two of his processors and their Mom wasn't happy about it". She was the sweetest little girl and she and Thomas had an instant bond. It was pretty cool.
I did spend alot of time explaining to different people about Thomas, his deafness, hearing aids and cochlear implants. Now, when Thomas hears me start talking about cochlear implants he will turn his head and show whomever I am talking to his ear and the equipment and than he will say "Hear". It's pretty cute.
We go back to therapy tomorrow. It's been 2 wks since we have been and I do have one concern. Thomas has started refusing to wear his left processor. I am not sure why...so tonite I changed the microphone cover and connected the babyworn cable and the snugfit. He may be getting too much distracting noise from wearing the processor on his shirt (his right side is wore on his ear..left side pinned to his shirt). So, we will see tomorrow morning how he takes to wearing both sides on the ear.
He has really started talking alot. Although his pronunciation isn't that great. (another concern of mine which I will bring up tomorrow). We saw ALOT of semi-trucks, worker trucks(bull dozer, digger, etc) and motorcycles. Whenever Thomas would see any of the above he would say "Daddy has ......" either big truck, truck or motorcylcle. Motorcycle comes out pretty cute...kind of like "otototike". I am going to try to get it on video...to save to show him when he is older!!!
Now, its back to our same daily routine! 3 weeks until school starts (I am already getting sad about that). I am going to try to make the most of my mornings...no rushing...that will come in a few weeks!

South Carolina and the lost controller

2008-07-17T13:41:00.004-05:00

AHHH...I am finally online. Thank goodness for the library computers...I am getting my internet fix! I haven't been online since Saturday ~ whew!
We are having a great time in SC visiting my sister in law and her husband and sister. We did have a bit of a scare yesterday though. My sister in law was nice enough to take the boys out to a fun park so I could get a few hours of "me" time. About 2hrs into their trip I received a frantic phone call from my SIL telling me that one of Thomas' processors was missing. To make a long story short..he must have been sliding down a slide and it got stuck on something and Thomas just pulled and the controller/babyworn got unclipped and fell to the bottom of the slide. My SIL, hubby, and Jonathan were all looking for the piece. Along with 2 very fantastic employees who closed the play area down until they found the missing pieces. Whew...that was a close one. I did feel bad for SIL...she was giving me a break and she ended up almost having a heart attack. We will be here for a few more days than head down to Myrtle Beach for a few days. Than back to my SIL's to pester her some more and than head back home. We are all having such a fantastic time though, we don't really want to go back home too soon!
Thomas is doing very well. Talking all of the time and now that he has more people to impress he loves it!!! He is speech is becoming a bit more clear and he keeps trying to speak in sentences and carry on conversations!!!
My time is almost up on my library computer so I better get going.

Walking With Dinosaurs

2008-07-11T00:09:00.003-05:00

The guys getting ready for the show to start

This the set around the huge black curtain at the front of the stage...these teeth were HUGE!!!

A rare picture of the boys and I. I am usually the one behind the camera!

It has been a couple weeks since since our trip to see "Walking With Dinosaurs" but I had to say that it was amazing. I didn't think that Thomas would like it due to loud noise and scary dinosaurs, but he LOVED it. (he also enjoyed his seat and the way it would flip up whenever he jump off of it or fold up if he would pick his legs up). Jonathan kept his ears covered for a little bit of the show (the dinosaurs roars were LOUD) but Thomas did great. The only thing he got scared of were when the trees came back to life after the "fire" (the green branches kind of sprouted back up from the trunk). As the branches were filling with air Thomas freaked a little and jumped in my lap. Go figure....amazingly loud noises, roars and thunder crashes and he gets spooked by some inflatables! lol
I didn't realize until after our Greater Cleveland CI Support Group meeting last night that Thomas was able to hear me and know exactly what I was saying through the entire Dinosaur show. I entirely attribute that to him being bilateral. Especially since I was sitting on his left(newly implanted) side. The topic last night was "Updates on Bilateral Cochlear Implants" and after the 3 companies gave their talks a panel of a few parents (I was up there...don't even ask how that went...lol) and 3 recipients who all told amazing stories of their life before CI...after initial implantation and than how much fuller their life had gotten after receiving their 2nd CI. Music appreciation was greater, hearing in noisy situations was much easier, their self confidence came back, life was much better for each one after becoming bilateral. We are only 2.5 mths into Thomas' bilateral life but we are seeing some really amazing responses and communication from him. He is trying to speak in sentences (although some of the words are "Thomas words") we can understand a most words in his sentences, he also tries really hard to imitate everything we say (I mean EVERYTHING...even when Mommy gets cut off on the free way).
The first few weeks after activation of his 2nd CI I wasn't too thrilled, and neither was Thomas. I guess I forgot the long road we took with his first CI just a year earlier. After hearing some of the recipients talk last night I know we made the right choice for Thomas ~

Therapy Opportunities are all around us....

2008-07-10T23:13:00.004-05:00

Thomas loves skee ball ~ so much so that he will usually roll 2 balls up at a time!

Taking a very short break to tell me that his shorts are starting to fall down!

Brothers enjoying the warm weather and even warmer water

Thomas and Jonathan flying their own AAAHHHH....airplane!!!!

Dad and Thomas enjoying the lazy river (Thomas did not like not being able to touch the ground so after the 1st trip around he was done)

We have been busy these past few weeks...from our Walking with Dinosaurs experience, to my birthday, the 4th of July, trips to Dave and Busters and Cedar Point, family get togethers and in our relaxing days at home (we have had a few) there are abundant opportunities for language. Today, on one our outings, I was sitting with Thomas on a park bench waiting for Daddy and Jonathan to get finished with their games and a bunny came hopping across in front of us. Thomas said "hop, hop, hop" and he proceeded to throw the baby bunny part of his ham sandwich. We talked about the bunny's colors (he was brown and white), his big ears, his tiny tail, we watched how started to clean himself until another little boy came up and scared the baby bunny away. By the way...Thomas became very upset and told the boy "NO, NO...Boy" in the middle of NO and BOY were a bunch of "Thomas' words" we didn't know exactly what he was saying but we (and the little boy) knew he was MAD!

Before the bunny episode Thomas was in the kiddie pool trying his hardest for me to not catch up with him. I usually have Daddy or Jonathan there to help out...Jonathan is always the sweet big brother/Mommy's helper and will follow Thomas when he is climbing up, down, through or under something that I may not fit through. Daddy and Jonathan were out in the lazy river so it was just myself and Thomas. Thomas climbed up the steps to the choo choo train (which is located in the middle of the kiddie pool) and was pretending to drive it. He was yelling "choo choo"..."bye bye Mommy"...I would wave back and say "bye bye, Thomas". Even though he couldn't hear me (no ci's in the water) I could see him really intently looking at my face...he was reading my lips. When i would say "bye bye" he would repeat it. My little guy is starting to lip read which is coming in handy when we are in the water (and when he chooses to look at me...lol). There was another little girl up in the train with Thomas and she was talking to him and he was following her directions (you stand here...and I will stand there/wave to your mommy) of course, she was also giving hand signals so he followed what she did. But neither the little girl in the train nor her Mother ever realized that Thomas was deaf.

Not having the CI's on in the water does not seem to bother Thomas. In fact, when we made him come out of the water for a break he did not want the CI's back on. Of course, he knows that when they are back on he can't go in the water and he did not want to chance that at all!

In the very beginning of this journey I thought that in order for Thomas to talk, hear and listen would require us spending a great deal of time sitting down and forcing all of this on him. If you knew Thomas you would know that this would NEVER work for him. He is a typical 2yr old that likes to do what he likes to do..whatever that may be at the moment. Thank goodness we have a SLP that allows Thomas the freedom to choose what he would like to do and she will get every sound, noise, word, and turn it into an awesome lesson for both of us.

I wish I knew than what I know now. Yes, Thomas learning how to talk, listen and hear is not as easy as it would be for a normal hearing child...it does require alot of talking on our part, alot of explaining, alot of detail (that other parents probably think we are bit nutty for how articulate, how descriptive and how excited we are about all of these "new" things we find and explain) but it is also alot of FUN! It is awesome to experience all of these things for the 1st time (and the 2nd time, and the 3rd time ,etc) with Thomas. A quick walk through the park is no longer "quick"...its an experience. We try and turn everything into some type of learning experience...and it is no longer something that we have to do...it is something that comes naturally for our entire family! When a plane flies overhead...we all say "AHHHHH (with voice fluctuating and hand going up in the air)...at the same time. Of course, we do enjoy our down time...where we sit back and relax and let them play and have fun..and just be kids!!!!

Why do problems occur on weekends?

2008-06-22T12:31:00.002-05:00

I guess I had gotten a bit over confident with Thomas' processors. Whenever I have had a problem..I would call Cochlear and they would send me whatever was needed (a new coil, magnet, controller unit,etc) within a few days.
For well over a month now we have been having a few problems with Thomas' right (1stCI) processor. When I would go to turn it on instead of blinking H3 it would give a slow blink and when I would place the coil on Thomas it wouldnt change from H3 to P3...it would stay on H3. So, I would take the battery out, put it back in or turn the unit off and back on. At our last Mapping we told Dr. M about it and she immediately called Cochlear and had them send us a new controller. That was on a Thursday and we didnt receive the new unit until the next week. I swapped out the controllers and we are still having the same problem. But now, it has gotten much worse. For no reason at all the entire until will just shut off. Thomas threw a HUGE fit in the car yesterday, he started yelling and pointing to his ear. From my baby mirror I could see the no red light was flashing and the coil was still in place. I pulled over and unclipped the unit and found that it was off. So I tried over and over again to turn it back on...NOTHING! I took the battery out...put it back in... try to turn it on...NOTHING! Of course, the left side was blinking and at H1 ...no battery! UGH...So Thomas rode home in silence ~and he was NOT happy about it.
When we got home I put new batteries in his left side. Whew..thank goodness he can hear pretty good from that side!! Now on to the right side. I took the battery out and went and got a new battery, put it in and it turned on! YEAH. I looked at the display to make sure that it was on P3 and there were a bunch of lines. I couldnt read anything. Than the screen went blank. I took his left side off and called his name and he looked over and smiled so his right side was on~ but no display was showing.
So far this morning we have had no problems (knock on wood). Thomas is napping now, I am hoping that we continue a trouble free afternoon and evening. I will be calling Cochlear first thing tomorrow morning!!!

Language Explosion

2008-06-18T20:26:00.003-05:00

Thomas speech therapist had told us to expect a language explosion within a few months of Thomas' 2nd Ci activation. I smiled and waited....and waited...and waited. Our last few appointments she reminded me that it had not been that long since activation and to not feel bad about Thomas' progress. It seemed to both Dad and I that Thomas was doing alot of baby talk. Alot more than he did pre-2nd CI. He would do baby noises and sounds and not speak very clear.
I think today was the 1st day of his explosion. My Mom had mentioned something to me today about how much Thomas was talking. NO baby talk but trying complete sentences. One example:
My brother had his can of pop on the counter. Thomas kept pointing to it and doing the sign for drink. I took his sippy cup and put a little bit in and gave it to him. He took one sip and being surprised at the fizziness, dropped the cup on the ground. When he went to pick it up some of the fizzies started spraying up from the straw. He immediately started laughing and telling us that the pop had went on his nose, his hair and his shirt. I can't describe exactly how he spoke, and I wish I would have had my camera close by, but it was so cute. His little voice was so cute....." ah bub doo hair , tee noo fee nose " of course it wasnt exactly like that but you get the picture. He knew what he wanted to tell us but he didnt know the exact words to use. We would get a word or two that we knew...me, hair, nose, dirty....and fill in the rest of his sentence with cute little Thomas words. I LOVED it!!!!
A little while later Thomas and I were sitting in the backyard swinging. You could hear the cars driving down the street, you could hear the squeak of the swing and the rustling of the leaves from the wind. All of a sudden Thomas pointed to his ear and looked at me and said "Oooh, Oooh". I was wondering what he was trying to tell me. I sat back and than I heard it. It must have been some bird (maybe a pigeon) making the "whoo, whoo" sound...just like an owl (I highly doubt it was an owl) but since we already say "chirp, chirp" and "tweet tweet" for birds I didnt want to add "whooo, whooo" for another bird. So I told Thomas that it was an owl. We sat and swang for another few minutes and every time we heard the "owl" we would look at each other, smile, point to our ears and repeat the sound and I would remind Thomas that it was an owl.
When we finally got home Thomas was delighted to see the tree trimmers and their big truck were still on our street. We sat on the steps to watch it drive by. Thomas started pointing to the end of the street and was saying "hat" and pointing to his head. I looked over and saw a worker that was wearing a hard hat waiting for the truck to come back so they could start cleaning up all the tree limbs they had cut. The guy had to be about 10 houses down when he sneezed. I could barely hear him. Right after the sneeze Thomas pointed to his ear and I said "did you hear that? that man sneezed! Bless You, worker man" and Thomas said "bet oo, man"! I loved that he heard something so quiet as a sneeze from that far away. I also love that he repeated the bless you, we have been working on that and occasionally he will say it on his own.

Waterparks

2008-06-09T12:17:00.005-05:00

My emotions have been up and down thinking about going back to the water parks. When Jonathan was younger (before he started Kind) my family and I would go to an indoor water park every few months. We all had a fantastic time and when I became pregnant with Thomas I was excited about bringing him with us on our trips.
As the years have gone by(since Jonathan has been born) more indoor water parks have been built (Kalahari, great wolf, castaway bay) along with Cedar Point having a very nice outdoor water park, soak city. So, within an hour drive of where we live we have some pretty great choices of what kind of water fun we want to have.
Our last trip to Kalahari was last summer...we did not go anywhere this past winter, which is very unusual. No one had said anything to me but I think they knew why I hadn't planned anything for us.
The time I had been silently dreading had come this past weekend. My Mom and hubby both mentioned going to wild water kingdom (geauga lake has closed but they kept their water park open). It was a great idea (it is VERY hot here) and we had nothing planned for this past Sunday. So I had agreed and I started packing our swim stuff Saturday night. I looked all over for our otter box and I couldn't find it. I knew it would be too small for 2ci's but I wanted to at least take 1 with us around to the different rides so I could pop it on and explain to Thomas why we were leaving 1 area and going to the next. The new otter box I had ordered last week hadn't come in yet so I was screwed. I would have to leave Thomas' CI's in their case by our seats.
When I was talking with my Mom Saturday night she said to me "it's ashame that Thomas won't be able to hear all the noise, music and water rushing around him"...I said "yep" and I changed the subject. I wanted to say "REALLY? it will be ashame? Don't you think that this what I have been thinking about for the past 2yrs? Do you realize that this is why we haven't done anything pertaining to water (besides baths, of course) for the past 2yrs?...But I didn't say it. I kept it inside and didn't want to start yelling at my Mom. She didn't deserve it...she didn't even realize what I was thinking. Of course, when I got off the phone I cried like a baby thinking of all the sounds he was going to miss. But, I got ahold of myself and finished packing all of the snacks and suits for the next day.
Sunday morning we woke up, fed Thomas breakfast and left for WWK. We stopped at Mc'D's so Jonathan and my Mom could eat and we were at the park by 1045am. We kept asking Thomas if he wanted to go swimming and he would say "yeah" and nod his head up and down. We would ask him if he wanted to jump in the water and he gave us a BIG "YEAH". I knew he would love the water because he loves to take baths...he tries to jump and swim and go under the water and he hates to get out. When we walked in and got to our space under the canopy Thomas sat in his stroller very wide eyed trying to take it all in. He climbed out, got his swim diaper, sun block and swim trunks on and he was ready to go in. He was sitting on my lap and I told him "Thomas, if you want to go in the water you have to take your ears off. Like when we go for bike rides. You can't wear your ears". He looked up at me and flicked off his right CI (the other one is pinned to his shirt) and gave me a big smile. I knew he was ready...was I?
We spent some time in the kiddie area. They have a few slides and Thomas LOVED them. I can't tell you how many times Dad and I went up and down the steps with Thomas. We than headed over to the wave pool. Thomas did not care too much for this because he had to wear a life jacket (which at first the lifeguard said we could put over his body glove float suit). After we took his suit off and put his swim trunks back on (don't worry...the swim diaper stayed on the entire time...lol) he was a bit happier with the life jacket. He especially loved when the waves came crashing against the back of his legs. Every time a wave would roll in he would yell "WHOA"..."WHOA"..."WHOA" and would try to keep standing straight (the water was rolling in fast). It was pretty cute. I can't tell you how many people came up to us and commented on how cute he was and how cute he was talking. Most of them would crouch down and say something to Thomas and he would look up and wave and say "HI". Not one of them knew he was deaf. That he couldn't hear an ounce of what they were saying.
By the time we hit the lazy river Thomas was pretty restless. I was losing patience because I couldn't communicate with him to tell him that we were NOT going home...we were going to another ride (I am very limited in my signing abilities). By the time we got to the basketball pool he was ticked off because the kids were playing basketball and they wouldn't share the ball with him. He kept whining and screaming...I handed him to my Mom and I swam away. I looked back and my Mom was taking Thomas out of the pool and walking with him. He kept looking back and crying for me. I felt like a horrible Mother...but I knew we both needed a time out!!!
A few minutes later Jonathan, myself and Dad went back to our lounge chairs to find Thomas sleeping!!!! He had completely wore himself out. I wanted to climb right next to him and fall asleep too! We let him sleep while the rest of us took turns going to change and when we woke him up we were ready to leave.
Halfway through our afternoon we stopped to eat. While Thomas was sitting waiting for his food Dad slipped his right CI on. For the next 30 seconds or so Thomas just sat there, he didn't say anything. He sat on his lounge chair looking around. I sat across from him thinking to myself "I wonder what he is thinking? Is he wondering why he can't hear this without this thing attached to his head? Is he wondering why we don't have this stuff? Or is he thinking "wow, i am thankful I CAN hear this...because without the CI, I could never hear ANY of this!"
I am hoping his thoughts will be closer to last thought. I want to raise Thomas to be a confident, strong, intellectual person who is thankful for what he has...and not upset about what he doesn't have.
On another note...our otter box came in today. A day too late but it will definitely be used (alot) this summer. Now that I have jumped over the hurdle that I had been dreading for so long the journey ahead doesn't seem as hard as I thought it would be.

Thomas sitting assessing the situation. Thinking about what he wants to conquer first!

If you look at the orange baby slides (not the big tubular slide) that is where Thomas spent ALOT of time!!!

Thomas has had it! Time for a nap!!!

No Problems....

2008-06-05T21:16:00.002-05:00

Thomas had his mapping appointment today at 1pm. When Dr. M called us back she asked how everything was going and I explained to her about the episode this past Sunday and how Thomas has been pointing at his ear/cheek (for lack of better description). She checked both ears and they looked perfect. So no ear infection. From the way he was acting in the office and the fact that he is 2yrs old we summed it up to "maybe he was having a bad day". But, if it continues than we should contact her and let her know.
His mapping went well. Very little changed in either CI. Thomas refused to sit on my lap, though. Every other appointment he has been very good at sitting on my lap and playing with the various toys in front of him, hitting the "button" when he hears a sound and cooperating with the audi. Today he stood in front of me and when he would hear a sound he would look into the "tunnel" and wait for his treat to slide down. He would not press the button or look at the dancing pig in the tiny box...he had to do it HIS way!
Oh, the joys of having a 2yr old!!!
We did get to talking about school districts, IEP's and the problems that we can run into. I was fairly surprised at certain school districts...especially one's that I thought were exceptionally well and it turns out that I was wrong. Oh well...a few more months to do our research and than it's the dreaded transitioning phase!!!

Problems???

2008-06-04T20:19:00.003-05:00

I have been wondering the past few days if Thomas is having a problem with his right CI. This past Sunday we were at a party for my Aunt's birthday. There were about 30 people there and we were in a restaurant...I wouldnt consider it very noisy, though. About halfway through dinner Thomas looked at me and pointed to his right cheek..I tried to look around to see if anything (or anyone) had accidentally run into him or if he got hurt...but everything looked fine. His finger got a little closer to his ear as he kept pointing. He finally took off his coil and handed it to me. I looked it over, making sure all the settings were correct and they were. I tried to put it back on him and he pushed my hand away...he did NOT want it back on. I didn't want to cause a scene so I put it away in its case and tucked it in my bag.
The past few days Thomas lets me put his processor on but various times during the day he will again, point to his cheek/ear and yell to me. I am extremely happy that we have a mapping appointment tomorrow with the audiologist. It has been driving me crazy that something is hurting and/or bothering Thomas and I can't do anything to help him.
It's either something with his CI or maybe one of his last teeth are coming in? We'll see tomorrow!!!

Busy Morning

2008-06-04T06:23:00.003-05:00

Monday was Jonathan's "birthday" at school ( he has a summer birthday so his teacher set aside June 2nd as "Jonathan's Birthday"). Our morning routine was as usual besides the fact that I was trying to get a huge box of cupcakes to fit into smaller boxes (Jonathan wanted to carry them in himself). As I was in the middle of getting everything together Jonathan told me that Thomas was up. Big brother went in to get Thomas and all of his gear (pacifier, blankets,etc). Jonathan was talking, I was talking, the cat's were meowing for Jonathan's milk in his cereal bowl and after a few minutes Thomas started yelling to me. I was rushing around saying "hold on Thomas, I will help you in a minute" and he gave me a big yell. I turned around and looked over at him and asked him what he needed. He was pointing to his ear. I went to go look to see if a program had changed or if a coil had fallen off.
OH NO......there were no CI's. In my rushing around and with Jonathan getting him out of his crib (usually I do it and put his CI's on right after diaper change) Thomas had no sound....and he did NOT like it. In fact, he was quite ticked off at me for forgetting to put his ears on. I rushed right over to the dry n store and got everything put together and clipped them on. Thomas gave me a big smile, grabbed his juice and walked into the living room.
There is NO doubt that Thomas was born deaf...but defintly LOVES to hear!!!!!

Lessons...

2008-05-18T19:05:00.002-05:00

There are times when I feel like a teacher. This has happened on a few occasions in the past month. A few weeks ago my family and I were eating at a local little restaurant. As we were walking out a man jumped up from his chair and walked over to us (he really did jump out of his chair). I was a bit nervous at first since I had no idea who he was or what he wanted. I thought he may have noticed my Cochlear pin but he introduced himself and told me that he was in the occupational therapy field and was wondering if my son was deaf..I told him yes. He told me that he had never seen anything like that (referring to the processors) so I went ahead and explained to him, the best I could in a crowded restaurant, about how Thomas was born deaf, his hearing aids and the implants. By that time I not only had his undivided attention but the attention of the rest of his table and the 2 tables next to him. They asked me if "they worked" and if I could see a difference in Thomas with them on and off. I had to quickly tell them that I most definitly could tell the difference. And I thought the implants were an amazing piece of technology that not only Thomas loves but our entire family cherishes the fact that Thomas can hear us and respond to us. He dances to music, laughs at funny things that people say or funny noises he hears and yells at those that upset him. He will always be deaf, but with the Cochlear Implant he can hear (when he wants to) and share in everyday talking, singing and enjoying every little bit of sound he hears. From someone birping (he will imitate it...its not the cutest thing but I am impressed that he can hear it), to a bird chirping to the all time favorite...AIRPLANES!!! He can hear the garbage truck outside, while he is in his room (at the back of the house), he can now hear the sqealing of the school bus brakes BEFORE he sees the bus make the turn to drop Jonathan off. It is amazig the everyday normal sounds that I used to take for granted~ now we can cherish them together!!!
Yesterday was another time for lessons. We went to 4pm mass...I didnt realize that along with regular mass they were also celebrating the 8th grade confirmation class. My Grandma made it to church before us (she was the only person in the kids room when we got there). Another older couple came in (one of my pet peeves...when people with no children go in the cry room..I dont know why they insist on sitting in there but they do). A middle aged woman came in. Mass started...I had to go change Thomas' diaper (the room was getting a bit funky)...I walked back into the room after diaper change and it was FULL. A handicapped man was sitting in my chair (that doesnt bother me at all) but the rest of the room was full of people with NO kids. Thomas and I were stuck in the back vestibule. Thomas didnt mind, he wasnt stuck in a tiny room..he had the entire back of the church to play in. Every now and again we had someone come back who had to use the restroom. There were a few people who would talk to us (while waiting to use the bathroom) and they would comment on how cute Thomas was and the conversation would lead to the implants. I have gotten my discussions pretty quick and detailed now. Everyone that we talk to is impressed on well he is doing...they are amazed at the technology and always wish us luck for the future. WHen we are done with our conversation Thomas will give them a big smile and sometimes they are lucky enough to get a high five or he will blow them a kiss (that only happens to women) and I leave with a happy heart knowing that I have informed one more person about hearing loss, deafness and coclear implants.
On a side note...
Here is another pet peeve of mine....when you are at church..turn OFF your cell phones. I know there were alot of people at our church yesterday that normally dont attend but I think it is common knowledge and decency to NOT walk out of mass to go talk on your cell phone. There were adults in the back with us and in the bathroom that just had to make a call. I know there are circumstances when an emergency arises and you may need to take care of something but most of the time it could wait another few minutes!!!
Ok..let me step down off of my soap box now!!! lol

Two Ears

2008-05-18T18:48:00.003-05:00

Whew..its been awhile since i have posted. I may split this post into two...depends how much time I have.
Thomas has really changed his feelings for his new ear. He hasnt gotten to the point of flipping out or yelling when the coil falls off, but he does prefer it to be on. I will clip the right side to his shirt and flip his coil on and I used to have to ask him to turn around so I could see his back and than pin it to his shirt. Now, after I put his right side on he will automatically turn his back to me and stand still so I can pin the processor on. Just one month ago I was about ready to put the new processor away and not worry about it. I felt it was too much on his shirt and he hated it. Now he is enjoying having both of them on. But, as Jim points out to me, he still INSISTS on ALWAYS having his right side on!
On a side note...Thomas has started climbing out of his crib. I was secretly hoping that he would stay in his crib until kindergarten! lol I get very nervous thinking of what kind of trouble he could get into if he wakes up and crawls out and we are still sleeping. The very first time he tried to climb out was months ago and while trying to flip his leg over the side rail he fell over onto the floor and he wasnt happy. I thought that was enough to turn make him not want to try it again. It was for a pretty long time...until this morning. I heard him whining and talking over the monitor but I was still REALLY tired so I stayed in bed for a little bit longer (hoping that Jim would get up...NOPE! lol). I got up a few minutes later and was brushing my teeth when he walked in and surprised me. He even brought the dog with him (the dog stays with Jonathan until Jonathan gets up). I thougth for sure that Jonathan had heard him so he got him out of the crib. I was waiting for a "SORRY" from Jonathan but I didnt hear anything. I walked into Jonathan's room and he was still fast asleep (he wasnt faking it either..he was really sleeping). Than it hit me...THOMAS GOT OUT OF HIS CRIB ON HIS OWN..YIKES!!!! I don't remember if I was this nervous with Jonathan when he started climbing out....I'm not sure if I am this nervous because of Thomas being deaf and if he is somewhere in the house, in the dark, he won't be able to hear either of us yell for him? I am hoping that if he does do this while we are still sleeping he will walk into our bedroom instead of walking around the house.
I laid him down for bed after the cavs game (Good game Lebron...thanks for a great season Cavs~ there is always next year)!! We went through our normal routine, said our prayers, took the left processor off, gave him his blankets, laid him down and than took the right processor off, blew him a kiss and walked out! I walked into the living room to put his equipment in the dry and store and I heard his door open. I waited a minute than I heard laughing (coming from Jim and Thomas). There Thomas stood, in the middle of the living room with his blankets. I put his right side back together and put it back on his ear. I told him that it was bedtime and that he had to go to bed. I gave him one of his trucks to lay down with and he fell asleep pretty quickly.
We'll see how tomorrow goes!

Up, Up and Away

2008-05-11T18:51:00.004-05:00

I want to start off by wishing every woman who reads this a "Very Happy Mother's Day"!
Yesterday we went to the mall and a quick trip ended up lasting about 3hrs. Oh well, we all had fun! We walked around (alot) and on our way out we spotted the big trampolines. They used to be at another mall that we used to go to, and Thomas went on it once. He didnt like it too much but it was tolerable. When we walked up and seen that it was open I asked the boys if they would want to go jumping. Thomas said "YES" right away...Jonathan said he would do it if we bought him another webkinz (I guess 18 isnt enough)...so needless to say, Only Thomas jumped.
Thomas LOVED it this time. His only complaint was that he couldnt jump high enough. So I told the man holding onto Thomas that he could let him go up a little higher (he was hesitant based on Thomas' age). Thomas' jumping time was up pretty quickly and he got off surprisingly well. I thought he would get ticked that he had to leave but he did fine. We did get the frequent jumper card so every time we go to the mall we will stop by for a Thomas Jump!

Jump!

On to bedtime....
I dont think it has anything to do with the mapping or the left (new) CI...I think it is an age thing. Thomas only wanted his CI on that 1st night...the past few nights he has let me take it off of him but when I would walk out of his room he would start crying and yelling "mom mom". Sooo, for the past few nights, after I hear him crying for "mom mom", I walk back into his room...glance and smile at him ...take the blanket from next to his crib and lay down on the bed. Once he sees me lay down he will grab him little blankie, rub it against his face and fall asleep (pretty quickly).
Alot has been going on these past few weeks and I have had my Mom or my Father in law watching the kids. Thomas definitly does NOT like when someone else is watching him. I think he gets nervous thinking that I take off once he goes to bed.

Pictures

2008-05-08T22:33:00.004-05:00

Our first train ride of the season (at the zoo). Thomas was telling me about a bunny he seen hopping (it was actually a kangaroo...but he didnt care)

We gave Thomas a little cake for his birthday. He had alot of fun with it!

This is what I walked into the other morning!! He must have had a tootser hidden somewhere and he was so proud to show me he could fit both in his mouth!!!

3rd Mapping and something different tonite

2008-05-08T21:59:00.002-05:00

Today Thomas had his 3rd mapping. All went well (besides me forgetting my wallet and cell phone at home..long story). We did the sound booth testing first, while Dr. M had all of Thomas' attention (well...most of it). She tested him with just his left (new) ear and he did pretty well. I was surprised at how much he heard and understood (where is your belly? Where is Mommy's nose?...etc). With both sides on I was amazed at how well he heard. She was barely whispering and he would look over (to his right side). I sat in the middle of the soundbooth with tears flowing down my cheeks...thinking back just about 2yrs ago. How I wish that he would have turned to sounds...but he never did. Now he does..with a little surgical intervention...he LOVES to hear!
When we went back into the office for the mapping Dr. M had some new games for Thomas to play. The old hold onto the ring, toy, ball, and when you hear the noise put it in the appropriate place. That worked for the first few minutes but than thomas yelled "Basketball" and started shooting the rings into the bucket. We moved onto the balls to be placed onto the pegs..he started shooting them. Even the regular toys became basketballs. We knew at that point we had lost him. Dr. M said she had a really good program for him so we dont need to come back for 2 mths (I have to reschedule our appointment we had for next month). YEAH!!!
Fast forward to this evening.
I went to my Mom's to pick Jonathan up, the boys played for a little bit, we came home and they ate dinner. Played for a little bit than it was time for clean up and baths. After Thomas' bath I usually only put his right side back on (that side is alligator clipped to his shirt... we still pin the other side to his shirt). There is usually only a few minutes between jammy time and bedtime so only one side will do.
So Thomas has his jammies on, he goes to get his blanket and his tootser(our name for pacifier) and comes back into his room for bed. I pick him up, give him some juice, we go through our routine (prayers, kisses and hugs) and I lay him down. I go to take his processor/coil off and walk away and he starts yelling "NO,NO, NO" I turn around and try to find out what is bothering him. He points to my hand..which is holding his processor. I hand it to him and he tries to put it back on his ear. I put it back on for him and ask him if he wants to leave it on for bedtime..and he shakes his head "yes". I tell him goodnight, give him a kiss and walk out of his room. By the time I got into the living room I could hear his screams. Not crying...screaming like he had just had the scare of a lifetime. I run back in and his little eyes are full of tears and he looked so panicked. I go to take his "ear" off and he tells me "NO". I ask him if he wants me to stay in with him and he shook his head "yes". I laid in the twin bed next to his crib and he didnt cry again. I laid there for about ten minutes, when I stood up I noticed he was still awake and I asked if I could take his "ear"and he quietly said "no". I left the room and he was fine. He fell asleep with his processor on and slept with it on for about 3hrs.
I am not sure why he acted this way tonite. It made me sad that he wanted to hear when he was falling asleep. I dont know why it made me so sad but it REALLY did. I'm not sure if he thought he would miss something or if he really likes to hear that much. I am also not sure what scared him so much. I hope he never feels that way again...but if it does happen I pray that I am right there to comfort him.

1 week Post Activation

2008-04-25T18:10:00.003-05:00

It's funny, last week I was ready to throw in the towel! A week later and things are going much more smooth. Whew~!
Thomas' initial mapping was April 17th. It did not go very well and Thomas would not wear any of his equipment until Saturday. I put it on him with no power. Later in the afternoon his coil fell off and before flipping it back on I turned the power on the processor. He didnt like it but my brother's started playing basketball so he ran over to play.
Fast forward to today~ things are good. We went in for his 2nd mapping yesterday and I was nervous that our audi may get upset~ Thomas was only on P2. She was actually happy that we didnt push him. If we woeld have pushed it to P3 he may have had a negative reaction and I definitly did NOT want that to happen..AGAIN! Dr. M mapped both of his processors...he is in P2 now. We will stay there for the next 5 days (give or take a day) and try to bump him up to 3. She also said that if we think it is too loud for him we can try to bump his right side down to P2 and that may even things out a bit.
I have been pinning his left processor to his shirt with the 10" cable and coil. So there is nothing on his ear. I think he is starting to realize when it does fall off, he doesnt stop and insist that we put it back on but he does look up at us, maybe hoping that we dont put it back on! lol A few family members have mentioned to me that they notice that Thomas is more vocal and talkative. Today was our usualy "Pizza Friday" dinner...Thomas LOVES pizza! I wasn't cutting his pizza fast enough and he kept saying "Mmm, Mmm" for more. I looked over at him and said "Thomas, say MORE PIZZA....MORE PIZZA" and he looked up at me and said "more peeza"... he said "more" very clear and I heard the "r" in there, too! YEAH THOMAS!!!
We have been told by both Lindsay and Dr. M to try to get him to have his left ear on by itself for about an hour a day. We havent been able to do that since his mapping yesterday. I am hoping for some quiet time this weekend where it can be just Thomas and myself and we can work on his left side for abit! **Here's Hoping**