Therapy

I thought I would share a few pictures...
1)Thomas' equipment
2) Thomas' magnet (coil)
3) Jonathan and Thomas in their matching shirts
4) This is the sad look he gives after he gets told "NO"...he wont cry...just gives us this sad little face!




Today was our first therapy appointment with Lindsay since Thomas has been activated. She reminded me that this will be the worse he hears from his CI.....the programming is incomplete and the volume is set very low. WIth that being said Lindsay said that Thomas is definitly on his way!


She also told me that all our hard work and dedication in teh earlier months are really going to pay off. I had my doubts that THomas could hear from his CI at all but Lindsay assured me that he does....not alot but you can tell that he is turning to quieter sounds that he hadnt turned to before.


I also told her that when I ask Thomas "where is Jonathan" he will look around the room until he sees Jonathan than gives a big smile, points and crawls like crazy towards him. THomas will do the same thing when I ask him where is the "meow Meow" (our word for cat). Poor cats....they dread when he hear him squealing and heading right for them. We do patty cake, twinkle twinkle (which he doesnt care for) and now Lindsay has given us a sheet of paper with new sounds to introduce to him. I dont have the paper in front of me but when I do I will explain it further. A quick explanation...... we have a tiny train....we call it "Choo Choo". We keep saying "choo choo" and he will eventually try to say it (he tried a few times in therapy today) and we want him to get to the point that when we say choo choo he will look for the train. I believe we also will be working on bubbles and pop pop pop. I will update later when we get started on those sounds.


On another note...I was in different stores today and I am getting used to the stares. There was one particular lady though that really got under my skin. I was looking at the sun screens and she passed us once. than again, again and again. Each time she would stop and stare at Thomas. I finally had enough ( all she had to do was ask what the thing sticking to his head was) and I started following her. It was only for about a minute but I followed her all through the make up aisles. I didnt look at one thing...just kept staring at her. I finally passed her and said "all you had to do was ask".


We were at Babies R Us and I went into the mothers room to feed Thomas. There was another mother in there feeding her newborn. She was also on the phone but when she got off she asked me if that was a cochlear implant that my son had. I told her yes it was. and she told me that a friend of hers has a 3.5yr old that is going to get implanted next week. I guess the little girl was born before the newborn hearing screening was mandated so she slipped by until recently when they finally noticed she wasnt talking. This is the 2nd time in 3 days that I have been approached by people who have a child with a CI in their life. The cashier at wal mart kept saying "poor baby, poor little baby" after she asked me what that was on his head. I told her that she shouldnt feel sorry for him. He has been blessed and that we did not see this as a bad thing that happened. Of course, I would have much rather him been hearing but with the help of the CI he will be hearing, just not all the time!


Thomas is doing great! I am still trying to get the magnet strength right....too loose and it falls off easily...too stroong and it makes an impression on his head and I dont want it to lead to infection.

We got back tomorrow (may 31st) for our 2nd mapping. We also turn to P4 tomorrow morning. I keep thinking of what Lindsay said today. This is the worst he will hear from his CI...its all uphill from here!


Jonathan has 4 more days of school. I promised him that this summer would not suck like last summer did (I was in my depression till about mid august) and we didnt do much at all. So this summer we are going to be out alot and enjoying the weather, outside and our family!

Activation Day

So, today was Thomas' activation day. His appointment was at 930am...bad Mommy...that is his nap time. So I get him up at 5am, feed him, we play a bit and he goes back to bed around 615am. I woke him up at 815am..got him dressed...dropped Jonathan off at Baba's and we headed down to UH. We got there at 9am and I fed Thomas in the main Rainbow waiting area .......on a side note- for those of you that watch the news I am not sure if you know about the little foreign sisers that are attached at the head. I can't remember exactly where they are from but we seen them walking around rainbows. For going through what they are going through they are amazing little girls. They are beautiful and have the most gorgeous smiles and happy little laughs. Please keep them in your prayers so there operation(s) are successful. OK..sorry!

Our audiologist (Amanda) came and got us around 930am (after THomas made a friend in the waiting room. How can he only be 1 and already know how to flirt? Amanda is great and patient (Jim was asking a hundred questions again). So we get Thomas all hooked up, I get the video camera ready, Amanda tells us to be quiet for the few moments and than we were able to speak. Guess what happened..................NOTHING! We knew to expect either crying, smiling, or nothing at all. I was actually relieved with the no real reactions. It could have been worse (constant crying)....He wore his processor all day along with his hearing aid. Sunday we get to turn it up to P2 (program 2), Tuesday is P3 and Thursday is P4. Thursday we also go back in to see Amanda and get his MAP further programmed and turned up a bit. After the 1st hour Thomas was getting agitated. He did not appreciate me messing up his schedule...I paid for it the rest of the day.

So, all in all, today was a good day. Thomas is keeping the hearing aid and processor/coil on his head and he is toleratin the levels that are set. the only problem we had was the magnet strength. He has such sensitive skin that the magnet was leaving a fairly deep impression on his little head. So Amanda made it about as weak as possible. We got home and it was still making a mark so I have it pretty close to almsot falling out and it has not been leaving a mark. Amanda said if the magnet is too strong infection can occur.
The magnet kept falling off today while Thomas was playing. Of course, it was when he would fall or rub on the couch but between myself and Jonathan we kept popping him back 0n. You can't do much to keep a 1yr old from playing around.

Dah Dee

I almost forgot to mention that Thomas said "Dah Dee" yesterday. He has been making lots of noises and every now and again a " Om" will come out but yesterday clear as day he says "Dah Dee" (I had been talking to Jim on the phone, too).
I can not wait until the time comes when Thomas will say Mom or Dad and actually know that he is saying it. I am a very patient Mommy! I know we have steps to take and I just happy that he will soon be able to hear!

3 more days

Today is tuesday, we have 3 more days until activation. I am very anxious and excited but I am trying to not expect too much. As we have been told (and watched in the video from cochlear) we can get a vary of emotions from Thomas. He could cry, smile, or not react at all.

I am getting kind of tired of people asking me "does he seem happier since the surgery?", "what exactly does he hear now?", etc! I have tried to keep my patience, especially with strangers but its the people close to us, that know Thomas' story, that I am losing it with. NO...he can not hear right now....NO, I dont know exactly how much he will be able to hear,....YES, I am VERY excited!

Thomas is healing very nicely. Its 3wks post op and you cant even tell where the incision was. There was a little stitch that Dr. M took out and we have been putting bacitracin on it 2x a day and now that is almost all healed up.

We did buy a new bike seat for Thomas for our mountain bikes. We had the one that went on the back of the bike but I could hear his hearing aid buzz and i hated not being able to do anything about it. THis is a new seat that sits in front of the biker...Thomas loves it and so does Jonathan....we wont be stuck in the backyard riding anymore!

I dont know if I will be posting again before Friday ......I cant believe how far we have come in the past year. 3 more days and Thomas will be "turned on"....YIPPEEEEEE!!!!

M O M

I put Thomas to bed around 6pm. (his usual bed time). I peek in around 630pm.....he is still up. He sees me but I hurry up and shut the door. I just went back in (around 645pm) and he is laying down but facing the door. I walked in and I hear " M OOOO MMMM" I know it is a crazy coincidence but I couldnt believe it. I put in his hearing aid and said "Thomas....MOM....MOM....MOM" and he looked at me and smiled and started yelling. I kind of screwed up now though ....he is up and raring to go! I got so excited it got him all riled up so we will have a few minutes of play time and than back to bed. He doesnt even realize what he said or what it meant to me but he is happy.....he's out of his crib! lol
just a side note from when I first wrote this....its 815pm and he is still UP!

Post Op Appointment

We just got back home from Thomas' post op. appointment with Dr. Megerian. Dr. Megerian told us that everything looked great and he took the strip off of the incision....Thomas started crying. Than he showed me exactly where the magnet will go.....Thomas continued crying! lol Than Dr. M asked me if I wanted the one remaining stitch removed or if I wanted it left in there and let it harden and fall off. I told him it was completely up to him....so he said he will take it off! So the nurse and i held Thomas' head and Dr. M snipped the stitch out. By this time Thomas would not let the nurse out of his sight. He didnt mind Dr. Megerian but he watched the nurse's every movement! lol I think between all his testing, IV's, etc. he is kind of leary of nurses! So we go back in 3mths for a check up with Dr. Megerian and next week (5/25) is Thomas' hook up!!!!! Thomas is doing well and he is taking a well deserved nap right now. He did manage to slip out a few smiles to Dr. Megerian, which was nice!

Bandage....

He took a nap and when he woke up his ear had "popped" out! Silly me I didnt realize that his ear was pressed against all the gunk and when he started rolling around it came unstuck. So now you can see it all. lol It's still not that bad though. You can see where the internal device is but that will make it easier when we go to place the magnet on his head. I took him out to the store today and a group of older women were staring at him and making comments to themselves. I got ticked off and walked up to them and politely said "all you need to do is ask me what happened instead of snickering behind my back"....no one said anything to me. whatever! I know the old lady across the street probably had a good talk with her hen friends when they seen Thomas with his big head wrap on. At this point I really no longer care what others think. I had to go pick up Jonathan from after school karate and I was waiting in the hallway when another mom said "Oh, i bet that hurt you morethan it hurt him" (his head was still under wraps) so I said "yeah it did"and went on to explain his situation and what had been done. I felt like a lecturer but she asked and as I explained more people came in to listen! There is a bit of a problem we encountered tonite. A bit of the tiny strip (its a few inches long) covering his incision is starting to loosen at the bottom. Whenever Thomas goes to touch it (it must be bothering him now) he starts crying. He doesnt pull it at all, just a light tug, and he looks at me with such a sad little face and starts crying. He is sleeping now but if this continues tomorrow I may call to see if there is something I could put on so it doesnt hurt or if maybe I could cut the little piece off. The little piece is not stuck to anything but when he touches it, it must pull at the piece that is still attached,

We have an activation date

Thomas' activation date is May 25th at 9:30am at Rainbow Babies. So, we have 3.5 wks to wait...that OK because we had to wait a year for him to get his implant so a bit under a month isnt too bad!

Thomas kept his bandages ON!!!!! Dr. Megerian said we could take the gauze off today (wednesday) so Jonathan helped me and we took them off this morning before he left for school. Its not as bad as I thought it would be but I do get nervous about him bopping his head on something. He plays around so crazy and rolls around and whips things around I get nervous but I cant stop him from being a little boy. Baba tries to keep him "contained" and he hates it! So I just let him go and keep my fingers crossed that he keeps everything in tact.

I took some pictures of the incision site I will post. Thomas is starting to get back to his normal routine. Not eating as much as he did but he is starting to get that back. He is napping now (11am) and when he wakes up that will be it for the day. He hasnt needed his pain med. for the past day but he is still on his antibiotic until next Monday.

All in all everything went smoothly. We received the surgery report today and everything sounds great (from what Dr. Megerian and Dr. Murray told JiIm and I).

I am very anxious for May 25th!!!!