Bathtub Adventures

I recently heard about trying press n seal to seal Aidan's implants so that they can go in the bathtub and swimming pool. I'd been rather nervous to try it as we are talking about thousands of dollars of equipment. Gathered my courage a few days ago and gave it a whirl. It worked great, no leakage whatsoever, all pieces were completely dry when I unwrapped them from their protective seal. The look on Aidan's face was priceless! He absolutely loved hearing in the bathtub for the first time.

Our November/December update

Aidan's speech has truly blossomed. In fact, since the second cochlear implant,Aidan has progressed in leaps and bounds. Still approx 1 yr behind in language but working hard to catch up.
His current list of words and remember not all of these are said clearly but they are used appropriately and he is prounouncing them a bit better:
Don't know(ohn know), Andrew, Alex(was ah but now is ah ew), Molly(was ma and is now ma ee), ho ho(for santa), Oh no(sounds similar to dont know but a subtle difference), aww man, heart, circle, star, woof woof, moo, cow, ba(only the sound, no meaning), mom, mommy, no no, mine, hot, meow, off, out, bath, milk, night night, bye bye, hi, look, all done, thank you, uh oh. Can't think of the others but there may be a few others. But that right there is 30 words!
Comprehension: He is understanding close/open the door, trash, get your diaper, give this to daddy/andrew/aidan, get a book, some body parts(hair, eyes, mouth, nose, hand, and food), some shapes(circle, star, triangle, and sometimes can get square and heart). Can also correctly identify some animals-cow, horse, monkey, cat, dog, duck, etc.

Aidan going to get his diaper

The last few days I have tried to slow down on signing that way I can see how much Aidan truly knows verbally. He knows quite a bit and we have been working on diaper. I asked him to go get his diaper, no signs, no prompts, nothing but the word and he ran to get it.

Aidan putting together his Mr Potato head

We have been working on body parts with Aidan by using the Mr potato head, books, and ourselves. Here is a video of him correctly getting the different parts of Mr potato head with just listening.

Still going strong

Aidan is doing fantastic picking up language. He repeats 2-3 new words a DAY! He may not keep them but he sure repeats them. We are making a master list of words he imitates, words he uses spontaneously, and then words he understands when I say them.
Receptive(ones he understands)-Hi, ByeBye, All Done, Mom, No, Alex, Andrew, Aidan, Hot, UhOh, Night Night, and Molly(the dog). There are even more but we just started this list the other day and I am writing them as I notice he understands/uses them. His imitated words(ones he imitates without knowing the meaning)-circle, purple, woah, ow/ouch, mine(although I think he may know this one now), help(seems like he is getting the meaning of this too, and milk(seems he knows this one one day and not the next), there are also more here but I want to make sure we are on top of words he is using so I'm not adding the words I heard 2 weeks ago and not since. Spontaneous words-words he uses with meaning with no prompting whatsoever-Hi, ByeBye, All Done, Mom, No No No, Uh Oh, Hot, Molly, Woof Woof, Water, Moo, Baa, Night Night, Thank you, and Star. Now remember, he has only been hearing for 1 yr and he is actually about on the same level as Andrew-he has probably a few more words than his baby brother(14 mths old) but Andrew can do b's, d's, s's and a few other consonants, while Aidan can't get the consonants out yet. So Andrew's "star" sounds like "stah" while Aidan's sounds like "ar" I have heard the r and n come out but never at the beginning of a word, always in the middle of some babble as I think it is easier to do that. I think when you say Robot it takes a little more than when you say star, both have an r sound, but the r is star is easier for him to get out.

Oh, and eval at Tech went good, the students oooh'd and Ahh'd all over him, he is the only Bilateral implant child in North La and everyone was so excited to see him. They were poking their heads out the door in hopes to get him to say "Hi" and he did! He certainly performed for them and showed them what he can do. A lot of people believe that children that have AN-Auditory Neuropathy-what Aidan has-should not be implanted as there is less success in gaining language. But Aidan has shown a lot of people that it is worth it to implant kids like him as he is understanding language, gaining new words everyday and doing really great!

October goodness

Some new things we have as of today--Aidan says wawa and signs water! He does it appropriately as well. He doesn't have that first w sound down great, but it is there! He is saying "mo mo" for No No, even includes the finger wag :) He calls the dogs "Mah"-doesn't make sense to the ordinary person, but one of our dogs is Molly, so that is what he is calling both dogs, and he called the cat that today as well. "mi, mi"(sounds like hi but with m) he is saying this for night night. He says "one" as we are doing 1, 2, 3 Magic for discipline which incorporates counting to 3, so now he is trying to count with me. We are also working on letter recognition. This is just bonus, nothing too serious, but we are pointing out letters in his book and he will say "I", "A", and "Y" but those are the easy ones for him. Sometimes he will point to an A and say I, same for the other letters, but he doesn't have actual letter recognition yet, he's just guessing. Still working on "daddy" but today he actually tried, didn't get the "d" sound in there, but he got a similar sound that sounded like "ah e" You've all probably noticed by now that he's great with vowels, and things that start with m. That is because they are easier to say and we have to teach him how to move his tongue and mouth to make different sounds. Doesn't seem hard and it is ingrained in us, but it is quite hard for him. Good news on that front though is he has finally mastered blowing! It's a simple thing but so important. For one, blowing helps move the tongue into a different position-the position to use letters like "b and p" There is all kinds of other things--like he when someone says a word, he will babble the correct amount of syllables, he's getting a cadence to his voice--like before he would say mama with the same inflection. Now sometimes he increases the pitch so it sounds slightly different and not a monotone, which is great! He is doing really well for 1 year of hearing and I think in 2-3 yrs we won't notice much difference between him and his peers. Oh and I think we may try out the potty in about 6 mths. Starting to lay the foundation for him now, kind of hard when his comprehension isn't so high so relying on a lot of visual cues-mainly saying/signing potty when others go, letting him flush, trying to let him sit on the toilet a few times a day--which is a lot harder than one would think considerig Andrew screams at the bathroom to come in and if I let him in digs in the cats food/water/litterbox. But all in all, doing quite. Oh, he also goes to Louisiana Tech on October 26th for an evaluation by their team--basically from what I was told is he is in their program and they are going to gather info at this meeting to see where he is.

Aidan says hi!

New stuff

Aidan is learning quite a bit and trying to say some more words. He says milk very well-doesn't enunciate the k. He tries to say more and it sounds like maah(long and drawn out) but he is signing it at the same time so I know that is what he is attempting to say. I've heard Yea, and Yay a few times, not sure if they were planned or not though, but I have definitely heard the Y sound coming out a lot more. He is getting that H sound out a lot better, which apparantly is hard to do. He says Hot(sounds about like Hah, no T sound yet), He says, eye/I(not sure he is referring to either one but he will repeat it occasionally after I say EYE), he will also say Hi and wave, sometimes he will do that one right after me, but he is stubborn and only wants to do it when he wants to. Other times he will wave to the cars going down the street and I hear "HI" I wish I could get all of these on camera but he won't perform when he sees the camera ;) Oh he also tries to say Ball, he doesn't have the B sound yet so it sounds like Ahhl(not quite an L sound though, but close)
We are working on blowing every day and he still can't blow, doesn't seem to know how, but he can exhale very strongly, so we need to figure out how to go from a strong exhale to an actual blow. We were putting cotton balls on the table for him to blow across the table but he can't blow strongly enough to move them so we have changed to blowing kleenex's and he can move those by his strong exhale and he is very proud of that! We also have a lighter that we use to light candles and he loves trying to blow that out and is doing great with that.

The signing is going very well, he knows a ton of signs and can immitate most anything, but he has trouble connecting the sign to the object, I think that will progress a ton more soon enough. In the car we will sometimes sing/sign the alphabet, esp if we are waiting in carline for Alex, and Aidan will attempt to sign t with me, he does quite well, but he also makes a sound when I say the letters as well-he of course can't say the letter correctly, but he can make a little sound with it.
He does have other sound approximations but I can't think of them at the moment. We go to New Orleans again on the 9th for his programs to be increased so he will get a higher level of sound. Oh, I have noticed him respond some with just his left ear on. That is the one that was just activated so it is the ear that has had less stimulation. But I have taken the right ear off(without him knowing-just turned it off) and then called his name and he did look at me, I also said the word MOM and he parrotted back MOM, so he is hearing with it, just very low right now. I think had I said a word he didn't already know, I would have gotten less response out of him. Oh, and this was with his back turned to me, so he didn't read my lips and guess which word/sound I was saying. So that is good there.

Milk and quack quack

Aidan lately has been saying milk. It sounds more like MEAL(but not much enunciation, if any, on L). And then when we point to the duck in his book he will attempt to say quack quack. He doesn't get the Q, or the CK, sounds like wha wha, but you can obviously tell that is what he is saying. Oh and he said Maah for Molly the dog the other day as well!

Big leaps

Aidan has done really well the last few days.
He had speech yesterday and he said a few words right after the therapist did. They were playing with playdough and cutting it with a knife, he said "I" and made the correct mouth placement for F, although he didn't sound it out, she said Ball and he said "Awl", she said dough, he said "oo" so pretty good when he usually only does a few sounds. Who knows if he will say them again or if it was a one time deal, but he is definitely making progress. Aidan has also been saying "Awt" for hot-pretty close but doesn't have the H sound just yet, he also said "yea" a few times right after Alex did, I'm not sure if he got the Y sound in there or not, probably not, but I was in the other room so heard him from there. We usually sign and sing the alphabet a few times a day and Aidan is trying to immitate that and he hums a sound at each one, so although he can't sing ABC he can vocalize with it. He is signing a lot lately, he can copy most of them, he is watching Signing Time right now and is signing along with it, he has done uncle, grumy, silly, etc in the span of just a few minutes. We really love this series and have almost all of them, I think we are just missing maybe 5-6 of them, which will be going on the Christmas list :)

Oh and news on the school front--our ST hasn't mentioned yet about Tech, we were talking about it yesterday but I forgot to actually ask her if they would take him. However next week after I drop Alex off at school, we are going to have therapy in town b/c the therapist has to see 3 babies before she has to be in a meeting and so we are meeting them in town. We are either meeting at the church or Tech(where Aidan will get extra therapy hopefully). She is calling them to see if they can spare a therapy room for us to use that way we can kind of get him in the door, let him meet him and then talk about them working with him a few times a week.

Aidan will be going to preschool in the fall and I voiced my concerns to our ST about what kind of environment he would be in. I had been worried that they would put him with very low functioning special needs kids and I wasn't sure that would be the best learning environment for him. So I asked the ST about that and she said most likely he will either be in a regular class with other 3 yr olds and leave for speech or he will be with other high functioning special needs kids--like milk down syndrome, high functioning autism, other deaf/non verbal kids, etc. So that made me feel a lot better. Not that there would be anything wrong with him being exposed to lower functioning kids, it's good for kids to be around higher needs kids but I worried that the teachers would be too busy working with them since they would have greater needs and Aidan could get shafted and not have the best learning environment.

Activation of the left ear

Aidan has his left ear activated on August 3, 2009. Went quite well. He cried for a few minutes, tried to rub his head on my shoulder to knock it off. But as of today, he is doing really well. Doesn't pull it off as much as he did with the first one. Of course he isn't hearing very much out of it yet-so small that it is immeasurable. But other the course of several months we will increase the volume and he will be at it's max volume in about 9-12 mths. Over the next 4 weeks we will increase his different programs a slight bit and then go back to New Orleans on September 9th to get 4 more programs that we will work through.

Surgery went good

Aidan had his 2nd cochlear implant surgery on July 22nd, 2009. Everything went fine, he of course had a hellacious time coming out of anesthesia, just like last time. Except this time it was worse b/c he wouldn't open his eyes so he fought me for a long time to get done, he didn't know it was me-couldn't see/hear me. But he wasn't in any shape to get down, so we ended up getting them to give him a little morphine, which settled him down and then he slept most of the afternoon away. He was doing pretty good by 7pm, walking around, playing a little, even ate him a slice of pizza. The next day we went to his post op appt, he was glad to have the bandage removed. We then took him to the zoo and he had a great time.
At the aquarium, day before surgery:

Hospital gown:

Resting after surgery:

Day after surgery, ninja baby:

The day at the zoo:

The zoo has an animatronic dino exhibit, it is pretty neat:



Aidan walking to see the giraffes:

Sitting with the monkeys:

2nd Cochlear Implant Scheduled

We found out yesterday(June 1, 2009) that our insurance has approved Aidan to receive a 2nd cochlear implant. He is scheduled for surgery on June 22, 2009. It is all happening very fast but we are thankful he is getting the chance to hear out of both ears and are hoping it is just as much a success as the 1st one.

What's going on here

Aidan is doing extremely well with his implant. He still repeats mama but not sure he gets what it means just yet, he will try to repeat up(sounds like UH), uhoh(sounds like UhUh, and hot(ahhhh). So not perfect but very good. He usually repeats things after me although he has said hot/ah all on his on after getting hot food.

I spoke with our insurance yesterday and found out what the criteria is for Aidan to qualify for a 2nd implant and for them to pay for it. According to their list, he meets all criteria. We go to New Orleans to see the audiologist on the 22nd and will see the Dr as well. He has to see the Dr before they can send in preauthorization for the 2nd implant. If all goes well, and we have no reason to suspect it won't, then we should get approval within 1 mth after our April 22nd appt, so we could know something as early as the middle of May. If it is approved, they will probably schedule surgery sometime this summer.

What happens if insurance decides not to approve? I asked our audiologist this same question. And she told me that Cochlear(the company that puts out the implant) has an appeal team and they will go to bat for us to appeal the decision-I didn't ask how long that process takes as I figured it would be quite lengthy-so let's hope we don't have to go that route. Our audiologist did say that we have a very good chance at being approved, even more so since Medicaid paid for the first one, not them, so they are only paying for one.

Baby Chatter

Aidan has been saying mama all day today! He hasn't attached meaning to it yet, but everytime I say it, he mimics me. Or well at least 1/2 the time he will copy me. Hopefully everyone can see this video.

A word I didn't expect to hear

So the past week or so we have been working on Ling sounds with Aidan-aa, ee, mm, shh, ss, and oo. He loves Shh and turns the second I do it. We were doing mmm rather heavily today and yesterday. Today he kept going mmmm, mmm over and over! Great progress for him. And then he said it. He doesn't know what he said, but it is the word I have wanted to hear for the longest time. mmmuma. I of course know it isn't a word, he is just babbling finally. But hey, I'm going with it and soon enough it will hopefully be a full out Mama.

In other news, the speech therapist wants him to stop using sippy cups. She thinks his tongue isn't strong enough and we need to strenthen it by him learning to use straws. She explained that if he doesn't strengthen his tongue and learn to pull it back while drinking, he is going to have trouble with pronouncing certain syllables. So we are working on that. She also mentioned getting rid of the paci. Yea, I don't think that is happening. He needs that thing to go to sleep, so I am only letting him have it at nap/bedtime and he is doing good. I do plan on trying to get rid of it at 2, but I'll be ok if he still has it at 3. There is just no way I can take it away while Andrew still has his, so once his is gone, Aidan's will hopefully be as well.