Upgrades

Cochlear Americas has just released their newest cochlear implant, the Nucleus 6. Aidan currently has the Nucleus Freedom. His current implants are great, he hears well from them, however the Nucleus 6 overs better sound quality, which will give him better access to speech. It is also about 1/2 the size of his current implant, which means he will have less ear discomfort. I have spoken to my insurance through work and they specifically exclude implants and hearing aids. However, his NC medicaid will cover them. The only issue is that they are only saying they will replace/upgrade the right side and that we will need to wait at least a year before they will think about replacing/upgrading the left side. The problem with that though is the fact that these implants are very different, he would hear better in one ear, whereas we want him hearing equally out of both ears. He also uses an FM system at school and the implant he has now and the upgrade requires 2 different FM systems which is nearly impossible to do. Add in the fact that we would really like him to have this upgrade because it does offer better sound quality, we are hoping to raise the money necessary so that we can buy it out of pocket now, rather than wait another year. This is the link to the implant we are wanting to get for him http://www.cochlear.com/wps/wcm/connect/intl/home/discover/cochlear-implants/the-nucleus-6-system-/ Currently, the price is approximately 10,000$ out of pocket for this upgrade. It is our hope that we can raise the money with the help of our friends and family to provide this new technology. If you are interested in donating, you can do so through paypal which I have set up a fund for him. You should see a DONATE NOW button on my page that will allow you to donate using a credit card/debit card. We appreciate all that everyone has done for us and look forward to raising the money to fund his new ears!

Summer 2012

Been a while, we are so busy, especially with me in school! Aidan has been making huge strides recently, especially in the last month. He finished up preschool at the end of May and at that time was unable to rhyme words of his own choosing, such as asking him what rhymed with hat, he couldn't tell you. However, now he is rhyming like crazy. His sentences were good before but now he is getting almost all parts to the sentences and really expanding on what he says at one time. Louisiana Tech(where he has his speech) was able to get the Quota Club to pay for an FM system for him and that came in last week. We aren't sure if we are going to use it in kindergarten or not, We had his IEP about a month ago to transition him to kindergarten and right now the plan is to go in with a lightspeed that will amplify the teachers voice for everyone, not just him. If he needs more, then we will use the FM system. I don't know which is the right decision, to just start off with the FM or to progress to it if needed. He does so well in a loud environment, had no trouble in the preschool setting with 20 kids, so I just don't see him having trouble in the kindergarten environment. On a side note, a very happy one, Aidan and Alex both got accepted into Glenview Elementary! We are coming up on Aidan's first and second surgery date, he had his first implant done around July 13,2008 right after his 1st birthday, and his second around June 20, 2009, right before his 2nd birthday! Our goal at that time was that he would be fully caught up by his 5th birthday, or by the time he entered Kindergarten. We haven't quite met that goal, but he is close. I think he is probably still a few months behind, and that mainly is from not quite being able to enunciate all letter sounds that is age appropriate for his actual age. Based on his hearing age(which is 4 yrs), he is doing perfectly! I haven't been taking much video lately since it is hard to actually get a video with him talking without getting shy about the camera being on, but I will share a video from before Easter. It doesn't encompass how well he is doing today, but you can see the improvements.

Lost controller

well it happened. Aidan lost his controller to his right implant at school on 1/23. It has not turned up. We called Cochlear that very day and reported it and they are working with his Medicaid to get him a new one. Medicaid should pay for it but it could be up to 6 weeks before we get it. Hoping it isn't that long. It is scary knowing he has to rely on his backup and that if something happens to it-then we won't have anything and he could very well not have sound to that ear until everything is mailed to us.

In other news-Aidan is doing very well at school. Learning lots. Playing around with saying words differently(on purpose which can be annoying lol) and has also started the "why?" phase.

Aidan has been in prek4 now since the end of August. So over 3 months. He has done very well and has tons of friends. He is having no trouble keeping up with the other kids and is learning tons. He can even do all of his letter sounds.

Video from today(12/7/11)

Summer 2011

Aidan has made huge stride in just the last 2 months! He has been doing summer school with his preschool-same teacher but different speech therapist. They have been doing the LiPS program and we have seen a lot of success with it. Hoping his regular speech therapist will continue with it b/c he is now finally sounding out a ton more sounds-especially "S" in the middle/ending of words and tons of other sounds. His last week of summer school will be this Thursday(7/28) and then he will have a nice nearly month long break until he starts in the prek4 class-mainstream finally! We have requested that my nephew(just 6 mths older than Aidan) be placed in the same class with Aidan to hopefully help Aidan come out of his shy shell. So hopefully that placement will happen and hopefully Aidan doesn't wait until the end of the year to talk to his teacher!

A video from a few days ago!

New changes with Spring

We have had many many changes come with this Spring. Aidan has been doing very well. He seems to know everything I say unless it is a new word-which is normal for all kids. We have been focusing on his articulation a lot more since that is lower than where it needs to be. Aidan has finally fully potty trained. No more pooping in a pullup. It has been 2 weeks and he hasn't had an accident since! Very happy about that. Aidan got a new set of tubes on Wednesday(4/13) since he has had so many ear infections and lost his first set of tubes. Here's to hoping no more ear infections for him.

Aidan is really liking school as well. He is now counting up to 30(with a little help with a few numbers). He still knows all of his shapes and letters. He also knows that he is going to be 4 on his next birthday. Whenever we pick Alex up at school--the duty teacher always calls ALEX WEAVER. So Aidan and Andrew have both picked that up and are now calling themselves by their full name as well as me by "mommy weaver" and Edward by "daddy weaver."

Winter

Haven't had a ton of time to update as we stay so busy during the school year. We have already had 3 "snow" days although none of the snow came here, bummer! Aidan has been doing really well, language is growing all the time. He is starting to use different parts of language more frequently, such as "I want "it", I want "some" and other similar phrases. He is also using where and what a lot more however we haven't see who, when, nor why yet. I am thinking I may need to devise some type of game to work on these, thinking guess who make be good for "who". We are starting to work on articulation in therapy more and at home. He still has a lot of trouble getting beginning consonant sounds on most words. His "dog" sounds like "ahhh", he had an end placement but it isn't a g. So we are trying to traget these words. He is fairly good at getting the correct medial sound, it is just the beginning and ending he has trouble with. He had a mapping a few weeks ago and they tweaked his high frequency sounds in hopes that will help him get those ending sounds. I think his oral motor issues still play a part in him forming many sounds. For the most part, he can NOT get the C, D, F, G, J, K, L, P(at times), R(at times), S, T, V, Z sounds in the frontal position.

We are working on "verb tense" and he seems to have the ING sounds down(runnin-without that final G sound) and are working on past tenses "I ran", but mainly concentrating on getting him getting the beginning/ending sounds down. He is still behind in his language but I don't stress it, he will catch up eventually. I do worry I don't spend enough time working with him on a daily basis--we just do our daily life and I try to sit down with him for 20-30 mins a day but that can be hard. Looking forward to summer when we aren't doing school, therapy, karate, baseball, and everything else. Should make it easier to get plenty of language targeting activities.
And here is a recent picture of Aidan, no longer a little baby.

Been a while

It has been a while since I have updated. Nothing going on here besides day to day life. Aidan is doing great, talks a lot, makes his wants/needs heard in any way that he can. Is really enjoying school on the days that he goes(3 days a week)and is getting very excited for Santa Clause and Christmas. Aidan recently sang with school at the downtown gathering that kicks off the season. He got to sing Jingle Bells and is still singing it "jingle bells, jingle bells, hey!"

A few pictures

This is the picture of Aidan that I full intended to use on our Christmas card. However, I have yet to make them and don't believe I will get to them. That is the life of a busy mom of 3 children.


Aidan and his teacher and a few classmates singing Jingle Bells, Aidan is in the middle

Genetic testing is back

We got the results several days back but I am just getting around to writing about it. Darn those pesky 3 children taking all of my time ;)

Aidan was diagnosed as having 2 different mutations on the OTOF gene, at least I think it is called that gene. I may be wrong. Anyway, he has OTOF(otoferlin) related deafness. When he has children, he will pass it along and no matter what, he children will be carriers. If the person he has children with also is a carrier, then there is a 25% chance the child will be born with hearing loss, 100% chance they will be a carrier. It is not high probability at all, but if it so happens that he has children with someone with hearing loss due to OTOF, then there is of course a 100% chance that each child would be born with hearing loss. Now, if he has children with someone and they have hearing loss for a different genetic reason, then I believe that those children would be carriers for both genetic issues, but I THINK that they are all recessive so it should be fine.

We also found out that Edward and I have a 25% chance each pregnancy to have a child with hearing loss. This hearing loss will always be present at birth and will always be in the severe to profound range. This doesn't affect our decision for more children. We do plan to have 1(maybe 2 more) in 3-4 more years after I go back to school for yet another degree and once we move into a bigger home as we are still in the home I bought when I was 19 and single in college. Anyway, that is the genetic results in a nutshell, I'm sure there is a lot more information I could add, but it gets rather boring.

Aidan started school

This week is Aidan's first full week of school. He seems to be enjoying it so far. The teacher is letting him come 3 days a week, so he is there Mon, Wed, and Fri from 745-220. From what I have seen of the other kids(and I have only seen 3 of them) things are ok. My worries have eased and I expect this to be a great school year for him.
I have to wake him at 630 every day and it has been a little rough on him, but hopefully he will get used to it soon.

First day of school:

Aidan "reading" to Andrew

Aidan's 3 yr checkup

Aidan saw the pediatrician today and that went very well. He was 37" tall and 33 pounds. She was happy with his progress, with the fact that he is nearly potty trained, still not pooping on the potty, but going well so far. He got 4 shots, which he did not care for at all.

He also saw the eye dr again yesterday and luckily she said no glasses yet. She did mention doing some therapy to strengthen his eyes, which I think we will just get them to show me what to do and I can do it at home, if possible. Don't think we can add even one more thing to our schedule. All in all, he's doing very well.

He understands me!

The last few weeks I have noticed that I have been getting less and less "what the heck?" looks from Aidan.
I tell him:
"get your shoes" and he does it
"turn the tv off" and he does it
"do you want icecream?" and he answers me
"stand by the door" and he does it.

I could easily go on and on but I think about 90-95% of all things I tell him, he understands. Now, all of this is familiar, everyday language that we use in our home as well as when we are out and about.

New language he seems to be picking up easily as well. Still working on him asking questions and initiating conversation. Consonants are still hard for him-he is still at the same ones, b, d, h, w, m in the initial position and then he can also get r, n, p, t in the medial position. He has managed to get an f sound in the initial position a few times but it is rare.

He seems to be in a screaming mood lately, which is especially grating as his voice is inredibly shrill. So we have been working on him requesting help when he needs it instead of screaming for attention. He also screams whenhis brothers are messing with him, like sitting on him or taking away his toys. Working on him verbalizing what he wants, as in "give that back", "get off me" etc.

Our Final Decision Regarding School

This decision has been heavy on our minds for months. We would make a decision and then change our minds b/c it didn't feel right.

As of now, Aidan is going to go to public school 2 days a week-hopefully Mon and Fri from 8-220. Tue, Wed, and Thurs he will be home with me. We are going to put Andrew in Mom's Day Out Tue, Wed, and Thurs so that Aidan will get some quality alone time with me and I can teach him better without Andrew here. And then Andrew will get the alone time with me when Aidan is at school. Works out perfectly!

The only issue is that the public preschool he will be in is a self contained class-only special needs kids, several autistic and then some other children that I am not sure what their issues are. Hoping he doesn't pick up any behaviors. As long as we see him progressing in the environment and excelling with not too many issues, then we will continue. Otherwise we will pull him out and he can stay with me full time.

I have thought about him needing time with neurotypical children, not just the atypical kids. But he will have his brothers, his cousins he sees a few times a month and then since I will only have 1 kid with me at a time, we will do story time at the library and maybe the mom's group.

"Oh my God"

This is Aidan's newest phrase. I know it isn't PC or anything, but I can't help but love it! And as you notice, his little brother picked it up too.

Aidan's language sample

Thought I would get a quick sample of a sample of Aidan's language. We were working on B sounds that day.

Aidans school evalutation, official report

We received it in the mail today and it outlines how Aidan scored on different sections of the DAYC test.

-Physical Development-Scored at 37%, age equivilant of 30 months.
-Cognitive-passed all skills in the 24 mth age range, scattered skills in the 26 mth age range. Scored at 16%, age equivalent at 26 months.
-Communication-passed 73% of skills presented in 24 mth age range. Unable to understand possessives, carry out 2 step unrelated commands, understand big ane little, produce intelligible speech utterances, or consistently combine 2 or more words in speech(he does this with me a lot though). Scored at 6% or age equivalent of 21 months.
-Social-emotional-passed all skills in the 24 mth age range with the exception of enjoying simple make believe and saying please/thank you(which he does do a lot now). Scattered skills in the 36 mth range. Scored at 14%, age equivalent of 23 months.
-Adaptive Behaviour-Passed all skills in the 24 mth range. Ini the 26 mth age range he does not manipulate large buttons/snaps or tell someone about toileting needs. Score wa
s 37%, age equivalent of 31 months.

Overall he scored 85 on a scale of 115


Reading through the IEP, I love what they have decided as his goals. They are consistent with what we are trying to work on. They have him receiving preferential seating, meaning as close to the teacher as possible as well as use of an FM is needed, which we do not plan to use in preschool since it is a small class size and lots of circle time type of activities. Not sure how much speech a week they are offering at this time, will probably find that out at the IEP conference.

However, at this time, we are not 100% sure we are sending him to school. The evaluation coordinator thinks that this is NOT the best placement for him. She has evaluated most of the other kids that will be in the class and thinks that he will not be able to get the peer models for language here b/c of the other children's severity of delays. If he does go it will probably be 2 days a week. I'm currently looking into a church preschool that is 830-12, 4 days a week and then the school can send speech therapists out to work with him. Once we talk the everyone at the IEP conference, we may have a better feeling for the school and decide to send him. Or we may not.

Now, regarding the tests-he seems to be right on track for his language. He was activated(right ear only) in September 2008, so he is 21 mths hearing now. So that seems good to me that his hearing is right on target with his language development.

Great strides

Aidan amazes me everyday with what he is able to say. He is doing many 2-3 word phrases but they need quite a bit of work to get him understood by others that don't know him.

Apparantly that "b" that I thought was lost is not really lost. It came back the same day I posted about it being gone. Yea, he showed me!

We had the school meeting and they did an evaluation on him, which he ranked 77 and the cutoff is 77.5, so he barely qualified! I don't remember exactly what his scores were but if I remember correctly, his language was right on target(or close to) his hearing age, which is 21 months(for the right ear).

2 semi recent videos:

Met Aidan's new audiologist

We no longer have to go to New Orleans(6 hour drive) for audiology appts! We are now driving to Shreveport, only an hour away. The audiologist was very nice and was happy with how much Aidan was talking, said he was doing wonderfully! He was put in the booth and responded as low as 20 decibels with both ears on, 25 decibels with just the right ear(his first implanted ear), and 35 decibels with just the left ear. He got his left ear remapped and we left the right ear alone. However they noticed something is up with 2 electrodes on the right side during the NRT(neural response telemetry). Basically during the NRT an electrical signal is sent to the electrode(the internal part of the implant) and the activity of the hearing fibers are recorded onto the computer.

Not sure exactly what is going on, but we go back in July and will see a Cochlear rep that will be there so we can figure out what it is. It's possible it is nothing but it could also be a bony growth there preventing it from stimulating the nerve. If that is the case then they will turn off that electrode and add that specific frequency to another electrode, so he will not lose any hearing that he has.

Aidan is now in Mom's Day Out

We have signed Aidan up for Mom's Day Out at a local church so that he can get a little bit of interaction with other children and adults, and so I can get a break. It's exhausting being "on" all of the time for him, but well worth it!

I finally got him to wear the earmolds that I had fitted for him. They certainly help keep the implants on his head and we have even gotten rid of the babyworn setup!


We go for his genetic evaluation on May 13th, just 3 weeks away!

In language news, he is coming along very well. He managed to get the "s" sound--he actually said "ice", "rass" for grass, and "airplanes", it was awesome! He doesn't do it all the time with every word, but he will do it sometimes. It also appears that we have lost the "b" and "d" sounds. I've noticed a few weeks back that he rarely says those sounds. We had them in the form of dada and baba and were working on getting them for other words, like ball, dog, etc which he had managed to do a few times. However, I guess we focused on something else--who knows what exactly it was as I try to put a specific focus on some part of speech/letter sound each week and then work on the other things as well but not as hard. Anyway, I guess in focusing on these other parts, I forgot to add the "d" and "b" back in and now he won't/can't say them. Going to focus on that this week and see if he can get them back in there! My end goal is to try and get him to get "My Ball" so to get 2 different consonants in a phrase together. right now it is more "ma ahl" so I guess more of an approximation than it a correct word phrase. Hoping by the end of the summer he is more understandable by others as I understand most of what he says but his father as well as most others do not.