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.

Aidan doing his letters(until he got distracted!)

Occupational therapy and sensory stuff

Aidan gets to see the occupational therapist once a month now. Kind of sucks since he was going to do 4 times a month, but since his issues aren't "severe" then it'll be ok.
He has been doing a bit better but is still not able to sit well without some form of support. When he sits in a chair he usually leans his back against it, when he sits in my lap-he uses me for support. When sitting on the floor he either "w" sits or uses hands for support. And so on. But he has learned 'criss cross applesauce' and 'big boy legs' and will immediately go to indian style sitting and does fairly well with that, although his knees are a tad high for extra support.

His occupational therapist gave us a "brush" to use on him for "brushing" to help with a few sensory issues--mainly the biting he is doing. This is used as a calming technique and I can do it with all 3 kids. And they all love it! Our oldest, Alex, does have a few very mild sensory issues, I have always known that, but it isn't something that really interferes with life so it's never been a big deal to us. She actually told me that she thinks I most likely have some as well--due to the fact that I do not like to eat many meats--like steak and chicken(and anything chewy). Who knows if she is on base or not, but I wouldn't be surprised. So we are trying that out and it is going fairly well.

The school situation

We have recently found out that Aidan will be in a self contained classroom for preschool this upcoming school year(Fall 2010). I have my concerns-mainly being that he will be in a class with only nonverbal/speech delayed children, whether it be children with autism, down syndrome, or a severe speech delay(like Aidan). I know the teachers at this school are wonderful as my oldest goes to the same school but is in the 4 yr old preschool program and in a regular class. But since he will only be with other children classified as special needs, I'm worried that he will not have any children to be a peer model for him, with regards to language. I know he would learn from teh teachers, but kids learn so much from other children and he may not have that. Of course, this concern is not fully validated b/c I do not know what kind of children will be in there next year. There very well could be children that will provide a good learning environment for him. I teeter back and forth on whether he should even be in a class with cognitively delayed children. Not that that is a big deal, but he is severely speech delayed, my goal is to have him hopefully caught up by kindergarten, and I really need to focus on him being around good language models, as well as behavior models. Aidan imitates behavior very easily-whether good or bad, so I also do not want him acting out even more as he already has a tendency to be a "bully" b/c of the lack of language.

We are having our transition meeting on the 15th and we will meet a few people and they will get to meet Aidan. After that I am going to ask if we can observe the classroom so we can actually see what goes on in the class and if this will be where we want him. I am also going to ask(or beg!) them to let us bring Aidan in to see how well he interacts with the other children. I can watch the other children alone and form and opinion, but I think seeing him in that environment will really help us decide on this. If it seems like it will work out, that's awesome! And it will truly lift a weight off my shoulders.
But if it doesn't, I really do not know what we will do. There is the possibility, albeit a slim one, that we may be able to get the school system to pay for him to attend another local preschool--montessori program or the church preschool, that would be with neurotypical children instead of a specialized "special needs class." That is a very slim chance of that happening though. I'd like to be able to get him into the Montesssori program or even the local university's learning center but there is no way we can swing the tuition. I know one of the church preschools is aorund 350$, not sure about montessori, but there is no way. We do not have any disposable income right now and won't until our bills are paid off---we can't add several thousand more dollars of debt, not possible. So, fingers are crossed that maybe the school will pay for this(if needed of course!) or maybe there is a grant out there that could help cover it. We will hopefully find out more in a few more months.


Oh and one other thing--Aidan had his eyes check--and he is farsighted, he will more than likely have glasses by the end of the summer. Also, when I took Alex and Andrew for their eye checkups a few days ago, I was told they were also farsighted but had perfect 20/20 vision. But she told me that Aidan was farsighted and did NOT have perfect 20/20 vision. Now, I'm not 100% sure what this means, but I know it means he will need glasses for the farsightedness, but also probably will need them as well for the non perfect vision, so maybe he will end up being nearsighted? I'll find out in 4 mths when we go for his next checkup.

February/March

So glad we are heading into Spring! We have some beautiful weather, although a bit rainy, but the kids are loving being able to get outside more and it gives more opportunities for some more informal speech opportunities.

What we have been working on:
-Aidan has learned most of the basic shapes-triangle, oval, circle, square, star, heart, and rectangle. Have started more complicated shapes--although not very much as we really need to get a puzzle with these shapes--he loves doing his puzzles!
-Numbers-he is understanding the concept of numbers and will count out all kinds of things. Most of the time he can recognize the numbers 1-5 and they do not have to be in order, so it isn't just from memorizing that it is 1, 2, 3, 4 and then 5. I think he also knows a few others up to 10, but it is inconsistent. He will repeat any number after I say it, still doesn't say it clearly, but once he gets more consonants, I think that will really help with others understanding him.
-Colors--we are working on teaching colors and he knows the different names of the colors and can match correctly 2-3 of them. Sometimes he can do 6 , sometimes not.
-Letters-He knows several letters--I know that he knows at least 10-15, but he usually gets bored by the time we get through about 12-15 of them so it is hard to guage if he knows more or not.
-Possession--we are working on this. We've been focusing hard on this--for example "this is Aidan's shoe, this is mommy's shoe" and other similar things. He seems to have this down fairly well and we are now adding in "yours and mine" I think he has "mine" down he just forgets to use it :)
-Adjectives--we have been working on this for a while, but he seems to have trouble with this. Big, little, short, tall, etc. ALthough I do forget to work on this quite often, so he may pick it up if I put some intense focus on it for the next 2-3 weeks. I am rushing to catch him up. I know where other kids his age are, I know what he is lacking so I am in a big rush to get him closing that gap as quickly as possible. And in that rush I forget to some of the simpler things---for example--big and small, yet he is learning numbers, letters, and some colors. We will get there :)

-Some things we are focusing on right now--more complex tasks-usually we are doing single instructions-"feed the cow" when playing with farm animals. Now we are moving on to "give the apple to the cow" It's hard for him b/c he does tend to focus on the last word that was said, so we really need to work on his auditory memory. We are also starting to work on "yes/no" questions--for example, when looking at a book, asking him "is the cow wearing a hat?" "no he isn't wearing a hat" and then "is the horse wearing a hat?" "Yes the horse is wearing a hat" and similar things. I figured "yes/no" questions meant getting him to answer yes to things he wants, which in a way, it can, but it also gets him thinking further.

It's hard to know where he is regarding "thinking" as his expressive language is very simple, so he can't tell me about his day, what he had for lunch, where he would like to go, what he would like to eat, etc so we are working on getting him to express everything. I have the habit of getting him what he needs without him having to ask, so my task is to make it harder for him to get what he wants/needs, force him to ask for it. And I know this, but mommy mode comes into play and I forget/it makes my life easier to do it, so that's what I stick with. Working on breaking that habit though!


His attitude---most people don't realize how difficult Aidan can be, besides Edward and I, as well as my sister, Katie. He is usually shy around other people or much calmer. However he is starting to show his true self to his speech therapist, which can be challenging at times as he is usually such a people pleaser whereas right now, he could care less! Aidan is incredibly strong willed, which can be extremely frusturating, but I do know it will be good when he is older. It has taken me quite a while to learn how to "manage" him. At times I feel he is running the house with his temperament, but I am trying to get into the mindset that he isn't running the house, "I am just giving him what he needs to grow the way he needs to." Doesn't make it easier most times, but it helps me not lose patience with him. He must do everything himself, if you do something a particular way that he doesn't like, he will have a massive fit, so I've often felt like I've catered to him to avoid those tantrums, but the last week or so, I've been careful to "keep him happy" for the most part, and you know what? He has been a lot happier, he is just a child that needs that kind of control, and I think that's ok. I of course do not let him get his way all the time--there are definitely limits with regards to safety(running in the parking lot!), but more often than not, I've been asking myself "why am I saying no?" and if there isn't a good answer, then I do not fight his need for that control.

Aidan knows his shapes

Aidan seems to have learned 5 of his shapes: Circle, square, rectangle, triangle, and oval. Looks like we need to get a more complicated puzzle(if they make one) for him to work with. We actually have some flash cards with shapes and I do believe they have the other shapes but he loves working with puzzles/hands on things like that, he learns it a lot quicker.

Genetic testing and vision test

Aidan has been referred for genetic testing and we are scheduled for a genetic evaluation on May 13th. From what I understand they will take a history and get all of his information from the other doctors before this appt and then will decide if they think he should have it done. I'm fairly positive that they will do it. We still do not know if insurance will pay for it. I called our insurance company and they need the codes of the tests first and then they can tell me. However I really don't think the genetician(is that what they are?) would be willing to give me the codes, she was quite nasty on the phone when I called last time for some information. So I guess we will get in the thick of it and then find out if insurance will cover it. We will definitely find out before we start the tests as they are very expensive--we are looking at anywhere from 1800-7000 depending on which tests they decide to do.

In my quest to find out some information on genetic abnormalities that cause hearing loss, I decided to also look up any disorders/syndromes that also have hearing loss as a symptom. None of them fit except possibly Usher Syndrome. It is characterized by severe to profound deafness occuring at birth or shortly after(Have that) and a progressive loss of vision. The loss of vision can happen in the first couple of years or it can take several years before it starts. So I freaked and made an appt to have his eyes checked.

Aidan is farsighted in both eyes, one eye was +2.0 and the other was +1.75. I believe this is mild farsightedness. Since a lot of babies are born farsighted and it gets better over the first several months, we aren't sure if this is leftover from that and it is still getting better or if it is getting worse, or the same. If I had had his eyes checked at 6 mths, then we would have a better picture. But no, we were too busy with the ear problems. He will be checked again in August and if it is the same or worse then it probably isn't getting better and we will most likely do glasses. Not sure how we will get glasses AND his implants on but I'm sure we will figure that all out when the time comes.

Oh and the Dr saw no sign of the retinitis pigmentosa(the thing that causes the progressive vision loss) but she did say that that doesn't mean he doesn't have it, we need to do routine checks(every 6 mths) to make sure it doesn't develop. I do believe that if the genetic testing rules it out then we won't have to check so often.

Aidan counting to 5

Aidan amazes me everyday with what he knows. Out of the blue he will say something that I didn't "teach" him and he just picked it up. It is cool when those moments happen as it can be a little harder for kids like Aidan to learn incidental language. This is a video of Aidan counting to 5, using his book that has a number on each page and a picture on the opposite page. I got it for him for Christmas and we have looked at it maybe 1-2 times a week. We tend to count objects quite a bit but he sees the actual numbers less frequently, maybe 1-2x a week. I was shocked and amazed when he picked up the book and said each number on the page.

2+ words

Aidan is progressing from single words to 2+ words together. He told me to "be quiet" and covered my mouth the other day while I was singing the ABCs. Of course it was said more like 'ee why eh" We have also been working on 'I love you'. He doesn't know what it means but I am trying to teach him. He has said twice "I uh oo" right after me so hopefully one day he will get it. Some other ones are: Mommy Look, Alex school, no no Andrew, night night Andrew, and a few more that I can't think of at the moment. He has learned the word "mine" and uses it correctly most of the time. Does a ton of word approximations, imitates most anything for me, but not for others especially if he is being shy.

He has started Tech and that is going very well. He didn't say a word the first couple of visits but now he is a chatterbox and really enjoying it.

We are in the last 6 mths of speech through Early Intervention. Sometime in the next few months we will see someone from the school board? or maybe it is from the actual school Aidan will attend this coming Fall. But we will see her and she will evaluate Aidan to determine how often he will go to school-from my understanding it could be everyday but not sure if it is a full day, or it could be 2-3 days a week. It all depends on the the severity of the delay when he gets evaluated. Currently he is considered severely delayed. I am hoping that by the time August rolls around(when school starts I believe) that he will be at only a moderate delay.

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.

The hearing world of Aidan

Aidan is in quite the mood lately. And not a good one. He had a checkup yesterday b/c I wanted to get his ears checked before Christmas. His ear infections are gone, thanfully. So that means his moodiness must be teeth. I don't blame him, they hurt. On the hearing front, he is doing pretty good. I don't know what he is hearing, but he definitely hears us. Occasionally he will turn when I say his name. I don't think he knows his name yet, he is just hearing me say it! I have noticed he turns a lot when I say words that start with A, maybe b/c I say his name a lot :) Today he was a bear and kept pulling off his processor. So I took it off and let him have a break. What do you know, he seemed to be even more irritable with it off. I put it on 1 hour later and he calmed down. So I think he is starting to recognize that sound is GOOD.

Aidan saw Santa

And he didn't care for it. I didn't take the other two boys since I didn't expect to see Santa. Hopefully soon they will all get to see him.

News on Aidan

We had Christy(ST) and Margaret here today working with Aidan. Margaret works with all the deaf kids in the local parishes, so hearing loss is what she knows. She gave Christy and I both some good ideas on what to do with Aidan. We are putting him in the highchair with 1 person in front of him to sign/talk/play with him and the 2nd person sits behind him and introduces sounds(from speech and toys) to see if he will turn to it. He turned to the sound quite a bit so he is hearing. But there were times he didn't turn and that was mainly when he was too engaged with something else. So we need to work on getting him to ackowledge sounds while being occupied.

We do notice him responding to some stimulus in the everyday world, but the environment needs to be pretty quiet and the stimulus needs to be loud. We are of course running into the problem of having 3 children in the house. Alex is always running back and forth, yelling, talking, whatever. Andrew is either being held, fed, rocked to sleep, or crying. So it is a very busy environment for Aidan to learn in, and that is a problem. Don't think it can be remedied, short of sending the kids to live somewhere else, which won't be happening. So, I do think it will take a bit longer for Aidan to learn, but maybe by the time he is 2 he will be old enough to realize that the implant helps him and won't take it off as much. Only time will tell.

Christmas Fun

Send your own ElfYourself eCards

Christmas Card I made

Those that are family will receive one in the mail in a few weeks

Aidan hearing

Only sometimes does Aidan acknowledge a sound,here is a little video if him doing just that :) I know it is dark, but it gets the point across

The Special Mother

The Special Mother

I recently stumbbled across this inspirational story written by Erma Bombeck:

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instruct His angels to make notes in a giant ledger.

“Armstrong, Beth; son. Patron saint…give her Gerard. He’s used to profanity.”

“Forrest, Marjorie; daughter. Patron saint, Cecelia.”

“Rutledge, Carrie; twins. Patron saint, Matthew.”

Finally He passes a name to an angel and smiles, “Give her a handicapped child.”

The angel is curious. “Why this one God? She’s so happy.”

“Exactly,” smiles God, “Could I give a handicapped child to a mother who does not know laughter? That would be cruel.”

“But has she patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it.”

“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has her own world. She has to make her live in her world and that’s not going to be easy.”

“But, Lord, I don’t think she even believes in you.” God smiles, “No matter, I can fix that. This one is perfect –she has just enough selfishness.” The angel gasps – “selfishness? Is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a “spoken word”. Nor, will she consider a “step” ordinary. When her child says “Momma” for the first time, she will be present at a miracle, and will know it!”

“I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them. She will never be alone. I will be at her side every minute every day of her life, because she is doing My work as surely as if she is here by My side.”

“And what about her Patron saint?” asks the angle, his pen poised in mid-air.

God smiles, “A mirror will suffice."

Aidan is finally walking

Aidan decided that 15 mths was time to start walking and is taking off. He is now officially walking more than he is crawling.

Playing baseball

Yesterday when we went outside, Aidan decided he would play a little ball.

Getting the ball up there:


Getting ready to bat:


And chasing after the ball:

New therapist

Aidan's new therapist stated today, she is great. She gave me some great tips to help Aidan localize sounds and we noticed today that he is reacting to sound! He blinks when there is a loud sound, so it is like he is startling, but not like a newborn startles. This is great news!

I went through the kids toyboxes to find the toys that make the most sound, zylophone, piano toy, rattles, hammer, and put them in a special place just for Aidan. We will be working as much as possible every day with him to help him localize sounds.

Stares

So I took Aidan with me to do the grocery shopping today. It was his first day to wear his implant in public. It felt so weird for everyone to be staring at him. Would have been much better had they just asked me what the heck that contraption on his ear was instead of walking with their head craned backwards. He did very well keeping it on though, the store is a nice distraction for him.

While checking out at the store I ran into a girl I went to high school with. I can't remember her name, heck not even sure I ever knew it. Anyway, she is also deaf and has a newborn daughter. I talked to her a few minutes-how neat that she can read lips and talk good enough for me to have a conversation with her. It was nice to see that even though she is deaf she still has a life. Something I worried about with Aidan-whether or not he would go on to have a family, go to college, all the typical adult things. Too bad I didn't think to get her email so we could continue talking, but I am sure I will see her again eventually.

Better and Better

Aidan is becoming much more accustomed to his implant processor as the days go by. Still not wearing it for long periods of time but we can get him to wear it for upwards of 20-30 mins before he starts really fighting us on putting it on. We even got an hour out of him yesterday and that was with him only pulling it off 2-3 times. We have come to the conclusion that if we take him outside and carry him around the yard, or pull him in the wagon, that he will leave it alone. We have bumped him up to the 2nd level and are on the 3rd volume of that level. No visible response to sound yet, but I think he does hear some b/c of the look on his face when I turn it on. Not sure how high of volume he may hear, but I think it is some.

New haircut

Took Aidan to get yet another haircut today. That boys hair grows so fast, but it is gorgeous. No more curls for now but I am sure they will be right back in a few months.

Before:


After:

And he is on

We had Aidan's activation today. Went pretty well. He does not like his equipment that goes on his head and pulls it over every minute or so. The audiologist put in 4 different levels for now. There are a total of 50 levels she will program into it over time. Each level has 9 levels of volume in it. So right now he is own the first level with volume at 6. Over the next few days we gradually go up to 9 and when we have been there for a while we go to the 2nd level and go through the 9 degrees of volume, then to the 3rd level, eventually getting to the 4th level with a volume of 9. After we reach that(within 3 weeks) we go back to the audiologist and she adds 4 more levels for us to work through. Eventually we will get through all 50 levels---each level gives him more and more hearing--I believe it is set at diffrent decibles and increases as we go up, but I am not 100% sure.

So right now he is hearing at the lowest frequency, meaning he really can't hear us right now. Mostly he is getting used to wearing the processer on his ear and stimulating his brain/ear to accept the new sounds. He is hearing something though as he cried as soon as the audiologist turned it on. He pouts/whines everytime I put it back on his head and turn it on. Hopefully he will stop pulling it off and get used to it soon. All in all, very encouraging.

Aidan playing on his new firetruck from Mimi:


What his implant actually looks like-a rare moment with him keeping it on:

New Activation Date

I finally was able to get the audiologist from Oschners Hospital on the phone today. We are now set up for an appointment on September 15th, so 10 days away. I am really looking forward to this day but I am also dreading it. This is the day we will find out if this is going to be successful for him-so it will either be a really happy day or a really really sad day. Overall, it will be an emotional day for all of us.

I did get his Dr's bill in today. In total, he has run up a bill of $55,000. That doesn't include the next several months of adjusting the implant to get it working right, the several years of therapy he will have, or the several years of Dr's appts that are sure to follow. Thank God for Medicaid or we would be screwed and he probably would never of had this opportunity at gaining some hearing abilities.

Damn Hurricane Gustav

SO it looks like Gustav will be hitting Monday and Tuesday and it is headed towards New Orleans. We were supposed to be headed down to New Orleans on Tuesday to get Aidan's implant activated. It doesn't look like we will be going, but we will find out for sure Monday night/Tuesday morning. It really sucks, I was really looking forward to this day and don't want to postpone it. I am hoping if we do have to cancel it that we can get in later that week or early the next week. Our luck we won't be able to get in for another several weeks, then I'll be really pissed.

So much new stuff

Aidan has finally started signing some. He signs eat, ball, cold(though I don't think he understands this one), and baby(not sure if he gets this one of not). It is great to see him finally connecting things together.

Aidan is now also getting tooth number 2 and 3 in. Although he is also grinding them together which I hate the sound of. Hopefully he stops doing that very soon.

Aidan is finally walking while holding onto my hand, but when I let go he will not go any more. He is still very unsure of it but I expect him to be walking by 15 mths. That gives him a month and a half to get a little more confidence.

He is also stacking blocks(and putting them back in the bucket). I love seeing him connect everything together and try to copy me. He also will pick up toys occasionally and throw them in the toy bucket, although he usually prefers to throw them out of the bucket :)

AIdan and ALex have a new brother!

We welcomed our 3rd baby boy into the family on August 18, 2008. Andrew John David was born at 8:09am weighing 8lbs 9oz and 21" long. He has a head full of brown hair and looks like his mama :) Not at all like the other 2 boys. Alex does ok with him, he could really care less lol. Aidan is a bit jealous and not quite sure what to make of him. I think it will get better in about a year when Andrew is mobile and can play.

A few pictures:

Finger paint

I took the kids outside to finger paint a few days ago. Aidan didn't really get it but I think he enjoyed himself.

A few pictures:





I decided to brave giving him his own plate a few days ago. Of course it was lasagna so that was a big mess. He really enjoyed it though.

Activation Day

We have scheduled Aidan's implant activation day for September 3, 2008. I cannot wait for it. Originally we didn't think I was going to be able to go with Edward, since I will be having a csection on August 18, but I think I will be healed enough to go. Even if I am not, I think I will push myself anyway. I may be in a lot of pain, but I don't want to miss that moment for anything. We haven't told family yet when the day is and might not if we don't have to. I can see everyone calling us all day that day to find out the news and if it doesn't work, it will be pretty hard on us. Some of our family don't seem to understand that this isn't 100% foolproof, it may not work at all. So everyone please pray that it works for him and he can finally hear on that day.

Current picture of Aidan's scar

For all wondering, Aidan's incision is healing quite nicely. Soon you won't even be able to see it. His hair is growing quickly and I think in 2-3 mths should cover the spot :)

This is the best picture I can get, I have to wait for him to be asleep before he will elt me get a picture as he loves having his picture taken and will cheese for the camera :)

Learning many new things

Aidan has been learning a lot of new things lately. He finally figured out how to drop the balls into his ball toy, he also picks up toys and puts them back in the toy bucket :) Of course he still enjoys throwing them out more. He has finally gotten his first tooth at 12.5 mths old, YAY! Now if only he would get some more. Edward is taking him down to New Orleans tommorow for a checkup. Kind of sucks b/c he will have to drive there tommorow night after working 6 hours, it is a 6 hr drive, so they won't get there until 11pm at the earliest. The appt is at 1:15pm and will most likely only take 20 mins tops--I believe they just want to make sure the incision is healing like it is supposed to, which it looks great to me, I'll try to get a picture when he wakes up.

Alex and I made cookies today, thay boy is loving to cook. He doesn't like to eat though, weird little boy. Aidan ate his cookie and enjoyed every minute of it. A few pictures to document his first chocolate chip cookie.

Not too scary looking

Aidan finally managed to pull the steristrips off of his incision today. So I got my first real look at what it looks like under there. Not as bad as I expected, but it does go up a little higher than I thought it would. Still a little swollen and it is bruised around the area. I think it is itching him just a bit as he keeps scratching at it.

Here are a few pictures of what it currently looks like:

Aidan's surgery

Aidan did pretty good for his surgery. He didn't come out of anesthesia happy at all, in fact, he cried for the first 5-6 hours off and on while trying to sleep. He is happy now and doesn't seem in too much pain. The incision isn't as big as I expected but it is a lot more swollen than I thought it would be. We have to go back for a checkup in 2 weeks I guess to make sure his body doesn't reject the implant. Then we will go back sometime in August, maybe beginning of September. I am going to add some pictures from the surgery so feel free to skip the last few that show the incision if you don't think you can handle a little blood.

In his hospital gown





Edward and Aidan sleeping after the surgery



Aidan is finally in a happy mood, but hates the bandage


Picture of the incision site, still covered with steristrips and will be until the fall off


You can kind of see how swollen that side of his head is