he is not broken...

Well there is lots and lots going on in our world this month.

We are kicking off the month with a G.I. appointment this Thursday, followed by an appointment with a cochlear implant surgeon on Friday.  Why are we meeting with a cochlear implant surgeon you ask?  Good question, I will get to that later in the post.

The following week we have an IFSP plan meeting with several different parties to revise Lil Bill's treatment and goals plan.  We are also going to be seeing the eye doctor that week as well.  (Keep your fingers crossed for no glasses! We already have a hell of a time trying to keep hearing aids and braces on our boy!)

The following week Lil Bill will go under general anesthesia for an MRI, a cat scan, a bronchoscope, and to repair his frenulum.  The MRI and cat scan are screening for the cochlear implant candidacy.  Since he was going under general anesthesia his ENT doctor wanted to ad a bronchoscope to check on his airway diseases and to see if his left vocal cord is still paralyzed.  He also wanted to fix his frenulum.  The frenulum is a little piece of tissue maybe??  Basically its the thing that connects your tongue to the bottom of your mouth.  Lil Bill was tongue tied and actually broke that piece on his tooth, tried to fix it himself ha! But it is a little messy so they are going to fix it up too. 

We will be adding a pre op appointment before all the tests at some point, just do not know when.

We are going to end the month with Lil Bill's primary care doctor whom we really like!  This is a very busy month for us.  I do not think we have had so much going on in a month since Lil Bill came home from the NICU.  We will get through it.  Hopefully Lil Bill will not get sick this month, which would many appointments on to our schedule! 

He has not been sick in three weeks (knock on wood!)  This season (since Octoberish) has not been so kind to my little man.  He has been sick more than he hasn't.  When he gets sick he coughs so hard and so frequently he throws up so much.  Because of this he has not gained weight at all.  He gets weighed at daycare frequently and we have noticed a slight rise in his weight.  I was so happy! I hope it stays that way.  I am interested to see how much he ways at his G.I. appointment later this week.

SOOO we are meeting with the cochlear implant surgeon, and doing a bunch of tests for it?? For my readers to who do not catch on quickly, or rather because I never formally wrote this, we have decided to get the implants!  After much research, talking with professionals, and other families who have gotten their child the implants we choose to do so.  It is what we think would benefit Lil Bill the most.  Due to his hearing loss, and his auditory neuropathy, we do not know exactly how much or what he hears. 

It was best explained to me like this.  You know when a radio station goes staticy and you can only hear bits and pieces of the song?  Or when its just straight static and you can't hear any of the song?? Well that's exactly what auditory neuropathy is.  We do not know how severe Lil Bill's is.  We know that sometimes we could scream his name from a room over and he will hear it.  We know that sometimes we can scream his name from behind him and he won't even notice.  He has what we like to call hearing moments.

Here is a link.  The links under number 1 are what the cochlear implants will sound like.  The links under number two are similar to what he currently hears.

http://www.healthaffairs.uci.edu/hesp/simulations/simulationsmain.htm

I will never forget the first time we just knew he heard.  We were at his mom mom's house and the fire alarm went off when someone was cooking.  Lil Bill jumped and looked around and actually seemed to find the sound amusing.  Prob the only person on the planet to find that sound amusing huh?  So we were so excited and went and stood right next to the fire alarm with him.  Let's make one thing clear, there was no fire!  But we were so happy for him and he seemed so happy to hear something. 

Since then, it is very apparent that he does hear some times.  There is no denying that.  However with his booth tests, with his hearing aids on the highest settings, there is still not response until 70-75 decibels.  He displays patterns of babies and toddlers who can't hear.  One being, his vocalizations.  He used to babble, he used to vocalize so much.  He still will occasionally, but compared to how he used it, he does it so so much less.  This is because he can not hear himself and he is not getting reinforcement from his audio sense that he is actually making sounds.  He mimics us occasionally.  Simple sounds like AH and OH.  While he has say hi, yea, no, and mum (yes mum, he picked up a British accent somewhere), he does not say any on the regular.  He does try to communicate though.  He eye gazes and he grabs at things when he has the physical ability to do so.

Due to his physical limitations, we believe that signing would be difficult for him.  Billy and I have thought long and hard about this and had several discussions and we believe it is what is best for our son.  Based on his hearing loss, abrs, booth tests, and lack of progress with speech, he is a candidate for the implants.  However several other tests need to be done, such as the MRI and cat scan mentioned above and we have to get genetic tests done.  If all these tests come back ok then at some point in the near future Lil Bill will receive the cochlear implants.

I am so excited yet so anxious and scared.  To give my son the gift of being able to hear which technology has made possible is amazing.  Though I feel self doubt in wondering if we made the right choice for him.  We have made so many medical and developmental decisions for him and I always think about them after hoping we did the right thing.  But to implant him with something that will take away all of the natural hearing he has in order for him to hear everything more effectively, wow its a big decision.  My biggest fear is that years down the road he will think we were trying to fix him by doing this.  I do not want to fix him, he is not broken, I just want to offer him any opportunity I can.  He has had it so hard and has overcome such much, and continues to, so gracefully.  I admire him for his strength.  I just want to make his life easier and this seems like the option to do that.

More to come!