The road to getting here..

As I sit here while Lil Bill is taking his late night nap, a nap that I secretly love because he sleeps more quiet than he does at night and its sometimes the only time I get to myself throughout the day.  I sit here, anxious and nervous for whats to come.

This time next week I know the anxiety feelings will be amplified but I can't help but feel them now.  Decisions I was confident about I am now second guessing, I am becoming worried, wondering if this is the right thing.  Lil Bill's cochlear implant surgery is a week from tomorrow and I am thinking entirely too much about the actual procedure and the potential outcomes.  Last night Billy and I were watching House, a show we love and never ever get sick of, and we watched one of the doctors on the team drill into a patient's skull.  Billy then said to me, 'I can't believe they are going to be drilling into Lil Bill's skull.'  I can't believe it either, honestly I never thought about it, I still can't bring myself to think about it.  I called one of the surgeon's physician assistant today and asked her several questions about the procedure.  It was like, I was not present during our previous visits with both surgeons.  But I was.  How could I elect for an optional surgery that requires two mad men, or surgeons should I say, drill through my little boy's skull.  How could I have not processed all of this information?

This man's been busy!

The road to get where we are now, to one week away from Lil Bill getting bilateral cochlear implants has been a long and mentally draining road.  We met with so many people.  We met with both surgeons, at two different appointments.  Contrary to what I just stated, I do like them and do not believe them to be mad men.

We met with the speech therapist who will be working with Lil Bill and us twice a week for at least the next year to help Lil Bill learn to listen with his new implants.  She will be doing AV therapy (audio-visual) with us throughout that time.

We met with a social worker who made sure we did not need anything to help us keep our commitment to the year long therapy.  We met with the cochlear implant coordinator to make sure we were educated and helped guide us through everything.

We met a new audiologist who is a cochlear implant audiologist who accessed Lil Bill and will be the one handling his mapping.  Mapping refers to channeling the cochlear implant and working with its settings.

We met with a genetic doctor to rule out serious genetic disorders that could of caused this type of hearing disorder that Lil Bill has.  That doctor was able to rule out those specific genetic disorders.  However she was not able to rule out all genetic disorders.  So we went through with genetic testing.

The genetics doctor thinks its a possibility Lil Bill has Kabuki syndrome since he is showing at least five traits of it.  Its a rare genetic disorder and can account for some of his medical issues and developmental struggles.  All of Lil Bill's medical issues and developmental struggles can be blamed on him being born 17 weeks early, which in turn left him with brain bleeds and brain damage which left hi with cerebral palsy among other diagnoses.  All of his doctors believe this to be true.  This genetics doctor is bringing a different perspective.  Maybe he also has a genetic disorder.  I am trying not to think too much about it, he likely does not have it.  If he does, I can only imagine the stress of trying to figure out what is from Kabuki and what is not.  I can't find the write word to express how I feel about Lil Bill being almost 2 years old and he is still a puzzle trying to be put together.  Anyhow we are awaiting the test results.

Lil Bill during study. Was taped down to table but wanted to play most of the hour long test!

In the midst of all this, we still had our usual GI appointments, which lead to a gastric bypass emptying scan.  The scan showed that Lil Bill's acid reflux is more severe than we thought.  It showed that his sphincter in his esophagus does not close, it remains open.  So his acid reflux is constant, even if it does not actual come all the way up.  The GI doctor thinks this may be why Lil Bill screams in his sleep all night.  Three new meds were added last week, keep your fingers crossed we all get a good night sleep soon!

Lil Bill in his stander, working them legs!

Our routine neurology appointments called for and EEG for concern over seizures.  Well this brought unusually good news for Lil Bill, NO SEIZURES! Gosh I just love when his test results come back with the word normal in them.  Our neurologist thinks Lil Bill's legs have made  lot of progress.  He said if his legs can change the way they have, he is hopeful that his upper body may be able to too.  He suggested treatments like bot ox, which is often used for spastic cp, which Lil Bill has.  We are interested in this but it is not our primary concern at the moment.

Our pulmonary appointments haven't been horrible.  Lil Bill still has had another run with pneumonia, which he won woo hooo.  Still on the same meds for his lungs, still have the pulse ox, c pap, oxygen tanks, nebulizer, and now have added a cough assist machine to the mix.  Lil Bill is not a huge fun, but it works amazingly!!I

 In the midst of all that, Lil Bill has also started working with an organization called deaf/blind.  Lil Bill was working with an organization that worked with the deaf and hard of hearing.  However, there are vision concerns from some people who work with him.  The concern comes from how well he is processing what he sees from his eyes to his brain, this processing disorder is called CVI (cortical vision impairment). Lil Bill's new teacher gave us a good way of explaining CVI.  It is kind of like looking at a Where's Waldo book when looking at different things or people throughout your day.  So we had an IFSP meeting and transferred services to statewide services for the deaf/blind.  So far his new teacher does not think he has a severe case of it.  Her and some of his therapists are trying to sort out if he has CVI or if this is related to his motor skills.  Again, that puzzle I am talking about.

All of this lead us to this point.  A week out from the cochlear implant surgery.  So I did not remember a few details about the surgery, justifiable you think?

And now, where I a now, which is second guessing.  This surgery is an optional surgery.  Billy and I believe that it will enhance Lil Bill's life.  So do all the professionals we have met with.  But what if it doesn't.  Lil Bill can hear now; he hears static and doesn't hear clearly but he can hear.  These implants will take away all of that.  What if they don't work right?  What if Lil Bill's auditory neuropathy is not as severe as we think and he never really needed them? I wish there were some way to know.  I wish I could ask him and let him decide.  It is his hearing and it is his body.  As a mother I suppose it is natural to worry if I a making the right choices for my son.  I know it is my job to make these decisions, well mine and Billy's.  And together I feel as though we do a good job researching information, meeting with the doctors and therapists, and talking to families' who have been where we are and then taking all that information to make the best choice.

It still doesn't make it suck any less.  Lil Bill is so happy.  I do not want that happiness to go away because of a bad choice we made.  Sometimes I wish the important decisions that were put on us, were not this big.  Sometimes I wish this was a little easier.  But this is our life and our situation could be a lot worse.  As I said Lil Bill is so happy.  All the time, he truly is.  If anyone has a reason to be angry or upset it is him and he just wants to have a good time all the time.  That is a huge blessing itself!  I think we will be OK.  The anticipation is always the worst part!  Our new normal is going to be beautiful, I really do just know it!

Lil Bill in his new wheelchair/stroller, just living it up.

I am so grateful that we are so close to such a great children's hospital with such a great cochlear implant team. Lil Bill could not be in better hands and I am so glad they are on this journey with us.