Going Cochlear!

Dallas's cochlear implant was turned "on" today.  It went exactly as we expected.  When it was turned on, he cried.  Keeping it on him will be our greatest challenge (as you will see in the video below).  He is constantly taking it off, but as with everything else, he has to get used to it.  We felt relieved that he had a response and that everything seems to be working, that is really all we could hope for.

They have set the sound on a low setting and we will very gradually be increasing it until we reach a point where we all feel Dallas is getting the most out of it.  They do not want him to dislike the device, which is why they start low and move slowly.  We were sent home with 4 programs, meaning we can increase the sound as he is tolerating it.  Then we go back on Wednesday for a programming update where we will get more programs added to his remote and so on.

The video below shows the very first set of testing.  At this point they are making sure that the electrodes implanted are working properly.  This video shows a very obvious response from Mr. Dallas!

http://www.youtube.com/watch?v=ZXXDVgYnHFY

On the way to get my "ear" turned on!

15 Months

What I thought was going to be a great 15-month check up turned in to quite the opposite.  Dallas immune system lab results came back and he has what is called "Hypogammaglobulinemia." This is a disorder that is caused by a lack of B-lymphocytes and a resulting low level of immunglobulins (antibodies) in the blood. Immunoglobulins play a dual role in the immune response by recognizing foreign antigens and triggering a biological response that culminates in the elimination of the antigen.

Basically, he cannot fight off infection, nor does his body respond appropriately to inflammation, or certain immunizations.  And now for the treatment.....he will have to have a port placed under the skin near the top right side of his chest.  This port will then be used to administer monthly blood treatments.  He will need this blood for the rest of his life.  Once he is older, he will get it in the form of a shot.  The blood is taken from humans, pigs, horses, etc., then purified before given to him.  We do not see the immunologist until the end of October to get things started.

Also, his linear growth (height) is deficient.  He dropped from the 4th percentile to the 1st percentile.  We will be meeting with his endocrinologist in October to discuss potential treatment options.

This was all very unexpected and will take some time to absorb.  What I think about most is Dallas, so many appointments, therapies, surgeries, needle pokes, etc.  He goes through so much and still manages to be such a happy guy.  I pray there is never anything that takes the wind out of his sails.

We finally had our official follow up appointment today with the surgeon.  It lasted approximately 2 minutes.  He didn't even sit down!  Anyway, he did see some improvement in Dallas's face, which we have also begun to notice.  There are subtle signs that some movement is returning.  This is incredibly encouraging and gives us hope.  I tried to imply that perhaps this could have been prevented by placing the ear tube back in right after surgery, and his response was that it would have filled with blood and resulted in a loss of the tube, thus resulting in the fluid and inflammation problem anyway.  At any rate, it is what it is and he seemed optimistic about the improvement thus far and thought it could all be back in another month or so.  He also stressed that Dallas's nerve path is much different than "normal" and the final outcome is not black and white.  We have heard lots of different timelines, so I won't hold my breath on any one time frame......I just think we have to be patient and believe there is a good chance for a full recovery.

Monday we get the device activated!  We will video tape and post an update early next week. 

Waiting for the doc!

We Miss Your Smile

It has been a long week since the ear tube surgery.  We have waited anxiously for the movement in the right side of Dallas's face to return and there has been no improvement.  I left a message for the surgeon yesterday and we heard back this morning that it could take anywhere from 4-6 weeks, or even 4-6 months for his nerve to recover.  While this is very disheartening, at least our expectations can be more realistic and hopefully I can stop analyzing his every facial movement wondering if there was a slight improvement here or there.  For me, this has been very difficult to deal with.  One of my prenatal doctors gave me some advice when I was pregnant, which I didn't much appreciate at the time, but I know exactly what he meant by it now.  He told me that there was a bright side to having a child born with a disability; you can grow with their disability and start out from Day 1 knowing and loving your child as they are with their disability, versus having a typical child for years and then one day in their life having something tragic happen and then your child winds up different after knowing them a certain way for so long. While I know Dallas wasn't injured tragically, his smile was his signature. Without it, he is different to us.  The story mearly helps me understand why this has been so hard on me versus anything else. We got such a kick out of that boys grin and it made us smile every time.

Dallas is otherwise improving as it relates to his appetite and overall disposition.  He seems happier, although just not quite back to himself.  He is starting to eat and drink much better comparing to a week ago.  For now, it will be back to focusing on his strength, his eating/drinking/chewing skills,  and soon his hearing and speech. 

There will not be a morning that passes where I won't hope to walk into his room and see his big smile again, I can wait....just not forever. :)