Tuesday, July 15, 2014

Feeding tube, physical therapy and Doctors appointments

I apologize once again for the late update on Will. I really need to find time to update on a regular basis. The days seem to go quickly around here.  Will is doing well at the moment.  He was tolerating his feedings great for the first two weeks or so.  Then after almost every feeding he would vomit.. the whole feeding up.. I emailed his doctor and she ordered an X-ray.  It turns out that Will had a lot of air pockets and constipation in his abdomen.  Simple fix, hopefully.  He is now on Miralax and gas drops.  It took about 5 days to get him back tolerating his normal feedings.  So far things are going good.  Poor Will,  developed a granulation (skin growth) around his button… Can't this baby catch a break!  Will is still very protective over his button which makes cleaning and applying medication to the granulation very, very difficult. The granulation should dissolve in a few weeks.
Will started his twice a week physical therapy today.  He tired fast, but he seemed to enjoy it! He worked on climbing stairs and using his tip toes.  He even got to ride a special bike, which he loved!

We met with his neurologist right before the 4th of July.  We were expecting all of the genetic results to be back from the labs.  Unfortunately they were not.  We received half of the results.  We should receive the rest of the results any day now.  However, there is a possibility that the blood genetics may come back inconclusive.  We have elected for Will to have a muscle biopsy if that happens. I will post an update on the genetic results once all the results are in. As I was preparing for this meeting I had re read Will's MRI report, in the hospital the doctors told us that Will had bilateral lesions (necrosis) in the basal ganglia.  The doctors showed us the MRI and the lesions in the basal ganglia.  However, when I read the report, it said necrosis in the basal ganglia and brain stem.  I was in shock!  I still am in shock!  How could the doctors forget to tell us.   He showed us the MRI images and sure enough.. there they were…in the brain stem.  
We meet with a neurologist in Houston in about a month.  We are very excited to be meeting with her.  She has the only Leigh's clinic in the country.  I have heard great things about her.  We are hoping she can give us a better understanding of this disease.  Since this syndrome is so rare not many doctors know much about it.  It will be great to hear what she has to say.

I am still in a state of shock that my baby has Leigh Syndrome.  Our lives are completely different than they were only three months ago.  I still cry, everyday.  I am hoping with time I will come to terms with his diagnosis.  I have hope and pray for a miracle.  I enjoy every single moment I have with my son.  

On another note, baby Lauren is doing great!  She is growing so fast.  She has her four month well visit and shots tomorrow. She is almost rolling and is smiling and "talking" constantly! 

As always, thank you to everyone for your continued love and support and prayers! 

Will-First day of PT

Lauren Loves Will

Will and Lauren playing

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