Inconclusive

So, last week, Julian had a gastrointerologist and a neurologist appointment.  That day, both Ryan and I had blood drawn to undergo the same blood test Julian had, so that our chromosomes will be looked at to see if Julian got is replications and deletions from us, or if they are malformations unique to him.

So, at the first appointment, the frustration began all over again.  Basically, Dr. Collins is thinking that the reduced gluten diet that Ryan and I had been doing with Julian since December was maybe what was to credit for the growth that Julian has experienced, and he wants to to do a strict gluten diet for four months until his next appointment there, and after three of them, have Julian's vitamin and mineral levels checked to see if he is absorbing better so that he can go off those medications.  If he is 'back to normal' then we'll have to continue the diet.  If not, then the diet doesn't work.  He might have the procedures repeated that he had initially for Dr. Collins.  We are finding that we weren't doing as good as we thought on the 'reduced' gluten diet, and it's tough so far.  We are both trying though, and I'm hoping that whether or not this diet works, we get answers.  Julian was 29 lbs at that appoint, so about 10% on the chart, and height wise, he was 50%.

At the neurologist, Dr. Abdalla, we got really aggravated!  Apparently, he does have two different sections of his chromosomes that point to two different disorders, but they arn't 'wrong' enough to exactly diagnosis him with the disorders.  One was an immune disfunction, and one was a muscle one.  So no new diagnosis, just more inconclusive findings.  Once again, Dr. Abdalla, really wants Julian to be seen at the Cleveland Clinic, and gave us another referal.  This time, because Julian is on a new disability insurance, he thought Julian could get in.  Ryan called that day, and we heard back today, and sure enough, Julian has an appointment the first week of June there!  This is a minor victory, we've been trying to get him in for over a year!  Basically, Dr. Abdalla doesn't have any more test he expects will help lead us to an answer, and he thinks that the Doctor at the Cleveland Clinic will have answers.  I am really hoping.  It's getting so aggravating to always have test show 'something' but not enough to be 'conclusive'.  What does that mean?

Julian has been going to the YMCA with his sister and I, and does great in his gym class.  He really tries, and only throws a fit here and there.  In the pool, he swims with arm floats basically by himself!  He does so well.  In his 'class', he's doing better, and really tries with beginning sounds.  He says 'no' all the time, and has started saying 'daddy'.  Julian's IEP meeting will be in May at the local school, and it's been suggested that we continue speech through the summer, since he's making such great strides there. 

I'll update when we know more!