Wednesday, January 15, 2014

zachary update: it wasn’t my genes

In the past month Zachary had his every 3 months round of visits with Metabolic, Genetics, GI, and his Opthamologist.  (Neurology is still to come later this week)  And that's not counting the 4 therapy sessions every week.  He was weighed, measured, poked and prodded multiple times.  After all these visits I re-learned a few things. 

1.       A stroller is always a must at appointments, for walking up and down the halls while waiting. 
2.       Daddy is always more fun while waiting in the doctor’s offices that Mommy is. 
3.       An iPad is always a must – particularly if it’s loaded with Fisher Price apps. 
4.       Mommy and Daddy always deserve a stop at the Cheesecake Factory as a reward after the long appointments.

Medically we saw Zachary’s weight fluctuate a bit but heard doctors who were pleased with his slow but steady physical progress.  He will have blood and urine tests every 4 months to track his kidney function – a primary concern with Lowes.  So far things are okay with his kidneys!  His eye pressure continues to look fine – which is also a common concern.  One of these days both of those will probably be an issue, but I’m praying daily for his kidneys and eyes, knowing God is in control.  We are also waiting for his new glasses to arrive.  Because they are such small frames and strong prescription they have to be special made at a lab which takes time, as in 4-6 long weeks.

 A new crazy prescription he started is an antihistamine.  Not because of allergies, but because of its side effects.  The side effect of the antihistamine is hunger.  Hunger makes you want to eat.  Eating hopefully makes you grow.  Or at least that’s the plan, strange as it sounds.

Last month Zachary was also fitted for a therapy stander.  More on that with pictures when it finally arrives!

At his metabolic and genetic appointments I was poked as well.  I had blood drawn to see if Zachary’s Lowe’s diagnosis came from me.  The doctor called yesterday to say I was negative for the Lowe’s mutation.  For the first time in a long time I had questions for God.  I think I more wanted an answer that scientifically proved why this showed up.  Instead we have an instance where Zachary’s gene mutation just happened.  A new strain popped up.  I know God just decided this is what was best, but no scientific answer makes me want to ask God why.  Why?  I’m sure I’ll ask that over and over throughout the years.  But I know God has his reasons, far above my understanding.  

I have a special kiddo.  A special boy who needs my extra love and attention.  And I’m here, giving him all I’ve got and thanking God for the way He shows himself evident through this sometimes easy, sometimes hard and long journey we are on.


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