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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