Hi! I hope this finds you all well. It has been a really
long time since my last update! Other than some changes in specialists, changes
in therapists, the addition of Sure Step braces for his pronating ankles, and a
steady incline in development, there has not been much to report…‘til now. J
Ezra saw neurologist Dr. Jean Teasley yesterday at MCV in
Richmond. Although she was very thorough and seemed to really know her stuff,
and although we’ve heard wonderful things about her and had a great experience
with her yesterday, our hunt for a
new neurologist will have to continue as she is transitioning out of
neurology to be a neuromuscular specialist.
At the appointment… We talked about Ezra’s head
circumference being in the 10th percentile at birth, dropping to the
5th percentile by 2 months, and by 4 months dropping to the
approximate percentile it is now (below the 1 percentile except when going
through growth spurts). What he has is called acquired microcephaly as opposed
to congenital microcephaly (congenital just means the condition was already
present at birth.). In my understanding, both types can be caused by infection,
trauma or genetics. Since the tests that were performed just after he was
diagnosed (at 11 months) ruled out infection and trauma, the assumption was
that his is genetic. Dr. Teasley said Dr. Proud (the geneticist who saw Ezra)
was known for being extremely thorough in pursing extensive testing. All blood work (& every other test)
has been negative so far, however this is more testing that can be done. We are pursuing that with genetics.
She believes the Babinski reflex is now only present in his
right foot, and only slightly. She said she thinks the Babinski reflex could be
resolving altogether. This is excellent news. She noticed Ezra’s heel chord
(Achilles tendon) is tight. Our physical therapist has been working with the
hypertonia in his feet (particularly his left foot). The neurologist explained
there can be a correlation between tightness in the heel chord and a problem with
the lower spine. (A Babinski reflex that persists beyond 24 months is a
neurological issue correlated with the spinal nerve.) He had an MRI when he was
11 months old, but they want to do another now that he is 3 to see if his brain
shows normal myelination (and to check out his lower spine). Hopefully we’ll
get that scheduled at CHKD soon.
What else? …she said there can be a correlation between
Microcephaly and abnormal blood sugar, so she is looking into Ezra’s recent
bloodwork and will be getting back to me about whether or not he should see an
endocrinologist. (Past thyroid testing has been normal.) She also recommends we
pursue food allergy &/or food sensitivity testing because of his chronic
loose stool and skin rashes.
Dr. Teasley was encouraged by Ezra’s cognitive development
and receptive speech development and proceeded to paint a positive outlook
about the good chances of him going on to live a normal life. Guarantees we know
we have: God’s nature is unchanging – his power and control, his love and
goodness… are steadfast. Ezra was fearfully and wonderfully made; God made no
mistakes on him. We praise God because we know He loves Ezra, that Ezra’s life
is securely in His control and that God will be glorified through Ezra’s life
no matter what He’s decided Ezra’s future will hold. God has a purpose for
everything.
Words can’t express how much joy Ezra has brought our family
and what a blessing he has been in our lives.
We are so thankful for your love and prayers for Ezra.
Attached are a few recent pictures of the little guy J. His smile is contagious.
Love to you all,
Wendy
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