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| Sawyer lost his first tooth in December. |
Sawyer's new (40+ yr
old) kidney is still performing well and staying healthy. He was in the hospital for a few days in
November because of a suspected staph infection, but other than that, he gets a
good break between kidney clinic visits.
He has been bothered
lately with pain issues especially in
his hips, legs and feet. Part of his genetic
syndrome has impacted his bones with mild dysplasia. One specialist suspects arthritis, probably
triggered by the dysplasia. Sawyer will
have an MRI later this month to get more answers. He has also started some physical therapy.
Sawyer's genetic
syndrome is still undiagnosed. All of
the testing (and it was a lot) has come up short. Sawyer has literally become a
poster child for kids with difficult diagnoses of genetic syndromes.
One of his
geneticists has found a new track to explore.
He knew of a group in France that could possibly help, but the distance
creates several insurmountable hurdles.
He brought Sawyer's condition to the attention of a group at Duke
University. They have now invited Sawyer
to be a part of their research.
Duke is
investigating the possibilities that Sawyer's geneticist has been
considering. If this becomes another
dead end, Duke will do full genome testing.
All of this will happen without us incurring any of the costs because
this is part of their research program (Woohoo!!). It would be great to get some answers to what
has plagued Sawyer, especially if it will help him in the future.
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Now that Sawyer has a functioning kidney,
he's starting to grow again. |
Sawyer is a tough
little guy. We know he struggles more
than what he communicates to us. In the
last few weeks, he has had a constant headache. We thought it was related to
his blood pressure because it has been
creeping up again. An additional
medicine was prescribed, which helped with the pressure, but not the headache. So, the docs are currently working to figure
this one out.
Thank you for the
continued prayers and encouragement. So
many people still inquire and reach out to us to let us know they are
praying. We are so grateful!
