I have been pretty lazy about posting to the blog this past month. I am not really sure where my lack of motivation comes from, but mostly I think I am waiting for something newsworthy to report.
Owen has appointments this coming Monday in Boston at Neurology, GI, and Radiology. Owen's seizures remain uncontrolled by medication and are getting worse. We are meeting with a new GI doctor to review Owen from mouth to tiny tush because he struggles from top to bottom. He will have a x-ray of his hips to see if we can use a stander with him safely. I will do my best to provide an update on the appointments next week once we learn more.
We are eagerly awaiting the WES genetic testing results in the next few weeks. We were given a 16-week turn around time frame and that will arrive the first week of April. I am so eager to have the results and eager to learn more about Owen and what is happening to him. When we sent out for the testing, I had very little hope we would receive any useful information. At some point during this time period of waiting, my position has changed. I really feel strongly that this test is going to solve the mystery of Owen's disease. It is very difficult to be patient.
Here are a few pictures of my adorable guy:
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| Rocking his jeans (and genes) on Rare Disease Day |
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| Sisterly Snuggles |
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| Naptime with Mommy |
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| First time at swim class- LOVED it |
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| Two cute Irish kids |
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| Playing in the snow |
Hi Sommer,
ReplyDeleteThanks for the updates. I've been thinking about you & holding you & your sweet little angel & family in my prayers.
God bless.
Elissa Al-Chokhachy
Adrienne's mom