Saturday, September 24, 2016

National Institute of Health update!

Ok,  so I know it's been way too long since I last updated everyone.  It was a crazy summer and then we slammed into fall! Time flying by is an understatement!
Over the summer we took a short break from OT but started pool therapy for PT. Asher loved it and it was a great modality for him! He had always been obsessed with anything water so this was a definite win for him!  Other than that just the usual juggle of parks, kids, friends, dance (Lorelei), swimming, appointments, birthdays, and of course work.
Asher is now 5 years old and started kindergarten! He loves his new teacher and was very excited one of his best friends is in his class! We had to have "the meeting" of course before school began to go over his IEP and so the whole team could learn more about him and what to watch for.
We also got our official date and approval for going to the NIH, the largest research campus in the United States, and we are leaving tomorrow! This was all arranged sometime in August and its here already! Asher, Bob , and I will be going and thanks to fabulous grandparents Lorelei will get to stay home and maintain her normal schedule and routine!
They will be performing a variety of tests and lots and lots of interviews. They will be studying him from top to bottom, including his teeth! It all so overwhelming as our intent is to walk the line of finding answers without turning our son into a lab rat.  I have spoken to a few of the specialists already and so far they have all been very kind and assure me that we can refuse any test for any reason and it will not compromise the rest of the study or our eligibility.
I promise I will keep you all updated as we go but we probably will not have any more information on Asher's study for quite some time. Things take time and some tests take a lot of time to analyze, especially when you are not always sure what you are looking for. I have also been reminded, by several people, the answers we do get may not be black and white and may be more shades of gray.  As you all know, life in the gray is very familiar to us already and all we can do is hope and pray for less of it.  So here's to hope and safe travels!





4 comments:

  1. Praying and thinking of you as Asher's goes through the testing! Im so grateful to God for the wisdom and support he has provided for you!! May Hods mercies and grace surround you on this journey!!

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  2. Praying and thinking of you as Asher's goes through the testing! Im so grateful to God for the wisdom and support he has provided for you!! May Hods mercies and grace surround you on this journey!!

    ReplyDelete
  3. Hi Jennifer,

    I am very sorry to hear about your son's condition. I am working with ATG4 family in the context of cancer and I came across your blog while researching on ATG4D. Please let me know if you need any information of the autophagy pathway or any specific questions about the ATG4 family.

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