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Sunday, August 27, 2017

End of the month update

I finally have time to sit down and write an update on everything. School started for the girls last Monday. The first week went pretty well. Bella is currently in a daily reading class trying to help her catch up some. She is currently finishing up work she didn't finish in 1st grade last year. She has her AIMSWEB assessment on September 21 and from there will likely be moving on to 2nd grade work!!! Her reading is already greatly improved from last year and she enjoys doing it finally!
One day after we did the school work we took a field trip to the park up the street and went rock hunting and learned about the tree life cycle. The kids learned a lot and we all had a lot of fun. That is one of the amazing aspects of homeschool, that you can take field trips like that and take the learning on the road and be more hands on. We love going to parks, farms, zoos and museums as our fun and learning field trips.
Now for the update a lot of you have probably been waiting on. We finally got our genetic testing results and in the end we really got no results. We had done genetic testing on louie back in 2013 and it came back he has 3 mutations, 2 from mom and 1 from dad. They know almost nothing about these specific mutations and so they are unsure of the significance of them. Fast forward to when Silas was born and sent to genetics. They tested Silas for the same mutations and he has 1 of the 3 and it is 1 from me. The assume since I have no major problems that that specific mutation has no significance. Well on this test they only found those same 3 mutations that they still know pretty much nothing about. We are now waiting a year to see how they are doing and then depending we will be doing the Full Exome testing which is the biggest test they ca do currently. These are the mutations they have. The 1 has been know to be related to a spectrum of disorders called Dravet Syndrome and other epilepsy disorders and we have been told and untold that Louie has Dravet syndrome so we really don't know what to think.
Silas has a speech evaluation Tuesday with the Department of Developmental Pediatrics and on Thursday he has his yearly follow-up with Neurosurgery. Friday he starts his 16 weeks of occupational therapy. His eating has improved some so we will see how he does.

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