Friday, June 24, 2016

Summer School: Week 4

Our week has revolved around the fact that it's just plain hot in Missouri. It's to hot to do anything outside and most days it's too hot for Amber to even tolerate a walk in a parking lot. So, we haven't been too excited to get out this week.

Summer Fun:

We did have our homeschool group's yearbook signing party at a park one morning earlier this week. It was the single day that was not in the mid to upper 90's for temperatures. It even rained and sprinkled that morning.  Amber was on the yearbook committee this year, so she was doubly excited to see her friends and see the finished product.

We also had lunch again with Amber's friend and her mom after the yearbook party, plus Amber is working on VBS signs with the friend this afternoon after lunch out.  Next week Amber is attempting to assist with VBS at our church. We hope she can make all five days; realistically, I expect she will be a mess before Friday. However, our church is aware of Amber's limitations and willing to help her through the week.

There's also been more free reading, video game playing, texting with friends, and Project Write, which is more fun than anything. Amber's project group has mostly finished their script, I believe. They are working on music ideas now, since this is a musical. Every week Amber is more and more excited when I pick her up from Project Write.

They had way too much fun working on those signs!

Summer School:

Amber has actually completed more school work than I expected, then again my expectations are much lower than they were in May. We're tired, and things keep coming up that prevent us from resting. And we're working on developing better habits to support her EDS. This all takes away from summer school lesson time, which turned out isn't as important as I once thought.

Amber did complete 2 modules in Physical Science, which means we might finish in July or August. I can't believe there is an end in sight. She worked on a couple of review items too, and started a new review for an app that is a prequel to the StarToaster website for Orphs of the Woodlands that she used in 2015. The app is a little beneath Amber's level, yet she's still enjoying it and likes how it ties to the other story.

It also came to my attention that although Amber is the one living with her EDS and has general ideas of what the disease does to her body, she can't verbalize this information to others. Therefore, this week we began a small unit on Ehlers Danlos Syndrome. We're looking at the medical definition of the disease, diagnostic criteria, how it affects the body, the varying symptoms, and long-term effects (some of which Amber can see in her dad). Amber has then been writing summaries of what she learned in order to organize the information in her own head.

EDS learning, Amber's 9th grade creative writing curriculum, and fun on Father's Day.


Medical Update:

Last week Friday we all went to Amber's genetics appointment in hopes of finding out more about Amber's specific type of EDS and any input the geneticist might have. Thankfully, the rheumatologist was correct and Amber has Ehlers Danlos Syndrome - Hypermobility Type, which the geneticist and genetic counselor were quick to remind us does not mean she is ONLY hypermobile. That is just the name of her subtype and that EDS will affect the majority of Amber's body.

The geneticist did make some additional recommendations for therapy and long-term treatment to help Amber. She was quite pleased with the treatment Amber has been receiving, which we are to continue.  We've already received the formal diagnostic paperwork in the mail, which includes all of the geneticist's findings. Some of the information we already knew, and others were a bit of a surprise. In all, it was a productive appointment and we now have the most knowledgeable specialist in our area on Amber's team.

Milori has been unusually playful, even for him.
Next week is Vacation Bible School, so we've canceled all of Amber's activities and therapies except Project Write. I'm hoping we both come through VBS relatively unscathed since I'm helping in the snack area.

Happy Summer Weekend!

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Weekly Wrap-Up 

2 comments:

  1. Funny how what once seemed so important can change! Hoping and praying that Amber gets to enjoy helping out at VBS to the fullest! I think empowering her with knowledge about EDS is a great idea!

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  2. Good luck with Vacation Bible School. I am glad that you got more clear cut answers. I am sure that will help with therapies.
    Blessings, Dawn

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