Putting all the crazy from this past week behind us, we are moving forward. This is another really big week for the Lost and Tired family.
Gavin will finally make it to the Cleveland Clinic and be seen by the Dysautonomia specialist. If you recall, he was supposed to be there about 2 weeks ago but ended up stuck in the Hospital because he couldn’t maintain his own blood pressure.
This will likely require multiple trips but getting our foot in the door is the first step at hopefully finding some answers.
We also return to his primary neurologist to follow up on his hospital stay and the EEG. Gavin was diagnosed with epilepsy last week and is starting new meds this week because the Depakote is not working causing him to have breakthrough seizures.
Gavin will also begin home instruction for school this week as well. He will be meeting a teacher at the library twice a week, for a total of 5 hours per week.
He will have homework as well that will need to be turned in weekly as well.
At this point, I think are planning on him being homeschooled for this year. What will happen next year, remains to be seen. It all depends on Gavin’s health.
Anyway, Lizze also has a few appointments this week as well. Hopefully they will be productive and she will get some new treatments available to her at PT.
I’m focused on simply making it through to Friday. Right now, it’s about survival. Sometimes surviving the week is a major victory.
I hope the week goes well for all of you as well. What are your plans for this week? Do you have anything big or important coming up?
**Thanks for reading**
-Lost and Tired
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