I know, I know. It's been a while so thought I would do a little update about several topics.
Temperature Too Hot: (See July 28 posting). We got the little a/c units but they only work half the time. Trying to return them thru Amazon but frustratingly, not getting a response. Will keep on trying.
I have an electric cooler that I bought last year to use as a fridge during hospital stays. It is insulated (see 2nd pic) so I figured plugged in would be too cold. I experimented. Satisfied with the results, I started keeping ALL of his meds in it. It's a tight squeeze but necessary.
My Surgery: Still waiting on getting approval for the special medicine to bring up my iron and platelet levels. They won't do my exploratory surgery without my levels increased so I don't bleed out on the table. Medicine and insurance move slower than snails!
Weslee and an Overall Physical: (See Jul 23 posting). He had been having some minor complaints about various things, so I took him to his GP. No diabetes, platelets and other various blood components all look good. Gotta watch his headaches (still has a shunt [I call it a brain drain] and it is still working and in the right place.)
Oh, and get this. His last appointment was December 2024. Between then and now, he lost 40 pounds. FORTY!!
Weslee and His Epilepsy: He continues to have both good days and bad. Clusters of the various types of seizures. Aggrevation leading to tantrums leading to outbursts of seizures.
He does seem to have a lot more of those little seizures even before he opens his eyes in the morning. He is taking a rescue drug nearly every morning (doc okayed it).
His next epileptologist appointment isn't until November. That is a WHOLE LOT of seizure-filled mornings.
I really wish the VNS (vagus nerve stimulator) worked on him.
The Cleveland Clinic is keeping Weslee's file open for if when we find funding for a vehicle to get us there and back.
Plan for the Nearby Future: Because of my increasing medical situations, I need to plan for "just in case" but am having some difficulties. While I do have 2 and a half sisters, no one can take on Weslee. My best friend is in her 70s (I think) and can't do it either.
My husband doesn't get along with my son (they are not bio related).
I **am** his POA (Power of Attorney). I can legally make decisions for him but this doesn't work regarding long term plans, and/or what I want to happen when I am gone.
Seriously, no one I know can and is willing to become Weslee's guardian. I have no extra money to put towards a group home, and our combined income is $60 over the requirement. That same $60 prevents Medicaid and other things that could help.
So what do other people do when they have a special needs adult kid who is mentally preteen and there is no one in the family to help?
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Weslee needs more brain surgeries for his seizures. To help, please like, follow and share .. PLUS .. please go to his Medical GoFundMe or to our Paypal ... Thank you.
