Update

I figured I should update you all on what’s been going on since my last post. I’m still lurking so I know people have left or scaled back. Most people I know are having a lot of challenges lately.

Daughter is still ill. Back in April and May it was 50/50 odds whether she would live. She fought thru, with the help of all of the medical assistance and, when stabilized, came home. Her care was transferred to UCSD Medical.

Unfortunately at the same time she lost her work sponsored insurance. She had MediCal, but none of her previous doctors accepted MediCal, so she has been waiting and waiting for an appointment with a new Primary Care doctor. She is still not listed for transplant.

On a positive note, she seems to be doing what the doctors said was impossible… healing. They all agreed that her liver was too trashed to ever heal, but her lab results have improve. She is in the “normal” range for all but one level on the MELD test. It’s a very, VERY slow process, but in long-term, it would be better for her to keep her liver. She still has major mobility issues due to severe edema in her legs. We’ve been to a Lympedema clinic, and they’re going to mummy wrap her legs five days in a row next month. Now I’m learning about the Lymphatic system.

Ben turned 15 recently… shout out to my Cosmic Sister who shares his birthday. His growth explosion seems to have slowed. He is currently about 5’10” tall, weighs 185lbs and wears men’s XL clothes. He has a bit of a belly, but he’s mostly USDA American Beef!😂 His appetite has gone back to “normal”, and his behavior has improved. He’s still a Profoundly Autistic teen with severe ADHD, but he’s not breaking things and screaming all the time anymore. I’ll take it!

The next big event is moving. We have until the end of this year and I’m finding that we will probably not be able to find more than a one bedroom in our price range. The other hurdle is Zeus. A lot of places will accept a small dog, but as he’s a shepherd mix, small he is not. I’m still hoping the right place will present itself to us. The actual moving part won’t be too bad, since we’re not taking any of our beds or furniture. It’s all broken and worn out. We’ll start new in whatever space we end up in.

I have meds in my Intrathecal Pump and I’m doing okay. I still have to take some oral meds so it’s not ideal, but other matters are more pressing right now. Life continues to throw curveball and Mr Murphy is always near. My mental health is still good.

Anyway, that’s where we are. I’m still way too bogged down to have the bandwidth to socialize. I rarely communicate with anyone, other than Younger and my BFF, outside my house. I do still think of all of you and plan to be back to regular, or semi regular, posting at some point.

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HUGS

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