Sunday, March 27, 2022
Sunday, March 20, 2022
Trisomy Awareness month and Trisomy 18 Awareness Day.
I didn't even remember to wear blue on Friday.
BUT, for us, every day is Trisomy 18 Awareness Day. And I hope for my family and friends, they're pretty aware, too.
For us, Trisomy means having more medical equipment than you even knew existed. It also means having more love than you knew was possible.
It means measuring outings in battery power and oxygen needs. It means measuring days by smiles and grins (and goofy jokes).
It means special needs schooling, IEPs, and evaluations. It means bringing nurses into your home that become family and impact everyone's lives for the better, not just his.
It means learning a whole new language, new culture, new life. It also means figuring out when you're 50 what you actually want to be when you grow up.
Trisomy is indeed the Journey of a Lifetime, not just his, but ours as well.
Update on Aaron: There are two reasons I haven't been as on top of things as I usually am this month. First is school. I am loving my Masters program, but it is INCREDIBLY time consuming! I have been writing, TONS! But my professors are the ones that see it and I don't think it's stuff the general public would find interesting anyway.
The second is that Aaron is requiring a lot more care. He'll have a good day or two, and then some pretty bad ones. Friday was awesome! The pictures are from a field trip they took. He's still not as smiley, but he went swimming and bowling and had a great time.
Now? Well, he hasn't slept since his nap after school on Friday except for some 5 minute micro-naps. He's fevering again, more today than yesterday. We're using Tylenol and rescue meds and they put a dent in things, but that's about it.
This is hard, really hard. Emotionally and physically. It reminds me of our first year with him. We've spent 32 days in the hospital since January 14th over three different admissions. Being admitted takes hours as they do work-ups and make decisions, while also attending to other patients ('cause you know we aren't the only ones there).
It takes another four hours or so coming home. An hour to get everything ready to go, an hour to drive home, and another two hours to get everything settled and taken care of here. (Equipment needs to be changed out and meds processed and organized, etc.) I also had no nurse Wednesday night when we got home. It doesn't happen very often, but Wednesday was one of those times when there was no one to cover. So it was me. By Friday, March 18, Trisomy 18 day, I had nothing left to give. I made it through classes (somehow) and crashed hard.
But we keep doing it. We keep on going. He's worth it, he's MORE than worth it. Those smiles, that spirit. Even when he's sick, it shines through. In a conference for school this week someone referred to an "uninvited gift."
"Uninvited." Yeah, certainly didn't ever hope or dream of having a child who had to deal with so many challenges. But he definitely is a gift, a gift from God.
Wednesday, March 16, 2022
Yep, heading home.
All in all, it looks like he was having some sort of muscle spasms or something, some kind of pain. X-rays were all normal, they even did ultrasound of his feet to make sure there wasn't fluid or tendon involvement. It was all good.
So here we go.
His feet are still not in a neutral position and he really resists putting them that way. He was offered botox or serial casting (we did that when he was really young). Honestly, I just don't care. Botox are injections, and have to be done repeatedly. Casting would restrain his feet. Frankly, this kid isn't on the track or football team. He doesn't even walk. I just don't care to put him through that.
We're going to move on. We may revisit it when he's doing better. Right now, I just want my kid be home and happy. I think those are pretty good goals.
Sunday, March 13, 2022
|Wheelchair tune-up on Tues.|
Thursday, March 10, 2022
We've got smiles!
Pardon the lighting, but this was late last night and I didn't want to use flash or turn on the light and disturb the show!
I honestly don't remember our last true smile. How awful is that?
I know we haven't seen them since he went to the hospital on January 30th.
It's March 10th.
Almost six weeks without a real smile.
My mama heart has struggled the last eight weeks. That's how long it's been since he acted like himself. Truly, it probably started around Christmas. That was almost three months ago, but he was still smiling and playing until eight weeks ago. Then there were moments, sometimes a day or two, where things would be "normal" (whatever that is).
He's still tired. He still is not goofy and silly. But we have smiles.
Monday, March 7, 2022
|Leaving the hospital|
I guess I didn't.
I did put up a picture on Instagram and his Facebook page, but somehow overlooked the blog.
Anyway, we did come home on the 21st, two weeks ago. It was rough. Honestly, I had to work to persuade the doctor to let us go.
He was (and still is) needing rescue fairly often from his storms. His sodium and potassium levels were very much suboptimal. Still fevering. But really, there wasn't much at all that we were doing there that we couldn't do at home.
So with plans for at home labs and a visit with Comp Care as soon as could be arranged, we left.
He still sleeps a LOT, and smiles are few and far between, and very small. He doesn't appear uncomfortable, just oh so tired.
But he hasn't needed his rescue med for about 48 hours now, a record, and he has gone to school a few times since he came home. There is progress, and we're grateful for it.
I'm praying that the reason it is so slow is that he was literally at death's door four weeks ago. We're still watching a few labs. He's still very bruised. But I'll take whatever progress we can find.
I mentioned yesterday in church that we are so very grateful for all the prayers offered on his and our behalf. They are very much lifelines to God, and we cling to them. Thank you, thank you so much.