autism, medications, Pans/Pandas, sleep

Monday and much better!

I can’t write too much today but wanted to update any readers that Christopher is doing MUCH better!  We are so grateful. He was hospitalized in a child psychiatric center a month ago and they regulated him on meds that are causing him to be much mellower and to SLEEP!  He sleeps about 6-8 hours a night and even often naps 2 hours a day now.  Boy what a difference!  He still has some challenging behaviors, but with sleep it is doable!

I will update more later, thanks for prayers!

this was the beginning of the difference for Chris that lasted quite a while.  Ryan also got better with a significant med addition.  Whether the cause was Pans/Pandas or something else we don’t know.  

dori

 

autism, college, medications, music, Pans/Pandas, residency, sleep, waiver placement lists, waivers, weight

another old copied post…. things are not good :(

 

 

User: dori

Comments: feel like the straw that broke the camel’s back just happened – my aide just called and asked if I thought Chris would hit her today how do i know… – I said I didn’t know, he’s mostly hitting himself, but that he had hit me some especially on Saturday. She said she’s not coming today and that she’s going to call her office and explain how much he’s hitting her (he did hit her a lot on Thursday – she had a sore arm from it) and whether they still want her to come back – what do you think will happen?

2020 – yet another pans/pandas note… is that what this aggression was from??

I told Rog if I don’t have an aide I think we will have to have him go live somewhere else. We may do it this week. I’m so depressed. I can’t do this with no help. My mom did help me yesterday but he was hitting her and pushing her and she’s only 5’4″ and about 105 pounds so she can’t take too much -she’s also 61. My MIL isn’t even coming around to watch him anymore really – she’s pretty sick right now.

Continue reading “another old copied post…. things are not good :(“

autism, health, organizing, Pans/Pandas, sleep

another quick update

hope to soon have time to ramble, but here’s just a cut and paste….. simply a copied email I just sent out. Prayers appreciated…….

I wanted to send one final update on Chris and then hopefully things will be calm and stable for a while!

(A summary in case I had missed any of you in rushing to get the prayer requests out – Chris had surgery on his ear 3/10 after he’d caused hematoma on it from hitting it so much. He then destroyed the surgery as we could not keep him from hitting it/picking on it and he had another surgery at the hospital on 3/19. He got out of the hospital on 3/26 after being anesthetized again on 3/26 for the pediatric surgeons to make sure ear was healed (this time under 24-hour supervision). It was, so he was sent home.)

Continue reading “another quick update”

autism, deafness, health, residency

From the hospital….

Ugh… a very nice hospital with awesome people but I’m tired of being here! But tomorrow I get to go home…

Chris damaged his ear with self-injurious behavior and had surgery on it 3/10. By 3/17 he had damaged it further as we could not control him to keep him from hitting/poking/punching his ear. 3/18 we spend 5 hours in the ER and 3/19 about midnight in the morning we were admitted to the area’s specialty children’s hospital. We have been here ever since (did go home for 20 hours from Sunday night to Monday afternoon).

Chris has adjusted fairly well now to the routine and the sitters and nurses and doctors. We urgently requested med regulation in addition to his ear attention as he was out of control at home, in the ER, and here at the children’s hospital. A large team is in place to help him and I believe they are helping as he is much calmer. He had ear surgery again Friday night. He shall probably be here about 2 weeks or so.

He was hitting everyone in our family on Thursday and it was completely out of control – he had even hit Colleen (9) and Ryan (2). So we had to get him immediately emergency help.

Prayers and thoughts requested as we continue on this path – he is also going to have a tonsillectomy soon and that will be a tough recovery. There is nowhere for him to go, either, to like a “nursing home/recovery” kind of stage so they’ll keep him here as long as possible and then try and have an aide set up for our house.

The Lord is in control… I just have to trust.

Blessings, dori

 

adhd, autism, deafness, God, health, music

Finally a chance to breathe

Chris had to have surgery on his ear on Wednesday because he hit it so hard he got cauliflower ear. We have been watching over him at home – he seems better today so he’s relaxing a bit in the shower and I thought I’d take a minute here. Those of you who are inclined, I would appreciate prayers/thoughts for him as his ear heals. He is on some new meds that we believe are helping him now sleep at night – it’s been 5 days now that he has slept well. I hope it also calms him too so that he doesn’t bang his ears or head.

When Chris was in the hospital last summer I found this Bible verse. I have claimed it again as my promise that Chris will be guarded over by the angels. Psalm 34
17 The righteous cry, and the LORD heareth, and delivereth them out of all their troubles.
18 The LORD is nigh unto them that are of a broken heart; and saveth such as be of a contrite spirit.
19 Many are the afflictions of the righteous: but the LORD delivereth him out of them all.
20 He keepeth all his bones: not one of them is broken.

I pray that Chris will be delivered from this ear problem with no damage or further danger. I know the Lord is more than capable.

I know I need to go back to attending church. I want to get back into music ministry but the Lord will have to guide me back into that – I don’t see it being possible right now.

I was in the choir at churches off and on from 1987-1994, then 1999-2000. I greatly enjoyed it, and also did special music solos with guitar, and also sang for the kids in kids church that were preschool age. That was fun (that was in 2001). When Chris got too big to handle and had started all kinds of health problems, I had to quit everything. I miss it all and pray I will be privileged to be able to do it again.

BTW, I was definitely diagnosed with ADHD yesterday at the dr. All the IQ testing is done. I’m fairly high on the scoring with the attention part being lowest, no surprise there.

Housework calling….

dori