No doubt, it’s a busy week. Busy, busy, busy. Knowing I have a lot to cover with you, it’s best (for me) that I put it into list form.
- Baclofen. The dosage decrease (from 315 mcg to 285 mcg) last Wednesday was successful. Although I can’t immediately claim it improved Ryan’s alertness, he is not suffering any adverse effects that I can find. I continue to monitor this closely.
- Van. It’s still stuck… but much worse. Much, much worse. I’ve tried to get it out on several occasions. If you look at the photograph I took this morning you’ll see by the ruts where the van began and how much it slid down the hill. The wheels are spinning, and the back end has fishtailed into an even tougher angle. With some manpower, I’m confident I can get past the situation I created with a little pride in place.
Sleep Study. This is well underway and we should get results coming in around the middle of the week. Unofficially, it seems Ryan does undergo normal sleep cycles, including REM! Though he achieves REM, this does not mean he dreams. Besides this, I learned that noise (like me talking) arouses him from sleep. I stayed up with him all night and paid the price… exhaustion.
- UTI. Ryan no longer appears as uncomfortable as earlier in the week. I’d like to thank you for all the amazing suggestions. It just shows I was correct when I said you’re all big smarty pants.
- Tick. Besides a fairly sizable scab (from me performing minor surgery on myself), no adverse effects.
- Butt Rash. Although I feel it is mostly under control, it just won’t clear up completely. We just began using a sun lamp (that was given to us through Ryan’s Wish List) and it is definitely making a huge difference.
- Court Ordered Restitution. Haven’t received a single penny. Gee, who would have guessed?
- Civil Case. It’s still in the “fact finding” phase and no date is set.
Ann H Tearle says
SH, SP, NGA. ….keep up the great work, Ken. Keep these updates coming, please, Sir. Annie
DOn’t leave that sun light on for to long. Don’t want to develop a burn. A small fan can be used to dry it out. My prayers continue.
I had a sleep study done on me years ago. Just confirmed what I always told the Doctor that I can’t sleep. On meds that help that.
I’m prepared to get my credit card out if I can find the right tow company with the right price 🙂
I called a tow truck company “Outlaw” Towing, and the gentleman advised that he needs enough room to make an “L-turn” and to hook the cable up to. I sent him a picture of the van and he wanted to know if you could take some more pics for him to see the van in relation to where he has to tow and if a tree was available for him to hook his cable to…. then he said sand or kitty litter might work? or 4-wheel drive truck maybe to tow it up the hill…
Saturday morning practices just finished, putting together a team of strong kids to retrieve the chick magnet!
Psyched the sun lamp is helping! I was in the process of finding folks to split the cost with me and noticed it was gone! Funny, Arch’s rash at the beach 27.5 years ago and a quick call to “Dr. Bones”, his sweet pediatrician, gave me a suggestion that helped our boy. It takes a village (which always has a few elders to provide wisdom).
Thanks for the updates, Ken — lots going on! Can you just wait until the ground dries out to move the van? It is not supposd to rain for several days. Glad the rash is clearing up — well, somewhat. I am sure you have tried the old mother’s helper, A & D Ointment, that is a tried and true remedy. There are many moisture barrier lotions available that prevent rashes of the kind. The sun lamp may get the job done — let’s hope. Ken’s Safe Sterile Surgical Steps for Tick Displacement–Money Back Guarantee — might want to call a patent attorney before someone steals your idea. Love and prayers from sunny Maryland.
Vicky Scott says
Thanks for the itemized update, which is very informative and helpful. Glad the rash is almost gone and you have the sunlamp! It is always a guessing game to try to figure out what the latest malady (I say that lightly) is and how to treat it when our son’s can’t communicate or don’t very well. I totally understand the sleep depravation and it is just part of our norm now. (begging the questions of what is normal?)
We have seen changes in Jonathan while reducing his seizure medication. It is a huge conundrum. Which is worse? The seizures or the side effects?
And so it goes! Hang in there! Never give up!
How many Team Diviney members does it take to move the chick magnet up a hill? I’m thinking about 8. Anyone reading this who has some time this weekend, please lend a hand and accept my sincere appreciation and gratitude!!
Ken, I was wondering — do you have to program the baclofen pump? I’m not sure how it operates, but is there an alarm that goes off if it shuts down for any reason?
Also — about the civil suit — does the court allow, and, would you allow, others to make victim impact statements? I have a lot I want to say to the judge.
I’m eager to hear about your assessment of Ryan’s level of alertness as the baclofen is reduced. Hoping you’ll hear/see Ryan trying to communicate with you and Sue very soon.
Was also wondering what your thoughts are about putting in a “stair lift” device to get Ryan upstairs when it’s cold outside.
Random thought…somehow I think Ryan dreams……
Hope you and your family have a smooth and happy weekend together. Sending you love and hugs, and always, prayers of healing, hope and positive new horizons.
PS SOS to TEAM DIVINEY — let’s get the chick magnet back where it belongs in the driveway asap!!!! Many thanks for your help!!!
I would certainly appreciate anyone who could help get the van (and me) out of this mess.
The baclofen pump is indeed programmable. I know how to do it, but don’t have the equipment nor license to do it. There are many alarms, to include a malfunction and critically low volume.
A stair lift would be amazing!
Medical plans usually will cover them. In my experience, they will send someone out to access the need, then approve it.
Maybe I missed it, but what were the results of the latest IBRF report?
You didn’t miss it. IBRF is dragging their feet on it!
Vicky Scott says
I have been going to ask the same question thinking perhaps I had missed it. Do you have any leverage (as in have you paid them all their money?) in getting them to do their job or am I being too cynical?
It’s great that Ryan has sleep cycles, and even greater that he has REMs! It will be so helpful for you to know when he’s sleeping or awake for stimulation and such. Glad Ryan sailed through the reduction and rash is getting better. Sorry the van is still firmly planted.
Thanks. I tried putting carpet under the rear wheels but it just launch them out the back.
Sorry about that : ( Hope no one was in the line of fire. Any chance of running in reverse all the way up the other side of the backyard? Hopefully some extra muscle power shows up on your doorstep to help.
Appreciate the updates Ken! Have a good day!
Gail Doyle says
Ken,Thanks for all the updates and that Ryan is feeling a little more comfortable. What will sleep study determine?Hope you get van out ( won’t say anymore!!). So glad Baclofen reduction is working. May you all have a calm day and give Ryan a hug for me. Love Gail
I’ll put a post out on what I know about a sleep study. Maybe tomorrow.