After a lot of reflection I realized that Nathan’s schedule needs to be balanced between rehabilitation and enjoyment. It can’t be all fun and no play. We want our life to be enjoyable, not torture.
So I reorganized his schedule:
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| From 1-22-09 |
The stuff in brown is appointments where a therapist or teacher is involved. The stuff in purple is stuff that Maria and I will do.
We cut out 3 physical therapy appointments and 2 yoga appointments. So we reduced the amount of therapies by 1 extra therapy / day.
Now let me tell you what some of the initials mean:
BM: Beckman oral motor exercises. These are a series of exercises that we do before every snack and meal. These will stimulate his face and tongue. They only take about 5 minutes.
M C, M SP, M A: This refers to the ABR machine. As it’s passive and it doesn’t bother him at all, we strap it on while he’s doing other things, like eating or doing other ABR exercises. C means chest. SP means solar plexus. A means abdomen.
Vital: This refers to vital stim, where we place electrodes on his throat to help strengthen the muscles used when swallowing.
Masking: This is something given to us by the AIAHP people, where we place a mask over his nose to strenghten his lungs and help him breathe deeper/better.
KinderMusik: This is a new class that we’ll be starting next week.
AIAHP: Australian Institute for the Achievement of Human Potential. Even though they wanted us to do 4 sessions a day, obviously that is not possible. So we will at least do one and hope that stirs some neural organization.
MP: Mud packing. I won’t even try to explain this. Please read the link above it has a great explanation.
Gymboree: These are the classes that I showed in this video. We will be going twice / week.
As you can see, he’s getting a little bit of everything, and most of them are pretty enjoyable to him.
The ABR is a passive exercise where he just sits back and watches TV while someone is doing the exercises to him. Even though everyone reccomended doing 3 hours a day, there’s just no way we can fit that much ABR in, so we are going to settle for 1.5 hours manually, the machine all night, and the machine a few times during the day, when we can. So really this is fun, relaxing time for him as it includes TV 🙂
He’ll be taking his nap in the HBOT chamber to help with oxygenation to his brain.
We’ll be doing 1 session a day of the AIAHP program, which includes sensory, vestibular, and cognitive stimulation. Most of the exercises that he was given are pretty enjoyable to him – we’ve done the session a few times and he doesn’t mind it too much.
A couple of times a week we’ll jump in the pool or go to the park. Both of those are fun & rehabilitative. If we get in the pool we do little exercises to strengthen his body. If we go to the park, we take his walkers so he can practice walking in a stimulating environment.
We’re also incorporating walking therapy into his morning appointments. Every morning his PT or OT do stretching, some strengthening exercises, and then 20-30 minutes of walking at the end. So this way if we don’t go out in the evenings in a situation where we can use the walkers, at least he’ll practice walking in the mornings in the Hart Walker. We use the kidwalk in the evenings if we take him out as that one is easier for him to move in.
We are continuing with Dr. Dituro who is heading the “getting Nathan’s body healthy” division. None of the other stuff can work too much because his body if fundamentally non-functional. The heavy metals, viruses, bacteria, weak immunse system, and leaky gut has been starving his brain and preventing his brain from expanding/changing. So we’ll continue with the mud-packing, herbs, vitamins and supplements until he is stronger. Currently he’s taking folic acid, vitamin C, vitamin E, calcium & magnesium, zinc, rutivite, VSL#3, glutathione, fish oil, chia seeds, multi-pollen, nucleotides, HM detox, maitake, hyssop, and gastrex. We continue on the GFCF diet.
Finally, he’ll continue with Speech therapy where he’s learning to use alternative communication devices to help him express his needs. He also goes to horse therapy once a week. Dena is his developmental therapist and she teaches him concepts, ideas, and they sing, color, and play.
I feel really happy and balanced about this new schedule. We’ve followed it this week and it’s working out very well. With the help of Maria it’s not overwhelming. It was very difficult for me when I was trying to do everything alone. But now that I have someone helping me all day, it’s so much easier!
Between the two of us we help each other to make sure Nathan is getting everything he needs while staying happy.
Oh, and if you’re wondering if we ever clean him – yes. After dinner, it’s play time for Nathan and daddy. They go out shopping and exploring. Then at 8pm he gets his bath and is asleep by 8:30 pm. 95% of the times he sleeps through the night and if he doesn’t, we can usually move him, or give him something to drink, and he goes back to sleep.
I have to admit it’s taken an herculean effort to get to this point. It’s been weeks and weeks of changing things around, adjusting, dealing with illness, cancellations, and other things.
But I feel that now things are mostly in place and if we maintain this general schedule I can rest confident that Nathan is getting everything he needs.
(don’t forget to press play to hear the music above)
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