This week is lining up to be a another busy one. Eh, I suppose this is always the case. So, let me do my best to bring the main items to you.
- Baclofen. On this Thursday, March 15, Ryan will get another baclofen reduction. He will be taken from 80.1 mcg to 60 mcg, a whopping 25% reduction. Last year at this time he was at 400 mcg. If he tolerates this well, the next decrease will likely be 45 mcg (or less). The last one would be in the thirties and then we would trial weaning him from the drug altogether. We will leave the pump in place for several months and push saline through it to keep it from locking up.
- Hyperbaric Oxygen Treatment. Ryan began his monthly HBOT cycle yesterday morning. Twice a day he spends ninety minutes in the chamber (for a total of three hours).
- Outside. It appears there is some nice weather on tap in northern Virginia in the upcoming week. Perhaps even pushing eighty degrees later in the week. I intend on getting Ryan out to enjoy the sun and fresh air. I’m really looking forward to this.
- Greenfield IVC Filter. To recap, we discovered Ryan’s Greenfield IVC filter is positioned incorrectly and could cause a life threatening situation if it punctures the vena cava (a huge vein just above the junction of the leg veins). This filter’s sole function is to catch any blood clots that break free from reaching the heart. Sue is working to get Ryan in for a surgical correction, but is being stalled by the medical community. She continues to push… hard.
- Neuro-Feedback. IBRF began a new technique with Ryan last week where the brain is “rewarded” for doing what we want. It’s quite complex, but I have a knack for making things simple… so I hear. An example of how this works is we play music and it will stop if Ryan’s brain waves (as measured by an EEG that I place) fall out of certain thresholds.
- Femur. The femur fracture Ryan suffered during therapy and surgery to place a titanium rod is completely behind us now. Everything looks great.
- Bone Density. Again, we are pushing for answers on how to treat Ryan’s decreased bone health. Ugh! One step we took was to take Ryan from Nexium (shown to weaken the bones in long tern use) and switch him to Zantac. The best thing on the horizon is a new piece of therapy equipment (MotoMed or RTS300-FES).
- MotoMed/RTS300-FES. This therapy will be key in Ryan’s physical health. It activates Ryan’s muscles during therapy so that they are actually doing the work. Up until now, everything with Ryan was passive. This will stimulate his nerves and activate muscles as he exercises. He is actually doing the work! This means it gives him cardiovascular and resistance training, leading to greater bone density. Further, with his body doing the work we might see a decrease in urinary tract infections. It will absolutely benefit his respiratory and circulatory systems. Cognitively, it might help him relearn movements. A target fundraiser was established to help offset the cost of this equipment… and we need all the help we can get since it’s not covered by insurance. To my dismay, I greatly underestimated the final price tag ($23,500). Still, I will leave the $9,200 as the goal and use upcoming fundraisers and future personal funds to pick-up the difference. I hope.
- IBRF. It’s been three months since the International Brain Research Foundation visited. The details of their next quarterly visit are being worked out, but we expect to see them in our home this month to do their assessments. I’m eager for them to do their evaluation, since the last one was confusing. I never really did get a grasp on it.
I hope everyone who observes Daylight Savings Time adjusts well today and enjoys the evening sunshine.
Yeah for being outside! I know Ben loved it when we went outside!
Bens to start some hbot trials this week. You have any tips or questions I should be asking about it?
I know the general facts and such but I know you have expertise in this area!
My advice is to make sure Ben’s comfortable and not bored. Ryan has a soft-chamber so he spends more time in it than those who use a hard chamber, since the hard one can deliver higher pressures. This should help Ben a lot, especially with flexibility.
Ann H Tearle says
Since the IVC filter was incorrectly installed–it is unconscionable that they would not take Ryan in immediately to correct the situation. Keep pushing, Sue….My prayers continue. Love, Annie
I sent you an email to your aol address with some information that may help with the bone density issue.
Got it. Thank you!
Gail Doyle says
Ken, Great you can both get outside and enjoy patio! What can the medical community do that would stop Ryan from getting this much needed adjustment? It must be very frustrating ! Hope they come to a conclusion real soon. Again, baclofen reduction ,amazing .Get that music going!!!!!! And get some sun
Buy some bongo drums and make some music while enjoying the deck with Ryan. My prayers continue.
Hoping for good weather so you can enjoy outside time. Get some music going on the patio and try to relax a little. Always thinking of you.