Well, I guess a Timmy update is a little bit overdue. But, before I get into that, I just want to say I loved visiting with Timmy tonight. He's seemed kind of down the last couple of days, so it was great to be greeted with a smile tonight. And then for some reason, he just kind of launched into doing all the stuff I've been teaching him, without me asking him to do it. He started nodding his head yes and no. Then he started opening his mouth and sticking his tongue out... all this with no prompting from me. We were both laughing so hard that I had to tell him to remember to breath, because he almost couldn't catch his breath. Also, over the last week, he's been starting to bend his left leg at the knee on his own while we do range of motion. We are also starting to see a bit more movement in trying to open and close his right hand. Timmy's room mate's sister actually got him to reach for a ball today, which I've never seen him do before (lift his arm). So Timmy's still making progress and I thank God and everyone's prayers for that.
So, onto the update:
Last Thurs, the 11th of Nov., Timmy was evaluated by a 2 person team sent by the International Brain Research Foundation. They were great and treated Timmy like the human being we know he is. The first test they ran measured his level of consciousness. Timmy's level is at 98%. What's this mean? A normal level is 100%, so this means that Timmy is totally aware of everything going on around him. Yes, most of us already knew this, but now this is proof. They asked Timmy to do some things, which he was very cooperative with, within his ability to do them. They also ran a couple of EEG's which we will get the results from within 10 days of the date of testing. Dr Halper was awesome and encouraging. He told us that he can't believe Timmy isn't getting any type of therapy at this time and that he is ripe for therapy. And, how frustrating it must be for him to be aware and want to do things, but needs help getting there. He encouraged us to get Timmy physical and speech therapy and that's what I'm working hardest at now.
So to start, I spoke with Timmy's Kaiser doctor that's assigned to him at the facility he's residing at now. She knows that Timmy is currently on an "RNA" program, which needs no insurance authorization. This means that IF the family is there to assist, we are SUPPOSED to be able to stand Timmy with the help of an RNA for about 15 minutes. This hasn't really been happening and I told her. I also told her that we'd like Timmy re-evaluated for Kaiser Vallejo. We have been told in the past that the Vallejo facility is Kaiser's big rehab for brain injuries. His doctor then told me that in order to go there, Timmy would have to be able to tolerate 3 hrs of PT a day. I then asked his doctor how he was expected to get to that level when nothing is being done to help reach that point, especially when he's just laying around wasting away. I also added that he hadn't had a neurological evaluation in over a year. And I asked her for a wheelchair evaluation, as the one he's using now is borrowed from the facility and... well it's a piece of crap. So, to make a long story short, Timmy has an appointment next Monday with a Kaiser doctor that's supposedly in charge of his physical therapy plan, who he's never seen before. Then the first week in Dec., he has an appointment with his neurologist. Still waiting to hear about the wheelchair eval... but I did tell her that I know people on Medi-cal that have wheelchairs and that I'd think a patient on Kaiser should be able to have one too.Last Thurs, the 11th of Nov., Timmy was evaluated by a 2 person team sent by the International Brain Research Foundation. They were great and treated Timmy like the human being we know he is. The first test they ran measured his level of consciousness. Timmy's level is at 98%. What's this mean? A normal level is 100%, so this means that Timmy is totally aware of everything going on around him. Yes, most of us already knew this, but now this is proof. They asked Timmy to do some things, which he was very cooperative with, within his ability to do them. They also ran a couple of EEG's which we will get the results from within 10 days of the date of testing. Dr Halper was awesome and encouraging. He told us that he can't believe Timmy isn't getting any type of therapy at this time and that he is ripe for therapy. And, how frustrating it must be for him to be aware and want to do things, but needs help getting there. He encouraged us to get Timmy physical and speech therapy and that's what I'm working hardest at now.
So I learned a lot this week. Monday was really tough emotionally for me for lots of reasons I won't get into, but part of it was because I wanted things to happen MY way NOW. I wanted Timmy home before Christmas and I just want him with me all the time, because I felt nobody else was taking care of him and at least I could continue to encourage him and teach him. For now, we've decided to give Kaiser a chance to increase Physical and Speech therapy. We should also have the EEG and other test results back soon that will give us a better idea of where Timmy's brain is at, as well as suggestion for treatment from specialists from the IBRF (International Brain Research Foundation).
In God's time. He's brought Timmy this far and I trust He will bring him even further.
Take care everyone.
Dawn
(Timmy's mom)
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