Finally, I got to have a phone conversation with Dr Halper from the International Brain Research Foundation. He works with Dr De Fina and he is the doctor that came out and did the evaluation and testing on Timmy.
He started off by telling me that most of the patients they work with are far less cognitive than Timmy, meaning they are in comas, vegetative states etc.. And then he told me they have new programs and some are fairly experimental. They are suggesting we try some neutracuticals. I will be in touch with Jason, in charge of financial, to talk more about our options with that. And I think he mentioned that there may be other drugs that could help with speech.
I asked about what the tests showed and Dr Halper said the results were very good. The brain waves looked good except in a couple of spots. He said there were some mild abnormalities on his left side and that would make sense, because that is the side where the injury occurred. I then asked him if the tests were able to show what parts of his brain might be affected and he said that areas that involve speech were affected.
After I post this update, I will be emailing him Timmy's Kaiser doctors contact information. He is going to try to contact them to talk more to them.
It's just so amazing to me how resilient the brain can be. In the beginning, we were told that the original CT scans showed that the left side of his brain was dark and could not recover. We were also told that there was a lot of brain stem damage that was not repairable. We were told Timmy would never breath on his own... he does. We were told his right side would be paralyzed, it's not. We were told he'd be blind in one eye, he's not. I guess the brain is smarter than we think? Thank you everyone for believing in Timmy and believing in miracles. Thank you for the many prayers that still continue and for the good thoughts sent Timmy's way. And thank you for believing that Timmy will continue to get better. And even if we don't get the Kaiser doctors assistance, I was telling Isaac that Timmy's come this far on his own and he can go further. And of course, I believe we have God on our side. We have the winning team.
Believe :)
Dawn
Hi Dawn, I tried to post a comment but everything I typed went away after I selected a profile and the comment didn't post, I'll give it another shot.
ReplyDeleteI'm sorry you are having such a difficult time with doctors and insurance. I have been in a similar situation and know first hand how frustrating it can be to get the things you need for your son. Perseverance pays I know you will keep fighting for your son.
I was hoping we might get the chance to talk about IHSS and Tim's abilities. I don't know if Tim is able to hold his head up for an extended period of time or able to tolerate a standing frame. I have a standing frame at home in which Tim is welcome to use as many times per week that you are able to transport him to our home as long as his doctors approve. I also have a functional electrical stimulation bike he is welcome to use but that would definitely have to be approved by his doctor. I may be able to show you some things that you could try with Tim for PT. I know it's not ideal or very convenient but if he is able and you are willing the offer stands. I would love to talk to you about these things if you would like to call me my number is below.
Katie MacCallister
338-3169 home
234-6721 cell
Sorry Katie, I'm just now reading your response and getting back to you. I'd love to talk to you too. Timmy CAN tolerate a standing frame and it's one of his favorie things to do. I will call you soon or you can call me. My tele# is 703-4447 and 246-3704.
ReplyDeleteWe've just been getting into a routine with Timmy home. So let's talk, I can use all the help I can get :)
Dawn