2nd March 06 Update

[Tamet Gould]

Well I feel pretty beaten up mentally after Tues.  But come hell or high water I am going to win this war just because it benefits Benjamin. 

We got up to Plano tues morning excited because he had been doing so good at home and he sat down with them and after about 15 minutes everything went to pot!!!!  He just decided he wasnt going to do what they asked him to. 

So needless to say the next 1 1/2 was spent trying to get him to put a matching item next to its match.  And I thought we were doing soooo good.   (((

So the plan is to come home and spend LOTS of time just getting him to follow simple commands, stand up, sit down, sit in chair, sit on ball, go swing, go jump, go potty, immitate my movements, put shoes and socks on etc etc etc.  It took him 2 1/2 hr yesterday (Wed) to decide to put his shoe on.  Geez   \\\\\\\

It took him nearly 2 hrs today to simply immitate my movement to touch his ear.  What is so bizarre is that he will beat on his chest, chin, head and they are all only 3 to 4 inches from HIS EAR!!!!!!  If he would put as much effort into doing what he is asked as he does his non compliance it would be great!!!!!!! 

Thank God for my compliant 14 yr old.  He is a blessing, I guess God knows I need to see the end result of good things.   /\\

Well anyway, after we left there, we went to the new eye Dr that Dr Stewart had recommended.  Come to find out there are only 124 DR in the USA like Dr Stewart and Dr Shidlofsky.  So, Benjamin has a problem getting the ambient light to his brain stem and these new glasses shape the prisms so more light actually goes thru the pupil and to the brain stem.  Of course the brain stem is tied to the CNS, balance and everything else so naturally the change in light will change how he focuses on things.  Dr Shidlofsky feels he is hyperfocusing, in other words he is seeing only the one object and that is why he is constantly running into walls, things etc and he loses his balance when looking at something specific, he over focuses on it.

Anyway got the glasses ordered and I think those are the most expensive glasses I have ever heard of.   I can assure you when he told me the price I liked to have swallowed an apple.   <$$$>

So, since I havent said it in this thread, let me THANK EACH AND EVERYONE ONE OF YOU WHO DONATED, BOUGHT TICKETS, ENTERED RACES ETC.   THANK YOU.  If not for that, we wouldnt be able to do what we are doing. 

I know lots of poeple that have run into Benjamin in the last couple of months and they are amazed at how much he has changed so I am hoping that one day when you run into Benjamin he will be able to say "Hi, how are you", shake your hand and answer a question or two.  So hang on and bear with me because that is my aim.  And until now, I just really didnt have a good grasp of everything involved in that task. 

Its a long road and I can see why some parents/folks just give up or dont do anything.   Sometimes it really is easier to do nothing or very little.  But, as they said in the last work shop about a group working with a child and how cruel it looked - "It is crueler to let the child remain in that state than to help them acheive as much as they can". 

[Tamet Gould]

Just a short update; Benjamin has been walking flat footed a lot for the last 4 days now.  This is great if he continues to do it.  That means that his CNS is healing even more and he is regrowing more mylin on his nerve cells.  He actually walked up the front steps reciprically (one foot, then the other foot etc) holding onto the rail with one hand and NOT asking (reaching out to us) to hold his other hand.  COOLLLLL  <ROCKON>

If he keeps this up, we have some really exciting things in store for us shortly.  I cant wait to get his new glasses and see what effect they have on him.  Dr Shidlofsky said they will create a drastic change in some people, and a mild change in others and sometimes the change is very gradual. 

But whatever way I hope he keeps this flat footed walking up because that is a huge statement on the development of mylin in his CNS and with that will come lots of things.  Everyone keep him in your prayers for his body to continue to heal itself with the help of wonderful Docs like Stewart and Shidlofsky.

[Mandi]

I am glad to hear how great Ben is doing with all the new therapy. Congrats and keep up the good work. I can only imagine how difficult it can be at times.