Author Topic: Final May Update  (Read 7089 times)

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Offline Tamet Gould

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Final May Update
« on: May 30, 2006, 10:46:16 AM »
Well thought I better update everyone.  We got home from D&G in Stephenville last night and we were pooped.   We took Benjamin to see Dr Stewart thursday and it was a great visit. 
1. In all the other times we have gone down there, I have had to sit in the chair and hold Ben down while they ran the tests.  WELL NOT THIS TIME!!!  Ben walked in each room crawled in the chair and sat there like a pro all by himself.  He didnt even fuss or yank or hit or pinch or anything when they put the testers in his ears for either exam.  He just sat there like he did it every day, no big deal!!!!!   8) 8) 8)

2.  He stood all by himself on the balance exam!!!!   8) 8) 8)  He was showing some good readings on that too, they werent all maxed out but starting to look more like a roller coaster and much lower. 

Now, with all this wonderful compliance we saw some good test results. 
1.  He is starting to get some separation of sounds in his inner ear.  It wasnt spiking all over the place and on top of each other.  Mind you, he is way below the sound level capabilities he should be, but, his ear is starting to separate the sounds which we can see in his reproducing words we ask him to. 
2.  He is showing better spreads on cognitive thinking than he has ever shown.   8) 8) 8)

Dr Stewart was very excited and has come across using a new (but old medicine) that he is using on about 100 other kids and he has gotten some awesome results with, amantadine (basically used to treat flu and parkinsons).  They are starting to find that children with low immune systems have a tendency to cache this viruses injected into them or caught in places like the colon, nerve cells, fat tissue etc....  But, the important thing is, even though they are dormant they are causing inflamation throughout the CNS and they need to be kicked out.  So, Dr Stewart is hoping that within 6 weeks we will see some huge gains for Ben.  He said he was ready for Benjamin to start talking and gave me a script for therapy in ABA/VB and told me if they gave me any flack to let them know and he would write up anything else I needed. 

I just want you to know, he is the most awesome person I have met in a Lonnnnnnnnngggggggggg time in the Medical profession. 

So, keep Ben in your prayers and I will keep you updated on his progress. 
Aut viam inveniam aut faciam - I will either find a way or make one.  "Can't lives on Won't street."

Let us be reminded of what Captain John Parker told his army at Lexington Green, the place where the War for Independence began in 1775. He said, “Stand your ground. Don’t fire unless fired upon, but if they mean to have a war, let it begin here.

Karol

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Re: Final May Update
« Reply #1 on: May 30, 2006, 12:25:06 PM »
Great news.  I can't wait until the next follow up visit.

Offline Bob Gould

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Re: Final May Update
« Reply #2 on: May 30, 2006, 01:09:39 PM »
He is also doing things he has never done before. The other day he didn't want to wear his glasses so he took them off and gave them to me and I put them on. He did not like that at all so he stuck out his hand and reached for them. So I put them back on him. Later I was laying on the couch and covered up with his tractor blanket. Ben was on the other side or the room bouncing on his ball. He got up and pull the cover off me and layed it in the floor. I called Tamet so she could see. He did it every time I covered up with it which was 4 or 5 times. He has NEVER done anything like that before.
This came to me while chopping wood the other day. You've heard don't sweat the small stuff. I say save it for later and use it for kindling

Offline tub turner

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Re: Final May Update
« Reply #3 on: May 30, 2006, 03:17:09 PM »
I am so glad to see Ben is doing better.......God truly does work miracles in any number of ways.  My heart and prayers go with and to youall and Ben that he may continue to make Giant strides... ...May God Bless, Leslie

Offline melaself

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Re: Final May Update
« Reply #4 on: May 30, 2006, 06:12:14 PM »
I'm so glad to hear this good news. I know the roller coaster ride you are on from day to day is hard to deal with. But, aren't these highs worth what you have to put up with on the low days? My prayers are with you.

And tell Joseph not to be so serious. He won't have to be your gopher all of his life.  rofl He needs to lighten up. LOL I'll bet he's just shy. It was very nice to meet all of you over the weekend at D & G.

Offline Tamet Gould

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Re: Final May Update
« Reply #5 on: May 30, 2006, 07:52:09 PM »
Oh, he is kinda shy, but if he ever starts talking to you, he will talk your ears off.   >:D
Aut viam inveniam aut faciam - I will either find a way or make one.  "Can't lives on Won't street."

Let us be reminded of what Captain John Parker told his army at Lexington Green, the place where the War for Independence began in 1775. He said, “Stand your ground. Don’t fire unless fired upon, but if they mean to have a war, let it begin here.

Offline Tamet Gould

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Re: Final May Update
« Reply #6 on: May 31, 2006, 07:02:27 PM »
Okay, I promise this is the final May update.   <EXCUSE ME?>  We have had a couple of things interesting happen in the last couple of days.  Benjamin ate a half bag of chocolate cookies yesterday.  It was so funny.  I heard him rattling around and went in there and he had cookies all over his face with crumbs on his chin.  I screamed at Joseph because he had left them on the counter.  We just knew Ben was going to blow a cork.   Well nothing happened, he was just fine.  You just cant image how important that is.  2 yrs ago if that had happened he would have tried to kill all of us.   At that time all it took was a tiny piece of corn chip or cracker etc.  We are very excited because Dr Stewart told us that he would get where he could eat what we did (Im not sure he should considering he eats healthier than any individual I know). 

Now here is another big one, as I sit here and type, Benjamin is outside driving the lawn mower by himself with his daddy walking along beside him!!!!!  8)  He has never been able to do that.  It is so funny because that is exactly how he started out on his little 4 wheeler.  Wish I had an easier mower for him to drive but actually it is probably good that it is tough, I think he will learn more.   Another thing is he is started to exhibit more problem solving behavior.  Anyway, I cant wait, until he can talk to us one day.  He is repeating just about anything I ask him to and he is really manding (demanding, requesting) things a lot today. 

We are anxious to see how this new medicine is going to affect him.  So, for now, I will stop because I could go on and on.  I will keep yall up to date as it happens, and I bet it is going to be happening faster now, so stay tuned!!!   8)
Aut viam inveniam aut faciam - I will either find a way or make one.  "Can't lives on Won't street."

Let us be reminded of what Captain John Parker told his army at Lexington Green, the place where the War for Independence began in 1775. He said, “Stand your ground. Don’t fire unless fired upon, but if they mean to have a war, let it begin here.

Offline melaself

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Re: Final May Update
« Reply #7 on: June 01, 2006, 07:21:51 AM »
I know you are all so excited!!!!! It couldn't be happening to a nicer bunch of folks.  <LUV>

Offline Tamet Gould

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Re: Final May Update
« Reply #8 on: June 01, 2006, 07:43:00 PM »
If it wasnt for the nice folks like Pam Cantwell, Bobbie Barter, Ken Bray and Destry & Corky and Linda and Paul Bruney we wouldnt be able to do the things we are doing.  These folks just have no idea, I mean they are clueless at how much they have helped change Benjamins life.  They really just dont understand the depth of change we are going to be able to bring to him AND have already brought to him. 

All I have to say, is a big, fat, huge, monsterous, humongous THANK YOU!!!!!! 
Aut viam inveniam aut faciam - I will either find a way or make one.  "Can't lives on Won't street."

Let us be reminded of what Captain John Parker told his army at Lexington Green, the place where the War for Independence began in 1775. He said, “Stand your ground. Don’t fire unless fired upon, but if they mean to have a war, let it begin here.

Karol

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Re: Final May Update
« Reply #9 on: June 05, 2006, 03:53:08 PM »
He is also doing things he has never done before. The other day he didn't want to wear his glasses so he took them off and gave them to me and I put them on. He did not like that at all so he stuck out his hand and reached for them. So I put them back on him. Later I was laying on the couch and covered up with his tractor blanket. Ben was on the other side or the room bouncing on his ball. He got up and pull the cover off me and layed it in the floor. I called Tamet so she could see. He did it every time I covered up with it which was 4 or 5 times. He has NEVER done anything like that before.

I guess I am going to need to make you a blanket since Ben doesn't want to share. 

Offline Bob Gould

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Re: Final May Update
« Reply #10 on: June 05, 2006, 04:48:21 PM »
Not really I am having fun aggravating Ben
This came to me while chopping wood the other day. You've heard don't sweat the small stuff. I say save it for later and use it for kindling

Offline Lyndia Cotton

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Re: Final May Update
« Reply #11 on: July 01, 2006, 09:48:52 PM »
My God and Christ, thank you for leading me to read about Benjamin!  To watch the story unfold and not know a thing about any of this is like watching a biblical miracle!  (Many years ago at one of my shows at Athens, TX I knew there was a health issue but did not know what the problem was.)

I am going to beg Tamet to take a well deserved break for lunch at the next show and fill in the gaps for me.  "My treat", OF Course!  I love reading about this and want to know so much more.

LCI has worked with Bobby Barter in business for many years.  He is a man of incredible integrity, ability and a sharing heart!  Thank you to him and the Brune's.  Sorry, I do not know enough about everyone else involved  but  - God Bless you All.

Benjamin, Tamet and Bob are all on a new set of prayer lists from the East TX churches!

Lyndia Cotton
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"Treasure each other in the recognition that we do not know how long we shall have each other."

Offline Tamet Gould

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Re: Final May Update
« Reply #12 on: July 02, 2006, 08:16:15 AM »
Thanks Lyndia, you are right, it was at your Super Show (the one you had in Nov for a while) that he got so ill, that was when our world starting spiralling downward.  It was horrible, I still recall it vividly, little did I know at the time that it would last for another 4 years before our lives would begin to improve. 

The Lord showed me some special people at your show that weekend.   People that will always be special to us.  I am very blessed to call them friends.

That was such a horrible time, to know now that Benjamin was in SEVERE pain and the medical profession wanted to treat it like a mental psychosis.  It makes me cringe to think about how much pain he as in and couldnt convey it to us in any form other than attacking us, bitting himself, throwing himself on the floor, screaming, on and on and on.......

I hate to think about it now, because I should have screamed LOUDER at the medically profession, I should have slapped them in the face, I should have filed suits against their ignorance and incompetence.   But, my greatest fear was for the precious gift that God had given us and being able to provide a day without pain and fear for him. 

Aut viam inveniam aut faciam - I will either find a way or make one.  "Can't lives on Won't street."

Let us be reminded of what Captain John Parker told his army at Lexington Green, the place where the War for Independence began in 1775. He said, “Stand your ground. Don’t fire unless fired upon, but if they mean to have a war, let it begin here.