Author Topic: June 2006 Update  (Read 3260 times)

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Offline Tamet Gould

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June 2006 Update
« on: July 02, 2006, 09:36:58 AM »
What a month June turned out to be!!  Don't get me wrong it had its downfalls too, but they were over come also.

As you have read in the May update we went to see Dr Stewart the last week in May and he started him on a new medicine, Amantadine.  About 2 weeks in we started seeing more spontaneity with language, MORE word replication (echo), more interaction with us and others and some behavior problems raised their head also.   Then the 3rd week of June Ben got sick, ran a fever, and I let him (I believe the body does it for a reason and will let it happen as long as the temp doesn't get to high).  It went away the next day, but he was getting congested bad, and by Thursday it was real bad, and the fever was back.  By Friday morning he was breathing shallowly (using only the abdomen to breath) and he was VERY lethargic.  I got up early to check on him and his temp was high, he would barely move, just lay there and look at you.  Time to go to the hospital at the very least.  I didn't want to sit in emergency, so I got the whole house up, packed some stuff because I knew when we left the house, Ben and I would be staying at the hospital.  He hadn't had pneumonia in 10 yrs, but I recognized the signs. 

It was so bad that when they went to pull blood, he didn't even flinch, his head was rolling around, and when he didn't flinch that spooked me.  We went to a local county hospital that I found up here just right down the road.  They of course admitted him and then the poking began.  It took them at least 8 tries before they found a vein to use, Ben never even flinched.  He just laid there and watched them.  I'm thinking if they dint hurry up and find one, I am going to pushing them aside and find the darn thing myself!!!   <..>

Anyway, we were in there until Monday morning and he was much better, enough so that I wanted the H E L L out of there.  They weren't real thrilled with me because I told them, "No" to several things and made them double check with the Dr first etc etc etc, but that was their problem not mine.  Ben began to have a problem Sat night and they just popped him with Ativan, GRRRRRRRRRR  <..> I hate their mentality about him.  It is like running into a wall of stupidity when they determine he is mentally retarded (their definition due to their training).  I swear, it is them that becomes mentally retarded, they just quit using their brains, medical education and common sense.  Oh well, no use going off in that tyrant.

When we got home, Ben got violent over the next few days, so much so, that I was calling Dr Stewart bawling.  Thank God for some common sense in the medical profession.  They talked about an antipsychotic drug, but first wanted to try an anti fungal, just in case the 2 high powered antibiotics he had been on had set off some reactions that could be turned around.  Low and behold, by the second dose he had calmed back down and it is amazing now.  In a week, he has burst thru and his language has rocketed off.  He is saying high and bye to people and waving also, he will repeat just about any word you ask him to and will call people by their name when you tell him their name.  Bobs brother came over the other day and was swimming in our pool and Ben got in with him and was dunking him under water, flipping him off the float (doing a lot of the things I would have done to my relatives when I was that age) and having a great time.  He even was calling out his name when he left.   He is just getting so into people now, wanting to do more with them, he gets so excited when he speaks to them and they speak back.   You just cant realize how much I have longed to see this happen and I cant wait for it to truly become a common occurrence.  It is frequent now, but it will be common soon. 

I have cornered a lady that I met a couple of years ago to help us with a home program for ABA starting in July and I look for great things to start arriving and then becoming common place.  I guess in a way Bens' abilities are a lot like my computer.  If the data is corrupted in route there is nothing the brain can do with it (so we have Ben as we know him), but the harddrive is becoming uncorrupted, data is going thru, and going where it needs to go and he is getting better. 

I have people ask me if I have ever seen a miracle.  I live with a miracle in my home everyday.  I have seen the miracle of crawling when we were told he probably never would, I have seen the miracle of walking, when we were told he probably never would.  I have seen the miracle of speech and communication, which we were told we would probably never see (I get to see the little small increments of these skills, and these little increments make me dig in harder and push him and the medical profession harder). 

Let me share with you some miracles that I think are coming; Ben will be able to have a conversation with us and others, Ben will hold down a job and acquire skills for himself.  These are big miracles.  Miracles that I can see a glimpse of from time to time when the clouds clear.   Things that he and we will have to work hard for.  But, I think they are feasible.  He gets closer everyday.  We see these small steps and get very excited.  I'm sure y'all read in my posting, "Well she said he was doing that last time", what you cant see are the nuances that are changing and people that have know him for just a year are amazed at the difference they see in him.  We watch video from a year ago, of us trying to get him to do something.  He thinks it is funny when I will turn to him today and ask him the question or to do that and he just does it or says it. 

I don't know that Ben will ever be like you or I but Ben will be self sufficient.  That is my goal for him, that is the miracle I am seeking.  So, please continue to keep him in your prayers and thoughts.
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 Hope_Marie

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Re: June 2006 Update
« Reply #1 on: August 09, 2006, 11:24:52 AM »
oh yay!! im glad to hear hes doing well and speaking better its only a matter of time till he's conversing and doing things that those dang ole doctors said he'd never do!! im praying for ya'll!!