Wednesday, April 27, 2005

Dear Noah:

This is an E-mail I sent to all your family one day about your trip to the doctor. Rather than retype things as addressing to you personally I am just going to copy and paste!

Well..we took Noah to the doctor to have his leg checked as he has been complaining about it. He did well for that visit and in fact ran up to the nurse and was hugging all over her and he likes his doctor like that too. SO that went well. They think it is a hamstring pull/sprain but he needs to start some physical therapy now. So they made the referral again for that or added it to his LONG list of things he will need. His muscle tone is so low that it will help to get him to stretch and warm up before going out to ride his bike and things and he needs to do physical therapy to strengthen his muscle tone. LARGE MUSCLES which he has not ever had before. They only worked with him on fine motor skills before or SITTING.

So...since things were going well........we decided to pay a visit down to the lab and see if he could do the blood draw today. He was almost excited about it and ran into the lab when they called us and did well at first. I explained to the woman how the turniquette (sp?) would bother his arm a lot more probably than the needle stick. I asked about the butterfly needle instead of a regular needle. She said they only used butterfly needles for kids...which is good but that also means it takes longer for tubes of blood to be filled up as the blood has to travel through a tiny tiny tube first. Anyway...I looked down and they had EIGHT (yes you read that right) 8 tubes on the table!! I said EIGHT TUBES??? She said well we asked for the smaller/shorter tubes which to be honest did not really look much smaller or narrower than the regular tubes. I could only pray this was going to go well as I figured it would take TOO LONG.

So I was holding him and another lab tech came and helped hold his arm and I think he got more nervous....and then they stuck him and Keith had to come over and he was crying and upset and wanting to move but he sat good for the first 4 tubes or so...then he got antsy and did not want to sit still yelling HELP HELP...and then to Keith " I don't want them to pinch my arm anymore" and on and on. It was probably even more upsetting to US than Noah but he had a very hard time. They have to make sure to get ENOUGH blood in the tubes too as these are genetic tests and they require a certain amount and if they don't get it they have to get more blood (which we would NOT do again). BUT....I guess they are going to run a Fragile X test...a FISH 15 deletion and I am not sure what all else. It was on the other paper we had from the other doctor at the Child Development Clinic but I think they added some more labs to that list. So anyway...................he also had to pee in a cup. At first he was starting to cry and did NOT want anything to do with that either.....but then I told him it was like peeing in a container like he did one time in the bathtub and he was FINE with that and was able to put some urine in the cup in the bathroom for other tests. Thank goodness this was BEFORE the blood draw as he would NEVER have done it afterwards.

Man......we had to take him to the bathroom and get some cool wet wraps to put on his arm. They said he would probably have a bruise as he was moving around so much and making the needle move around too much. I put cool wet cloths on his arm and it looks a lot better now. I always try to do that right away after shots or anything he does to himself or when he gets hurt and it looks pretty good. I think it must be sore the way he acts though. In the bathroom he was crying and said "Mommy I am sorry but I don't ever want to go back to the lab again". I told him it was not his fault and that he did a great job in the lab. I had to get FIRM and practically YELL at him a couple of times but he finally started to calm down. The tears were rolling off his cheeks and I felt so bad about it all and part of me wished I did not have the tests even done. BUT the doctor said it is good to know whether or not he does or does not have other things going on too. SO who knows. Does not really change the outcome any...other than if he had something more specific on top of his current problems I guess they can sometimes treat him differently. Fragile X was something I asked his former pediatrician about a long time ago as he had many of the characteristics of that....though he was not mentally retarded and most with that are to some degree. The FISH 15 deletion test is to see if a chromosome is missing that can sometimes cause different syndromes, mental retardation or hypotonia like he has or perhaps even autism itself. Not sure.

The doctor today told me if they did a scan of Noah's brain it would probably be different than a so-called "normal" brain. Which means he would have been born with his brain different in some parts than we were...which is why he does or does not process some things correctly...etc. WHICH I tend to agree with and believe. There have been many studies that show autistic kids' brains are a bit different in certain areas. Course there have been studies about possible mercury levels and other things contributing to it but he told me they would not run the mercury test as it has not been proven to be too accurate. AND he has had a couple patients go through the chelation process (getting rid of excess mercury in their bodies) only to find out later they are right back where they started from. SO even if autism was caused by mercury overload, autistic kids cannot process or get rid of the extra mercury and are lacking certain things in their bodies to KEEP the mercury from building back up in their bodies. I guess this was from some specific medical journal article he had just read. Sounds interesting....I am not sure how I feel about mercury. I did ask for them to run the test but he said it was very expensive and had not proven to be very effective or accurate so I guess they won't be doing that unless I press the issue. This doctor reminds me of Jeff Daniels? I think that is his name..the actor who played the young doctor on the movie Arachnophobia. I don't think I spelled that right. Anyway...............I asked about some other tests too but in the end I doubt it would make any difference. If the brain is actually developed differently that is something you cannot really change.

The doctor said Noah was a neat kid and I said yes he was but he had his moments. He said well every time he has seen him he is always such a happy/loving child. I said yes he has thankfully always been that way and that of course does NOT usually fit the NORM for an autistic kid. Course I guess in the PUBLIC school setting he was totally different at times. They also did NOT hear the heart murmur on his exam today.

We then left and ran to the bank and the library and playground and then out to lunch.

So....after a very TRAUMATIC morning we are now home and Noah is playing happily with his trains! I am exhausted emotionally but for once I am NOT eating for my emotions. I am really working hard on taking better care of myself and losing weight and all that. SO I am happy I am NOT doing that at least! is a very nice spring day today. Windy and nice cool breeze outside. About 52 right now but partly sunny and cloudy. SUPER NICE. Our windows are open a crack. Noah and I will finish doing his school work in a bit. I better go for now. I need something to drink!! NO ..not alcoholic!. I am talking TEA!!!!!! I even splurged and got a nice TEA SET from QVC (Valerie Parr Hill) so I could make TEA TIME a HUGE event and more CALMING ONE. I got some CDs at the library today I am going to play (Native American Flute, Thunderstorm and Frog Chorus. Thought they might be soothing.

Well...Noah wants to record himself using my camera. He has LOVED doing that and in fact we are using it as therapy. He records about anything and everything and himself in different situations and then plays them back on his computer over and over and over after I transfer the files to the PC. He has learned a lot and it really seems to teach him a lot. I had heard about therapy for autistic kids being used in that way especially for the social/behavioral aspect...which is what got me started filming HIM and taking the camera pretty much everywhere we go. Now he is doing it himself and the other day had recorded 134 CLIPS himself. Cute ones....showing like "this is my bed" (for 2 seconds). "This is my computer" (for another 3 seconds)...etc. I had no idea you could put 134 clips on the camera!!! AND this is without a memory card!.

SO..I need to go for now. LOVE YOU ALL


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