Tuesday, May 17, 2005

Dear Noah:

You have had a very very trying day today Noah. And it is only 2:15 p.m.! First of all because things have been a bit hectic lately around here you got to bed a lot later than normal. We got a phone call last night regarding Floyd and Mommy was on the phone for 90 minutes and that was the same time you should have gone on to bed. SO needless to say you went to bed MUCH later than normal and I told you you would have to get at least 10 hours of sleep and to sleep in the next day. You are pretty good about always making sure to get your 10 hours of sleep in. We have found through experience you do VERY well with 10 hours of sleep. If you do NOT get the 10 hours for whatever reason the next day is extremely trying for you. Hence all your problems I think today. I do give you credit for sleeping in however till 8:13 a.m. That was over 9 hours and not bad. But you have had several nights in a row where you have gone to bed about an hour later than normal but then the next day you do not always sleep in for that extra hour. Over a few days it really adds up and you act completely frustrated at the littlest things.

We set out to the park first today. You were crying over EVERYTHING today. It started out well and you were playing well. Then some little kid came up and tried to push you away from the piano at the park. You unfortunately lost it and tried to push him away rather than using words as that is your first reaction. We are slowly trying to teach you to "tell someone" what bothers you and not to "lash out" instead. You do well for the most part and rarely push or shove anyone anymore. You started crying and pointed to this little kid and said "he came up and pushed me and is not going to play Twinkle Twinkle Little Star" (cause you were). This was a tiny kid though and you still sometimes don't always understand you cannot act that way to anyone but especially around other "tiny and younger kids" who don't know better. So you got him off you and then threw his sand bucket and shovel as far away from you as you could toss it. You were bawling like crazy. I explained as calmly as I could that this little kid did not know any better and to go pick up his sand bucket and shovel and place it back down in front of him so he could use it. AND to remember that you were a lot BIGGER than other tiny kids and that they did not know better cause they were so little but that you were a BIG boy now and needed to try to remember what you were to do in situations like that. You calmed down but it did not last long. Then you saw a chain had come off a playground thing that you walk across and you became extremely upset about that. Once Daddy realized he could not fix it you bawled and bawled and could not let it go. I calmly explained to you again that it was "okay" and that you might have even "more fun" because the thing you stand on would move around even more now. You went over and plopped down in front of the thing and tried to attach the chain yourself. WHICH only frustrated you more when you realized it was not going to happen.

You cried and cried and I was trying to calm you down and finally told you it was "okay". To "let it go". It was okay to do something else or to even "take a break" from the park. You were so upset over so many little things we finally left. We decided to head over to Super Target to do some shopping as Grandpa Lincoln sent you some money. Once there you did pretty well. But you complained about your leg hurting...that right knee really bothers you a lot. You have fallen on it several times and just out of the blue complain about it hurting to the point where you say "I can't walk and I need a wheelchair" in between sobbing. And I mean SOBBING. We finally took you to the doctor a few weeks ago and they THINK perhaps it is a stretched hamstring muscle and that eventually your physical therapy will help that problem. You have such hypotonia (low muscle tone) that it does not help the situation any.

While in Target however you were spinning down the aisles like you so as you are excited and happy and you slipped on their shiny waxed floor and fell ....RIGHT ON THAT SAME KNEE....you cried and cried and cried again. I kissed it and you got yourself together ...but again only for a short time. You cried again when it came time to walk. Wanted Daddy to carry you. You complained even about standing on the end of the shopping cart. You yawned repeatedly.

So we are home now. Got you some of your favorite Dominos pizza for lunch. You came around the table and WHAM...HIT that SAME knee again. All we heard was the thud and you saying "not again!" and you starting to cry all over again.

After lunch you said you could not walk...started to cry....then sobbing again said you could not walk and would need a wheelchair. I told you you would have to "rest" your leg a couple of days. I gave you some Motrin and will put a cold ice pack thing on it in a bit as soon as it freezes up a bit. I got you a new PC game today so you are in your room now playing that. I am going to try to get you to take a nap. Regardless..tonight it will be bedtime at 8:30 or 9:00 PM NO LATER!

Floyd we found out developed a blocked shunt which led to an infection and meningitis. No wonder he was so sick. That did not help his already existing hydrocephalus one bit. We think we found a personal friend/advocate who might be able to help him take care of his affairs. I hope so. He is going to need all the help he can get.

So....much to do on this end as usual. I think we need to give you some downtime for the next few days and let you recoup your emotional status and physical status. Today we will soak you in a nice warm tub of water too..which will also help you feel better.

Okay...I need to go and clean up the lunch dishes. Daddy and I had chicken breasts stuffed with broccoli and cheese which you wanted nothing to do with. I am going to start making you at least TASTE a real vegetable in order to get your TWO FOR TUESDAY specials every week from Dominos. I think that is only fair and perhaps you will actually find one you like enough to eat more than a taste of.



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