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Anything need fixed around here. 
Welcome to Handy Manny Will's page.
It has been provided to keep people updated about Will's triumphs and problems.
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Beginners Medical Dictionary:
(I tend to use intials and such forgetting that everyone doesn't have a degree in terminology... Here are some I use frequently if you want something added just let me know)
O2 or Nose = this is how we refer to Will's oxygen use "he wears his nose" because of the cannula
Sats = the amount of oxygen in Will's blood or his O2 saturations. We check frequently using the next ...
Pulse oximeter = if you've had surgery you have seen this it is the little red light they put on your finger (or toe for little guys) ... it registers O2 Sats and heartrate.
Pulm. = Pulmonary Dr.
CT Scan = Cat Scan
That's all I can think of right now that people have asked about. Let me know if there are others.
Will's Drs a Quick Reference guide:
Dr N = Primary Care
Dr W= Neurologist
Dr M1 = Endocrine
Dr M2 = Sleep/Pulmonary
Dr A = Allergy
Dr B = Pulmonary
Dr P = Surgeon
Dr C = Hematology
Dr Y = GI
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Journal
Tuesday, April 21, 2009 12:00 AM CDT i'm sitting here waiting for Will's O2 delivery so i thought i'd update.
Things are just kind of humming along at warp speed. Seems like Spring break was just a few days ago now we are looking to the end of the school year already. We don't have any major plans for the summer just will try to keep the kids as busy as possible.
Back to school. i know i posted about our IEP meeting last time so i'll update that. Will's principal called the meeting because Will wasn't making it to school often enough or long enough. They want Will there as early as possible so he can participate in the fun stuff like music and art. The problem is Will still takes a morning nap. So for the rest of the school year we are going to push Will to wake up at 915 on Tuesday and Friday so he can make it to school by 1010 and be ready for the day. He will go till 1300 - 1330 and then come home and probably crash for the afternoon. i'm in general opposed to waking a sleeping kid, but i see there point too. So we are going to trial this for the rest of the year if it works that will be his schedule for next year as well. Otherwise there weren't many changes to the IEP. He will have a new Aide next year but we won't know who that is till next year probably which means having his health plan really specific again so that anyone can handle it without Grandma around.
So thats the big news for the past few weeks. David is wrapping things up in his History course and looks to be on track for and a- which it sounds is pretty tough with the professor he has so yeah to him. He also has been formally accepted into the history program for next semester so that is good news. Jess continues to be a flake at times, and is looking forward to the end of the school year. She is finding it difficult as school gets harder to just coast through and be miss super social. So that will ba something to work on next year too. i'm still me and doing the best i can. We have an appt with Dr S in the next couple of weeks so it will be interesting to see if he has any insight on my problems in light of what Will has going on.
Thats all for now O2 just got here,
Talia
Read Journal History
Hospital Information: Patient Room: HOME Memorial Hospital
Colorado Springs, CO
Main Line 365-5000 (will update later)
Links: http://www.umdf.org Contains wonderful information on Mitochondrial disorders
http://www.djohnsonbooks.com David's website where you can buy his book
http://www.butyoudontlooksick.com/spoons.htm Spoon Theory (please read)
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