Okay, so most of yesterday sucked. Sorry, but honestly is what you get on a blog. Nothing was horrible, just one of those days were everything you attempt to do has 3 hurdles you must cross first. You know, like you go to run errands and they are moving a house and block your way (seriously), the notary you needed is not in today, you forgot shoes for AJ and you need to stop at the grocery store... You get the picture.
Eventually I managed to get to the hospital to pick up AJ's recent lab work. Such a treat to find out that her white blood cell count is at 13.4 (5.0 - 11.0 is the normal range) and that she did not build the antibodies she should have, or not as much as she should have or something to infection so she needs re immunized. Great. Add to that, next week we are scheduled to get the results of her sleep study and look into adenoid and tonsil removal. Of course, what ENT would do that with a wbc of 13.4?!
In the end, we will take care of the tonsils, we will get her immune system boosted and we WILL have a better winter than last. All of this is not likely related to PWS but PWS does make it harder for her to rebound... so the two sort of chase each other as chicken and egg.
The fabulous part of the day, however, was Noah. He totally recognized that I was frustrated and stressing and had Ayden Jane climb on him and jump on him in his bedroom for a bit while he and a friend were finishing a movie. Then he asked if he could just take AJ to McDonald's with him to play while he got a drink... I managed to get some cooking done and clean up the kitchen while they were gone. When they came back Noah continued to take care of AJ while I went for an awesome after thunderstorm run.
Eventually I managed to get to the hospital to pick up AJ's recent lab work. Such a treat to find out that her white blood cell count is at 13.4 (5.0 - 11.0 is the normal range) and that she did not build the antibodies she should have, or not as much as she should have or something to infection so she needs re immunized. Great. Add to that, next week we are scheduled to get the results of her sleep study and look into adenoid and tonsil removal. Of course, what ENT would do that with a wbc of 13.4?!
In the end, we will take care of the tonsils, we will get her immune system boosted and we WILL have a better winter than last. All of this is not likely related to PWS but PWS does make it harder for her to rebound... so the two sort of chase each other as chicken and egg.
The fabulous part of the day, however, was Noah. He totally recognized that I was frustrated and stressing and had Ayden Jane climb on him and jump on him in his bedroom for a bit while he and a friend were finishing a movie. Then he asked if he could just take AJ to McDonald's with him to play while he got a drink... I managed to get some cooking done and clean up the kitchen while they were gone. When they came back Noah continued to take care of AJ while I went for an awesome after thunderstorm run.
Hate days like that. Interestingly, my Wednesday was very much the same. One of those days where everything was just a little (or a lot) off. Hugs!
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