Sorry have been gone, but life happens. With that I always want to have a nice summer well at the beginning of the summer we got some bad news and deal with it every day. My son's lungs will never be the same and his airway is messed up, his heart works really hard, his high oxygen is in the 70s, and in the scheme of things we were told that there is nothing that can be done, he can't be put to sleep as he would never come off of a ventilator so he cant have surgery for anything. We get to do a DNR (does not sound fun to me) We get to meet hospice (not ready for that yet). I am at a little better place if I do not think about it to much which is hard. Three years ago we were told he had 7- 10 years, and now it is way less. At the beginning of the summer he was really bad he slept most of the time, getting in his pool (which) he loves wore him out bad, he did not want to eat at all and he is also over weight, but when you don't eat and you don't lose weight ( which he did for 3 weeks) you know something is not right. So we put him on Lasix to get rid of the water weight and that has been wonderful like I said his oxygen was in the 70s normally and now it is in the low 80s. At night of course it is still low at night and I try to get him to wear his oxygen, but he does not like it. Oh and telling the other kids that there brother was not going to be around long that was HARD. We never did tell Joseph as I am sure he would not understand it well. I just want him to be happy. Joseph will be turning 16 this August so of course we have been trying to do things that he likes. He loves going to the motel and we have went twice now, he likes to swim, pizza, and watch movies. If he could live at a motel he would. He also I am thinking he twisted his knee ( at least I hope) and so he has been hobbling on that for this will be the fourth week. Now we finally got our forest fire that is 16 miles away from us and so the air is smoke filled, so am also trying to keep him indoors which is going to be hard. Then add all the other kid activity, camps, relatives, holidays, birthdays, it has been pretty busy... Well I am going to see if I can find some pictures to leave you with.
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| Joe the first time in his pool! |
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| Jacob and Maddie |
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| Jordyn shopping at the mall for her birthday! |
