In the Long household we kind of don't know what we are going to wake up to. I know this sounds a bit dramatic but seriously I am not being a drama queen and NO I am not obsessed with my own son. I am serious. We never know what kind of day we are going to have with Jason. It can either be a brilliant day or it can go the other way. I think only those really close to us and Jason can understand this. Only they will know that I'm really not being dramatic. I don't blog every minute detail that we go through so sometimes my blog and facebook posts can seem dramatic or sometimes I can sound like everything is fine when actually everything is not fine. Also it depends on my moods on that particular day that I am posting or blogging. Some days are better than others, other days I am having a really down full of drama day so my posts can pretty much go as much as Jason goes.
The past three weeks have been pretty tough on me and Jason. We had a polygam 3 weeks ago where it started off with a slight fever of 37.5 which isn't bad. The night went well and we had a 38 degree fever the next morning. I couldn't put my finger on it whether it was Jason's autonomic symptoms or whether it was the polygam itself. It's hard to tell as polygam is blood plasma, it's basically like a blood transfusion if I can call it that. The blood plasma is extracted from about 1000 blood donors and the plasma is used to create the human immunoglobulin (polygam or octagam) which is given to Jason via a drip for a couple of hours. This is a foreign body that is placed into his body so his body's natural reaction reacts differently to a foreign body being placed in his body. Some infusions are better than others, sometimes he is absolutely fine and others he has fevers and a reaction. Luckily for us (touch wood) he usually has good reactions. Anyway I am babbling as usual. So he had this 38 degree fever but that went away and he went to school, all fine the next day. The following week we had a play date on the Thursday and the Friday we went to his friend's house who was celebrating his birthday party. I have to explain - with Jason, you cannot let him know when you are up to something fun. You cannot prepare him for a fun event or outing, you cannot let him know in advance that he has a birthday party, a school outing, an outing to grannys, an outing to his aunt and uncle, this is just something that you cannot do with him because he will get too excited and he will get sick. He has cyclic vomiting syndrome which I can only explain as his mind knows that he is about to do something and his brain tells his body to get sick by creating fevers, nausea, diarrhea and vomiting. I am serious, we cannot prep him for anything otherwise it just simply won't happen and he can get severely ill.
So anyway on Friday 2 weeks ago we went to his little friends house for a small get together for the kids to play and boy oh boy before we even left the house he knew where he was going and hello a gag started!! I knew already that it probably wasn't a good idea to go but I was hoping that this wasn't one of those times. I gave him an imodium because I know what his tummy can do in situations like this. Well what an afternoon. I can only say Jason tired to have a good time but his mind and body were telling him otherwise! He gagged and gagged and gagged, he sweated until he was sopping wet, his stomach ran and ran and ran that I must have changed his nappy about 7 times in the space of about 3 hours (if that). Shame man he tried but goodness what an afternoon. I just sat there between gags and changing him and I decided then and there, that's it, I will not be having a birthday party for him that we were planning to have the next week. It just was not worth all the drama that goes with it. Jason's last birthday party he had was when he turned 2 years old and that party we had at home and he caught RSV and was hospitalized and was very ill. I have purposely avoided birthday parties for him because of the consequences but I thought this year we could do one and get away with it but after this day NO I just couldn't do that to him What followed was periodic fevers for 2 weeks, wheezing and chesty. I have been nebilizing and keeping the fevers under control with meds. He either caught something that has been going around or what I think may have happened was with the gagging that day he may have aspirated food or milk into his lungs. It could have been either but I was not going to put him or myself and Bruce through a birthday party which could end up in a total disaster and he could get admitted into hospital from dehydration just because of a birthday party.
His 10th birthday was very nice though. He had a great day at school with his friends. We did his birthday ring at school where his friends sang happy birthday to him. He blew out his 10 candles, they prayed for him, he got a lovely bike for his birthday and we topped his day off with his favorite place - Spur for dinner. My favorite part of the day personally besides being in total awe that my son had turned 10, my son was alive but not only that my son ate crumbed mushrooms for dinner followed by a bowl of ice cream!! Best birthday present for me ever!