I do try and update when we have polygam infusions but lately I have been doing afternoon infusions and an overnighter which goes MUCH faster than a morning admission. We find that the full day in hospital is just WAY too long so we go after school and work therefore not having to miss school and put leave in and we get admitted at round 2ish and leave at about 6am the next morning to get home, dressed and go to school and work. It isn't easy but it's much easier than sitting all day in hospital. At least this way Jason and myself sleep through half of the polygam - well as good as you can sleep in a chair that is. Polygam has become a part of life for us and we are pretty use to it, although 3 weeks goes with a blink of an eye. We try and make sure that we buy Jason a new lego for us to build while in for polygam to pass the time. We do his school homework, some sight words, some colouring in and of course he gets a lot of ipad time. He is so use to polygam that he pretty much gets excited for his hospital days. I think it has a lot to do with new lego and new games of course, but goodness if Jason is happy to go for his polygam we are happy!!
As far as bloods and tests are concerned we have the usual warning markers. Jason is ALWAYS dehydrated according to his bloods and we really do try hard with his fluid intake and so does his school. He permanently has his sippy cup with him but obviously isn't a child that will drink when thirsty as he doesn't get thirsty and you have to constantly tell him to take a sip. His urine protein creatinine is always a worry for his. This is always high despite the medication he is on and this is still a mystery for us and the doctors. This indicates chronic kidney disease. Something we have to always monitor and something always on my mind with regard to the kidney biopsy. Bacterial infection markers are usually high as well but with being immunodeficient his body lacks the fighter cells to protect him. Thank goodness for polygam. Obviously having a feeding tube being a direct hole in his tummy this doesn't help either. One day we will be rid of the tube and it is something that we always work towards.
Eating wise Jason is doing really well. He is starting to show that he now has an appetite amazing enough. At school he has two lunch bags. One for school and one for aftercare which both normally contain a sandwich, a fruit (grapes/banana), some biscuits and a yoghurt. When he has speech therapy I send some more challenging meals like stews, rice, cottage pie. He still isn't a fan of meals yet but he is starting to gain confidence. He is learning the chew, swallow technique often trying to swallow with water to get it down and sometimes a choke or a vomit. With time this will improve and he is dong really well. Speech therapy and feeding therapy has really helped him with this. He has a fantastic therapist that he is comfortable with and she is able to help desensitize his mouth and assist him with gaining confidence with eating. His school obviously is also amazing. The teachers and carers assist him and with eating with his friends he is getting so much better. One day we will be able to throw his mic-key feeding tube into the sea which is always something we work towards. Our problems we face are with his health though and when he hits those bad patches and isn't able to eat. It will all come with time and although he has his tube it isn't been used but it is there when necessary. Hopefully we can get through the winter months and manage to throw that in the sea.
Otherwise all in all Jason is growing, thriving, eating, talking and a happy little guy (touch wood). I am always afraid to update with good news and jinx things but what the heck we need celebrations and good news for a change.
I've been very busy with Rare Diseases Day on the 28th February 2017. I decided this year that I wanted to take part and make a difference in our community with raising awareness about Rare Diseases. I am assisting Rare Diseases South Africa with the sale of rare disease ribbons and at the same time creating awareness in our community about all our special little kids that are different. So far I have about 8 little schools taking part and I'm very excited to see some photos of everyone in their denim wearing their rare disease ribbons. This was a big challenge for me. I wanted to do it last year but with stress I chickened out. This year I thought no I must do this. I was going to just get Jason's school to do it but then when I found out that you had to order a minimum of 100 ribbons I thought "what the heck, go big or go home" so I decided to go big, I contacted our local paper, I put an article in the paper and Jason's school has challenged other schools to get involved and buy their ribbons. For me something very special and close to my heart. To read the article, click on the link below.
northcoastcourier.co.za/79031/jeans4genes-challenge/