On Friday we received a lovely delivery by DHL from Rare Diseases South Africa. The lovely Kelly (CEO and founder) contacted me to say that they had some tins of Pediasure for Jason. This is a HUGE help to us and couldn't have come at a better time. Kelly and Rare Diseases South Africa have really been amazing with their help and assistance with Jason. Rare Diseases South Africa also assisted us with our meeting in Pretoria with the team of specialists that have assisted Jason with his cyclic vomiting syndrome and assisting with a diagnosis. Such an amazing organization that assists patients with rare diseases and disorders. Thank you Kelly, Rare Diseases South Africa and DHL for assisting us!
The past few weeks we have had some unexplained fever spikes. No other real symptoms besides the fevers, red ears, the odd gag and vomit and a clear snotty nose. I have been a bit concerned that it is his kidneys and I did get in touch with Jason's nephrologist who advised me that if the fevers persist we must do a urine test. Well we haven't had another fever since last week and I therefore left the urine test. We will test on Wednesday when we have octagam and see from there. The other problem we are battling with is high acidity. Jason's bum is raw, raw, raw - burnt red and bleeding. I have been using all the creams I can think of but the problem is not the skin, it is actually the acidity in his body. If we don't change him fast enough his bum get's burnt. This is something I have to try and sort out on Wednesday as well. We are forever getting new creams but we actually need something that can help neutralize the acidity in his body.
Otherwise Jason is doing well. We have had lots of holidays so no school and routine has been a bit out. Wednesday is our last public holiday this month and hopefully school will be back to normal and therapy can start again. Jason is doing really well with his speech. He is starting to say a few short sentences. His little sister is a huge help with his communication. It's too cute watching them together. Bruce and I are SO pleased we decided to have a second child.
Anyway this was meant to be a short update