strange for me to process this as Jason was asking for some “milky” today, which I made him some milky and gave it to him in his sippy cup. I was scolded for doing that. Mommy made a wrong move there. Unusual for me to stop him from taking anything orally. BUT we continue with the plan. Tomorrow we are up to 60mls per hour PEG and only 20mls per hour TPN. Yay getting there. It’s nice not having so many poo nappies, very strange indeed for me but
GREAT.
Jason also said a 3 word sentence today which was a miracle in itself. This morning I was channel hopping trying to find Mickey mouse for him and after looking for a while Jason suddenly opened his hand, reached out to me and said "let me try" as clear as can be. It was AMAZING I couldn't believe what I was hearing :-)
I have had a lot to process today. Dr P doesn’t want Jason to return to school. He said that his immune system is too bad and he is just going to catch infection after infection and continue to be admitted for these infections and be on antibiotics constantly. His immune system cannot fight these infections and he gets it too bad where he has to get admitted. Jason is such a social butterfly and LOVES school so I don’t know how this is going to go down. It makes me really sad that he cannot go to school. The other thing is where to from here. Who do I find that can look after Jason during the day so that I can return to work to help with the finances. I know one on one attention will be good for him and he will benefit but who do I find and how much is this going to cost. From my little investigation it is a big monthly expense. The other thing is WHEN can I return to work. Every day that I am off I am losing out on money but I guess that is out of my control. It would be nice if we didn’t have the problem that I had to work but we do, I need to help pay the bills at the end of the month.
The blood results have finally came back for the MLPA subtelometric screen after 2 years of waiting and the results are normal. I am trying to process this as well. Normal is great but then we are no closer to finding a diagnosis for Jason. I did know that this test if it came back normal doesn’t mean there is nothing. This is why the micro array analysis test was suggested by the Geneticist but now the Geneticist is saying that an array test could still be done but the problem is she has not seen Jason and the concern is advising the inappropriate test on the basis of limited information. So in other words it would be better to meet Jason. Unfortunately they are in Johannesburg a flight
away so this isn’t something that we can do right now.
I would also like to correspond with the immunologist as I feel his immune system is top priority at the moment. I am hoping that we can correspond via email through our paed and myself and she can direct us in the right direction as far as tests and treatment. If she needs to see Jason we would have to fly to Cape Town but this is something that is important and I feel top priority.
So my head has been spinning today and for me an emotional day. It’s hard for me not to look at our situation and feel hopeless right now. I don’t know what the answers are but I guess we have got to take it one day at a time. God is in control of the situation and God has a plan for Jason and for us. First step is to get Jason healthy and home and we can take it from there one day at a time!!