Well it has been a while since my last blog post. Actually three weeks to be exact and where are we?? We are in for polygam. My only time where I really get some spare time to update. I don't know what it is about hospitals but I really battle to get an early night. My guess would be that these lazy boy chairs aren't exactly the kind of sleeping apparatus where you look at it and think "Oh my goodness I can't wait for bed".
We did an afternoon admission today. After the last admission where we only started two and a half hours after arrival I decided that there's actually no point in doing a morning admission because we end up staying until late hours into the night anyway. At least this way for Jason the day goes faster, he sleeps halfway through his polygam and we are done by the morning and can go home.
So let me think what has been happening the past three weeks? I usually know when I don't have too much news this is a good thing. This means Jason is doing well and nothing much to report back on. Well ok I do have loads of positives to report back on. Bottom line - JASON IS DOING SO WELL.
He is just thriving at school, has the most amazing teacher, his school I can't stop raving about, his therapists and the whole team behind Jason are nothing but amazing. We had a lovely mother's day morning at his school and as usual I sat there in awe of the love, the amazing care each and every child gets and the unbelievable progress they are all making. Best thing we ever did for Jason!
He now knows his months of the year from January to December, he knows that his birthday is in June on the 8th. He knows how to write his name. He is learning his sight words beautifully and you must hear the words and sentences we are hearing from him.
He is doing so well with his eating as well. I never thought we would see Jason eating the way he is eating. He is actually enjoying food for a change. Eating nartjies, kiwi fruit, bananas, yoghurt, custard, biscuits, ice creams, trying different foods like stews, soups and chicken a la king. Yesterday he had pasta for the first time - yes pasta, macaroni and cheese and he said he enjoyed it. He had a bowl last night for supper and I sent a container to school today which he ate as well. I am thrilled, he ate it piece by piece, one macaroni at a time. Chewed and swallowed - how thrilling is that?? First real breakthrough of solid foods besides the rice which he swallows whole. Yes I'm very excited and can't wait to try again.
His weight is increasing nicely. His Dr. today said that he was looking fuller in the face and the scale is showing a weight gain as well. A few weeks ago I started overnight feeds again because he was losing too much weight and looking very skinny. He is definitely looking a lot better and the energy he has is a lot better as well. Night feeds is something I will monitor. I do want to get him off the pump and get rid of the tube but first priority is his health and with health is proper nutrition. If his body is properly fed he has the fuel to do well during the day and isn't so lethargic and deprived of the right nutrients.
I have found that with him being on Imodium twice a day for his diarrhea, I have changed from the syrup to a tablet which I crush and he seems to absorb the tablet so much better with less watery poos and bum burns.
His bloods today looked great. Usually they are all over the place with highs and lows. Today they were all in the normal range except for his hydration levels so we do need to focus on giving him more fluids during the day. HIs nose is a little snotty with the change of season but hopefully we can fix that quick with nose sprays. His mic-key site has been red for a few weeks now even with treating it with a steroid cream. We took a swab today as it was looking nasty and pussy so we will see if anything comes of that.
Regarding his kidneys, his nephrologist has come back and said no biopsy yet which we are thrilled about. His levels are high but not high enough to warrant the need for a biopsy. We will keep an eye on his levels and increase meds if needed. Doctor said he would like to monitor over the next two months and see how the levels are.
Otherwise all is good, we are enjoying watching Jason grow and thrive and it's so nice to have him happy and healthy.