The cherry on the top is Jason has started gagging again. He started on Thursday. Nothing has changed, he is still on Neocate and I haven't changed anything. He was doing so well. Some days are better than others. I can't believe it. One minute he is fine then he is man down gagging. The usual symptoms that he always gets. Bloated tummy, gas where I have to vent him (place tube in his feeding tube to let air out of his tummy). The gagging is definitely worse after a feed and I am down to feeding 60mls at a time again. Sigh we just can't win. His weight is down to 15.8kgs and he is so skinny from malabsorbing and the past issues and this is just going to make it worse. We were managing to get some help with Jason's formula from our government hospital but they have run out of Neocate and are not sure when they will get more stock. This left us with 2 tins on Friday and me trying to arrange to order some tins in a hurry but the company that you order from takes a week to deliver so we have had to buy tins from Dischem at R456.00 a tin (a tin lasts a day and a half). Thank goodness for the money in the Trust as Bruce and I are very short on cash. My working hours haven't been so great lately. With all our medical bills from doctors and medicines the past few months with Jason and Nicole things haven't been easy. I was hoping to go to work tomorrow but Nicole is battling with huge tonsils today. Breaks my heart. My kids both need me and it's stressful trying to see to them as well as trying to make an effort to get to work. Work is money and I cannot give up work, besides work is my ME time and my time out from the stress at home. Thank goodness I have been so lucky that my bosses have allowed me such flexi time as I get paid per hour but I am concerned as I NEED to be at work for my tax deadline which is looming and I need to earn some money. Each day off work is a day less pay.
It's been a really bad year of hospital admissions and sicknesses for Jason and Nicole and a very stressful year for Bruce and myself. We haven't been able to have much US time. Our daily lives are stressful between juggling kids with hospital admissions and seeing to them being sick. It isn't fun. I am very blessed that Bruce is so hands on with Nicole and helps a lot with Jason as well. What a husband I have, I am truly blessed!!
The good news is yesterday Jason allowed granny (who is a hairdresser) to cut his hair for the first time. So yesterday he got his first professional haircut. He looks so handsome.