Jason is doing really well, he is looking a whole lot better. It's nice to not have the daily diarrhea which we have lived with for the past 6 years. With nothing going in his stomach there is nothing to come out. The feeds are going fine, still continuous TPN feeds in the vein. J's dietician came to see us this morning and has checked on the feeds and worked out exactly what Jason needs and at what rate the feeds need to be set at. We just have to take regular bloods to make sure that his protein levels and other levels aren't too high. So we must keep an eye on that.
Dr. P is happy with him, obviously told me about the Rhinovirus this afternoon but happy with how things are going and reminded me again that I mustn't think we are leaving here any time soon. I knew that, I knew before TPN feeds started that if we were going the TPN feeding route we would be here for a while. So we will continue with the feeds for a couple of days and eventually slowly start introducing food/formula into his tummy again. When we start this at least we will have the dietician to assist and also Dr. P around as I am not going anywhere until I am comfortable enough that Jason, Bruce and myself can cope at home without complications. BUT for now Jason's tummy needs a rest and needs to heal. I am happy to wait this process as I feel it's about time Jason gets this rest that he and his body needs. He has been so sick for so long on no matter what we feed him that a complete rest from food and formula is a good thing. I am positive about the future and look forward to the process. I know it sounds crazy and no I have not lots my marbles, I am just a mom that has been through a lot watching my son so sick and looking forward to some results at the end of the day.
I am looking into our options for the genetics testing to be done. While I am here I have the time to do these sort of things. I have spoken to a Genetics counsellor who use to work at the lab that holds Jason's DNA and she is going to follow up why the MLPA Subtelomeric screen has taken almost two years to do here in SA. She is quite familiar with these tests and she will get back to me regarding this. She also said that the Micro Array Analysis test will give us a much bigger picture into whether Jason has a diagnostic problem. I have also emailed the Geneticist asking for answers and pricing to do the Micro Array Analysis test overseas. We have been wanting to do this for a while, it has always been something that we have wanted and needed to be done but finances haven't allowed for it. All these things cost and unfortunately without the finances it's a slow process of elimination basically. We still would like to see an immunologist and a endocrinologist to have a look at Jason's case. Again these things don't come cheap. The immunologist is in Cape Town so that would require a flight and stay in Cape Town if that is possible with Jason and the endocrinologist again isn't cheap either as the consult is pricey plus all the blood tests that will be required will be costly. BUT baby steps and one day at a time. Process of elimination and lets see where this takes us.