Been a while since my last update - things have been pretty busy in the Long household. It turns out that Jason had an infection after all. Last week Wednesday he started with a temperature again. He has had a few of these "unexplained" temperatures with no other signs. He obviously had the diarrhoea but for Jason that is nothing new, he always has diarrhoea so it wasn't a "concern" for us. We only started getting concerned when the gagging started. On Thursday at school he wasn't well and started gagging again. When he got home from school he had a temperature again and gagged all afternoon. Then I knew something else was up because he was violently ill and couldn't keep anything in. The temperatures and the gagging were obvious signs and when all of a sudden we couldn't feed him because he would vomit, we knew something was up and needed to be checked out. Jason always seems to battle with gut infections but it seems this time it must have been a bug because I caught it as well. On Friday he wasn't well at all so I kept him home from school and took him to the paed. The paed always trusts my judgement, he knows with Jason I know what I am talking about and I know when he needs antibiotics and when he needs to get admitted. He prescribed two antibiotics, rehidrat and medication for the diarrhoea. Obviously he said to me our main concern with Jason is dehydration. Even though he has a feeding tube, if nothing stays in he would have to get admitted for a drip. Thank goodness we went to the paed on Friday because on Saturday he was worse as nothing was staying in. We just took it easy and didn't feed him the whole of Saturday apart from water and rehidrat to keep him hydrated and to keep his medicine down. Even at night he was waking up after 200mls of milk gagging so we had to stop his night milk as well. By Sunday afternoon he was much better and we were able to start feeding him again. Thank goodness he seems to be fully recovered. The diarrhoea is still there but that isn't going to go away as we know! He is still completing the course of antibiotics so that will help as well.
We managed to see the neurologist on the 23rd May. I am glad we went as we now have closure on a few things. This appointment was a follow up appointment after all the tests that we did for two conditions - Riley Day Syndrome (Dysautonomia) and 17q21.31 chromosome disorder. The neurologist was actually quite amazed at how well Jason was looking. He was very pleased that Jason has started eating and said that he is on the growth charts for both his weight and his height. Bottom of the charts but hey he is on the chart at least! He went through all the results and discussed Jason in detail. Jason was examined from head to toe. His weight, his height, his length of his arms, his length of his legs, his reflexes etc. The neurologist discussed the MRI and CT scan results. From the first MRI and CT nothing has changed in the second. He feels that the demyelination was more than likely caused as a result of a virus that Jason may have had earlier in his childhood. Basically it is an underdevelopment of his brain. On the MRI it shows as white matter in various parts of his brain. He is happy that there has been no change, in other words it hasn't gotten worse. He said that we must not worry about it. We must just carry on with what we are doing and that is working on the areas that Jason needs working on - speech therapy, occupational therapy etc. Speech therapy and occupational therapy are very important to continue. As far as school is concerned he feels that Jason is in the best place where he is now with Jeanette and that we mustn't worry about schooling at the moment and give him another year where he is. He did suggest that we have Jason's hearing tested again. Although we have already done hearing tests, that was a while ago when he was very young. He is definitely hearing but it could be that Jason is not hearing complete words e.g. he is hearing CA instead of CAT. So a hearing test is something that we will be doing soon. Otherwise there was nothing else that the neurologist could suggest. He still feels that all of Jason's symptoms fall under a syndrome but he is basically stumped by what it could be. So we now have closure. No more testing and peace of mind!!
Tomorrow is our little man's birthday. He is turning 5 years old ALREADY. I can't believe it! Unfortunately in true Jason style he will spend his 5th birthday in hospital for polygam with dad. Yip I know, really crap but unfortunately there has not been any isolation rooms available for Jason this week and one has become available tomorrow! I have done my birthday shopping for him, brought a cake for them to share with the nurses and Dr. P. They are after all part of the family so I am sure they will sing Happy Birthday to our little man! What can you do? I was very down about it yesterday because deep down I knew that this may happen, him spending his birthday in hospital but what can you do, it's one of those things!! We have planned to go to uShaka Marine World on the weekend. Jason has never been and as most of you know, he is a very keen fisherman and will love seeing all the fishies and I am sure he is going to love the dolphin show as well. On Tuesday he will have a little party at school with all of his school friends. So pretty much an extended birthday. I still can't believe that he is turning 5 tomorrow. I am just the proudest mom - my little man is the most amazing little boy. He teaches me life lessons every day. Through everything he has been through, he always comes out strong and smiling. A true example to me and I am so proud of him!!