Right what's been happening, hmm let me think?? Lots actually!!
On Monday the 3rd January 2011 I attended the tube weaning talk done by a German Psycologist who is here in South Africa at the moment tube weaning another SA child. He trained in Graz for a number of years and then branched out and formed his own home tube weaning practise. The talk was very interesting, his principals of tube weaning is pretty much the same as Graz. I didn't see too many differences besides the fact that he does the tube weaning out of a hospital environment. One of the main reasons he said was because of Rotavirus. Of course that was what Jason caught in Austria and he said that Rotavirus is very common there. Some interesting facts was that between 3000 and 5000 German children have feeding tubes!! A large majority of tube fed children do not talk and 75% suffer from gagging and vomiting. Some of these children that don't eat can be explained by a medical diagnosis e.g. GERD, Dysphagia etc. Usually they are a result of traumatic experiences eg. incubation, reflux. It was very interesting to hear the figures and discuss his experience with tube weaning. I did ask a few questions in Jason's case but as he said to me there could be medical reasons why Jason doesn't eat, he cannot comment without seeing the child and getting a thorough medical history. I managed to see a lot of familiar faces, some of Jason's old dietitians which was great and I managed to meet the speech therapist and a few
On Thursday the 6th January 2011 we were admitted for the day to eThekwini Hospital to do the repeat MRI and EEG. Knowing how Jason is with sedation and CT scans and MRI's I told our paed that we needed to get him admitted for a proper sedation in order to do both tests properly without any hassles of him waking up. Anyway we did get admitted and decided to try the Vallergan route - 6mls to see if he will fall asleep and stay asleep with that. He was up early that morning so I thought it was worth a try. When radiology were ready for us we gave J the 6mls vallergan and I waited and waited and waited. Eventually he fell asleep and I let him get into a deeper sleep until we attempted to move him. Well as expected he woke up no sooner as we walked down the hospital corridor and was up on his feet quite dozy and not so steady on his feet but WIDE awake. So unfortunately we had to do an IV drip line in order to sedate him properly. It really is so awful holding your child down while the nurses try and poke him with the needle in order to get a decent vein. With the amount of drips Jason has had in his lifetime he doesn't have the best veins anymore so they battled to find a decent vein and had to prick him 3 times. Eventually found one and as soon as it was in Jason was trying his hardest to pull it out so we had to wrap both his hands in bandages like boxing gloves. Poor baby!! Well eventually the vallergan kicked in as well and we were able to take him down and give the dormicum. He slept beautifully during the MRI which was about 40 minutes and also through the EEG. The results showed that the MRI has not changed from the previous MRI, no improvements but also no new changes which is fantastic. The EEG is also normal so that was great to hear.
On Monday the 10th January 2010 I had the first psychologist appointment. The first of a few to assess Jason and to see where he fits developmentally and whether there is any autism or not. The psychologist was lovely, very sweet and we discussed Jason's history in detail, the best as we could given the fact that there is so much history. The appointment was an hour long and we went through all my concerns and questions. The next appointment with Jason and myself was meant to be tomorrow but the psychologist is sick and she knows Jason's history with sicknesses so she has cancelled and will let me know when she is better. Very sweet of her, I am very impressed that she thought of Jason and us.
Feeding wise we have been up and down with feeds. We did manage to get up to 100mls eventually 3 hourly which makes my life so much easier and gives us a break. BUT yesterday and today we have had a bit of gagging and one vomit so we have had to take things slowly again and reduce a little. Eating wise there is still no interest but drinking he has been drinking his pool water. It has been extremely hot. I have tried giving him sippy cups and cups of water but he doesn't want those. Oh well if he wants to drink his pool and bath water, that is fine too.
Health wise we have been battling with the chest and the snotty nose. His chest has FINALLY come right and I have managed to stop the nebbing. The nose is still quite a problem which I think is contributing to the gagging but that too seems to be coming right.
Otherwise Jason has been well, very active, very busy and keeps Bruce and myself on our toes all the time. He goes from usually about 6am to 6-7pm so a very long day without an afternoon nap. It is tiring and a long day but we keep each other busy on the jungle gym, on the trampoline, reading books, playing with flash cards etc. A friend of mine gave me these two books AGES ago, I think about 2 years ago, lovely picture story books with flaps that you open. Under the flaps are pictures e.g. a sheep. On the side of the book is a battery operated a column with the same picture and the sound that that particular animal or thing makes. WELL Jason is able to do both books without any problem. It is really lovely to see. He may not be able to communicate but he is not stupid, he knows and he understands, he just cannot verbalize it. Sign language was one of the things that was discussed with the psychologist and is something we may try with him. It must be very frustrating for him knowing what he wants but he can't communicate with us. I am very impressed!
We have requested medical aid to authorize the polygam every 3 weeks which will help Jason tremendously so as soon as we have the go ahead we can do the 2nd dose. I really think the first dose made a huge different. He has been sick but at least he didn't need antibiotics or physio to get over this sickness. I am also waiting on the neurologist to see if he wants a follow up appointment to discuss the MRI and EEG.
Well school and work start on Wednesday. I am really looking forward to going back to work and I am sure Jason will love being back at school. He can be with his friends and get his school stimulation and I can get some adult stimulation, use my brain and earn some money again.
It's so great to see the amount of people still viewing our website, I am amazed actually. Thank you everyone for the support and comments.
That's all I can think of for now. Until later, goodnight!!