As the saying goes, no news is good news. It's been about 2 and a half weeks since my last update and Jason is doing really well. He took a while to get over the rotavirus, has lost a lot of weight but he is doing good.
We had a lovely family holiday down the South Coast with my folks. Of course Jason wouldn't allow us to just relax and go on holiday. Not so simple. On Thursday at school Jason wasn't feeling well, he fell asleep at school which was very unusual considering he slept 14 hours the night before. When I got home from work he had a high fever of 38.4. There were no other symptoms, no coughing, no runny nose, nothing. I gave him a suppository. Knowing Jason and knowing that we were going on holiday the next day I decided to take him to the paed just to make sure everything was ok. I thought maybe his ears because his chest was clear. Our great paed squashed us in and saw us straight away (what a lovely man!!). When he took Jason's temperature which was an hour after giving him a voltaren suppository, his temp had increased to 38.7. The only thing that seemed suspicious was his nose was red and inflamed. So off we left with antibiotics and suppositories. The paed said to give him a suppository every 4 hours for the rest of the day and throughout the night and antibiotics for 6 days. WELL we woke up Friday morning and Jason was absolutely fine. Fevers were gone!!
We had a lovely 5 day break down the South coast. Were in a challet right on the beach. Just what we all needed to sit and do absolutely nothing but eat and relax. Jason was in his element. He couldn't believe he had granny and grandpa for 5 days!! We sat on the veranda most days and just watched the whales jumping and playing. Granny brought Jason a sucker and boy did he enjoy his sucker until he dropped it and it broke LOL. We also tried him with an ice cream. Wasn't too sure about that. He took a few licks but I think it was too cold for him.
Otherwise it's been great to have a healthy child again. He is doing so well. We are managing occupational therapy on a Monday, feeding therapy on a Wednesday and speech therapy on a Thursday. Keeping us really busy but it's all good. Nice to have regular therapies again. This is the reason for the lack of updates, just been SO SO busy. Working in the mornings and therapies and running around in the afternoons.
Today we are in hospital for polygam for the day. I can't believe it's been 3 weeks already! Such a good little boy sitting in his cot drawing and watching tv, chanel hopping with the remote. He is looking tired. Hopefully he will have a little nap for me. Not so easy keeping him busy and stuck to a drip for the day.
I am pleased with his weight today. With taking him off the paediasure which we feel may have been contributing to the gagging and vomiting and the rotavirus, he lost quite a lot of weight. His weight is back up and sitting at 13.8kgs so that is great.
Eating wise he is keen to try and taste most things. Yoghurt, biscuits, noodles, cooked chips, simba chips, egg and drinks nicely out a glass. But the food goes in, he chews, tastes it and then instead of swallowing he will rather spit it out. I think it's become a bad habit of his. In Austria we couldn't get past the swallowing stage either. I guess with time we will get there. I wish I could wave a magic wand and get him to eat but not so simple. For these kids to want to eat they have to first of all be hungry and that means reducing day feeds and basically starving them. The problem we have with Jason is he is keen to try but he won't swallow!! So even if we took feeds away, he puts it in but won't swallow! So he starves himself. Don't get me wrong, I want him to eat and be a normal 4 year old without the hassle of night feeds and everything that goes with a tube fed child but if we are going to do this, we need the professional help of the experts. Unfortunately in South Africa these experts don't exist. Graz have offered the net coaching route and have always been fantastic with their follow ups with Jason BUT we need to get past this swallowing phobia. If swallowing wasn't a problem we wouldn't have a problem and could go ahead and wean via net coaching. I am also VERY nervous about attempting a second wean on our own because of the swallowing issue (net coaching is done with being in contact with Graz via email). I just feel that we need someone HERE that will be here with Jason and see exactly what is going on. We have had an offer and this could be done but funding is a problem. It would cost cheaper than all three of us returning to Graz. The costs would include the tube weaning costs, the flight and accommodation. This could go ahead as soon as December but the problem is we can't afford it and the question is will Jason be healthy and ready and will he start swallowing?
The great thing is Jason is doing great on his new medication. We have decided to hold back on the hystamine test for now. In order to do that we would need to take him off all his medication and at this stage he is doing so well and we don't want to change anything!!
We had a lovely family holiday down the South Coast with my folks. Of course Jason wouldn't allow us to just relax and go on holiday. Not so simple. On Thursday at school Jason wasn't feeling well, he fell asleep at school which was very unusual considering he slept 14 hours the night before. When I got home from work he had a high fever of 38.4. There were no other symptoms, no coughing, no runny nose, nothing. I gave him a suppository. Knowing Jason and knowing that we were going on holiday the next day I decided to take him to the paed just to make sure everything was ok. I thought maybe his ears because his chest was clear. Our great paed squashed us in and saw us straight away (what a lovely man!!). When he took Jason's temperature which was an hour after giving him a voltaren suppository, his temp had increased to 38.7. The only thing that seemed suspicious was his nose was red and inflamed. So off we left with antibiotics and suppositories. The paed said to give him a suppository every 4 hours for the rest of the day and throughout the night and antibiotics for 6 days. WELL we woke up Friday morning and Jason was absolutely fine. Fevers were gone!!
We had a lovely 5 day break down the South coast. Were in a challet right on the beach. Just what we all needed to sit and do absolutely nothing but eat and relax. Jason was in his element. He couldn't believe he had granny and grandpa for 5 days!! We sat on the veranda most days and just watched the whales jumping and playing. Granny brought Jason a sucker and boy did he enjoy his sucker until he dropped it and it broke LOL. We also tried him with an ice cream. Wasn't too sure about that. He took a few licks but I think it was too cold for him.
Otherwise it's been great to have a healthy child again. He is doing so well. We are managing occupational therapy on a Monday, feeding therapy on a Wednesday and speech therapy on a Thursday. Keeping us really busy but it's all good. Nice to have regular therapies again. This is the reason for the lack of updates, just been SO SO busy. Working in the mornings and therapies and running around in the afternoons.
Today we are in hospital for polygam for the day. I can't believe it's been 3 weeks already! Such a good little boy sitting in his cot drawing and watching tv, chanel hopping with the remote. He is looking tired. Hopefully he will have a little nap for me. Not so easy keeping him busy and stuck to a drip for the day.
I am pleased with his weight today. With taking him off the paediasure which we feel may have been contributing to the gagging and vomiting and the rotavirus, he lost quite a lot of weight. His weight is back up and sitting at 13.8kgs so that is great.
Eating wise he is keen to try and taste most things. Yoghurt, biscuits, noodles, cooked chips, simba chips, egg and drinks nicely out a glass. But the food goes in, he chews, tastes it and then instead of swallowing he will rather spit it out. I think it's become a bad habit of his. In Austria we couldn't get past the swallowing stage either. I guess with time we will get there. I wish I could wave a magic wand and get him to eat but not so simple. For these kids to want to eat they have to first of all be hungry and that means reducing day feeds and basically starving them. The problem we have with Jason is he is keen to try but he won't swallow!! So even if we took feeds away, he puts it in but won't swallow! So he starves himself. Don't get me wrong, I want him to eat and be a normal 4 year old without the hassle of night feeds and everything that goes with a tube fed child but if we are going to do this, we need the professional help of the experts. Unfortunately in South Africa these experts don't exist. Graz have offered the net coaching route and have always been fantastic with their follow ups with Jason BUT we need to get past this swallowing phobia. If swallowing wasn't a problem we wouldn't have a problem and could go ahead and wean via net coaching. I am also VERY nervous about attempting a second wean on our own because of the swallowing issue (net coaching is done with being in contact with Graz via email). I just feel that we need someone HERE that will be here with Jason and see exactly what is going on. We have had an offer and this could be done but funding is a problem. It would cost cheaper than all three of us returning to Graz. The costs would include the tube weaning costs, the flight and accommodation. This could go ahead as soon as December but the problem is we can't afford it and the question is will Jason be healthy and ready and will he start swallowing?
The great thing is Jason is doing great on his new medication. We have decided to hold back on the hystamine test for now. In order to do that we would need to take him off all his medication and at this stage he is doing so well and we don't want to change anything!!