We are getting there, been battling with this flu for over two weeks now. The three of us have had it and I just can't get rid of it with Jason. We have now finished the course of antibiotics and still it won't clear. I have still been nebbing and giving the nose sprays etc. I think the paed was right. I think it is actually upper respiratory where he has a thick snotty nose causing a post nasal drip and making him chesty and wheezy. He is still coughing but I think a lot of it is in the throat and nose.
The problem with Jason is when he gets spit/phlegm in his mouth he won't swallow. He doesn't swallow like everyone else does obviously so he will sit there with a mouth full in silence and I have to make him spit it out or spray his mouth with water and then he will spit.
It has been a very frustrating two weeks having him sick and just so quiet and not himself, not my little man. Also we have missed some therapy which I hate missing because it does him so much good. Even yesterday at OT the therapist said that he wasn't himself, didn't say a word the whole half hour which is strange for him.
Anyway I am sure we will get it right. Hopefully before the weekend because we are going down the south coast to granny and grandpa and his cousin Alexander and uncle Raymond is there. Last weekend Alex and Jason played SO nicely together. They both had a ball so hopefully by this weekend Jason is 100% so he can go to the beach and we don't have to worry about him getting worse if he gets wet.
I have had a lot on my mind lately with regard to the lack of eating and the tube feeding. We really need to get Jason eating and soon!! I want to give it a good bash over December, go to granny for two weeks and take away the day feeds and only feed him at night via the pump when he is sleeping. It sounds pretty simple and most of you are wondering why we haven't done it ages ago but it's not so easy. Easier said than done. It's hard watching your child starving and not understanding why, watching them lose weight. BUT it has to be done. Jason has to start eating and the only way to do it is to take away feeds and make him hungry to eat. Bruce and I have been through 5 weeks of the Graz program so we know what needs to be done, we know how it works. We can do this and Jason can as well. We have to be cruel to be kind unfortunately. One thing I am worried about is his hydration. Every 3 weeks when we do bloods during polygam the bloods shows that he needs more fluids/water. So we have to keep upping his water. Well we will get there, I know we will!
We just have to keep the faith, keep our prayers up and trust that God is with us through this all. He knows what we go through with Jason on a daily basis and he is with us every step of the way. What more can we ask for??
The problem with Jason is when he gets spit/phlegm in his mouth he won't swallow. He doesn't swallow like everyone else does obviously so he will sit there with a mouth full in silence and I have to make him spit it out or spray his mouth with water and then he will spit.
It has been a very frustrating two weeks having him sick and just so quiet and not himself, not my little man. Also we have missed some therapy which I hate missing because it does him so much good. Even yesterday at OT the therapist said that he wasn't himself, didn't say a word the whole half hour which is strange for him.
Anyway I am sure we will get it right. Hopefully before the weekend because we are going down the south coast to granny and grandpa and his cousin Alexander and uncle Raymond is there. Last weekend Alex and Jason played SO nicely together. They both had a ball so hopefully by this weekend Jason is 100% so he can go to the beach and we don't have to worry about him getting worse if he gets wet.
I have had a lot on my mind lately with regard to the lack of eating and the tube feeding. We really need to get Jason eating and soon!! I want to give it a good bash over December, go to granny for two weeks and take away the day feeds and only feed him at night via the pump when he is sleeping. It sounds pretty simple and most of you are wondering why we haven't done it ages ago but it's not so easy. Easier said than done. It's hard watching your child starving and not understanding why, watching them lose weight. BUT it has to be done. Jason has to start eating and the only way to do it is to take away feeds and make him hungry to eat. Bruce and I have been through 5 weeks of the Graz program so we know what needs to be done, we know how it works. We can do this and Jason can as well. We have to be cruel to be kind unfortunately. One thing I am worried about is his hydration. Every 3 weeks when we do bloods during polygam the bloods shows that he needs more fluids/water. So we have to keep upping his water. Well we will get there, I know we will!
We just have to keep the faith, keep our prayers up and trust that God is with us through this all. He knows what we go through with Jason on a daily basis and he is with us every step of the way. What more can we ask for??