I don't know ALWAYS with Jason it's a couple of steps forward and huge leaps back. I don't know what's up now. We were doing so well last week eating and drinking wise and again BANG we are hit with who knows what. Is Jason just rebelling, being stubborn or is he actually feeling sick and not well?? I have no idea to be honest. I feel like a broken record sometimes and also a stupid mother that can't even feed her own child. Why does everything with Jason have to be SO hard?? Why can't we just have an easy road and actually stay on that easy road and progress forward and not look back? I really thought we were over the worst of the wean and Jason's gagging and vomiting. I really thought that this was it, we are there. We were so close to having him weaned. We were 200mls away at night feeds where we were tube free and now I feel like we are back to square one again. Ok not so drastic as square one, he is eating solids now (at school) and he is drinking orally (with a syringe) but seriously why can't we just progress on where Jason is eating with a spoon without a problem and drinking out a cup without a problem??
This weekend we really battled with his milk (via syringe) and also tried solids (with a spoon) and no matter what we tried he would gag and feel sick. On Friday and Saturday I only managed milk (2 x 230mls) and today he has only had 230mls so far and a few spoons of solids with a HUGE fight and gagging and crying. It's heart breaking - I feel like I am force feeding my child, making him eat and I don't even know if he is sick or not? Bruce and I have no idea - is it possible that he makes himself sick like this or is he actually sick? Why would he make himself gag and vomit and shake and poo and then pass out sleeping?? I don't know?
I was asked this weekend by someone for the articles and an update on Jason. I read all the articles that appeared in the Daily News and the YOU magazine. It brought back so many memories for me. Good and bad - the long road we have come from our first article when we started fundraising to go to Austria to where we are today. We have been through a lot with Jason and still have a long road to walk. I think the hardest part for me is the constant highs and lows we get. One minute things are fantastic, Jason is drinking out a cup and eating with a spoon and the next minute he refuses all attempts and is gagging, vomiting, shaking and crying. It is very tiring but I have to remember ONE DAY AT A TIME and remember what progress we have made from a child that was solely tube fed day and night and wouldn't touch a drop of water, milk or food to now at least taking liquids and food orally. I guess we have just hit another one of those bumpy roads and in a day or two I will be writing again how good he is doing.
Sometimes I also wonder whether I should keep this website going. Am I boring the people reading it? Do I sound like an idiot to the outside world? Is it good to have all my thoughts out there for everyone to read and judge if they are judging? I don't know. I know a lot of people say I inspire them and I help them with their kids that don't eat. I have heard from a lot of people how they think I am such a great mother because of what I have been through. But what makes us and Jason so special compared to all the other people out there with special needs kids? We aren't, it's just I guess I find my blog therapudic for me to put my thoughts down and afterall there are a lot of people still following the updates and wondering how Jason is doing. So if I can help those moms and dads that are also trying to wean their kids or will in the future I hope that this website can help them in some way. I suppose a few bad days are definitely meant to happen and that is the reality of the situation. This is how it is - not edited and made pretty and happy. This is our every day life with Jason our special little man!
One day at a time hey! Tomorrow he could eat like a champion and I could be on top of the world again. It's just hard - I have a new born baby on the way in 3 and a half weeks and we were so close and doing so well with the cup and the spoon. It is stressful having to feed Jason every 3 hours all day long and overnight as well. Well a few weeks back when we were on around day 30 of this wean God spoke to me and said "Don't quit" and I am not about to quit and give in. I always pull myself together, pick up the pieces and carry on. I don't let things get me down easily. No-one is going to do this for me, it is up to me and me alone and it's no good falling apart and feeling sorry for myself. Jason will be tube free one day and I WILL make sure of that!