Feeding at school is also going really well. Jason is now starting to self feed his yoghurt and cereal which is amazing!! His speech therapist sees him once a week for individual therapy and once a week for group therapy. He is also receiving his occupational therapy once a week.
I honestly don't know what we would have done without this school. Jason has just totally taken off this year. He is a changed child and really it all boils down to the school and the extensive therapy he is receiving. The school fees are a lot and we have to try and make ends meet every month but like our medical aid, this school is the second most important payment that we have to make every month and the results are showing.
The trust has enough money to last about two months at the rate we are going. The thing with Jason's needs, they all cost plus we have to think about his medical as well. His medication costs a fortune every month and we are out of medical savings so we are solely relying on the trust to pay for everything that is required. We made the decision to go with the feeding therapy because we believe this is what Jason needs. We cannot continue going at a snails pace with his eating and he needs that intervention. I cannot do it because I don't have the experience and expertise to know how to do all the sensory stuff that is needed to help him to eat. Besides I am his mother and he manipulates me. He knows how to push my buttons, he knows how to play the sympathy card with me. We needed someone equipped and qualified to do extensive therapy with him and that person is Sarah. You know when your heart knows it is right, well my heart knows that this is the right thing to do and we just have to take a leap of faith and go with what we believe. No the trust won't be there for much longer but do we try and stretch the trust for a few more months or do we go with what we believe in and just go with it. We have decided to go with it.
I have had a few people ask how they can sponsor a feeding session and a few of my good friends have kindly done so. We have had 4 sessions sponsored so far. Each 45 minute session costs R320.00 but I believe it is money well spent if it is helping Jason progress with not only his eating but everything, his eating, his communication, his energy levels. If you would like to sponsor a 45 minute feeding session you may do so by either depositing R320.00 into the trust account or by paypal ([email protected]). The trust banking details are :-
Standard Bank
Account number : 25 283 9455
Branch code : 05-78-29
Account name : The Jason Long Trust
Swift code : SBZAZAJJ
You know sometimes you get torn in life with decisions you have to make. Bruce and myself have to make daily decisions for Jason. Unfortunately a lot of those decisions revolve around money because everything needed for Jason boils down to money. God has always provided in the past and I do believe we will be ok. No-one wants to ask people for help financially but sometimes you have to put your pride in your pocket because there are those that would like to help where they can. You know you don't know what it's like until you are in that situation yourself. I have so many friends in the same position as we are and yes I do feel guilty that I have to have fundraisers for Jason and put our story out there but if I hadn't, where would we be? Jason would not be in the special needs school he is in at the moment, he would not be receiving the therapy he needs, he would not be seeing the doctors and receiving the right nutrition that he requires every month. I know I get monotonous at times but hey this is me, I am just honest, we are just human. We are not super human. We cannot possibly afford the requirements for Jason on mine and Bruce's salary alone. If I could have another fundraiser I would but to be honest I feel too guilty. People get tired of the same story. The last Barnyard Fundraiser went really well but it's a lot of work. The hardest part is being the one needing the money trying to raise the money. It's not so easy raising money for your own child. Raising money for someone else is easy. Spreading the word for someone else is easy.
This morning I dropped Jason's urine at the lab to repeat the protein creatinine ratio. The last result was 0.92 which was very high and the nephrologist was not happy. BUT Jason wasn't 100% at the time and we are hoping that it was an infection raising the levels. He is now very well and I am hoping and praying that tomorrows result will be good. Holding fingers and toes for a good result.
Something interesting information is Jason's website is receiving daily hits of about 200 people a day. Who is reading and where they are from, I have no idea. This gives me the motivation to keep Jason's Journey going. I know I am not writing to myself and this is why I keep my blog going. If I can help another family in a similar situation I am happy. If maybe one day we stumble across the right doctor or specialist that happens to read this blog wonderful. The power of the internet hey!! I could do a private blog but Jason's Journey has been going for four and a half years now and there are regulars following Jason's progress. If you are reading this, please leave me a little message under the comments or the contact page. I would love to hear who is reading and following the website. It is always lovely to hear from others reading.
Anyway I better get to bed, it's late and like every night I will be up at least another two times to check on Jason. I have to make sure that the feeding extension chord doesn't wrap around him and choke him or pull his feeding tube out during the night and then of course his formula will stop at about 3am. This is when I can finally get some sleep and chances are Nicole wakes up for a bottle and then it's morning already. I can't wait to get rid of this feeding tube. I SO need to go back to getting some sleep without having to wake up every 2 to 3 hours. It's like having a new born baby for 7 years.