Well last week was another day in hospital for polygam for our little man - as always such a long day trying to keep a 5 year old happy, attached to a drip for about 8 hours! I must say he is very good and knows that he is stuck there for the day. Bruce did most of the day with Jason and I took over in the late afternoon and we swapped, I took over with Jason and Bruce took over with Nicole at home. We have to become quite inventive with our hospital activities in order to make the day go faster and to keep the little man happy! I must say Jason does become quite the little Macgyver with his games. Walking around with his drip stand and climbing into the smallest of hospital cupboards!!
Speaking of ears, yesterday we had the hearing assessment. Preparing myself for the assessment I in a way "hoped" that they would find something not 100% because then at least we would have something to work with - a reason for his lack of speech. Everything was great apart from the fact that he has the fluid in his ears which was also picked up. But his hearing is fine! I must say I was most impressed with my little man. They did a few different tests, one of them required him to sit in a sound booth with headphones on and he had to listen for the "beep" and put a block into a bowl when he heard the "beep". The "beep" sound is set at different volumes and Jason had to listen for the beep. Well the audiologist explained this to Jason twice and I was amazed that he understood straight away! Silly me went to peek at the whole procedure and I saw my little man sitting there with his headphones on with a smile on his face and totally concentrating and when he heard the "beeps" he was putting the blocks into the bowl. I was so proud and so "touched" I bust into tears like only a mommy can. The therapist must have thought I was totally crazy! I have always known Jason is not stupid, he does understand but just lacks the ability to speak. I guess seeing him following these instructions just confirmed that for me!
All of these assessments and appointments are totally nerve wracking. You prepare yourself before them wondering what are they going to say about your child and you do psyche yourself up thinking of all the possibilities. Well we have done the neurologist, we have done the hearing assessment and now it's time for the educational psychologist. It should be interesting though and at least Bruce and I will have some direction and an idea of where Jason may go for schooling.
Eating is still happening but the past two weeks has been very slow and not so easy with the gagging. When he gets sick and snotty like this he really battles with the excess mucous, he gets all clammy, sweats a hell of a lot and gets goose pimples all over his body while eating. He starts grinding his teeth and scratching himself because he is uncomfortable. You can just see it in his face that he is uncomfortable and doesn't want to eat BUT we have to continue and have to try and force him to eat otherwise he will just keep losing weight. He is still being fed 3 hourly during the day orally with pureed food (soups, custards, mash etc) and at night he is fed on the pump his Nutrini Peptisorb high calorie formula. Night feeds we have to increase or decrease according to how well he ate during the day or how well or how sick he is feeling.
This week I received a lovely email from a close family friend in Belgium. She has been wanting to help us out with Jason and our finances and she kindly spoke to all her colleagues and sent an envelope around the office and everyone in the office helped with a donation towards Jason's medical expenses! We are so touched and want to thank every one of you for your kind contribution. I received the money today through Western Union (which I had never heard of before lol) and this money will pay for the educational psychologist appointment next week! This lovely lady is also going to arrange for a little fun walk to raise funds for Jason as well! Thank you so much! Bruce and I are very touched and amazed how kind people are and how willing they are to help. I believe Jason's Journey has a few more followers from Belgium and we would just like to thank each and every one of you for your help!!