Well NO presents you could buy would make up for the fantastic day Jason had. He did everything he loved. The best present ever for him and for us as a family was him fishing on the rocks with his daddy. He was in his element and SO excited on and off the rocks “talking” away helping daddy bate up and reeling in. I haven’t seen Jason that happy in a LONG time. For Bruce, myself and granny sitting on the beach watching him enjoying himself was just so amazing and beautiful to watch him having a “normal” day. Our little man was the happiest we have ever seen him and we will cherish that day for ever. Thank you to all of you for the lovely birthday messages, birthday songs and pictures. They were really lovely and SO touching. I can’t believe Jason is 6 years old already. We thank God ever day for blessing us with such a wonderful child. He has taught us so much. He has changed me into a better person. He has shown me no matter what you go through in life it is not that bad. You can overcome ANYTHING and most of all he has brought me closer to God. I thank God every day for my beautiful children and for blessing Bruce and myself with such beautiful gifts.
Tomorrow we have polygamy for the day in hospital. Great news is on Friday I heard the fantastic news that medical aid have to pay for octagam 100% so we have received authorisation for octagam. Octagam is basically the same as polygam but different pharmaceutical companies that manufacture it. The great thing about octagam is it doesn’t cause bubbles and you don’t have to wait for like 2 hours for the bubbles to settle before you start. Three weeks ago we had octagam as well due to a polygamy shortage and it did go a lot faster. So here’s hoping that tomorrow is a smooth day. We will also be doing blood tests and can check out if there is a reason for Jason’s gagging. BUT I don’t know I feel that it is the kidney/urology problem that is causing him to feel sick. It’s just strange how one minute he can be fine and the next minute not well at all and this has been the pattern his whole life. I know there is something not right and a mother does know best. Time will tell I guess.
So feeding hasn’t been great but there is nothing I can do about it. I cannot force the peg feeds or force him to eat. We do try, we never give up ever. I have learnt to “relax” about feeds if we can’t feed him, we can’t feed him. As long as he is hydrated that is the main thing. I know he will lose weight but hey there is nothing I can do about that. As long as my little man is happy and hydrated. I am happy. I would rather him enjoy his day, be able to partake in school activities with Erin, attend speech and occupational therapy than being sick vomiting and gagging and not able to do anything. It’s a tough situation to be in but Bruce and I are use to it. He has been like this his whole life. It’s sad but I think that is all Jason knows, he is use to it. I will NEVER accept it and NEVER give up trying to help and trying to find out the cause. I will do everything in my power to help find a diagnosis, get Jason better and help him eat. This mommy is one determined mommy. I know some things are out of the doctors hands. I know doctors don’t know everything. Jason is a complex case but ONE DAY someone will come along our path and know exactly what to do for Jason. BUT for now God is our doctor and healer and God knows what we are going through. He is standing right next to us going through it with us. A miracle can happen and I will continue to believe for that miracle!!