Another GREAT day in the Long household. It's so great for Bruce and I to be so happy like this and not only Bruce and myself, Jason. He is a different child! He is so active and so happy and like a little duracel bunny running around and chatting away. The change is absolutely amazing. He is gaining weight nicely now. We can see it in his face and his hip bones are no longer sticking out.
We continue to try solid foods at the table as well as fluids during the day. This morning we tried pronutro and 2 minute noodles. He played with both but wasn't really interested in eating. I actually think he was still full from the previous nights milk which only finished at 5am. We are going to start reducing his night feeds via the pump in order for the milk to finish earlier so he is more hungry for breakfast. Also we are finding with the amount he is drinking during the day he is so full of energy and we are battling to get him to sleep early enough. I only start his milk when he falls asleep (so he doesn't know he is being fed via the tube). The later I start, the later the milk finishes as well. BUT Bruce and myself were actually just saying that today he has had more fluids than he has ever had when he was solely tube fed!!
Today so far he has had 1150mls of fluids, which is made up of 730mls paediasure (milk), 150mls Nutrini (via peg while asleep), 170mls water and 100mls juice. Of this 1150mls, 1000mls was taken orally (he drank 250mls paediasure with a cup all on his own!). I can't believe how well he is doing with the cup. Every day he is getting better and better and drinking faster and faster. Today at 4pm I sat with the syringe and he had his cup. I gave him 100mls via the syringe and after every syringe he had a sip from the cup which was 100mls as well. The reason why I have continued with the syringe and not stopped altogether is I am getting him use to the whole swallowing process as he hasn't mastered the cup just yet. Then tonight he had 150mls out of the cup as well. I had put 50mls in the cup and when that was finished I asked him "do you want more" and he handed me the cup and said "more". He took sip after sip. After that he sat at the table with us and had three spoons of potato and gem squash which he put in with a spoon himself and swallowed and two chocolate buttons.
Jeanette and Carol are doing a fantastic job with Jason at school. We are so lucky and so blessed to have found such a fantastic school and two people so dedicated and so interested in helping our little boy grow, eat and learn. They are such a gift from God and they too are just as excited as we are the way things are going. They also cannot believe the change in Jason. They both sit with Jason for ages and make sure that he gets his fluids via the syringe and they are doing such an amazing job. I don't know what we would have done without them!
It's hard to believe a week ago Bruce and myself were so down in the dumps about how we weren't seeing any progress and how we were just seeing Jason lose weight and not eat. We were so close to starting day feeds and goodness me look at him this week. God truely answered our prayers and continues to show us and everyone involved in this journey how fantastic it is to have him with us every step of the way. Perseverance and faith has definitely paid off!! Graz (No Tube) are very pleased with the progress we are making as well and they continue to give us guidance and support from Austria. They have really been fantastic!!