Another great day for our little man. I am amazed at the progress we are seeing day by day. This mommy and daddy are very pleased with how things are going.
We still continue to try with different foods, liquids, tastes and textures. This morning before school we tried with breakfast - Jason happily sat at the table with us and played with his scrambled egg. He didn't eat any but he sat at the table. He then had an ice cream which he happily licked for a while until he was finished with that. He then allowed me to give him 60mls paediasure via the syringe in his mouth. At school he had a little juice out of a cup. After school Bruce fetched him and they had an ice cream and some jelly. Before occupational therapy he had 45mls water via the syringe. Occupational therapy went really well. Sally is pleased with his progress and he is participating really well. At 15:30 he allowed me to give him 105mls paediasure via the syringe. At 17:00 he had 90mls water via the syringe. At dinner time we had fish and chips which he happily sat with Bruce and myself at the table with his own plate of cooked chips and tomato sauce and chewed on a chip and tomato sauce. He didn't swallow it. I guess it will take time for him to get use to solid foods in his mouth. But the fact that he is happily sitting with us and actually tasting things is wonderful. Tonight before bed at 19:00 he had 105mls of water via the syringe.
So that gives you an idea of how well he is doing with taking liquids via the syringe in his mouth. He is getting use to this and is swallowing beautifully without even thinking. So in total he had 405mls of fluid in his mouth and SWALLOWED - yippee!! It's also great to see that he is also still interested to sit at the table with us and try other foods despite the liquids he is getting. I must admit I was worried that maybe he wouldn't be interested in other foods if he was getting fluids via the syringe but today just shows that he is still interested to taste and try things.
I guess the more he gets use to taking fluids and swallowing the more confident he will get with taking more volume and not only that, hopefully he will move onto a cup or straw. BUT at this stage I am just too happy that he is taking fluids and food orally.
I have ordered the new formula which should arrive in a day or two. The new formula is 1.5kcal per ml and will help with weight gain as well. We are just going to try it orally through the day first and see how he tolerates it. Hopefully he will drink it (being a new taste). Our concern is if we change the night formula we may have problems with his digestion and diarrhea. His night formula is currently Nutrini Peptisorb (1kcal per ml) which is a semi elemental feed that is pre-digested and his body doesn't need to do too much work to digest it. So for now we will see how the day feeds go and take it from there.
I am still cannot believe how much water never mind milk he had today. I am looking at his water bottle and it is almost empty besides about 10mls - totally amazing!!
Thanks to everyone for all the wonderful encouraging facebook messages, emails and smses. I read every one of them and love hearing from all of you.
To end off - today's "Faith for Daily Living" reading was all about prayer and how God doesn't always answer prayers the way we wish him to answer. Sometimes he answers straight away and other times he says "No" and that's it. The response of faith is always to keep on praying, trusting and hoping. I have never given up hope - honestly I have often wondered "why" and "what did we do wrong to deserve this". BUT I have learnt through this journey that you don't necessary have to have done something wrong to be in a difficult situation. Innocent people suffer and guilty people often get away Scott free. That is how life is. It's the way you deal with the situation that makes the difference. Never give up your faith, keep praying and trusting that God is with you every step of the way no matter where you are in life. Bruce and I have had a difficult 4 and a half years with Jason but I know that God has been with us every step of the way. There are always going to be difficult days and easy days. Today was an easy day and tomorrow could be a difficult day. BUT I keep the faith and I thank God every day for the great day that we had (whether good or bad) and I always pray for tomorrow. And when I pray with my little man at bed time he always ends off with a beautiful "Amen".