Ian ate three goldfish this morning!!!! There was a little gagging and it took a long time to chew and swallow, but he ate them! He also chewed on a teething biscuit this morning. He pretends to use the sippy cup, but doesn't tip it all the way. With a little help from mommy, I think he got a tiny bit. Yesterday, while Nana was watching him, he also ate a fish and played with the teething biscuit.
We had feeding therapy last Friday and we have been doing messy play and "food kisses." He likes the chocolate syrup the best! He has had a lot of mucus the last couple days and CHOP has put us on a "Pedialyte plan." We did one whole day of Pedialyte only.... then today we are mixing the food as we did before, only using half Peptemen JR and half Pedialyte. He has not had any retching since we stopped the regular feeding pattern.
The mucus is formed when the vagus nerve senses danger. Since Ian's vagus nerve is hypersensitive, it is very easily stimulated and produces mucus. This causes him to snore and sound very congested. He gags and retches on the mucus, causing him to spit up often. The "danger" is present whenever Ian has any vagal stimulation, such as a sneeze, cough, reflux, swallowing pain, postural changes, and so on.
Tomorrow, as long as today goes well, Ian will be back up to the full strength recipe, which is actually about 3/4 strength Peptamen JR. We continue to do feeding play sessions and occupational therapy sessions at home each day with different sensory toys. I am still working part time (Monday and Tuesday only) so that I can be home Wednesday-Sunday with him.
I spoke with the nursing agency and Virginia Medicaid yesterday. They are reviewing our claim for nursing care and I sent them the last bit of information today. Hopefully, as the new year rolls in, we will have a nurse at home several hours a week to help care for Ian. Two sets of hands with him are always a plus!
As the holidays roll in, I did exactly what I said I wouldn't do... I blew the budget for Ian's Christmas gifts. We did not buy him a lot for his first birthday, so I decided to get him more for Christmas. Several of his gifts are actually sensory and feeding therapy tools. See, here I go making excuses for everything I bought! ;)
Ian does not seem to be overly interested in the Christmas tree. He is trying to chew on some of the ornaments, but isn't as excited about the lights as I thought he would be. I am excited about wrapping all of his gifts and seeing him tear the paper... although at the rate he has been playing, he will probably step on all of them, just as he does his toys now. Our family room already looks like a toy store. I can only imagine where we will put everything. I continue to package up toys he no longer plays with and will most likely look to donate some after the holidays.