We are so very blessed and lucky to be back at feeding clinic for another 3 weeks! This was always kind of in the plans when we left last year, but we just weren't sure when it would happen. We are only a few days into it right now, but so far he has fallen right back into the routine. He remembered all the therapists and we've only had a few meltdowns heading to the treatments rooms. He is still retching at small volumes, even with the medications, and 4oz seems to be his comfort zone. I remember when it was only 2oz though, so there is some improvement from last year. He is still about 85% dependant on tube feeds. I think this go round we are really hoping to work on texture grading and endurance with chewing skills. Since volume is such and issue and we have learned the hard way that pushing him to fast too soon is not the way to go. It would just be great to see him eating some more age appropriate foods without tiring so quickly. Today he ate part of a waffle during one of his meals that was cut up very fine and his OT made sure every bite was properly chewed. In between bites of waffle he was fed yogurt for a break from chewing. He retched just over the 4oz mark and was so fatigued from chewing he actually fell asleep afterwards - at 9am! It just takes so much out of him! It is going to be a slow, slow process, but when we look at where he was last year, it really is amazing! They have said it is still clearly obvious that he has pain when he eats, but I do think the Neurontin has helped some with that. It was a little discouraging to see that he has only gained 1 lb from last year, but we did find out that he is now in the 50th percentile for height!
Since we are here in the summer, Zane was able to come with us this time and I have loved having him here. Elliot is home with Daddy and getting lots of love from his Grandma's during the day. We are, once again, so very thankful for their help!! The RMD house opened in January, so we are so blessed to be able to stay here this time. It is BEAUTIFUL!!! It's pretty small, only 10 rooms, but everything is brand new and it's within walking distance from the hospital! Oh and of course we don't do anything without drama, Noah was able to make his presence known the first day when he got his hand stuck in the elevator door as it was opening. Right as the words, "please don't do that" were coming out of my mouth, the door opened and his hand slid right in. The door wouldn't open or shut because his fingers slid right in. It took a few people to "unstick" him, but other than a little emotional trauma, he was not hurt.
Thanks for checking in on us and I hope you are all having a great summer! We will update again soon!