Had a great phone call this morning.
This phone call came along at the perfect time. I was super anxious last night about our monthly appointment with our feeding specialists at the hospital today and did not have high hopes for continuing tube free. I could tell he hasn't gained this month and Adam has sometimes come home this month with almost a full lunch, which indicates that some school days he is going 10 hours with very little food and drink.
Yesterday we went to a sports bar and met friends for Steelers and Eagles football and drinks and had Adam with us. There was a very friendly crowd yesterday watching the games, and a guy bought Adam some ice cream. I immediately panicked. I didn't want to seem rude, nor do I want to discuss with an overly friendly happily buzzed strange crowd why my 5 year old is not going to eat ice cream or candy or any treat. In fact, he will not even accept this with a smile but will seem disgusted. I tried to get him to have one lick and exchanged glances with Phil, who snuck some of the ice cream quickly into his own mouth so as to make it look as though it was being eaten. We just didn't want to seem rude and we really were enjoying ourselves and didn't want to offend anyone or change the mood.
I know that several of you are thinking, yay, that's great that he won't touch that stuff. It's not. It's not great at all. On so many levels and for so many reasons it's not great. He needs textures and stickiness and new and various temperatures. Adam needs chewy and all this would help his speech and muscles in his mouth and jaw that would improve everything feeding related and well, it's just not great. It's not great because he would act the same if it was a cupcake or a carrot. Socially it's awkward and neither extreme is healthy for anyone.
I didn't even realize how much socialization was around food until I had a child with a food disorder.
At our feeding appointment today we were discussing, again, with the pychiatrist how interesting Adam is to them, these experts. How can he not recognize hunger nor take pleasure in any food? I don't find this interesting at all. I find it frustrating. I love food. Not all foods, not food for food's sake, but a delicious meal is pleasurable. One of the great pleasures in life. Cheese is amazing. It's a delicious food. Add wine and some great crusty bread and I'm in heaven. It's frustrating for me- often I am thinking that if he could just give it a chance, he would love food that I just need to find that perfect food.
This morning just before we were going to leave for our long appointment the phone rang and Adam ran to answer it. Phone calls always make me laugh. Hardly ever does anyone call our house line so it's amusing to me to have someone who is trying to sell me something wind up talking to my speech impaired child on the phone. It cracks me up.
Today he was answering questions with the caller and he was smiling and nodding and talking like he knew this person, so I was curious and asked for the phone. He replied, "No, Mama, It's for me. "
I was like, um... dude, you have like 2 friends and I don't think they can call you yet. I asked him for the phone and this time he handed it over.
He was sort of right. It was for him. It was actually his pediatrician. The doctor was laughing at this phone call and was genuinely speaking to his patient and said, "I still can't get over how far my buddy has come".
The pediatrician was interested in seeing if I would serve on a panel and be available to assist and help other parents in the practice from time to time, maybe have a support group/meetings and offer advice/work with families like ours. If I was willing- he is still sorting out details, but obviously I said I would help anyone anytime.
I hung up the phone feeling great and left for the 45 minute drive to see the feeding gurus.
It's been two months. Two glorious months of no tube feeding at night. August was a great month, we checked in for our appointment at the end of August and he did not lose any weight so they gave us the green light to try another month.
September is a little harrowing. It's hectic, we all have to adjust to the new schedules and Adam has a long day. The little bugger is tired. Kindergarten is wearing him out. He often falls asleep on the way home from school and actually admitted that he misses nap time.
We checked in today for our monthly appointment and he lost weight. This is no good. Not even a little bit.
The specialist doctor and psychiatrist both were in agreement to wait another 8 weeks before resuming those tube feeds in order to collect more data and see if we level out after that crazy first month. Phew. Four more months to go and then we might get rid of that feeding tube....
So close I can taste it.