Almost....

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.

Spoonful of Sugar

"I did it! I took my medicine on a spoon!"

Yup, he did it. After much coaxing and bribery. Since August 1, 2012, we have had no tube feeds at night.  

To get rid of Adam's feeding tube inserted into his stomach, we were told we had to not use it for 6 months and get through an illness. We were not ever close before. As far as Adam's life priorities, we worked on breathing. His first 2 and a half years were filled with surgeries to eradicate his tracheostomy. The last 3 years have been trying to get him to speak and eat. We have done feeding clinics, therapies, entire summers away at "eating school". In 3 years he has gone from 100% fed through a tube to this week, this very week- nothing from a tube.

In mid July, he had a surgery, a tonsillectomy. We traveled to Philadelphia (CHOP) for the surgery- it was the same doctor that previously operated on his airway several times. She recommended that his tonsils be removed. They were enlarged and their removal might help him swallow easier.

The recovery was about 2 weeks. They said it would be about that long, and it was.  He is never a good sleeper after an operation and he complained about the pain. Eating is always a problem, so we were grateful (again) for his feeding tube to keep him hydrated, fed and comfortable. Really, he wanted to lie around and watch movies, color and was pretty unplayful for the first full week.

We followed up with his doctors after the surgery and after he weighed in, they said to stop the night tube feed starting August 1st. He goes back to the doctor  (and the eating centers) the end of August and if his weight is ok, then we will go another month and so on.

We still use a feeding protocol, but it has progressed in the past few years. He still has his 3 meals (breakfast, lunch and dinner) in a structured environment but we have 45 minutes to complete the meal. We still use particular phrasing and wording, but he now sees the entire meal and drink at his place. He gets rewarded after each bite that he takes himself. He tires out and we always feed him the last half of the meal. When we feed him, his rewards are more like a slot machine, unpredictable. We also have a chart where he can have long term rewards for eating fast. The rewards are no longer for accepting a bite of food in his mouth, they are now for swallowing quickly and for feeding himself.  He also can eat somewhere that is not home. These meals are terrible in quantity compared to what we can have him eat at home, but he will sit and eat a few bites of food and will drink his milk where ever we pretty much are.

I know you might not fully understand the hugeness of this , but if you go back a few years and read some older blogs, you can see where we were.

It's been one week and it's so strange. The biggest thing,  is that this entire first week of August, Phil and I went to sleep together. I can count on one hand the number of times that Phil and I went to sleep together in the past five years. They were all times that we left our kids and went away for a night or a weekend. I don't mean "sleep together", I mean actually go to sleep together, you know get ready for bed, roll down covers, climb in, say goodnight, turn off a light and go to sleep at the same time. We have never ever done that until this week. Basically, Adam had a trach (see previous posts about all that) and the past few years Adam has needed either a night feed and a morning tube feed or a night feed only. The routine has been that I do the morning feeds. I have no problems getting up early. Philip is okay staying up late and although often doesn't "sleep in" because of work, will sleep later in the mornings if left to himself. It worked well for us.  I have been going to bed alone for five years. It has been the weirdest week. The first several nights, we both were in bed sleeping by 8:30. Seriously. The minute Adam fell asleep, we discussed the strangeness of it, but we really were tired. It is as if we were trying to jam five years of sleep depravation into this past week.

The other strange thing is that at the end of the week, we went away for a few days and I felt like we were forgetting things. There was no feeding pole, no feeding bags, food supply, no feeding pump, or cords.  I still packed a syringe and an extension set, but that can fit in a small  evening clutch bag (not that I use one for that purpose); it's nothing compared to the pole. I mean, that pole dictated the cars we bought. We know it fits perfectly inside the Grand Caravan standing upright and the wheels fit great and everything and he could have a feed while driving in that mini van. When we got rid of the minivan two years ago and were looking for new cars,  the feeding pole height was on our criteria. Can the feeding pole fit upright for long car rides? Can we feed him with the pole and pump? We ruled out vehicles that seemed great strictly because the pole would not fit. Yes, they make these little backpacks for people with a pocket for the pump and all- we have one of those, I've had to hang it using a clip from the backstop at little league games to feed Adam, but it's pain in the ass to clean the bag and wind the tubing through and in the car, the pole and pump is the best. We drive a CRV. It fits the pole standing upright with the wheel base. It's because that car has this center console that folds down or up- it's not a solid console in the front seat, so the wheel base fits nicely and the height of the interior of the car works with the pole. I'm not kidding. It's one of the reasons we drive one.

The last strange thing and the challenge this week has been to get Adam to take medicine on a spoon in his mouth. He has been on some medicines these past 5 years that are tough to taste, and we are grateful we can just put it through the feeding tube. We switched medications recently anticipating this as a goal to a few medicines that we can mix into his chocolate drink and they don't affect the taste. (on a side note- our pharmacist rocks. We have been going to an actual pharmacy, like not a chain since Adam was born and this small town pharmacist is awesome and we get more care that I know we would never get from a big chain - in fact, I could do a whole blog to our great small independent pharmacy's greatness over the past 5 years) Despite the pharmacist's knowledge, there are a couple of medicines that he's just got to take by mouth. So, this week, at 5 years old Adam took his first medicine ever by a spoon. He didn't spit it at me. He swallowed it and had a chaser of water. He cried and carried on a bit and was scared and it took a fairly long time but he took it each day this entire week.

This is huge.

We are taking this one month at a time and I don't want to get too comfortable with this glorious new scenario. Just in case. You know, I got to protect myself from the disappointment. Got to play it safe until the next weigh-in.  I need to be cautious, I don't want to be too upset if the night feeds have to return.


Hey, but wouldn't it be nice if it lasted?