Thankful and Other Things

I am thankful for many things.

X went 8 weeks without being ill. 8 weeks!
We reached the goal of 4 200ml blouses a day. Each bolus takes only a half hour.
X is hooked up to his feeding pump for only 5 hours at night. I remember when he was hooked up for 20+ hours a day.
X is getting his night feeding at a rate of 100ml/hr. I remember when we couldn't get past 55 ml/hr.
X continues to grow and his growth hormone is much higher than it was 6 months ago, which means he does not have a growth hormone issue.
X is eating 250-350+ calories a day on top of his feedings.
X has extra weight to spare when he does become ill.
X has been blessed with an amazing speech and occupational therapist who have helped X eat. We would not be where we are today without them.
X has slept in his own bed for over a month and I have gotten 6-7 solid hours of sleep consistently for a month. I don't think I've had that kind of sleep for that many nights in a row since before I was pregnant with X.
My Mom emptied out X's puke buckets on Thanksgiving for me.
My sister sat with X all of Thanksgiving while he wasn't feeling well.
My family understands that X cannot eat certain foods and does not try to make him eat (I've recently read horror stories about family members sneaking food the children, trying to force children to eat, etc..)
My family enjoyed our gluten, dairy, egg free Thanksgiving meal.
We have health insurance and it has covered everything X has needed.
My husband is healthy enough to work and works overtime so I can be home with N and X and homeschool.
I have a job that allows me to work casual (sometimes ultra casual) and I love the job. Love it.

And there are hundreds more things to be thankful for.

I have needed to remind myself these things the last couple days. X became ill the night before Thanksgiving. I could tell he was fighting something. Wednesday evening he started throwing up. Boo. He barely has a cold, just some congestion, but nothing that bad. I didn't get to bed until 4:30 Thursday morning (and we hosted Thanksgiving) because X was so miserable. He was on straight pedialyte all Wed night. We tried a bolus Thurs morning because he seemed to be getting better, but he threw up most of that. He had straight pedialyte all day Thursday and Thursday night. He did, however, eat 2 large pieces of turkey and some pumpkin pie. That was amazing. He never eats anything when he is ill. Today he is getting a continuous feed into his j tube for 6 hours. That will be almost 50% of his calories. He has thrown up a few times today and he has very low energy, but he is doing okay. I am sure that once I stop the feeding he will perk up.

I have to admit that it is hard not to freak out. I sometimes feel like my mind and brain are not connecting. I can tell myself that he is doing okay and this won't last forever, etc..., but my body reacts in panic. The thoughts, "it's starting all over again", "we are going back to the hospital", "you wont be getting sleep again", etc..start up again. It is a huge mind game for me to not go there and just stay in the moment, although I am getting better at it.

I also get angry and sad. The questions also start up again. Why won't he eat? Why does he throw up when he has just a little cold? Will we ever know what is going on with him? Will he ever get off the feeding tube? And on and on. I don't ask "Why X?" or "Why us?" because if it wasn't X it would be another child and another family. I do ask "Why children?". I know we are not unique and I'm very aware that there are other families with far greater struggles than we have.

Yesterday was a good day even though I had very little sleep and X was sick. When I got up in the morning I wanted to call off the dinner, but I am glad I didn't. It was a fun and relaxing day.

X was weighed last Friday. He gained 3.4 pounds in 2 weeks. And grew another 1/4 inch. He now weighs 43.8 pounds and is 42 inches tall. I emailed the nutritionist because she was concerned about how quickly he was gaining weight (and yet she still increased the calories he receives with the feeding tube). I haven't heard from her yet, so I decreased the amount of calories X receives to 1300 from 1400 a day. He is getting 4 boluses of 200 ml over a half hour. I would love to be able to give him 4 boluses of 300 ml a day. He would only need 100ml over night. We would probably sleep all through the night and his body would be on a normal schedule.

One incredible thing I've noticed is that X is asking for food when he is due for a bolus. His body is definitely starting to figure out how to be hungry. He is also eating larger quantities of food. I think we have stretched his tummy a bit. Even though seeing X ill is discouraging, I am hopeful.

That's what's going on here. It has been a blissful 8 weeks. Pure bliss. After this little setback I am looking forward to more bliss.