His hand is healed

Dec 12: It was a rough weekend. Last week, Grant caught the cold/flu thing and he missed 2 days of school. I felt badly that he threw up on Friday from a coughing fit. Not a GI thing, but he can't blow his nose and he just had this retching/cough thing that I noticed has since disappeared.

Of course, this means that Scott and I had to catch the bug. We have both been dragging for the last few days. It hit me the hardest over the weekend. Yesterday my nose became a snot faucet. I just pushed Kleenex up my 2 nostrils. Trying to give my red, sore skin around my nose a break.

Today is better. I am happy I am at home (instead of at work). I can feel that cold fatigue. It comes and goes. I am not bad enough to lay in bed all day, but I don't have the energy for a normal day either. My nose has finally stopped. I am glad my throat is no longer scratchy and irritated.

We got up and took Grant to get his hand x-ray'ed again this morning. The good news is that it is healed. He explained that being a child is to his favor. Anyone over 13/14 would not heal so quickly. He is in a good age for injury, I guess. Of course, we didn't talk about the obvious. How will we avoid this? It was hinted that maybe Gillette could make something for us. I don't know. I have been looking at their website for over 15 mins now with no obvious dept to call. I will. I just don't know who to ask for yet.

I got a gentle rear ending on our way to the appt. I got his info and he was honest. He was looking at his phone. Sounded like he was distracted and had to get to the hospital. Our cars were fine. I hope there is nothing more to this story.

Because I have some time this afternoon and I am no mood to clean; I thought I would go back to the past. I never finished telling the story about being in the hospital the first time. I am going back to July 7 now.

I wrote on Facebook "Our family is going home soon. While we are ecstatic to shower,sleep, eat, etc in our own space, well, it is only the "beginning". We leave here only knowing a few new things.

1-he will live now. It requires a feeding tube, but he can survive, if not thrive on this formula.

2-there are real doctor s that want us to try GF/CF diet, so we are.

3- grant has no medical reasons for any of behaviors including his self imposed malnutrition.

This trip was necessary. We saved his life. But we did not solve the why and are struggling to find a way to overcome these extreme behavior s. This trip has been intense. We are not leaving feeling much better than the day we walked in. But, we are going home and have a sort of plan to attempt to get him back to eating food."

July 8: Patiently waiting to leave. Probably one of our calmest days yet. Grateful to my friends and family that came down to help and support us on this very hard week. We love you.

Dec 12: And that was that, we made it home fine. Grant continued to gain weight. He dropped down to 52-54 pounds at his worst (depending on your scale) and today he is about 72 pounds. He had gone down to a 5T in shorts this summer at 9 years old. It was frightening to say the least. We went backwards in diaper sizes. And after about a month on the NG feeding tube, he needed a surgically placed G tube. We probably should have just done it when we were there, but everyone was so damn hopeful he would naturally start eating again.

The GF/CF diet was easy for us. We simply had him on a formula that was those things and soy free. We re-introduced soy, casein, and gluten and found no change in his behaviors. It was good to finally do the experiment after YEARS of comments from strangers, neighbors, etc. I can say with full confidence this is not the issue. I still don't know today what or why Grant no longer wanted to eat.

I spent July and August calling anyone and everyone I could to help us. I have hired and fired 2 different behavioral companies (for different reasons). I felt like I was dropped by his private OT/SLP provider because of his behaviors, but we had to stop working with them once school started anyway so in the end it was a mutual parting. They wouldn't touch his feeding issues with a 10 foot pole. Another provider that had worked with him all school year had zero ideas. I called STAR Institute and ended up a 2 hour phone called with Dr Toomi. A woman that I didn't know or understand that she is THE person who came up with SOS feeding therapy. She discouraged me from bringing him all the way to CO with his multitude of issues. She pointed me towards Fraser since they are trained in SOS and they have yet to return my phone call.

Then I called Penn State. Well known for feeding therapy and he told me no on my first phone call. He directed me to a place in Nebraska and/or KKI. I had already put G on the KKI waiting list and I never heard of the place in Nebraska...so I decided to leave that place alone.

Then school started. It's a new school, new people, etc. I didn't/don't expect miracles, but you never know. Maybe they would find a way? Maybe a different environment? Maybe because it's not mom/dad?

Or maybe not.

And maybe it just doesn't matter. Maybe this all just makes our lives easier? I mean, that's not how it felt at first. Leaving the hospital with a new feeding tube!? Phew...that's for another day's conversation. But, now, he's been on it since August so it's pretty easy. Insurance pays for all of his supplies and food. You just dump a can of pediasure in a bag and hook him up. Unless he pulls out his button or the pediasure spills, it's not a big deal. If you see him with a little black bag on, he's eating. In so many ways, it's so much easier. So I don't feel such a push for ANSWERS.