Brave Bear

Today Isaac had his blood drawn for labs. This is one of the regular parts of our routine. 22q can mess up blood chemistry in some messed up, dangerous ways. Since Isaac doesn't have some of the other symptoms, this and mental health are the things we monitor closely, especially since he was born with jaundice and low iron and it took a really long time to fix those lows.

Early on, I insisted on trying to address his lows with nutrition. His lows were never dangerous lows (except the jaundice). However, early on we were doing blood work every week and then every so many weeks, then monthly. We have become experts on what works for him for blood draws because early on we let the big hospital lab do their thing and their thing involved student nurses and a whole lot of incompetence. Isaac still cannot have blood drawn from his right arm because of how they injured him in an attempted draw. They never got the sample from him, which was a good thing, because they were going to take it all at once and the amount was supposed to be taken from three separate sessions! THREE! For a 6 lb anaemic baby it could have been tragic. Good grief, I am so glad my mommy instincts caused me to walk him out of that lab and never look back. We drove home and went to the urgent care here in our small town.

Since that day, only the specialists in Minneapolis and our local small town nurse are allowed to draw from him. She called me the day after his first big draw post diagnosis and asked questions about his condition. The next time we went in she was ready.

1) She splints his good arm.
2) heat pack
3) I am to make sure he is fully hydrated
4) 10 am works best for him
5) he lays down on a cot- not sitting, not held in my arms

We do this every time he needs the labs. Lily (8) and Holly (5) are always there. We have tried a couple different approaches to how they behave and interact in the room and this is what works for us:

1) They bring their baby dolls in their slings.
2) They talk to their dolls about getting blood drawn.
3) Holly sings to Isaac while Lily hold his hand and strokes his head. I keep his legs and torso secure and make eye contact with him.

Today was different than any of the other times though. 

Today, Isaac was old enough to understand this was something he participates in- not just subjected to. It has been 9 months since his last one. Blood labs and draws on babies are hard for everyone, usually he screams and thrashes. Not this time. He only cried at the very end, told/signed to us he was being brave like a bear. Aw.

Part of me is sad that this is part of his normal, our normal, so much that he understands that if he participates it goes better for him. I am also so proud of my brave boy.

We are extremely lucky that so far our nutrition approach has been working. His levels slowly improved and are in the normal range. Iron got significantly better once he started eating solids and took a preference to meat. Ha. His growth hormone remains low normal, and at first the docs were pushy about growth hormone injections. I have written about how that went down before. He will not be taking those, thank you. Being short is not a medical condition. If the low normal ever affects his internal organs or operating systems malfunction because of it, then, and only then, will we consider it.
Calcium and vitamin D are the two other big ones we check on. His D hovers around 20. Pre 2010 that was considered good. Now 40 is the aim. I don't buy that though. The research isn't substantiated enough for me yet and Isaac is in excellent health. We do give him cod liver oil and extra mushrooms in the winter and greyer days, now we cook more with lard too (also a good source of D IF the animals are raised on pasture). We don't use sunscreen and he gets playtime outside on sunny days, every day that is sunny. So far, so good.

It is pretty amazing how healthy he is though. I know that the docs bristled at my hippie, wait and see, lets heal him with food approach.....at first. Now though, sometimes I get calls from them asking about sources and brands and they send med students in to chat with me. Really our whole family has benefited from my hyper vigilance on nutrition, though I was headed that direction before Isaac was born, he has driven home for us how very important and effective whole health nutrition can be. Sure his labs were slow to improve, but they did.

Still, today was a turning point. He is growing up.