Friday, February 5, 2010

Our St. Louis Trip - Day 32, 33, 34, & 35

Where to start? I guess by saying we have answers and all-in-all the hospital stay wasn't to bad. Dillion and I got to spend lots of quality time together. I saw my old nurses and made some new friends. Not to bad at all.

The diagnoses was pretty much what I was expecting. Dillion does have X-linked (aka hereditary) hypophostaphtemic rickets. I have a 50/50 chance of passing it on to any of my children, guess he got the short end of that stick. I am glad to know that I didn't cause this by nursing him. The Shriner's doctors said my milk should be the same as anyone else's.  On the downside he will have to deal with this the rest of his life. Dillion is on 2 different medicines until he stops growing around age 16. We will go back to St. Louis every year and stay for a week. Then every 3 months we will send out samples of Dillion's bodily fluids to measure how his body is processing the medicines. The bright side is they no longer put braces on the children's legs like I had. Also they are working on a shot that temporarily cures the rickets and causes their bodies to correctly process vitamin D. It has worked in lab mice and is now being tested on humans. They said soon I may be asked to try it myself and then on Dillion. We will cross that bridge when we get to it.  

Here are a couple memorable things that haven't changed since I was a kid. They still put the patients on special research diets to measure every bit that goes in their mouths. You can see him holding his diet ticket above. And below is baby jail. The crib he slept in is the same one I slept in 25 years ago! And once it is closed up there is no getting out! The rails meet up with plastic and he is nice and safe...

He loved the wagon rides! We couldn't walk down the hall without someone stopping us to talk to the cute baby.

Finally our new friends. This is one amazing mom and child combo. The little girl was born at 24 weeks and 1lb even. Yet she is here today and has a fierce little spirit! Her mom is just like me, she has rickets and Hyperparathyroidism. Now that is rare. I believe she said 5-10 people on Earth. It was so good to meet her. Made me feel almost normal.

Thank you to everyone who sent cards, texts and thoughts this week. We appreciate you all!

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