My dream has come true. Rylie is eating normal food! I'm really impressed with how quickly she took to eating real food. Today she had grilled cheese, corn, peas, toast, and chicken! I'm so excited! It feels a little strange though, because I've been fighting her on food for so long. Now I just keep making food and she eats it. I'm amazed!
Wednesday, May 27, 2009
Medical stuff
Rylie's enzyme level came back normal (36.5nmol. for those that understand--I don't really), so we are continuing to rejoice in this good news. We also found out that Rylie's hypothyroidism is probably not caused by the chemo from the transplant after all. Her body is producing an antibody to her thyroid, so she is essentially producing a substance to kill her thyroid. The endocrinologist believes she developed this condition from her donor. The hypothyrodism is called Hashimoto Disease. It is an autoimmune disease, so Rylie has a slightly higher risk of developing other autoimmune diseases in the future. This has reminded me to not let up on praying for Rylie and her health. I know that God has Rylie in His hands.
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4 comments:
So sorry to hear the news about the autoimmune issues. Hopefully you can control this very easy and there will be no worries. We will keep praying for Rylie. Wyatt says to give her a big hug for him!
Todd, Nicole, and Wyatt
Wonderful news of the normal enzyme level! Not sure that those results are going to come back for us because there's a chance that our sample got botched. :(
Sorry to hear about the Hashimoto's. I have a friend who was recently diagnosed with this as well, maybe I could put you in touch with her?
Hooray for T-cells, enzyme production, and eating "real" food (yes,"it's what's for dinner"!). And, for feeling encouraged, after thinking "bummer!" but googling
"Hashimoto's disease", to learn that someone has identified these autoimmune issues and developed some helpful treatments. love&prayers L&B
Basically those of us who do not have transplants and do not make the enzyme have a very low amount of the a-l-iduronidase which as you know is what we don't produce. I for instance make '0' enzyme while some make a very small percent. So 35% is a really good amount to have!! :) Ry will always be in my prayers and I hope she con'ts to have no effects from the thyroid. You might look into supplements. I take some of these in addition to synthroid.
Erica www.caringbridge.org/wi/ericathiel
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