Mia & I woke up extra early and head to POTC by 7:00 am. Mia was extra brave at getting her poke, but it did take 2 times which made her sad. Through her tears, she said, 'I'm trying to be brave...' - oh I will never forget that. Bless her heart, and Miss Christine's too!
After the IV was all settled...Mia picked out a fun toy, actually a rug, that came with a car to drive on. FUN!
Getting all situated...
Wow, blood transfusion #45, I can't believe it. On a positive note, her ferritin level is down! YEA! In February it was above 2,000 - which is very bad- and now it's going down...today when we tested her ferritin it was 1758 - which is better but we would like to see it under 1,000. Thanks to the exjade we dissolve in OJ before bed every night and the 4 hour dessferal she gets after every transfusion.
The IV in the hand worked really good today...although getting it in the hand was the hard part. She's so used to her arm, but it worked out better this way. Here is a video of her taking the tape off and pulling out her own IV.
Good job Mia...you did it.
After the IV was all settled...Mia picked out a fun toy, actually a rug, that came with a car to drive on. FUN!
Getting all situated...
Wow, blood transfusion #45, I can't believe it. On a positive note, her ferritin level is down! YEA! In February it was above 2,000 - which is very bad- and now it's going down...today when we tested her ferritin it was 1758 - which is better but we would like to see it under 1,000. Thanks to the exjade we dissolve in OJ before bed every night and the 4 hour dessferal she gets after every transfusion.
The IV in the hand worked really good today...although getting it in the hand was the hard part. She's so used to her arm, but it worked out better this way. Here is a video of her taking the tape off and pulling out her own IV.
Good job Mia...you did it.
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Adventures in Radiology
Mia's Endocrinologlist ordered a bone age test but I lost the paper work, so we just did it at the hospital since we were there. It's just an x-ray of her hand to have as a baseline to look back on.
Mia's Endocrinologlist ordered a bone age test but I lost the paper work, so we just did it at the hospital since we were there. It's just an x-ray of her hand to have as a baseline to look back on.
4 comments:
What a brave little girl, the barbie pack looks like fun though! Hope all is well and Happy Mother's Day! :)
Wow 45 transfusions- she is one brave girl, and it would also see you may need an extra room at you house for all the goodies she gets :)
Mia is so brave! And so is her Mommy. She looks so much like you! Hopefully you guys will have a relaxing and restful weekend. Happy Mother's Day!
I could only imagine how she has overcome so many obstacles at a young age. She is a very brave girl. You and Matt are raising her well. Keep up the good work. Glad that count is lower..
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