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Lyla Edgington - Journal

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Posted 2016-05-21T23:09:15Z

Donor found

We received amazing news yesterday . Minissota have found an umbilical cord donor for Lyla's transplant. It is a perfect 6 out of 6 match which is a huge huge relief . All going well, Lyla is set for her transplant in mid July . [...]

Posted 2016-05-08T02:05:07Z

Lyla has left the building...

After a long week in the wonderful university of Minnesota children's hospital Lyla, Helen and I are heading back to phoenix. All the doctors and nurses were amazing and Lyla was fascinated by all of them. Lyla successfully had a blood transfusion on Thursday and on Friday she went under and had ear tubes fitted along with an iv port and feeding tubes. She had her first dose of enzyme treatment today and was feeling her normal self by this afternoon. The next step is to sit tight  back home and wait to find a doner, which could be as quick as 2 weeks. Lyla will be having weekly enzyme therapy at Phoenix children's hospital    For hopefully 8 weeks before heading back to Minnesota . Lyla gives you all lots of kisses for caring about her x x x x x x x x[...]

Posted 2016-05-06T19:54:16Z

Surgery

GREAT NEWS

lyla has just come out of surgery and doing great. She had 4 procedures done so she is going to be a tired girl today. 1 of the surgeons has teenage girls so instead of doing the incision high on her chest where it is normally done he did it on her side at the bra line so it won't be visible when she wears her prom dress. What a sweet guy. [...]

Posted 2016-05-06T03:08:07Z

Ready for operations tomorrow...

Lyla was admitted into the hospital this afternoon to get ready for her pre-transplant operations tomorrow.  She just received a blood transfusion to get her hemoglobin levels up and she's now starting on Milrinone which will also help her heart not have to work so hard.  Going into any operation with heart problems is concerning but we feel confident that the medicine and extra blood will help a lot. [...]