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Lyla Edgington - Journal

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Posted 2017-04-05T04:36:05Z

Day 253 - One year ago....

Wow, where has the time gone again!... The past few months have been so much better and we are happy to report that Lyla's anti-body issue is gone and she is in the final stages of transplant recovery!  The last month has been amazing with Lyla being completely off of steroids.  It's so nice to have our little girl back to her happy and active self! Lyla still isn't walking on her own but she is really close and her development is quickly getting back on track.  We are also so lucky to have found an amazing nanny who has helped give us a break and make life alot easier.[...]

Posted 2016-11-07T03:51:46Z

Day over 100 - Smiling again

Lyla's 100th day was last week but wasn't as joyous of an occasion as we hoped for. After 5 days of Lyla being extremely upset and not sleeping, she was finally admitted to the hospital on Friday. The doctors and us went in circles trying to figure out what was wrong...She had a short brain MRI which did show some enlargement in her ventricles but not enough to warrant the extreme discomfort she was in. She had constipation and a bulging belly button from eating so much on steroids, but no hernia. Her crying and lack of sleep was well above the level expected from steroids. Even her first two teeth to pop up couldn't have caused that much pain. I spent hours describing over and over again exactly how Lyla was behaving and assessing every move she made like waking up crying and tapping her head with her thumb. The puzzle was finally solved by one of several doctors involved....Lyla had a reaction to the IVIG transfusion she received last Monday. The transfusion is donor antibodies used to tell her cells to stop creating the bad antibodies causing her platelet levels to drop. Because the transfusion is a mix of lots of donors, reactions are more common and cause migraine symptoms that can last for several days. So our poor little girl was in so much pain from having terrible headaches and the lack of sleep caused a vicious circle of constant discomfort. Luckily she was released from the hospital yesterday because she had a good night of sleep and the pain seems to be completely gone now. She has been her happy, charming self today and spent all day playing with her Nanna visiting from England :) Despite the horrible week, the good news is the steroids and transfusion are working really well! Once again the doctors are amazed by Lyla - in less that 10 days her platelets have increased from 30k to 200k!! We are now weaning her off steroids this week and hoping her platelets stay the same so we can go home soon![...]

Posted 2016-10-29T03:39:49Z

Off to a good start!

Lyla's been on steroids for three days so far and although her extreme crankiness at times is enough to make us go crazy, we will put up with it forever if we have to because it's working! Her platelets have already responded and increased to 63k!!! [...]

Posted 2016-10-25T04:35:32Z

Day +93 - Too good to be true

Earlier today we received the seal of approval to head home tomorrow, almost a week early from Lyla's big +100 mark. Unfortunately our excitement was shot down a few hours later and it looks like we will be staying at least another two weeks :( Lyla's final blood draw showed her platelets dropped significantly in the last 4 days. We even went back in to check it wasn't a bad sample but it was confirmed again. They have dropped to levels just after transplant - going from over 200k a week ago, too 100k 4 days ago and now 30k. Because all her other blood levels are good, it's likely an immunity issue - her now mature cells are creating antibodies to stop the platelets from functioning properly. This is obviously very concerning but her head doctor is confident it can be fixed with steroids. Lyla can stay out of the hospital but her levels will require close monitoring (lower than 10k can be life threatening). And, the steroids will weaken her immune system even more so going home is not an option. And unfortunately it's going to be a slow process. So.....we are settling back in for at least another two weeks. Fingers crossed Lyla's cells react to the steroids and it doesn't become a major issue.[...]