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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!

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Comments (20)

  • Crystal Howard
    Crystal Howard

    Love you guys. Your the strongest people I know. Praying for you all and hoping you can all be in your own beds soon. Xo

    4 years ago · Reply
  • Brad & Marissa Cardon
    Brad & Marissa Cardon

    Thank you for all the updates. Our thoughts and prayers are always with you three of you. Layla's smile is infectious, and we are glad that it is back. Stay strong and smile! Brad, Marissa & Landry

    4 years ago · Reply
  • Amanda Geismann
    Amanda Geismann

    I'm so sorry to hear she was in such discomfort, but glad she's doing better now! That smiling girl is strong beyond words. Love you guys and continue to send prayers that you get to go home soon!

    4 years ago · Reply
  • Benny Joseph
    Benny Joseph

    So happy to hear that she is feeling much better. You guys are all so strong. We are hoping that you all will be home soon. Benny & Jamie & Bodhi

    4 years ago · Reply
  • Daniel Ogunshakin
    Daniel Ogunshakin

    Great to hear! She's going to make the best flower girl ever! Go Lyla! X

    4 years ago · Reply
  • Liz Berkenkamp
    Liz Berkenkamp

    Wow! 😍

    4 years ago · Reply
  • Elinore Bisnett
    Elinore Bisnett

    Oh my. That must have been terrible not being able to help her feel better. Well, big sigh of relief that she is back to her happy self. And fingers crossed that her platelets stay high. Love you, and hi to Steve's mother! Aunt Susan

    4 years ago · Reply
  • Kathryn silvet
    Kathryn silvet

    What a week! Glad to hear Lyla has bounced back again and enjoying her time with Nanny. Lots of love to you all xxx

    4 years ago · Reply
  • Alex zold
    Alex zold

    You all continue to amaze us!! Soon you will all be home creating many happy memories and no one deserves it more!!! Love you guys lots xxx

    4 years ago · Reply
  • Hayley D
    Hayley D

    My goodness. What a ride. Good work, mom and dad, for sticking to it and figuring out what was wrong! Thank goodness she is feeling better and getting some sleep! Hoping she's on the uphill track now!

    4 years ago · Reply
  • Anne Knutson
    Anne Knutson

    Oh my, what a smart little girl - tapping her head with her thumb! So happy she is back on track. Love Auntie Anne

    4 years ago · Reply
  • Russell Ekins
    Russell Ekins

    All our thoughts are with you guys. You're all so strong and have everyone's support. Big love to you all

    4 years ago · Reply
  • Russell Ekins
    Russell Ekins

    All our thoughts are with you guys. You're all so strong and have everyone's support. Big love to you all

    4 years ago · Reply
  • Melanie Neal McCubbins
    Melanie Neal McCubbins

    Wow, Helen! What an insane life! All of that had to be so hard! Poor little girl and poor parents. It is the most emotional thing trying to figure out what is wrong with a baby. :( happy that other things are going well. So amazed by your strength. So much love to you all-

    4 years ago · Reply
  • Sharon Colleran
    Sharon Colleran

    So happy to hear the mystery was solved and that dear Lyla is on the mend. Can't wait to see you 3 in Tempe soon!

    4 years ago · Reply
  • Tim Kelsey
    Tim Kelsey

    Hang in there guys. You have a strong little girl there!!!

    4 years ago · Reply
  • Christine Tibbott
    Christine Tibbott

    Wonderful to start the week with a positive update. Lyla always in our thoughts. Here's hoping things just get better and better. What a brave and cheerful little girl she is. Had a gorgeous photo from Aunty LJ yesterday of Lyla. Brilliant to see her so happy again. Lots of love Christine xxxxxxxxx

    4 years ago · Reply
  • Michelle Brasil
    Michelle Brasil

    I'm so happy they were able to figure everything out. I can't imagine dealing with a baby with a migraine! :( But so glad she's back to her smiley self!! And in better spirits to hang out with with Nanna! Thinking about you guys! Love you all so much and hope that you'll be back in Az soon!! Need to plan a visit to see you guys! xoxo

    4 years ago · Reply
  • danielle
    danielle

    Im so glad they figured out what was hurting her. Poor baby! And so glad her numbers have gone back up! Always in our thoughts!

    4 years ago · Reply
  • Caroline Fraser
    Caroline Fraser

    Hi Helen. MY heart breaks reading what you, Steve and little Lyla are going through. You are both amazing parents to your beautiful little girl. I am hoping her condition does improve so that you're able to take her home very soon. Sending you all my love and support Caroline xxx

    4 years ago · Reply