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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.

Lyla's drugs are being weaned, including CSA which is the key anti-rejection drug for her transplant.  So far her counts are holding strong expect for a minor dip in Hemoglobin levels the last few weeks.  The doctors don't seem too concerned yet and will keep an eye on it.  If all goes well, Lyla will be off CSA in about a month and as her immune system continues to recover over the next few months, we will be able to start taking her out in public places.  Since Lyla won't wear a mask and and it's flu season, we've kept her confined to home and walks around the neighborhood. It's going on 8 months of isolation so we are all feeling a little cooped up and ready to be a normal family again.....It's paid off though because she hasn't had a single sniffle and neither have Steve or I. 

Today has also been a bittersweet day for us - one year ago Lyla was diagnosed with MPS Type I.  I wrote this message to my family earlier today and would like to share with everyone who has touched our lives in the past year...

It's been exactly a year that we found out about Lyla's disease. I will never forget that dreaded phone call, it was the worst moment of my life. I felt like our world had fallen apart and I was so so scared.

The love and support from all of you in those first few days and over the last year has helped so much. Thank you from the bottom of my heart!
This was a quote I found the day after her diagnosis and it stuck with helped me comprehend and find the strength I needed to get through whatever was headed our way....
"We must let go of the life we had planned, so as to accept the one that is waiting for us" - Joseph Campbell

We are so lucky that Lyla is healthy and going to live an amazing life! ​​​​​​​​Without the doctors, cord blood donor, and the support from each of you, this past year would have been so much harder. Thank you a million times!!! :)

PS - the Ronald McDonald House photo was discovered at a bar in Minneapolis - look who is the poster guy and girl of RMH Minnesota!! :)



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Comments (9)

  • Lisa Colville
    Lisa Colville

    I want you to know how much we miss her at La petite Academy. There isn't a day that goes by we don't think of her. We hope one day we can see her again to give her a hug. Thank you for sharing how she is doing.

    3 years ago · Reply
  • Christine Tibbott
    Christine Tibbott

    Wonderful to get such positive news. Think of you all the time and Laura-Jane so good at giving me updates. Hope to see you one day this side of the pond. Lyla looks adorable in her hat. All our love Christine

    3 years ago · Reply
  • Nic

    Amazing news! You two have one tough and beautiful little girl there 😍 xx

    3 years ago · Reply
  • Julie Purschke
    Julie Purschke

    We are so happy to hear how well Lyla is doing and that her health has been good overall!! Huge kudos to you as her parents who have sacrificed so much and worked so hard to keep her safe and on the road to recovery! It was great to get the update as we think of our RMH friends often!! Love the pic found at a MN bar...hilarious and adorable! Nicholas is hanging in but should have taken a lesson from Lyla 😉As he has had some setbacks...his weakened immune system has had to fight off lots of viruses, it's been a slow and challenging road as you know! Thinking of you and your sweet family often and will pray things will continue to go in the right direction for Lyla. Can't wait for you all to be able to go out to enjoy the world as a family! 💕God bless!!

    3 years ago · Reply
  • Janice Gould
    Janice Gould

    So very happy to hear this good news. Cannot imagine how you all coped with the stress of this past year. It appears all our prayers are being answered. Look forward to seeing Lyla's beautiful smile in person soon.

    3 years ago · Reply
  • Trudy Citovic
    Trudy Citovic

    Wonderful news! So many prayers answered and more to come! Can't wait to meet Lyla in person one day soon when she can have visitors!

    3 years ago · Reply
  • Rita saupin
    Rita saupin

    Elated, tearful proud and so relieved that Lyla's little body has coped with the trauma of the last year. Both you Steve and Helen can look forward knowing the future has so much that you can enjoy together as a family. I am so inspired by your strength, patience and resilience. Love you all. XXX

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

    I have been thinking about you and your baby girl so much lately! I am SO happy that things are going so well! Here's to Lyla, her parents, her doctors, her nanny, her family and her donor! xoxoxox

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

    PS: I LOVE the photo and I LOVE where it was spotted! ;)

    3 years ago · Reply