Day +77 - Headed into the home stretch...

Lyla has been doing great the past few weeks and we have a game plan for going home! The plan is for us to leave in just a few weeks and a few days before Lyla's 100th day since she is doing so well!

Lyla has surgery tomorrow to have her Hickman line taken out and a port put back in. She's keeping a port since we will be continuing weekly enzyme infusions back in phoenix. A port is a lot less maintenance. We are excited to be able to give Lyla a normal bath again without her whole chest being covered in plastic wrap and tape! She's also having a spine MRI tomorrow. The doctors want to assess the severity of the kyphosis, or sharp curve in her spine, and track how it develops over the coming years. The curve looks pretty bad, but so far it hasn't stopped Lyla from doing anything. We really hope it doesn't cause any major problems in the future. Because the MRI takes so long, we will have a long 4-5 hours in the surgery waiting room while Lyla is under. Although surgery is no big deal to us now (this is Lyla's 3rd one in 5 months) it's still a little nerve racking and so sad to hand her off and watch the big surgery doors close :( fingers crossed it all goes well. We will send an update tomorrow when she's out.

In other news, Lyla's story has been shared in the U.K. by a cord blood storage company. They used the summary from Lyla's website, kindly written by Stacey Kilb, and interviewed myself. Our wish is for Lyla's story to give hope to other families and inspire people to learn more about cord blood donation.
https://www.smartcells.com/blog/2016/10/07/little-lyla-story/
And a big thank you to Lyla's auntie Laura-Jane for making the story happen! Laura-Jane is involved in implementing cord blood donation in the hospital she works at in Leeds, England and is using Lyla's story to help teach mid-wives and doctors about the benefits of cord blood!

We were also invited to the Minneapolis Ronald McDonald Gala on Saturday night! It was an amazing and very emotional event. We were able to meet some of the thousands of donors and volunteers who support the RMH charities which has given us a home, meals, and support group for the last 3 months. In just one night the event raised over $450,000. It is truly an amazing organization full of the kindest people and we are so thankful to everyone here and those who have donated to RMH charities!