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 me....it 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!! :)