I spoke with Kristi, our enzyme replacement coordinator this past week, and a tentative plan for Evie's treatment has been set! Praise God!
If all documents are signed, sealed, and delivered, we will do our baseline/screening visit for Evie on Thursday. You can pray that God will grant me the mental capacity to understand all of the numbers, measurements, dates and scheduling for Evie's treatment before we sign on the dotted line. Then she will go into the hospital Monday the 23rd for her initial IV dose of medication, and we may only have to stay for 2 or 3 days if all goes well! This means home for Thanksgiving, back Friday for some labs, and we will start her injections (shots) the following Monday. She will have these 3 times a week for the next 6 months, and tests scattered throughout the weeks to monitor her results. I am bursting with gratitude for the people who have worked so hard to get this started.
On a deeper note (scary, I know!)... I have had one of those days... Looking back on how God has touched my heart in the past few weeks.
It started at women's Bible study two Thursdays ago, when we were reading about how Jesus told Peter that he, Peter, would be crucified.
Then this past week we decided to take the kids to Coco Key when John got off of work. We had to hurry and get the girls out the door because you can only get in free before 5pm! So we hurriedly drove across town only to find out that it was a "black out day" and we couldn't get in. I was so frustrated! When we left we took 72nd street to Center to head west and get something to eat. As we were driving down Center street tears started streaming down my face. I hadn't driven down that part of Center street since I was pregnant with Evie... and we had visited the cemetary on 50th and Center to get familiar with where we would lay her to rest.
Jesus had told Peter how he would die. God knew before he sent Jesus to this earth, how Jesus would die. And in a distant comparison, when I was pregnant, we were told how Evie would die.
When people ask me how we survived the last few months of our pregnancy, I can only describe it as "one day at a time." The truth is, I KNOW death is not the end of Evie's life. We went to that cemetary half a dozen times to get familiar with Evie's doorway to the place God is preparing for her. To get comfortable with the symbolic place where we could go "visit" her. Where we could sit by her grave and weep because of how much we love and miss her. Was it painful? YES. Is it hard to consider even now??? It rips my heart out. But Jesus said "Do not let your hearts be troubled. Trust in God; trust also in me. In my Father's house are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you. And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am." God has not only prepared a place for Evie, but thankfully also for me, her mom, so I can hug, talk to, and walk the streets of Heaven with her for all of eternity! I hold firm to that truth, thank you Lord!
Now that we have had Evie home for 8 weeks, I am sitting with a towel... not a kleenex... as I did so many times when I was pregnant, thinking about that time when we thought we were going to lose her. And now instead of dropping to my knees and praying for a miracle, I usually drop face down on the floor thanking God for Evie, and for the 8 weeks of joy she has brought to our lives. We will all obviously face death someday. I am so glad I can face it knowing I will be reunited with my children in Heaven, and be incredibly thankful for the time we have together now.
Our dear friend and Pastor is doing a 4 week sermon series titled "It Would Take a Miracle." After what we have experienced the past several months, I just can't wait. If you are looking to find a church, or a place to hear about God's love for you, I personally invite you to come. The series is starting in December (Dec 6th) at Brookside Church. John, Lyla, I, and our BEAUTIFUL miracle will be there (: Make sure you come say hi!
Love you friends, I'll be back when we have more news and let you know exactly when Evie's treatment starts so you can be praying for her.
Bye for now!