Done with MRI

Amelia is done with the MRI. We had hopped to go home tonight but she is REALLY sleepy and hasn't eaten any food yet, so we will stay tonight. In the morning we should hear what the MRI showed.

Disappointment

Family Picture at Amelia's Big Show!*

I am seriously grieving the fact that Amelia will not leave the hospital with a Baclofen pump. I had really hoped that this pump would give her some relief from her everyday suffering, would make her happier and more comfortable. Thankfully, our ultimate hope is not in a pump, it is in Jesus, the Strong, Sure One.

1 Peter says: Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a LIVING HOPE through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who by God's power are being guarded through faith for a salvation ready to be revealed in the last time. In THIS you rejoice. We REJOICE in Christ, through our suffering, following in his suffering.

We have had our "share"of suffering, according to most people's standards. I do not pretend to know why we suffer, there are many layers to suffering. I do know is painful and has brought a lot of grief. Real grief, the kind that I can't ignore or fix or buy my way out of. I have to sit in my grief and in it cling to the One who sits at the right hand of God. The one who wept when his friend Lazarus died, who begged for God to allow a different way for our salvation than his own terrible death. The One who knew the pain of people misunderstanding him and rejecting him, going hungry, being beaten, and dying the worst death imaginable. He KNOWS my pain.

So how do I go on? How do I wake up in the morning, get dressed and live life? Besides lots of strong coffee, I know that this suffering is not the end of the story. Amelia's best days were not the first four months of her life, when all seemed "normal". Her best days are yet to come, not through the latest medical innovations but through Christ. Her best day will be when she is dancing with Jesus.

I also try to see things. This is something that will have to be explained in more depth later (or you can read the book One Thousand Gifts), but basically I try to have child like vision. To look at the details, like colors, textures, the way grass blows in the wind, the smile or frown on a face. It sounds hokey but really looking at things and seeing them as gifts from God has helped me to not just go through the motions of life but to really live and thrive in this broken world.

Enough of the mini-sermon...Right now Amelia is resting and recovering. She was pretty uncomfortable last night and didn't go to sleep till around 2ish (I was so tired I don't really remember). She is pretty groggy, probably from the pain medicine. The MRI is scheduled for 3:30 this afternoon.

All is grace-
Jen

The Big Show Program

The Stage

Singing If all the Raindrops and It's Raining It's Pouring

Singing Dog In School

Can't remember what song this was.

Steve and Miles (he loves that winking big smile)!

The group: Bob and Kim Coleman, our family and Chrissy.

*Amelia's preschool teacher and paras put together a spring program every year they call The Big Show!

Out of Surgery

Amelia is out of surgery and stable. Unfortunately they were not able to put the pump in. We are really disappointed, but are so glad that she is doing well.

Dr. Puccioni (the neurosurgeon) was not able to thread the catheter up Amelia's spine. He isn't sure exactly why (there are several possible answers) but he tried everything short of putting a large incision down her back. We hope to get an MRI of her spine tomorrow, then we will be able to see what the problem is and make a plan.

We have been praying and considering whether to do this surgery or not for a long time. It is really the only good option for controlling her muscle tightness at this point. Please pray that we would get answers with the MRI and that we would make the best decision for Amelia. We have always only wanted her to be happy and comfortable.

Here are some pictures from the American Cancer Society Cancer Walk in Valentine this spring. We did the survivor walk for the first time. It was really great to hear people's stories and to remember that Amelia is a SURVIVOR of a very aggressive and difficult to cure cancer.

Amelia's Surgery

Amelia and Steve in the Aquarium at the Henry Doorly Zoo

Our little monkey Miles.

Good Morning. A handful of you know that Amelia is scheduled to have surgery today at 2:30p. For those who do not- Amelia will be getting a Baclofen pump* inserted into her abdomen. The pump will deliver the medication, Baclofen, to treat Amelia's tightness of muscles.

As always, there are risks with surgery-- potential infections, Amelia responding poorly to Anesthesia etc. We chose to do this surgery because it has high the potential to give Amelia a better quality of life. The neurosurgeon said that in the first few weeks most kids with Amelia's degree of tightness will be MUCH happier and sleep better. It will also make getting Amelia dressed and positioned easier for us. Many people who get the pump also have improved function and cognition. We hope and pray for this benefit also.

Please pray for no complications and that her post-op pain would be controlled well. Also pray for Miles who is with Jen's dad and step-mom in Valentine. He is having a great time and getting spoiled rotten.

Will update you when we are able. Surgery should last around an hour.

Steve and Jen

*The link above is a good general explanation of the pump. If you google "Baclofen pump" you will see pictures that look bad. The pump is a lot smaller but will be noticeable in Amelia's belly. Her Dr. said it is about the size of a hockey puck but thinner.