A horse named Lucky

Amelia was just ordered to go home! We are grateful for the short stay and thankful that Amelia has done so well. Her name means something like "hard worker" and "one who is steadfast." Indeed, she has shown us tremendous resiliency.

Mostly, we are thankful for how close Christ is to us- that whatever happened, we knew He was present with us. Which brings me to a short story as they say. Yesterday, in the pre-op room, we were having a debate with Amelia on the proper name for her new stuffed horse. We landed on the name, "Lucky." There is much irony in the name "Lucky"- because on the one hand, many would say that because Amelia has endured much in her short life and is still strong- is just a strike of fate. Regarding the surgery, the surgeon "happened" to find a pocket in her vertebrae to thread the catheter into spine and connect it to the pump. He had expected to move a "bunch" of vertebrae but he happened to find the "one" vertebrae to open. He'd say it was a strike of luck, but we know that countless friends and family have been praying for two years about this surgery. Moreover, many were interceding to Jesus on Amelia's behalf all day yesterday. That this surgery went smoothly was directly influenced by God, who made the heavens and the earth . . . who is not only able to move mountains, but is so gracious to move even the smallest bit of creation . . . even a vertebrae.

God never promised a successful surgery- indeed, many kids face intense suffering with little relief. Jen, Amelia and I were all anxious about the surgery. We often don't have an unwaivering faith. All we were promised is that Jesus, who became intensely personal when He came to earth, would be intensely present with us no matter what cards we've been dealt. He became present in the people who showed up at our house to mow the lawn, watch the kids, fill the fridge, sit with us and to listen to us.

Thanks for the prayers and kind words,

Steve for the Allens

Pump it up!

Amelia is doing great. We are settling into the room (a regular hospital room, YEA!) and letting her rest for the most part. She has two two inch incisions, on on her right abdomen and one on her upper middle back. Dr. P was able to get the catheter in higher than he thought he might. This is good because it should allow her upper and lower body to be relaxed.  He said the surgery went better than he expected. We are so thankful it is almost beyond words. Thanks for all of your thoughts and prayers.

It's in!

The catheter is in! Surgery successful thus far! She is in recovery now. May go to ICU if she needs to or to the regular floor. 

Surgery update

Amelia went in to surgery around 12:30. It took a while to get breathing tube in and IV started. Got an update at 2:00 that they are still trying to place the tube for the medicine in her spine. If you remember, the catheter not going in her spine was the problem that prevented this procedure from working two years ago. Pray that it would go in! 

Wed May 29th

Forgot to put the surgery date in the last post! Surgery is at 12:30. Found out today that they have 3 hours blocked for her, Dr P originally said it could take way more time than that. I take that as a good sign, though we won't know till we talk to him on Wed. A typical baclofen pump takes about an hour to do. 

Has some pre-op tests today (MRI and echocardiogram), those were the last things before surgery. We are on our way out of town for a few days. Will see friends, relax and have some family time. We are really looking forward to it. 

Thanks for your prayers!

Jen

Baclofen Pump redux

Hello Friends,

Wanted to post a quick update. Obviously a lot has happened since I last wrote...Amelia is 6 and in Kindergarten, she LOVES school which is such a blessing for us. We are so thankful for all her teachers and helpers. She has an amazing team who work hard to engage with her and love her.  Amelia has been so happy lately smiling and even laughing. She has been communicating more (more on how she does that later) and showing us her spunky and opinionated personality. WE LOVE IT!!

The main reason for this update is to seek your prayers for Amelia's upcoming surgery. We are going to try to do the baclofen pump again. Dr. Puccoini has a plan to overcome the issues we came across last time and he is confident it will work. We are scared. Scarred that it won't work, that there will be surgery complications (she will be under anesthesia a long time), that there will be post-op complications, and most of all that we will be disappointed again. We have agonized over this decision for two years and don't see any other options. The hope is that she will have less pain and more function of her extremities. That she will be more engaged and alert. We are confident that this is the right decision.

God has been gracious (as always), he has brought many friends to pray with us and patiently listen to our fears. He has surrounded us with his love and peace (even if it is only in moments). At my most difficult time a couple of weeks ago I sensed God reminding me that it will be OK. When I say it will be OK I am not sure what means exactly but I do know the following: He has all of us in his loving hand, he is my rock, my fortress, my shield (all in Psalm 18), he holds all our tears in his bottle (Psalm 56), he sees us and understands and makes provisions for us (Genesis 16), He is acquainted with with grief (Isaiah 53) and the list goes on. I am not confident that the surgery will happen without difficulty or that Amelia will be healed by it but I am confident in the God who is here.

Please plead to the God who is here on Amelia's behalf and pray that we would be strong and courageous so she will not sense our fear.

All is grace,
Jen (for all of us)