Here we go...

on Thursday, September 9

Hello Family and Friends- Dana and I wanted to update you on Josiah because some important things are happening in the next few weeks. His surgery is scheduled for the first week of November, only 8 short weeks away. We recently met again with our doctor to ask all of our questions and have some focused time really understanding what's going on with Josiah's back and what the upcoming surgery will do for him.

Our appointment with Dr. d'Amato, Josiah's doctor at Shriners, was a true gift of time! We got to spend an hour with him and ask all of our questions. He wasn't rushed, he was incredibly present- took us into his office so we could view all of Josiah's pictures (MRI, cat scan, and 3-D images) and talk. The 3-D cat scan image was amazing and we were able to see first hand exactly what Josiah's spine looks like and all the issues facing him. It was crystal clear from the 3-D image that it is a miracle that his back has not already collapsed- God has definitely been protecting him daily. We walked away having a real peace knowing we should have this surgery done to protect Josiah's back & his ability to walk.

Here's a recap of what we learned and what is next:
The surgery is a spinal bone fusion w/out instrumention. They will take bone from the top of his hip and graft it on to the part of his spine and vertebrae that needs to be stabilized- his lower lumbar/sacrum area (below his waist so it will not effect his flexibility- praise God!). The whole goal of this surgery is to stabilize his spine so that he will be able to grow and develop safely and maintain his ability to walk. Currently, his spine is not stable, it regularly shifts around causing pain, muscle spasms and there is risk to his nerve cord if his spine collapsed- he could lose bladder function and his mobility.

This intervention is the first and most important- they can't address anything else in his spine until they get it stable. It is also the most conservative approach - they are not removing any discs. They are packing bone on either side of his spine - kind of like creating two "bone rods"-one on each side to provide strength & stability to his spine so that it will no longer move around causing slippage and pain (he regularly has pain from the movement - this morning he was crying and asking me to "kiss it, make it better" and there was nothing I could do, heart wrenching as a parent). Other methods are much more aggressive and require instrumentation and screws, which at this young age increase the risk of failure and long term complications.

Here's the practical info:
Surgery will be 4-6 hours, he will be in the hospital for 4-6 days, when we come home he will be in a cast from his chest to the top of his knees (pantaloon cast). He will be casted laying down flat which will make him completely immobile & dependent on us to be carried or pushed in his flat-backed wheel chair. He will be in the cast for 3-6 months depending on how he heals. Following the removal of the cast, he will be in full braces for an undetermined amount of time (6-18 months but he will be able to walk in the braces and take them off at bedtime/bath), until the doctor is satisfied that the fusion has been successful and that there is no risk of compromising it. The surgery is planned for the first week of November - they will call us in the next couple weeks with an exact date & time.

At our appointment the doctor also helped us understand Josiah's back/spine issues and what he is facing over his lifetime. At some point they will need to address the deformed part of his spine because in it's current state it will not support an adolescent/adult-sized upper body. There is also the pressure and narrowing of his spinal column right at his lumbar sacriatic joint that will need to be decompressed. He also has the cyst in his upper spine and his spinal cord is tethered. All of these things will need to be dealt with at some point but they don't know when and they cannot address any of them now because to do so would make his back unstable. The doctor said Josiah could be the kind of kid who has 2-3 surgeries over his lifetime or 8-9. It entirely depends on how he develops and how his spine grows. He did say that Josiah's back will never be able to handle any kind of impact sports- only things like swimming & golf (he sure was born in the right family because we have access to both of those things- Dara participates in both already and actually placed 5th in the girls Jr. Golf championship this summer- go Dara!). They will be keeping close tabs on his growth and he will obviously have further tests & scans over the next year post-surgery to confirm the success of the bone graft, observe how his back is developing and see what needs to be addressed next.

I know this is a lot to try and understand -thank you for taking the time to read through all these details. It's a lot for us to take in too. We are now on an 8 week countdown to his surgery and are spending our time preparing for how that is going to change our daily lives for the next year. We have had to grieve what we thought Josiah's life would look like and realize that he is still going to have the best life, full of amazing opportunities and blessings but it's just going to look different than we thought. We are trying to be very present during these weeks before surgery- enjoying watching Josiah run around like a busy 2-1/2 year old- raiding the tupperware drawer, playing trucks and all things automotive (this boy LOVES cars, trucks, monster trucks, school buses, police cars, ambulance, fire trucks, construction vehicles, trains, etc.), playing outside on his playset or going to the park, swimming, and just being together as a family. Dana met with Dara's teacher at school so we can work with her to support & care for Dara during this time as well. Dana also is hoping in the next couple days to talk with another family from Shriner's Hospital who has had a child under five in a pantaloon cast to get some tips & tricks as she cares for Josiah at home.

While this surgery is not exciting news, Dana and I both walked away from our appointment at Shriners with peace and confidence that our doctor has Josiah's best interest in mind and we are thankful for his cautious approach. We would appreciate your continued prayers for safety for Josiah between now and the surgery and for us as a family as we prepare for this time. We truly sense the Lord's love all around us even though this is a tough situation, we feel Him with us each step of the way. He has been SO faithful already in tons of details on this journey with Josiah. I'm so thankful for Jesus and His presence in our family every day! We will post again as soon as we know the exact date of the surgery. Thanks for your continued support and prayers for us, they are GREATLY appreciated!
Love and blessings,
Shawn, Dana, Dara and Josiah.