Josiah's posts have moved...

If you're looking for info about Josiah - CLICK HERE - to go to his new Caring Bridge website! All future posts about Josiah will be there - bookmark it for future reference or on the journal page click to receive emails when a new post is up. His surgery is scheduled for Oct 29th - we appreciate your prayers for our family!
Shawn & Dana

Here we go...

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.

Time Out!

Hello Family and Friends,

We titled this post "Time Out" for two reasons 1) Josiah gets time outs about 10 times a day. Yes, he has fully entered the testing two's! And, also 2) because last week we heard from Josiah's doctor at Shriners. He has decided to hold off on doing the surgery for right now and he wants to meet with us, take x-rays of Josiah’s back and examine him again. Our appointment with him will be June 17th in the morning. For now, we are relieved there’s no immediate surgery being scheduled but we still feel the weight of things not being right in Josiah's back yet. He is still at great risk of his back collapsing so Dana keeps close tabs on him and we continue to pray that the Lord would keep him until the time is right to intervene. We have many questions for our doctor and it will be interesting to hear what he’s thinking about Josiah’s situation.

Many of you have been so good to ask how we are doing. First of all, thank you very much for all your concern and prayers. There are certainly days that the reality of what we are facing with Josiah's condition really hits us and we feel overwhelmed with emotion and concern about his future. However, many days we have a peace as we walk through this. Today, in fact, we heard a sermon about God's command to "remember" His works in our lives. So, this evening we spent some time at dinner recounting the ways the Lord has brought answers to prayer in each season of our life. Even Dara chimed in, remembering a time when God healed a burn she got on her finger. The sermon stated that our own testimonies are meant to serve as an encouragement and witness to how God has acted in the past, so we can take courage when we face the giants in our future.

One thing that I call to mind often is that for two and a half years I prayed and asked the Lord for a son. Little did we know then that Dana had a medical condition that was preventing us from getting pregnant. God heard my prayer and after two and a half years God gave us Josiah. One night, I was looking up the meanings of some of the names we were considering for our little guy. This is what I discovered:

Josiah means "God has supported"
Seth means "God has appointed"

When I put those names together, I remember feeling inspired. The two names together captured, in a sense, what I felt like God had done for us. God supported Dana's pregnancy so that Josiah was delivered safely into our arms, and in response to my prayers, God had appointed Josiah's life and had sent him to us for this time. Looking at Josiah's name now, I find new depth of meaning and encouragement as we face these issues in his back. God is supporting our precious boy and He appointed that Josiah should live and be entrusted to our care. These encouragements give us hope in the midst of this trial, remind us of The Lord's faithfulness to us in the past and give us confidence that we will see His hand of faithfulness in our circumstances yet again.

Thank you for all your prayers for Josiah, Dana, Dara and myself and Josiah's doctors. Your faithful support and encouragement has been a blessing to us. We will post again following our appointment on the 17th.

Doctor Called...

Hi Friends,
Tonight we got some heartbreaking news. We have been waiting for the last couple of weeks for our spinal specialist from Shriners and the neurosurgeon at OHSU to connect about Josiah's recent CT Scan and urodynamic study. This evening our Spinal Specialist called and he feels that Josiah's back is at a place where we have no more margin, things have not changed (improved) and he is not comfortable waiting until we have a crisis to address the problems in Josiah's back.

He is planning to meet and discuss an intervention and care plan with our neurosurgeon as well as with two of his other colleagues that specialize in spinal abnormalities. He told us to prepare for a surgery in 3-4 months. The basic plan is to do what's called a "internal fixation" of his lower spine area to correct his sacrum which is not normal (nerve roots exposed, no proper bone coverage there), as well as address the abnormal flexation in his pelvis which could potentially cause his back to collapse and pinch the nerve endings of his spinal cord. This plan is tentative and our doctor is planning multiple consults with other specialists before the care plan is finalized because Josiah's abnormalities are so rare. We will meet with our doctors sometime in the next month once they have determined a course of action.

So... as you can imagine, we feel like we got the wind knocked out of us tonight. It feels like the direction is certain, and yet nothing is completely certain about this. What's uncomfortable about this process is that its not like having your appendix out where the procedure has been done countless times with proven outcomes - these surgeries are more rare and the abnormalities tend to be specific to the child which makes it hard to compare one case to another. On one hand I am glad we know about it and that this isn't being generated by an emergency because of some symptom we are witnessing from Josiah-- on the other hand I look ahead at our summer and the anxiety of waiting and thinking about this for four months and it just sits in my stomach like a rock. I hate it that Josiah has to go through anything like this at all. Its really hard to think about our little guy having any kind of potentially life altering surgery.

We had a family meeting tonight to talk about this and to pray. We all shed some tears together. We are still believing God for a miracle in Josiah's body. Thank you for your continued prayers and support during this time. Our trust is in the Lord, Maker of heaven and earth, and Maker of our precious Josiah. We will post more as we know more.
Shawn & Dana

Josiah's 2 tests this week

We wanted to ask for prayer as Josiah has two tests this week. Tomorrow, Monday 15th, he has the 3-D CT scan which he will be IV sedated for. The 3-D CT Scan is so the doctors can see every little piece of bone and the exact structure of his spinal abnormality - they want to see in detail the area where the spinal cord is almost being pinched off. They think the ct scan will show them exactly how much room it has (right now they're guessing barely 3mm) and if there is any pressure or pinching happening currently. This 3-D ct scan will also allow them to "digitally play" with Josiah's back (on the computer) and see what would happen in different surgical scenerios - would this part move or that part, would it make it unstable, how thick are his surrounding vertebrae, etc. So they're expecting to get a lot of info from this 3-D CT Scan. Pray Josiah is perfectly still during the whole procedure - he will be sedated but kids still jerk and move while sleeping. Pray for as little movement as possible.

Thursday the 18th he will have his urodynamic study which he will be orally sedated for. This test is so they can get a baseline of his bladder, kidney and bowel sphynctor functions. They want to know if his bladder and kidneys are function properly on all levels - filling up, emptying out, responding to sphynctor control telling it to hold in or let out, etc. Same with his bowels. The oral sedation is a lighter sedation and he will possibly be "awake" but will not remember any of it. They cannot do the deep sedation with this test because then they do not get normal responses from the body which they need during this test in particular. Dana will be back with him during the whole test to reassure him if he opens his eyes - he will feel no pain but will be in and out of being aware of his surroundings but again, will not remember any of it. Some kids sleep through all if it - pray that this is the case for Josiah - it's during his naptime so there's a good possibility that he will.

Thank you for praying for these tests this week. We appreciate it SO much! We will not know anything after these tests since we are not meeting with the doctors right away. The doctors have to get the tests, review them and talk together about what they find. We will then meet with them (no appointment is scheduled yet) and they'll explain what they found from the tests and what they recommend. Pray that the doctors are able to talk soon - it's a miracle to get specialists to talk because their workloads are so huge. We are guessing that it will be 4-6 weeks before we are able to meet with them. We will post as soon as we know about that appointment and for sure after we meet with them to update you on what we find out.

Thank you again for all your prayers and support! Josiah is a gift and a blessing and we know he is held in the palm of God's hand.
Blessings -
Shawn & Dana