Pre-op Appointment

Today, Mike received a great birthday present - our pre-op appointment with Dr. Park! It was so good to see him again (we met him in August when he came to our annual Ontario SDR picnic). We had a great appointment! In addition to SDR, Dr. Park will perform PVR (partial ventral rhizotomy) during the same operation using the same incision location. This will specifically help James’ scissoring (the crossing of his legs when he tries to take steps). He spoke about this possibility with us when we met him in August too. We’re very excited about what this means for his ease of movement in the future. With the addition of PVR, his recovery will take longer at the start but will be well worth it. For a refresher of what the surgery is, check out our SDR post.

The hospital is beautiful! We were there for the majority of the afternoon seeing a variety of staff and ending with seeing "Sir Dr Park" who defeats the dragon of spasticity! We've been reading a book written by a fellow SDR parent (can be bought on Amazon) about the SDR surgery. He is such a nice man and is very positive about James' outcomes post surgery.

As you can see from the pictures, Shae was rather tired and spirited during our pre-op appointment today which made for a difficult time juggling managing Shae's behaviour while listening to the details of James' surgery (appointments during nap time are not ideal which Shae made very clear to us!) It was so fun to see Dr. Park's office with the walls covered with photos of kids (and some adults) who have had SDR - some of which we know! Here are some from Ontario:

Aidan, Dr. Park's first Ontario patient in February 2014:

Evi, who had SDR March 2018:

There were some group photos of our Annual SDR picnics too:

We also got to meet up for lunch with Virginia, a friend from Ontario who also has had SDR as an adult. She is here with her aunt as she had PERCS (muscle lengthening surgery) with Dr. Dobbs last week. It was so nice to see her! She's been a great encouragement to James and our family. Her blog is very much worth checking out.

We have a physical therapy assessment and filming appointment on Wednesday afternoon and then surgery is scheduled for 7:15am on Thursday. We're to be at the hospital at 5:45am! Thank you for your prayers and encouragement everyone.

Getting settled

Today was an unpacking, grocery shopping and exploring our new home day. The hour we gained from changing time zones came in handy today for unpacking and getting ourselves settled. St. Louis is 1 hour behind our Ontario time zone. We are really happy with our apartment style room at the Chase. It’s a nice and comfortable place to call home for the next month.

The Chase gifted us a build-a-bear and a blanket for James! They are very familiar with SDR families here and so friendly and accommodating.

This morning we had a care package dropped off for James from Brenda who is a connection with my past coworker, Holly. Holly’s sister went to school with Brenda in St. Louis and she organized with a group from her church to put together a care package for James. So kind and thoughtful! There’s a bag for Shae too! Lego, books, stuffed animals, colouring books and more filled the bags! Thank you so much Brenda and your small group for putting this together for James!

Mike went to pick up a stander for James today. It couldn't fit in our car with all of our other luggage so I coordinated with Kimberly, a local mother of twins (both of whom had SDR recently) to borrow their stander that they no longer use. Through the St. Louis SDR group on Facebook of over 13 thousand members I was able to connect with Kimberly and coordinate this. Thank you social media! And of course, thank you Kimberly for letting us borrow the stander for the next month. It works well for James!

We finally got to meet a Canadian family who I've been connecting with the last few months. Ben had SDR just 2 weeks ago and is doing so well! They're staying on the same floor as us at the Chase. Stephanie and I connected over social media through our mutual friend, Kaylen. Stephanie, her husband, Dallas and their twin boys, Ben and Alex are here from Kelowna, British Columbia. Ben asked James in the cutest voice, "do you still have spasticity in your back?" It's so cute to witness the unspoken bond these two have by having the same life-changing surgery,

After dinner we went on an evening stroll. There's a beautiful park right across from the hospital. We're liking St. Louis so far!

Tomorrow we meet with Dr. Park!

Hi St. Louis!

We’ve arrived! It was a very rainy drive today but we made it safe and sound! The kids did amazing. Thank you for your prayers for a safe journey. Like many trips, the last couple hours felt the longest! We have tomorrow to get adjusted to our new home and surroundings and then James has pre-op appointments starting Monday.

We had a really nice send off with our Windsor family last night. We are so blessed to have such loving family and friends.

Here in our new home for the month - the Chase.