Judah’s Journey

We are home!!!!!!!!! Cue the dance party! Our three month stay at the gymie-school has come to an end. It feels surreal to be at this point. Judah and I went back on Tuesday for his therapy and an orthotics adjustment appointments. The outbreak status was extended for this week, so Judah didn’t get to go back to the pool or school. Before we went up to our floor, we said goodbye to his teacher in person, which was so special. She hadn’t seen Judah since the first week of November. Thankfully, we were able to say goodbye in person to everyone we had a card for, so it made the goodbyes feel a bit more real. When Judah was saying goodbye and “thank you for helping me” to his physio and OT therapists, they said the same thing: “My pleasure, Judah. You did all the hard work.” And he did. He fought through and persevered when he was physically weaker and adjusting to all the change in his body and environment. He learned new skills, and has more stretching range in his muscles, balance, coordination and endurance that he didn’t have pre-op. We are beyond proud of him and all that he has accomplished thus far.

We were told by Judah’s neurosurgeon that this surgery is an investment into his future. He has the ability to make gains six months, one year, five years, tens years down the road and beyond. The fact that we are already seeing gains at the three month mark is all God and the prayers of our community! We are so thankful to God for all He has done and we are grateful for the army of friends, family and church family that has been continually lifting Judah before our God. 

Judah’s friend that he made at the gymie-school moved into our room, so they got to have some enjoyable playing time together before we left. When I asked Judah what he would miss at the gymie-school, he said, “my friend and the clowns”. Of course that is his response as a five and a half year old. Judah knew that the clowns sang a special song for kids leaving and it was important to him to have that moment too. He danced his heart out laughing away to their songs for him. 

Moving forward, Judah will have therapy at the centre he has been going to since he was almost two years old. Judah has a wonderful rapport with these therapists and I know they are the right people for him for this part of the journey. He will be back to school next week and he is definitely looking forward to that! 

Thank you for reading along, praying along, and supporting our family over the past three months. Your encouragement and thoughtfulness means so much to us and we are so grateful.  We are grateful for the care Judah received from SickKids Children’s Hospital and Holland Bloorview Rehabilitation Hospital. We are thankful to God for leading us to know and learn more about this surgery and advocate for Judah to be assessed for it. We know full well that God has been guiding us through the past three months and He will continue to. Our journey is entering a new phase now and we feel ready and hopeful for what is next for Judah. 

Praise God for:

-the overall health of our family

-the opportunity to bring our little family closer together even though we’ve spent time apart 

-God’s hand on Judah’s life and our family 

-Judah will be going back to his pre-op therapy team and back to school next week

-Our community supporting us along the way 

Prayer Points: 

-Judah’s transition back to his pre-op therapy team and back to school and all that entails 

-Judah‘s continued understanding, motivation and confidence to try new exercises and activities for physio and occupational therapy 

-Strengthening of Judah’s muscles for proper coordination, endurance and balance 

Two weeks ago, there was a respiratory virus outbreak on Judah’s floor and wing while Jesse and Judah were there. Thankfully, Jesse remained non-symptomatic and his care team was super accommodating even though Judah wasn’t able to go to school or the pool. He still had in person therapy in a designated gym. With a second respiratory virus outbreak over this past week, we decided to have Judah stay home and do virtual appointments. Judah went back this week for a new orthotics fitting and had an in person physio therapy appointment. We had our final big family team meeting yesterday and also invited staff from Judah’s school, and his therapists working with him pre-op. I was grateful to virtually see the village of care and cheerleaders Judah has both pre-op and post-op. 

It has been a good week overall physically and we have all continued to remain healthy. Judah was able to get back to riding his bike at home. This bike has a regular seat compared to more trunk support which he had at the gymie-school. Judah is continuing to show more signs of strength in his muscles which motivates him to try and accomplish more and this hopeful cycle continues. You’ve prayed and hoped for this weekly from the prayer point listed, and we are seeing it! Praise God! For as long as we can remember, and within the past three months, we have been gently coaching him with phrases related to practice, persevering when trying etc. By conversations he is bringing up related to these topics, we know our “coaching talks” are resonating with him and we couldn’t be more proud. This intrinsic motivation will take him far. 

Hopefully Judah will be back next week to regular programming if the outbreak status has lifted. He will then be discharged on Thursday November 24th. For the past two weeks, I’ve been thinking about this upcoming transition period from the “gymie-school” season back to “real life”. Although there have been some incredibly hard moments from this three month rehabilitation time, there have been many blessings for our family as well. How do we take the good from this season  and bring it into the next one? As I’ve been trying to enjoy and savour these last few weeks, either at home or at the gymie-school, I was reminded of advice that a family friend gave to me on our wedding day, to “walk slowly”. This means to take in the present moments you are in. Regardless of where we are at, when we do this, we can enjoy the good and take time to process the uncomfortable to get us through it. This also made me think that this is what we are reminding Judah to walk slowly more and more post-op. He is re-learning the proper body mechanics of “heel then toe”. The slower he goes currently at this stage, the more accurate and successful he is with this goal. It’s great advice on many levels for our family as we head back into “real life” soon and the next part of the journey. 

Praise God for:

-Judah’s strength and motivation, while doing his exercises and understanding of our “coaching talks” 

-Judah’s participation in virtual therapies last week 

-The blessings we’ve been able to see for our family 

Prayer Points:

-Judah‘s continued understanding, motivation and confidence to try new exercises and activities for physio and occupational therapy 

-Strengthening of his muscles for proper coordination, endurance and balance 

-Our family’s continued health

-Perseverance as we continue on this journey 

-Wisdom and peace as we navigate this transition period 

We were all home last week due to sickness and it hit us all a little differently. On the bright side, we were all home together for my birthday. We were sick, but still together. Judah was doing virtual appointments for OT and PT this week and other exercises/activities with us in between. We had experienced the odd virtual physio therapy appointment before his surgery and he is very familiar with doing exercises at home. Judah is now back at the gymie-school this week. 

For a handful of mornings a few weeks ago, Judah was singing his own made up song on the way to school or therapy: “It’s a new day. It’s new day. I’m so excited for a new day.” This was an important reminder for me to pause and reflect on. We all have ebbs and flows to our days, and moments we enjoy more than others. However, regardless of what happened one day, for better or worse, there is always a new day ahead of us that is full of potential and hope if we look for it.

Judah’s incision has been healing very well. He was approved to go swimming three weeks ago and he loves his time in the pool! He was waiting patiently for this time since the beginning of our gymie-school experience! He is doing so well in the pool and I look forward to seeing how this supports his therapy goals. He will go swimming for physio therapy once a week and there will also be one recreational swim time for him once a week. Judah is having fun during his school time as well. He is enjoying connecting with his teachers and other kids in his classroom,  which we are grateful for. Judah has been working hard during his physio and occupational therapy time and trying his best. As a five year old, he sometimes wants to do this own things and explore the space on his own. He is walking to his therapies and to school using his walker instead of using the wheelchair.

I was able to request a play mat for Judah to use in our room. This has been a game changer for him to enjoy playing in different positions during his downtime just like he would at home and also it is a productive time get some energy out. Because Judah’s roommate “went home forever”, as Judah calls it, we were able to move to their side of the room which is bigger and allows for the play mat space. We are grateful for the huge window we have on this side too. 

Praise God for:

-Everyone in our home is healthy again 

-Swimming program to support Judah’s rehabilitation 

-Judah’s participation in virtual therapies last week 

-Judah having a buddy close to his age to play with

Prayer Points:

-Judah‘s continued understanding, motivation and confidence to try new exercises and activities for physio and occupational therapy 

-Strengthening of his muscles for proper coordination, endurance and balance 

-Our family’s continued health to keep Judah going to Holland Bloorview during the week 

-Perseverance as we continue on this journey 

Judah came home again this weekend and we are savouring these moments as a family together. It is such a gift of time and we are thankful to be in this new phase. Last Friday at the dinner table, Sarah was cheering “All the parents are here! All the parents!” She hadn’t seen us both together since the Judah’s surgery. It was a wonderful moment! It was so refreshing for us to see Judah in his home environment, being himself and playing with his siblings. It didn’t take long for typical sibling dynamics to show up! Judah did well with transition back last Sunday night and we hope this continues! 

This past week has been a lot of navigating what is best for Judah’s schedule to maximize Judah’s therapy times in terms of his energy, motivation and engagement. Judah’s occupational and physio therapy is the most important part of his day. We are finding the balance of what gives him enough rest and down time as well as enjoyable energy outlets throughout the day. Judah’s emotional regulation has also been a focus for us. It has been challenging at times. We have been bringing food from home to supplement some meals and snacks for Judah, which has been working well. 

Judah has more of an understanding of what is expected of him in his therapy sessions. For the most part, Jesse or myself are actively part of engaging him in activities while the therapist focuses on proper movements and techniques. It is truly a team effort. 

Because of the amount of spasticity in Judah’s legs and feet pre-op, he hasn’t the opportunity to properly stretch and strengthen specific muscle groups. Judah has been working on strengthening his core, hip abductors and adductors and glute muscles as this point. We are also working on his proper gait, heel then toe, when walking. This is part of relearning proper movement techniques and stopping/ unlearning former habits that aren’t helpful for his body’s recovery. Judah still enjoys riding his therapy bike and we are glad he does. It is important for strength building and for him feeling like himself. He loves “zooming” through the hallways in his wheelchair too, when the hallways are “all clear” as Judah says! 

It is truly remarkable to learn about Judah’s body mechanics right alongside of him and we will continue to cheer him on! 

Praise God for:

-Judah’s incision healing well. It is almost fully closed up. We are getting there!

-Judah adapting to the routines at the gymie-school 

-Continually being supported by our family, friends and church community through prayer and practical needs – we are so grateful! It takes such a load off of our minds! 

Prayer Points:

-Judah’s continued emotional regulation as he experiences all of this change.

-Wisdom and peace for Jesse and I navigating Judah’s schedule allowing for valuable playing and resting times for him 

-Our family’s health to keep Judah going to Holland Bloorview during the week and being able to come home on weekends 

-Judah‘s continued understanding, motivation and confidence to try new exercises and activities for physio and occupational therapy 

-For a good rapport between Judah and these wonderful therapists 

Regardless of our circumstances, there are always experiences and moments to be thankful for. Remaining thankful is a choice. We are choosing what we focus on. We are choosing in this journey to look for what we can be thankful for. Our faith in Jesus Christ is an anchor and focus for us in this journey.  

Is every therapy session easily motivating for Judah? No. Is he a five year old full of energy, emotions, desiring fun and independence? Absolutely. We are all finding our way in this new environment for Judah with many changes we are all facing. We can acknowledge the hard emotions we feel currently or from the past on this journey, and simultaneously desire to figure out how to process through them to not grip us and throw us off course. We can also celebrate the little yet significant successes along the way! It is all a balance. 

Some moments to be thankful from this week:

-Judah enjoying the “therapeutic clowns” weekly. They put on a personal and spontaneous comedy show for the patients and it is entertaining for the parents too! I’ve found Judah giggling in his bed by himself saying “the clowns are so funny!“ 

-Compassionate staff ready to support Judah and ourselves however possible 

-Connecting more with parents, hearing about their experiences and sharing ours 

-Reading books countless times and drawing with Judah 

-Progress of Judah taking verbal cues from therapists to activate the correct muscles during therapy play 

-The ability for Jesse and I to reflect on and problem solve scenarios together functioning as a team as we take turns staying with Judah and being at home with Sarah and Joshua 

-Quiet moments of reflection, journaling  and prayer 

-Family and friends reaching out in various ways to support our family 

And the list can go on… 

This past week, we had a meeting with the team involved in Judah’s care here. Overall, they were happy with Judah’s progress and start to being here. We were able to problem solve and look to next steps to best support Judah moving forward in some areas. We have been given a discharge date for the end of November, as anticipated. We have also been granted a weekend pass for Judah to go HOME starting THIS WEEKEND! 

In my mind, getting to this “weekend pass” has always been a checkpoint for me. Let’s just get to this point, and we will be okay. We haven’t been together as a family of five since the day before Judah’s surgery. What a wonderful reunion this will be! We know it won’t all be easy for  various reasons and there will be a lot to learn. However, we will look for the many moments to be thankful for, and keep on going. 

Praise God for:

-Moments in the week to be thankful for 

-Weekend pass to go HOME! 

-Judah is beginning to eat better with some familiar meals and snacks from home 

Prayer Points:

-Judah’s incision to continue to heal as anticipated (there is no longer fluid there and we want to keep it that way!) 

-Judah’s emotional regulation as he experiences all of this change 

-Wisdom for Jesse and I navigating Judah’s schedule allowing for valuable playing and resting times for him 

-Judah‘s continued motivation and confidence to try new exercises and activities for physio and occupational therapy 

-For a good rapport between Judah and these wonderful therapists 

I’ve been told before to view this journey we are on with Judah as a marathon and not a sprint. Things will be take time and not just happen overnight and that is okay. It’s a good reminder to reflect upon as we are settling into our time here at Holland Bloorview. 

Thank you to everyone who reached out last week with messages, texts, and phone calls of encouragement, prayer support, offering meals, and other ways to support our family. I shared that it was a lot adjusting to the change we are experiencing. This week has been a lot better overall. When I came back to Holland Bloorview, things felt more familiar. I was able to take more intentional time this week for myself to journal my thoughts and turn them into prayer, which really helped. I know our purpose here and I trust that God will continue to guide us on this journey and through whatever we encounter along the way. I introduced myself to a handful of moms to feel more connected and Judah has met more kids too. One mom invited me out to a ukulele learning session for parents and I thought, “Why not??!” I was also proud to share that I had some elementary school experience playing the ukulele, but that is another story for another time. 😉 

Judah was given a bike to use from his physio therapist this past week. Biking for Judah over this past spring and summer has been his super power. His joy, confidence and motivation has soared when he was on it solo or biking with Sarah or his cousins. He was thrilled to get to use one, show it off to others, and was happy to travel through the hallways to the playroom, kitchen or wherever else we ventured to. “I want to ride my bike because it’s a more awesome way than taking my wheelchair”. Judah even encouraged his younger roommate to ride his bike with him through the hallways. It was the cutest sight to see! 

Judah also started SK at school on Friday. He is in a kindergarten to grade 2 classroom. He enjoyed exploring the classroom and got to participate in art class too. When the teacher asked if he liked art, Judah said, “Yes, I’m an artist!” He had a great first day and is looking forward to go back next week. 

We are continuing to find the balance for Judah to eat a healthy diet, and keep energy and motivation levels up in his therapies. These areas are taking more time to adjust and we are hopeful that they will improve as routines feel normal to Judah. 

Thank you for reading and reaching out! 

Praise God for:

-Meeting new people here and getting adjusted to all the change 

-Judah getting a bike to ride on and being able to move more with no pain 

-Judah’s excitement towards going to school 

Prayer Points 

-Judah’s incision would fully close with no minor fluid, and would heal as anticipated 

-Judah eating healthy to keep his energy levels up 

-Judah‘s continued motivation and confidence to try new exercises and activities for physio and occupational therapy 

-For a good rapport and trust between Judah and these wonderful therapists 

We arrived at Holland Bloorview this week as planned. When we explained Holland Bloorview to Judah, we said there was going to be a gym there to do his exercises and a school for him to go as well. It didn’t take him long to interrupt us and say “maybe we can call it a ‘Gymie-School’ then! It has stuck and we’re going with it. 

We are so thankful for the care Judah received from the staff at SickKids from start to finish. They were truly supportive and compassionate as we navigated the pre-op and post-op stages. 

Judah has been in a lot less pain which is the hope at this point. Pain meds are on an as needed basis now. It’s hard to believe this surgery was just last week. Judah has been such a trooper over the past week and presently with everything going on and with so much change. It’s taken a few days for myself to get adjusted here with all the change we are going through right now. It was more emotional for me than I expected. I know there will be better days ahead. Getting into routines and knowing the place and people better will help, one day at a time. 

All of the staff we have met are so kind and helpful. Judah enjoys going to the therapeutic playroom available to play with a variety of toys and do art activities. It’s something for him to look forward to and he is thriving there. We are able to drop Judah off there and take some for ourselves. As I’m writing this, he just asked, “when is the playroom open this afternoon?” We’ve explored outside at the playground and embraced the warm sunshine as we wandered around different areas.

Judah has started physio and occupational therapy here as well. Our focus over the next three months will be strengthening his muscles in various ways. He is enjoying the new toys and games to play and has some new equipment like a wheelchair and stander. He is definitely motivated to try various movements independently when he has the energy and that is so amazing to see. He will often say, “I want to do this on my own”….”I didn’t need your help that time!” Judah will also be starting school next week here. 

Praise God for: 

-A good transition for Judah from SickKids to Holland Bloorview 

-Judah’s pain meds decreased 

-Friendly and helpful staff at Holland Bloorview 

Prayer Points:

-Judah’s incision to continue to heal well

-Judah’s continued motivation and confidence to try new exercises and activities for physio and occupational therapy and a good rapport between Judah and these wonderful therapists 

-Smooth transitions for Jesse and I between home and “gymie-school” and for our family in this time of change 

-For me specifically as I’m beginning to feel the emotional weight of these changes

Thank you! 

Day one and two in the hospital were pain management for Judah while he was laying flat. His pain medications decreased yesterday and will ideally continue to decrease. When I was singing a few different songs and snuggling with Judah while he was feeling more pain, he wanted me to “sing only the Jesus songs”!

Yesterday on day three, Judah was approved to try to get up and out of bed if he wanted to. His bed was inclined and he did well with it! 

Judah was also able to get into the chair after the second attempt. His pain went away when he was actually sitting in the chair. He had a good time exploring the halls for about 30 minutes! We are hopeful Judah will be able to be comfortable getting into different upright positions for longer periods as the days go by. 

We are excited to see where Judah’s baseline is post-op in terms of strength and coordination and know where we are starting from regarding his therapies. We feel honoured to be by his side.

Early this week, Judah will be discharged from SickKids and will go to Holland Bloorview Rehabilitation Hospital in Toronto, where he will stay for three months. He will have daily physio, occupational and recreational therapy as well as attend the school there. More on that to come! 

Prayer Points:

-for Judah’s motivation and confidence to  be in new positions, and not being fearful of it 

-for Judah’s continued strength in his legs and feet when physio begins today 

-that Judah’s pain management would be supporting his recovery as they are trying to decrease some meds daily 

-transition from SickKids to Holland Bloorview goes well 

Praise God for:

-Judah doing well with his inclined positions 

-SickKids doctors, nurses and team in the operating room and supporting Judah’s post-op recovery 

-Judah’s incision is healing well as anticipated 

Thank you for your continued love and support!

Our son, Judah is living with Spastic Diplegia Cerebral Palsy. Judah had a surgery called Selective Dorsal Rhizotomy at SickKids in Toronto yesterday. The hope and goal of this surgery is to remove and/or drastically reduce spasticity (tightness) in his muscles. 

The doctor spoke with us and said once he was in there and saw Judah’s muscles, he felt even more confident that this surgery will help him functionally. The surgeon’s exact words were, “we are confident this surgery will relieve the burden of spasticity in his body.” Everything went according to plan and there were no hiccups or setbacks. We are beyond grateful for this surgery team and this surgery! Praise God! He is doing well today and is on best rest to allow for the incision to heal properly. 

Thank you for all of your thoughts and prayers over this past while, today and beyond! We are so appreciative for this, your love and support! 

This will be a space to share Judah’s journey with you. Thank you for reading and coming along with us on this journey! 

Prayer Points:

-Judah’s incision will heal well and quickly 

-Rest for Judah as he is on bed rest and for Jesse and I caring for him