TL,DR;
Check my daughter’s Go Fund Me for the detailed updates and to contribute if you’re able.
Thank you 🙏🏻. https://www.gofundme.com/f/help-kaitlyn-heal-postsurgery-and-recovery-costs
I don’t like saying the last 6 weeks have been horrible. Because I know many other people have had it so much worse – and despite everything – we have so much to be thankful and grateful for.
I’m reminded of (and encouraged by?) the words of Job “should we expect only good from God?” (Job 2:10). As if from the depths Job is calling out “Life happens – keep going!”
6 weeks ago, the week before Thanksgiving, my Mom lost her battle to cancer. I haven’t talked about it much (to anyone). We knew we were heading into a trying season. I had previously discussed with my Mom’s husband (a truly wonderful person – that we are incredibly thankful for) that – if anything were to happen with my Mom before the end of the year – we would hold off on the memorial service until Jan. So, I’ve pushed off my grief – and processing until then. (Who can say if this is a healthy coping strategy, but it’s what’s working for me – for now).
Then – the day after Thanksgiving half our family flew to New York for an intensive, and life changing surgery that one of my daughters desperately needed. We were told – post surgical recovery could be as fast as 10 or as long as 21 days – yikes hard to imagine three whole weeks in another town/state/location living and working from a hotel while your daughter recovers in a hospital.
As I write this, over a month later– we’re still in New York – with probably 2 more weeks to go.
Happy New Year indeed.
(…continued from Linkedin)
The short update: The 6-hour, intensive surgery went well. Everything that needed to be bolted in place was bolted properly and all indications are for a positive outcome. (much to be thankful for). The recovery has been challenging.
Longer update: Coming out of sedation – my daughter could not feel or use her entire left side. (arm, stomach, leg). We’re told this is not entirely uncommon, but you can imagine our concern coming out of a spine & skull surgery.
- 2 days after surgery, my daughter was moved out of ICU and into the spine unit. (grateful)
- 4 weeks later (2 nights back), from the spine unit to in-patient rehab. (grateful)
- The current plan is 2 more weeks in rehab (here in New York City) while she relearns how to use her left leg and arm and how to function day to day with her current challenges.
When we set out for New York, we really didn’t think we’d be here through Christmas and certainly not into the new year. Despite the setbacks – and the pain of watching my daughter struggle with recovery, an inability to use her leg – and everything that entails, my wife with sleepless nights advocating for her along the way, being in an unfamiliar city with difficult surroundings. This is the adventure we’ve been called to (being parents) – we still have had so much to be thankful for.
I don’t want to sound like it’s been all bad, or that it’s been all good. This has been the most emotional roller coaster of our lives. With successes and joy mixed with pain – real pain and sadness and frustration and so many other emotions and physical toil. We’re also not suffering in a war zone. We’re in one of the greatest cities in the world. We have running water, electricity, a place to sleep and Uber Eats. I’m able to work remotely, and I have several Schwab offices I’m able to work from throughout the week. But it has been hard – really HARD. I’ve included many pictures below and in this post’s title from the last month to help show some of the ups and downs. Joy and struggle.
Two days ago was a good day. My daughter was experiencing some success in rehab and then one of her lifelong friends surprised her with a visit and they even had a sort of girl’s night in the hospital. (thankful). Today was hard – my daughter passed out (like a light switch clicking) during rehab and was dropped on the PT table hitting her head. Talk about setbacks. Ups and downs.
Often it feels like 3 steps forward.. 2 steps back.. then 2 more steps back... then forward again. Repeat. At least overall – we’re moving in the right direction (thankfull). We’ve had countless friends reach out to offer support, send care packages, drop everything to pick me up last minute from the airport, and even contribute things like uber eats gift cards and airline miles (it all helps – thank you, thank you all so much!).
- I’m so thankful for the nearly 50 people that have already financially helped. This completely blows me away and fills me with gratitude every day – thank you all.
https://www.gofundme.com/f/help-kaitlyn-heal-postsurgery-and-recovery-costs (grateful) - Many of our friends from our church small group (Milestone Church) sent care packages that made for a much more festive Christmas despite everything else. (grateful)
- Use of her left arm – even if it’s limited. Today Kaitlyn’s right arm has 65 lbs. of strength, while her left arm has 5 lbs. of strength – still, we’re grateful or those 5lbs!
- For my family – even though we were apart for yet another Christmas (last year 3 of us were visiting my mom for the last time) – we’re pulling through this season together.
- Health Insurance (we’ve hit our max out of pocket several years in a row now! 😲)
- Recovering from Norovirus. Seriously, Sunday night my youngest and I both got hit with the Norovirus. It’s truly awful (I won’t give details, but you can google it). I would say it’s more intense that Covid – but thankfully – more short lived. I’m so thankful to be passed that and recovering!
- The hospital staff. They have all been amazing. No 20-year-old girl wants to spend Christmas or New Years wheelchair bound, stuck in a hospital room for a month, needing assistance for even through most basic things while she recovers. It’s hard. And the staff here have been with us each step of the way. We’re thankful for them and all they do.
- I’m also so very thankful to my company (Charles Schwab) and my team. They have been very gracious and accommodating, allowing me to work from multiple offices here in New York. It’s given me a chance to see how some of our technology is directly used in the field, and to experience directly some of our offices that I wouldn’t have otherwise gotten to know. Truly, everyone here has been so very supportive. (grateful)
As you can imagine – living from a hotel next to a hospital in Manhattan for over 6 weeks was not in our plans or budget for the year. I know many people are struggling – but if your able to participate, any contribution is truly appreciated. 🙏🏻 Even more… please keep praying for my daughter’s healing and recovery so we can get her home.
Thank you all. (https://www.gofundme.com/f/help-kaitlyn-heal-postsurgery-and-recovery-costs)
Life happens – we keep going!
Please visit the LinkedIn article to comment.
Update! (1/9/2025)
Since posting, over 75 additional people have contributed! We’re completely blown away. Seriously, our family is overwhelmed with gratitude. Thank you all so much. With all these contributions, we hit our GoFundMe goal – which will cover about half of our expenses in New York. This helps more than we can say. Thank you. Thank you. Thank you.
Kaitlyn’s come home date is locked in! This is the most incredible news, and I wanted to share it here. We finally have a come home date. Next Tuesday – 1/14/2025 – we will all be flying home from New York. This has been an exhausting journey. I can’t even explain the sense of relief it will be to have our whole family back in one state and close to each other. Kaitlyn will continue to recover and do rehab therapy from here. There is still a long road ahead of us, but at least it will be from our own beds!
Additional medical info and details
I’m adding some additional context to what my daughter has been dealing with for those that are curious and have been asking.
EDS – Ehlers-Danlos syndromes – this is the overarching condition that my daughter is dealing with. Everything else falls under the EDS umbrella or is related to EDS. No surgery or treatment will cure EDS. This is a connectivity disorder that affects everything else in her life. It’s inherited, genetic, and degenerative. What is EDS | WikiPedia | WebMD | Mayo Clinic
Chiari Malformation – This is the reason Kaitlyn had two brain surgeries in June of 2023. A Chiari malformation basically means your brain is too big for your skull. To treat this condition, a permanent soft spot is created in the back of your skull and part of your skull and C1 vertebrae are removed. We hoped (at the time) this would significantly help with Kaitlyn’s pain and symptoms. Unfortunately, the Chiari surgery ended up exasperating the CCI. Addressing the CCI is the reason we’re in New York now.
WikiPedia | Mayo Clinic |
CCI – Craniocervical Instability – This is the connection between the spine and the skull. For people without EDS/CCI – our soft tissues hold everything together, lined up tightly. For people with CCI, the brain and vertebrae sort of slide around some when they move. This creates a ton of issues all related to the spinal cord and related nerves getting pitched and pushed in ways they’re not supposed to be.
The surgery in New York was specifically to address Kaitlyn’s CCI. They fused her skull to her C2 and C3 vertibrae. It’s a permanent and complete fusion – meaning that for the rest of her life, Kaitlyn will not be able to move any of the joints in that part of her neck and head at all. The hope is that this will drastically inprove Kaitlyn’s quality of life by reducing or eliminating many of the symptons and pain caused by the CCI. What is CCI | EDS Clinic
So now you know more about the conditions that are affecting our daughter’s life and some of what we are trying to do to help address those challenges. Thanks you for reading, being interested and involved – and again, thank you so much for your prayers and support!
Please visit the LinkedIn article to comment.
Please visit the LinkedIn article to comment.
