Milestone Alert: Hands and Knees!

On Friday, I was sitting at Solly’s final occupational therapy appointment of the week and I witnessed something amazing and entirely unexpected. Roughly two minutes after I hit publish on my last blog post, I looked up from my computer to see Solly, who was laying on his tummy, push his booty back over his knees and rise up into a quadruped position. This is a milestone that he’d never, ever achieved before, and here he was, exactly 8 weeks after an incredibly invasive surgery, placing a check mark next to a brand new milestone. I grabbed my camera and caught him in action for his next round, and here’s what I saw:

What a warrior!

It’s my hope that this milestone will help move Solly forward to more independence – more independent play, the ability to better interact with his environment, and perhaps even more gross motor milestones. Whether or not this is the case, we will continue to advocate to make all environments as accessible and inclusive as possible for Solly and his peers. In the meantime, we’re gonna celebrate the heck out of this major milestone!

Here are some other photos of Solly working so hard this past week:

I’ll continue to post progress updates on his rehabilitation here and on Instagram. Thank you to all for your kind words, thoughts, and prayers as Solly went through this surgery and for continuing to follow our journey.

Helpful Equipment After Hip Surgery

Oh, hi there! We have officially ended the first phase of recovery after Solly’s hip surgery. WOO HOO! On December 22, we had our second post-operative appointment with Solly’s medical team, and his X-rays looked perfect. We got the green light to start weight-bearing – and head back to physical therapy – with zero restrictions. It was such a relief and the best early Christmas present! The timing worked out perfectly for Solly to do a two week mini intensive at NAPA Center while their team was in between regular intensives, and the extra therapy has done wonders for Solly’s strength and confidence. He’s already back to army crawling, getting into an assisted four-point position, rolling with minimal assistance, and working so hard on standing on his new legs. At home, he’s been spending some time in his stander, going for daily bike rides, and doing short stints in his Trexo.

But, before I leave hip surgery in the past and start to focus too much on Solly’s rehabilitation, I wanted to touch on some of items that helped him recover at home immediately after surgery. In our experience, one of the most surprising parts in preparing for Solly’s hip surgery was the lack of at-home equipment suggestions the medical team provided for post-surgery. As a planner, this drove me bananas. I had no clue how we were supposed to support Solly overnight, where he would be spending his time during the day, or how transportation would look. I was even contemplating renting a wheelchair-accessible minivan to ensure we’d have enough room to accommodate Solly wearing a pillow wedge and leg immobilizers in a car seat. Fortunately, several Mamas answered my calls of distress when I took to social media to express my frustration and worries and provided suggestions of equipment to have on-hand, based on their own experiences. Here are the items that were the most helpful to us:

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Reflecting on Hip Surgery

Social media can be a blessing and a curse. On one hand, since we received Solly’s diagnosis, I’ve been able to connect with, learn from, and befriend so many Mamas who are walking a similar path as mine. Their insights and guidance have helped me to navigate so many tricky situations. On the other, the groups where I’ve met these mothers can quickly turn into a rabbit hole when your child receives a new diagnosis or medical recommendation. You hear the good, the bad, and the ugly, with the bad and the ugly often standing out significantly, especially when it comes to surgeries.

That’s why, when we received the recommendation for Solly to have the VDRO and pelvic osteotomy surgeries, I was in despair. I kept reading horror stories of extreme discomfort, muscle spasms, and endless pain that goes on for months and months. These surgeries are painted in the worst light, making it truly terrifying to even consider your child going through them.

What’s important to know is that the doctor, medical team, procedures for pain and bracing afterwards, and the child’s medical history all play an important role in how this surgery can play out. Every child’s experience can and will be different.

Three weeks ago, Solly had a bilateral VDRO and pelvic osteotomy. It was a tough and long surgery. The immediate recovery while in the hospital was equally tough. He’s lost a bit of strength and we dealt with pain, muscle spasms, and some nasty side effects of pain medications. We still don’t know what’s to come in another three weeks when he’s able to start weight bearing and rebuilding strength. I suspect it’ll take months for Solly to physically get back to where he was pre-surgery.

Buzz helping Solly in the recovery room

But, despite what I’d envisioned – a recovery full of pain and agony, Solly is happy. He’s comfortable. And we made it through surgery.

Fortunately, we don’t have stories of Solly being in continual, unbearable pain. In fact, aside from some initial pain and some GI issues related to pain medications and immobility, much of his recovery has been manageable. Not easy, but manageable. I know this is not everyone’s experience and I also know that when you’re faced with the prospect of this surgery, you want to do all the research and go into the decision fully informed. Keeping that in mind, I wanted to share a bit of our experience with the surgery and recovery to give more insight – and maybe some hope – for families who need to consider this surgery.

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We Joined The Trexo Walking Club

img_1563I once read that in order to create new neural pathways, a movement pattern must be repeated hundreds, if not thousands, of times. In practice, this proves to be true: we spent months and months helping Solly roll over and army crawl before he was able to do it on his own and we find that as we work towards more complex milestones, more and more work is needed. Putting in this amount of effort for every single inch- and milestone sounds nice and do-able in theory, but in reality, there is not enough time in the day for this much therapy.

I often find myself up in the middle of the night, researching techniques, procedures, medications, and more to help Solly recover to his full potential, which is how I found out about stem cells, SPML, hyperbaric oxygen therapy, and all the alternative therapies we’ve tried. It was during one such research session in the wee hours of the morning in the Fall of 2018 that I came across Trexo Robotics on Instagram.

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Making Teletherapy a Success

Originally posted on NAPA Center’s Blog

With the ever-growing stay-at-home orders and quarantines related to COVID-19, life is weird right now. Our schedules are in limbo, our children’s lives have moved online, and as parents of special needs kiddos who already take on so much in a typical day, we’re now acting as our child’s teacher, nurse, therapist, and more, all on top of being Mom or Dad and everything else we usually do on a daily basis. We already had too much on our plates without a global pandemic: to say we’re stressed out doesn’t even begin to describe how chaotic our lives feel now.   img_2717

Fortunately, therapy help is available by way of teletherapy or telecoaching. I know what you’re going to say, “But I still have to do the hands-on work during these sessions. I’m still acting as my child’s therapist.”

Yes, that’s true. With teletherapy, you will be an active participant in your child’s session. But, that’s just one part of it. There’s so much you can gain from teletherapy that you may not have considered. Simply stated, teletherapy can make life a little bit easier when everything else seems really difficult.  Continue reading