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.

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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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

Always Celebrate the Inchstones

img_1608I’ve been working on a few new posts about our life in Los Angeles, but Solly just hit a new inchstone and progress is always a good reason for a quick update.

Last night, Solly started holding and drinking from a handle-free cup completely independently! It’s not perfect: he’s still making a mess with it, spilling water from the cup about 80% of the time and sometimes forgetting to bring the cup upright after taking a drink, but we can now proudly say that Solly can pick up a cup off of the table, bring it to his mouth, take a drink, and place it back on the table.

This is a huge accomplishment, especially for a kiddo who the NICU doctors once said would never eat or drink by mouth. We’ll continue chipping away towards all of Solly’s milestones, but today, we’re celebrating this inchstone and Solly’s progress.

Setting Goals for Intensive Therapy

img_0597We’re in the final week of our fourth three-week intensive at NAPA Center. Once we wrap up on Friday, we’ll have completed a total of six intensive therapies with NAPA and several at other clinics, and while I’m far from being an expert in navigating the world of intensive therapies, I now feel confident in what to expect when we walk through the doors on Day 1 of an intensive.

While there is a lot of planning and paperwork that goes into an intensive, without a doubt, one of the hardest parts of intensive therapy – aside from managing Solly’s fatigue and constant need for motivation – is setting goals at the onset of treatment. Goals are vital to the success of intensive therapy. They help the therapy team understand what I envision for Solly; they guide the therapy team in developing a plan for the duration of the intensive; and they can also dictate Solly’s confidence throughout the intensive therapy. Too easy and he quickly becomes board. Too hard and he doesn’t want to participate. For these reasons, there is quite a bit of pressure for me to fine tune our list of goals before starting an intensive.

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