Tag: SPML

Quick Update: The Hip Situation

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A bit of good news for hump day

Hip health is a major concern for many people with cerebral palsy. The reason behind this is largely because spastic (tight) leg muscles can pull the hip out of the socket, causing hip dysplasia where the ball of the hip joint isn’t fully covered by the hip socket. The surgery to correct this is a major one with a long, painful recovery.

In other words: this is something you want to avoid if at all possible.

This is why, against our local doctors’ recommendations, we decided to have Solly undergo selective percutaneous myofascial lengthening (SPML) last year to give his tight muscles a release along with alcohol blocks to help loosen them up. If you’re new to our blog, I wrote a couple of updates on SPML at 2 months and at one year post-op, and also gave an update on Solly’s hip health at 6 months post-op. This surgery was a game changer for Solly’s gross motor development, giving him the opportunity to move his legs more freely so he can now walk in a gait trainer and independently propel his tricycle. Continue reading →

SPML: One Year Later

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It’s a celebration

This week marked our one year anniversary of Solly’s selective percutaneous myofascial lengthening (SPML) surgery with Dr. Nuzzo in Summit, New Jersey. Our decision to move forward with this surgery was a pivotal point in Solly’s journey towards independent movement. In the weeks leading up to this anniversary, I’ve been reminiscing on the past year and celebrating all of the gains Solly has had and changes he’s gone through because of this surgery.

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Solly just moments before SPML

One year ago, my stomach was in knots during this optional surgery to help Sol’s spasticity (muscle tightness). I felt like I was the worst Mom ever for choosing to put my son under general anesthesia for a procedure that would be painful for him, at least initially. But as Dr. Nuzzo pointed out when we exchanged emails in a virtual consultation, Solly was living in “paralytic jail”. He wanted to move so badly, but his body fought every impulse to move. If we did nothing, it was inevitable that Sol would never be able to move on his own and his independence would be extremely limited. Because of his spasticity (muscle tightness), his bones would deform and he’d likely have to have a series of painful, invasive surgeries to secure his leg joints. Spasticity doesn’t go away on its own: medical intervention is the only way to help manage it. I’d spoken with parents whose children had SPML and after the surgery, their only complaint was that they hadn’t done it sooner. I knew I had to push past my fears and move forward with the surgery. Continue reading →

Shake Your Hips

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Ever since we flew home from New Jersey where Solly had the minimally invasive SPML surgery last June, I have been worrying non-stop about the health of his hips. Hip issues are common in children with cerebral palsy: tight, spastic leg muscles compounded with less time spent weight-bearing not only cause the hips to pull out of the socket, but also make it difficult for the hip sockets to form completely.

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Sister, Solly, and the big ol’ brace

After SPML, we were sent home with the instructions to keep Solly in a brace as much as possible to keep his legs from scissoring and then do another set of X-rays after six months to see if the surgery was a success. For the first six weeks, we had him in a custom hip abduction brace 24/7. Once he had recovered from the surgery, we changed up our routine so he would sleep in his custom brace and wear a SWASH brace during the day or be brace-less under a watchful eye. Even though we were sticking to the plan and our physical therapist assured me we were doing everything possible, I still worried that his left hip would begin to dislocate again, resulting in a very invasive surgery to stabilize both hips.

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So long, 2017!

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Every once in a while, this roller coaster that we call life heads downwards. Nothing is wrong. It’s just that Solly, Bea and I have been sick with the ick for the better part of a month, which means I have less time to work on Solly’s stretches and exercises, and more time to focus on everything that we aren’t accomplishing.

When life gets like this, I feel a little down for a day or two, and then something as silly as a Facebook memory post knocks me out of my funk. Seeing a post from a year ago reminds me just how much he has grown up and come so far in such a short time. What a year 2017 has been!

We started out 2017 with the mindset that it was the year of change, a year to focus on alternative therapies and procedures as a means to propel Solomon’s progress.

Here’s what we did:

  • First, we added a little sister to the mix. Nope, that wasn’t solely for Solly’s benefit, but let me tell you, having a little sister around has been so good for Solomon. For the first several months of her life, Solly was just so curious about her. He learned how to be gentle around her and to simply observe. Now that she’s a very busy 11-month-old, we’re starting to see the beginnings of a very special sibling bond. Sure, they’re already bickering and picking on one another like siblings typically do, but we’ve also caught them in the act of loving on one another – hugging it out and giggling with each other – and it’s moments like this that make my heart soar. I can’t wait to watch them grow up together!
  • Shortly after Bea’s birth, we moved the family to Hilton Head Island for 2 months so we could start Hyperbaric Oxygen Therapy.
  • In early June, Solly had a procedure called Selective Percutaneous Myofascial Lenthening (SPML). In short, this helped loosen up his legs and give them more range of motion.
  • We followed up SPML by adding hippotherapy to our weekly therapy regimen and we also did two rounds of intensive therapy – one in Nashville and the other in Tampa.
  • And even though we had quite the crazy schedule in 2017, we even found time to cancel all appointments for 10 days and take a vacation.

The end result from our year of change? Progress. Lots and lots of progress. Solly went from having no words to making LOTS of noise (he has about 20 words right now) and from not being able to take any steps AT ALL to taking several assisted steps.

He’s sitting up straighter and by himself for longer periods of time, he’s eating so much better and he’s now insisting on holding his bottle and using his own spoon with assistance. He’s made gains in so many areas!

I’d love to say that 2018 will be a low key year compared to 2017, but that simply won’t be the case. Our year of change showed us many things, but most importantly, it showed us the value in alternative and intensive therapies and the fact that we shouldn’t settle when doctors don’t believe in Solly’s capabilities. This means that in 2018, we’ll be traveling for more intensive therapies and to consult with different doctors and specialists. We’ll also be doing another round of HBOT (in Nashville this time, starting next week!), trying stem cell therapy, and adding an additional weekly hippotherapy session.

I think it’ll be a busy/fun/productive/unexpected year and we’re up for whatever the year throws our way. Stay tuned for updates!

The Right Kind of Support

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Before I had Solly in my life, social media was a place to simply share photos, articles, humblebrag, and occasionally whine. Back then, even though I was working in digital marketing, I felt myself growing increasingly annoyed with all the oversharing on all platforms and was particularly ready to pull the plug on Facebook (hello, addiction!).

Then, I had a special needs child. Because of HIPPA, our doctors and therapists couldn’t connect me with other parents going through a similar journey. I connected with a few parents while in waiting rooms, but their child’s diagnosis wasn’t always the same, so I still had questions and craved advice from parents who had been there, done that. So, I started googling and realized how many special needs parents were making those kinds of connections on social media – mostly, Facebook, but also Instagram and Twitter. Over the past three years, I’ve started one support group and have followed and participated in several others. These groups not only help me discover new therapies, new medical treatments, and doctors that can help Solly, but they also give me a place to vent and share wins with people who go through similar ups and downs every day. Plus, I’ve even gotten to meet several local parents who I’ve since met up with in person! (These meet ups are refreshing – it’s always like reconnecting with a long-lost friend.)

A daily walk in the shoes of a special needs parent is certainly not an easy one. But I’ve found that with the right support group, life has gotten a little less scary and, in most cases, I’ve even felt empowered when making decisions for Solly.

If you’re new to a cerebral palsy or stroke diagnosis, or you’re simply looking for help with some of the alternative therapies, here’s a list of my go-to support groups on Facebook:

General

KISS Pediatric Stroke Support (I started this support group with two other stroke Mamas so we could not only connect parents with one another and share experiences, but so we could also follow what non-profits were doing to advance pediatric stroke awareness. We’ve grown to over 1,000 members and have parents from all over the world.)
Mom’s of Pediatric Stroke Survivors (If you’re local to the middle Tennessee area, be sure to join this one. It’s based in Nashville and gives lots of good resources on local therapies and doctors, plus the Mama who started it puts together a meet up every few months.)
CP Warriors, Mommies, Daddies, Grandparents, and Caregivers
2014 Cerebral Palsy Babies Support

Medical & Alternative Procedures

SPML – Selective Percutaneous Myofascial Lengthening
HBOT for Pediatric Neurological Conditions
Parents for HBOT
Stem Cell Therapy for Cerebral Palsy and Brain Injury (Parents Information)
Pediatric Cannabis for CP & Other NeuroMuscular Disorders
Pediatric Cannabis Therapy
Anat Baniel Method Parents/Caregivers

Know of any others I should add to the list? Feel free to send them my way!

As I mentioned above, I’ve also met some parents and gotten great info on other social media platforms. I’ll do my best to put together a post with my favorites, so if Facebook isn’t your thing, stay tuned!

Solly and Bea

Another type of support often seen in our house: sister helping brother!