Quick Update: The Hip Situation

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

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

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.

Continue reading

Word of the Day: Apraxia

Definition: Apraxia is a motor disorder caused by damage to the brain (specifically the posterior parietal cortex), in which the individual has difficulty with the motor planning to perform tasks or movements when asked. (Source)

I remember the first time I heard the word “Apraxia” mentioned as it applies to Solly. It was back in D.C. and Marie, our vision therapist, was holding a teeny tiny baby Solly. She placed him on her left side, trying to get him to move his eyes to look at her. It was difficult. When Solly was born, his eyes were stuck staring to the left side, and for the longest time, I worried this would always be the case. As she continued speaking to him, he started to dart his eyes over to the right side to check her out. It was progress. “It’s almost as if he has visual apraxia,” she said, meaning that he could see, he knew he needed to look to the right to see her, but his ocular muscles weren’t understanding what his brain was telling them to do.

Over the weeks that followed this particular appointment, we continued to work with Solly and his visual control began to improve. Today, if you were to meet Solly, you might see his eyes dance around as he focuses on you, but for the most part, he has good control over his eye movement. We know he sees (his Nana might tell you that he doesn’t miss anything!) and other than some possible peripheral visual field loss, the only thing he struggles with visually is this control over his eye muscles. In my book, since his control has gotten much, much better since those initial days, it’s not that big of a deal. He compensates quite well and it’s just something we’ll continue to watch and find ways to support as he grows up.

While the idea of difficulty with motor planning was often mentioned, especially with our new physical therapist, the term “apraxia” didn’t come up again until we were in Florida for our intensive therapy. While there, the physical therapist working with us watched Solly and suggested we have an evaluation with one of the speech therapists at Lampert’s who has years and years of experience with kids just like Sol.

She was amazing. If I could have packed her up and brought her back to Nashville with us, I would have.

She took tons of notes about Sol’s medical history, watched him eat, and asked him to move his mouth and tongue in certain ways. She explained that he has some apraxia, making it difficult for him to manipulate food in his mouth and move his mouth and hard and soft palettes to make different noises – or, to talk. She gave us a handful of exercises and stretches for Sol’s cheeks, lips, and tongue that will help bring awareness to each part of his mouth to help improve feeding and speaking. After just a couple of days, Sol was eating new textures, comfortably and easily. He’s also gained some weight since we met with her!

Difficulty with motor control affects almost everything Solly does – walk, talk, and grab for and look at objects. But that doesn’t mean that he can’t do them. We just need to teach him how and be patient with him as he figures out how to do what his brain is telling his muscles.

Years ago, I would have freaked out when I heard apraxia as a possible diagnosis. (Yes, it’s still a “possible” diagnosis as it’s not officially on his medical records, yet.) I probably would have jumped in bed, pulled the covers over my head, and cried non-stop. Now, I look at it as a blessing. It helps me understand how he’s processing – and not processing – what we’re teaching him, it tells me what types of people we need on his medical team, and it also reassures me that progress IS possible.

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Peekaboo! 

Difficult Decisions

We had to make one of the hardest decisions yet for Solly recently. We opted for Solly to have a (non-invasive, preventative) surgery.

It was one of those decisions where I was constantly questioning myself, I felt others questioning my decision, and I didn’t have complete support from Solomon’s doctors. In other words, it was a completely agonizing decision. But, through the entire decision-making process, I felt my gut telling me that I was right, we were doing the right thing, and in the end, we had proof that we made the right decision.

Let me back up…

The Backstory & Consultation

Back in February, we were at an Anat Baniel Method intensive. Our practitioner asked us if we’d heard of the procedure ‘SPML’, thinking it could be something that might help Solly. She gave us the contact information for the two (!) doctors that perform the procedure in the United States and encouraged us to contact them to see if Solly might be a candidate.

We went home and did a little research and found out that ‘SPML’ stands for Selective Percutaneous Myofascial Lengthening. It’s a non-traditional, non-invasive procedure that releases the connective tissues surrounding the muscles. The surgeon uses what is essentially a needle to poke holes in the tissue. No cutting of muscles or ligaments is involved, so recovery is typically quick. (Click here for a more in depth conversation about SPML.) Mike and I saw before-and-after videos of children with stiff muscles who gained the ability to move freely after surgery. We knew Solly needed a chance of that same freedom of movement: a consultation with one of these doctors seemed like a no-brainer.

The two doctors who perform this procedure are Dr. Nuzzo in Summit, New Jersey and Dr. Yngve in Galveston, Texas. We chose to consult with Dr. Nuzzo because he was the one who developed this procedure as well as several other preventative surgeries to help children with cerebral palsy. We sent in the required spine and hip x-rays as well as a few videos to show Solly’s range of motion and movement patterns. Here’s one video that shows the level of tightness in Solly’s legs:

Within the week, we received a response directly from Dr. Nuzzo, who said that not only was Solly “mummy bound” and “in paralytic jail”, but the tightness in his legs was pulling his left hip out of the socket, potentially damaging the left hip socket. He recommended quick action to avoid further dislocation, suggesting that we not only do SPML to get him out of paralytic jail, but also do an additional surgery called SLOB (Supero Lateral Outcropping Bone-graft) which would essentially extend his hip socket to keep the ball of the hip in place. It was a more invasive surgery than SPML and recovery would include several months in a custom, removable hip brace. (Another Mom has written extensively about her daughter’s SLOB procedure, which you can read here.)

At only 7 months old, Solly’s left leg was already pulling inwards and scissoring

Neither suggestion surprised us. In fact, we’d noticed Solly’s left leg scissoring since he was only a few months old. In recent days, even with the improvements we saw with HBOT, Solly’s legs had been getting tighter and tighter, and with our developmental pediatrician, we’ve been monitoring his left hip over the past year. Both of these developments – spasticity and hip dysplasia – are very common in children with cerebral palsy. The traditional treatment plan includes ongoing botox injections to loosen the muscles – these injections typically only last 3 months and can be painful to get – until therapy develops correct movement patterns to stabilize the hip or until a very invasive VRO (Hip Varus Osteotomy) surgery is needed. The VRO is a nasty surgery where the leg bone is cut and repositioned into the hip socket. Recovery includes an almost full body cast for 8+ weeks and because the surgery actually shortens the leg, often both legs are done at the same time. Recovery is long and painful. This is something we never want Solly to have to go through.

Dr. Nuzzo’s approach not only prevents the need for VRO surgery, but it can increase range of motion and give children a chance to develop better movement patterns so future surgical intervention is at a minimum. While Solly’s doctors wanted him on the path of Botox injections and eventual VRO surgery, we opted to follow Dr. Nuzzo’s advice and scheduled him for SPML and SLOB surgery on June 6th.

The Surgery

A mere week after we came home from Solly’s HBOT treatments, Mike, Solly, Bea, and I boarded a plane for New Jersey where we planned to reside for 9 days. We had a pre-operative appointment scheduled for the day before surgery and expected Solly to remain in the hospital for 3 to 5 days after the procedure to recover. Though we were nervous to have this procedure done, when we met Dr. Nuzzo in person, those nerves quickly subsided as we met a very optimistic doctor whose philosophy was to do as much preventative work as possible for children with cerebral palsy.

Snuggling with Dad in the pre-op area

On June 6th, Solly’s surgery was set for 1pm. After we were escorted back to the pre-op area, Dr. Nuzzo met us and explained that once Solly was under anesthesia, he would do a series of x-rays to confirm his hip position and then perform the SPML procedure. After that, he would take another set of x-rays to see how SPML affected his hips before proceeding onto SLOB. The combined procedures were expected to take about 3 hours, but Dr. Nuzzo advised us to stick around incase he needed to give us any updates. I carried Sol to the operating room where a team of nurses and the anesthesiologist were waiting, and I was able to hold his hand and talk to him while the anesthesiologist put him under.

Then it was a waiting game.

Mike ran back to the hotel to check on Bea who was getting in some quality time with Mike’s parents. (Thank you Bebe and Gramps for flying up to help us!) I stayed in the hospital waiting room and after what seemed like two million years – but was probably only about 45 minutes – the nurse overseeing the waiting area called me up to her desk. Dr. Nuzzo was on the phone.

Struggling to wake up from the anesthesia

He said to me, “Well, this is unexpected, but I did the SPML procedure, and Solly’s hip popped back into place. It’s in there snug enough that I’d like to stop here, try putting him in a brace for a few months, and see if we can’t get it to stay there without further surgical intervention.”

Holy cow, we were ecstatic! We hadn’t even considered this possibility and were thrilled that Sol didn’t need an invasive surgery.

The Aftermath

Once we got home, we didn’t push Sol to do any physical therapy for a couple of weeks while he recovered. At Dr. Nuzzo’s suggestion, we got him into hippotherapy and focused our efforts there as well as in ABM intensives.

We are now 5 weeks past the surgery, and the results have been better than we could have ever imagined. Before surgery, Sol couldn’t stand at all, let alone take steps. If we were to put him in his walker, his legs would stiffen to the point where it was hard for us to move them. We had started to lose hope that we could find a way to help him. Now, when in his AFOs and hip brace, Solly can stand and balance himself as he holds on to something. Here’s a short video of him standing in a train at the zoo, taken just a couple of weeks after surgery:

And in the past ten days or so, he even started taking steps in his KidWalk walker:

Next, we’ll take him to a weeklong Therasuit Intensive Therapy at the Full Circle Therapy Center. We hope this therapy will continue to help him recover and thrive after SPML.