Hippotherapy

July 3, 2017July 11, 2017Leave a comment

Three weeks ago, Solly had his first hippotherapy session. Ever since Solly turned two, the age when children are generally allowed to start horse therapy, I have been anxious to get him on a horse.

In December, he had an evaluation at Saddle Up!, a therapeutic riding center in nearby Franklin. In the short 20 minute evaluation, I got a clear picture of how beneficial hippotherapy could be for him: he smiled and giggled while on horseback as the horse moved at a walk, halted, and circled. Though it may not seem like those simple actions are doing much, they are, in fact, building much-needed core strength, balance, and movement patterns in Solly’s body and brain. Unfortunately, at the time of our evaluation, Saddle Up! was undergoing some therapy staff changes and as much as the physical therapist who completed Solly’s evaluation wanted to begin treating him, there simply wasn’t a spot for him and he was placed on the waiting list. Surprisingly, there are only two therapeutic riding centers in Nashville: Saddle Up! in Franklin is a quick 20 minute drive and Full Circle Therapy in Smyrna is a much father trek. I preferred to not spend too much time driving to and from therapy appointments so I considered Saddle Up! our only option.

Solly’s evaluation at Saddle Up!

Fast forward six months, in the recovery room for Solly’s SPML surgery, his orthopedic surgeon told us the best way for his hips to rebound and strengthen after surgery is to think of putting him on a horse. I’m sure he meant this figuratively – creating a horse shape between his legs, especially any time he is out of his brace. For those of you who know me personally know that I’ve always been a horse-crazy nut, so a light went off in my head as the doctor said this and I took him quite literally – it was time to get Solly on a horse! I decided extra time in the car was worth the benefits of this type of therapy, so I got in touch with Full Circle Therapy. Days later, we completed Solly’s evaluation and were able to find a spot on his new therapist Jennifer’s hippotherapy calendar. We started immediately.

We are now three therapy treatments in and we’ve have already seen some benefits. I cannot wait to see how Solly continues to thrive with his weekly riding therapy and hear both his and Bea’s giggles when they both get to see Solly’s therapy pony each week.

Solly’s all smiles on Cheyenne, his therapy pony

Life Down South

November 29, 2015Leave a comment

It’s been a busy two months. Crazy busy full of doctor’s appointments, follow ups with specialists, therapy evaluations, regular therapy appointments, and new prescriptions. Oh, and did I mention that we also sold a house, bought a house, and moved a baby, two adults, two puppies and a horse to the South? And celebrated Sol’s first birthday?! Yep. Crazy busy!

As busy as its been, though, our move to the South has taught us to slow down, stop multitasking our lives, and focus on the important stuff. I’ve decided to put my career on hold and make Solly my sole priority. I’m now able to give all appointments and Sol-moments my full attention rather than try to fit in a call here and a meeting there. It was – and continues to be – a struggle at first as I felt like I’ve lost a major part of my identity, but I’m starting to find myself more relaxed and, most importantly, more appreciative of all the time I get to spend with Sol.

Life hasn’t been easy these last couple of months. There’s been good days and there’s been bad days. The roller coaster of emotion continues. However, we’ve gotten connected to some amazing doctors at Vanderbilt, we’re working with some pretty great therapists, and we’ve gotten some answers and guidance that we previously hadn’t had. I’ll give a full update on the medical and therapy front soon, but for now, here are some pictures of Sol enjoying life down south.

Mid-day snack in Brentwood

Introducing Sol to Noshville

Smash cake!

Sol loves his swing

Snack with Bentley

Tummy time

Thank you for following our journey and for your continued thoughts and prayers. We appreciate you!

Catching Up

August 10, 2015August 11, 2015Leave a comment

Warning: This is a longer post than most!

Hanging with Dad in Jasper, AB!

Our little family of three spent the last two weeks trekking around three national parks in Canada. It was such a refreshing break from our one million weekly appointments. Solly loves to travel and particularly likes it when there is turbulence on the airplane. He giggles and laughs while I am white-knuckled and trying to remember to breathe! We enjoyed much cooler temperatures, nearly daily hikes, and got to spend time with close friends and Sol’s Nana and Papa, all who joined us on our vacation.

As I mentioned in my last post, the past couples of months have been really, really tough on me, and this is a big reason why I haven’t updated the blog. After Sol turned 6 months old, he really stopped progressing as quickly as he previously was – or as quickly as I perceived him to be progressing. The most worrisome part was he became exceedingly difficult to feed, some days taking in only a bottle or two. As you might expect, with all the eating he wasn’t doing, he stopped gaining weight and plateaued around 14 pounds. This sort of thing is scary for any Mom, especially for one dealing with a stroke survivor.

We’ve teamed up with a number of new doctors to try and solve the issues and get back on track, and it seems like we are. Sol seems to be eating more consistently and, at our last check up, finally put on some weight. As I write this, Mike is feeding Sol solids while Sol giggles away. With some luck, he’ll continue to pack on some weight and be able to chip away at getting stronger and meeting more milestones. We need him to continue to grow so he can get stronger and so his brain can make more connections. Now, at 10 months old, Sol is developmentally around where a 6 or 7 month old might be.

Here’s the breakdown of where we are:

Medical

The doctors appointments have been oh-so-plenty. On the plus side, at the end of May, we were able to wave goodbye to hematology after Sol’s third round of blood tests came back normal. No clotting disorders and no indication that he could have another stroke – nothing to worry about. The hematologist mentioned that he is heterozygous for Leiden Factor V, which is a clotting disorder if homozygous, but it had nothing to do with his stroke and won’t affect anything for him moving forward.

We gained some new doctors in the past few months, namely a nutritionist, a GI doctor, and an Ears, Nose, and Throat doctor. We began seeing the nutritionist and GI doctor in June after we noticed the eating issues, and have seen them a total of two times so far. In our initial appointment, they drew blood to check for any food allergies and intolerances, and thankfully, those tests came back negative. Thinking that Sol’s eating issues could be related to an upset stomach or severe reflux, which is common in kids with CP, they switched him to a new, hypoallergenic formula and a new, stronger reflux medicine, Prevacid. We are fortifying his formula to give him some calories with hopes that he’ll start adding some rolls of fat to his tummy. The Ears, Nose, and Throat doctor looked at his frenulum, which was a tad shorter than it should be, giving him slight tongue-tie. Even though he could eat as is, the ENT doctor decided to snip his frenulum so his tongue could move freely, just in case that was causing an issue. In the weeks since we last saw all three doctors, Sol has been eating his bottles very consistently, and is starting to eat more solids – a step in the right direction, for sure!

We’ve also had a check up with our ophthalmologist, who noted that Sol has strabismus (lazy eye) in both eyes, making his eyes turn outward slightly. When we saw the neuro ophthalmologist much earlier this year, he predicted that this would happen as Sol’s vision continued to mature. There’s a chance that the double strabismus could self-correct, so we aren’t going to worry about it now and will check in with him in a few months.

There are no other major doctors appointments scheduled until September (woo!), so our focus in the next month is lots and lots of therapy.

Therapy

Workin’ those arms

With those one million doctors appointments came a million therapy appointments – and new therapists! We are now seeing PT three times a week, OT once a week, Speech Therapy (ST) twice a month, Vision Therapy twice a month, and Developmental Therapy once a month. In other words, we’ve got a full calendar!

In PT and OT, we are focusing on getting Sol to bear weight in his arms, particularly his right arm, as well as sitting, transitions, and engaging his right hand. Solly is definitely getting stronger! He sat independently for the first time around Father’s Day, but struggles to sit up straight, especially since his arms and trunk are weak. On his tummy, he is kick, kick, kicking his legs so hard, bringing his legs up and underneath him, and alternating leg kicks. I just know that once we strengthen his arms and trunk, he’ll be zooming around and I’ll have trouble keeping up! He’s also starting to squirm and pull his body forward when he’s on his belly. His right side has really woken up over the past couple of weeks. He’s now able to move his shoulder and balance on both elbows, something that was not possible just weeks ago. Our next goals include sitting even more independently and moving in any way with four-point crawling being the end goal.

Sol’s vision continues to improve weekly. He is now looking at objects and reaching for them with his left hand, and he can turn his head and look at you briefly when you speak to him. We’re working towards having him hold his gaze for longer periods of time.

Speech Therapy and Developmental Therapy both are the result of Sol’s eating issues. While Developmental Therapy technically covers all therapies, we are focusing on eating and developing oral muscles in both ST and DT as Sol’s facial and oral muscles are weaker on the right side. He is doing so much better with his eating, now consistently eating 3 – 4 full bottles a day as well as one packet of solid food.

What’s Next

Today, I am meeting with one of the directors of Georgetown’s Center for Neuroplasticity. We’ve spoken with her a couple of times about getting involved and driving awareness of pediatric stroke. Today’s meeting is all about Sol: I’ve shared his MRI images with her and she will walk me through them today so I understand where Sol’s brain damage is and what type of event caused it (something that was never clearly explained while we were in the NICU).

Other than that, we are working the therapy to help Sol get caught up on his milestones – and, of course, having lots of hugs, giggles, and kisses along the way!

6 months!

April 9, 2015April 9, 20153 Comments

Hey Dad, I’m 6 months old!

I had trouble getting started with and completing this post. Today is Sol’s 6 month birthday. Part of me is so excited that he’s been with us now for half a year and continues to improve and recover really well from his stroke. The other part of me hates the monthly milestones because they force me to realize how far behind Sol is from a “typically” developing child. In reality, he’s only a month or so behind, but it’s very hard for me to be ok with the delays, particularly since we don’t know how he will end up recovering. (I’m sorry for the brutal honesty and not-as-positive tone here – it’s just part of this roller coaster ride we call recovery.)

Here’s a quick update on where we are:

Medical

Just a cool dude in a fish hat

As you may recall, in addition to our pediatrician, we see a hematologist, a neurologist, an ophthalmologist, and a neonatalogist as a follow up from our NICU stay. We’ve found out from our most recent visit to the hematologist that Sol is not at risk for blot clotting, so another stroke is very unlikely. Whew. Our neurologist has decided that, since Sol has not had any seizures since he was in the NICU, that he can gradually outgrow his anti-seizure medication (Keppra) dose over the next 6 months, with the ultimate goal of being removed from the drug altogether when he’s a year old. She was concerned over his slow head growth and noted that while it’s likely due to extensive brain damage as a result of the stroke, we may want to do xrays of his head just to make sure his sutures have not prematurely closed and are hindering brain growth. I plan on chatting with our pediatrician next week to make sure this is necessary before moving forward. My goal is to help Sol progress as much and as quickly as possible, but I definitely don’t want to put him through any additional testing or procedures unless it absolutely has to happen.

This month we also saw a neuro-ophthalmologist who gave us a great diagnosis on Sol’s vision. Solly keeps looking around more and more each day, and is really improving his hand-eye coordination on the left side.

Therapy

Our therapy plan is as follows: PT twice a week, OT twice a month, and Vision Therapy twice a month. In PT and OT, we are continuing to focus on getting Sol to use and strengthen his core muscles and right arm so he can learn to sit up and get ready to crawl. He can now hold a

Rattles are delicious

supported seated position quite well, and loves it when we prop him up on an exercise ball and bounce him. In fact, he loves moving so much that one of his therapists says his theme song is “I like to move it, move it.” Sol’s arm and leg muscles are becoming more tight as a result of the stroke, so we stretch him out every day. We are also working on encouraging Sol to keep his right hand open and use it to hold toys and grab his toes. While he isn’t grabbing his feet independently, if we stretch him so his feet dangle in front of his face, he’ll grab them and put them in his mouth. This is huge progress because it means Sol’s tight muscles are getting more limber!

Vision Therapy is slightly less intensive since it’s difficult to instruct Sol how to use his eyes and vision. Instead, our therapist observes him every two weeks and notes how much he’s improving every time, especially focusing on how attentive he is to surrounding toys and faces. We’re starting to see a remarkable improvement in his ability to keep his eyes in midline, and hope this continues to improve over the next few months.

The next major milestones we have in sight are sitting independently, pushing up from his tummy to his hands and knees, and rolling from his back to his tummy.

One, Two, Three, Four

February 21, 2015February 21, 20151 Comment

This post is slightly overdue, but I’ve spent so much time just enjoying Sol that I haven’t had as much time to sit and write. I can’t believe our little muffin turned four months old this past week! He spent it in the best way – being loved on by his grandparents, Bebe and Gramps, and his Auntie Jenn.

Sol loves his Bebe!

Snoozin’ with Gramps

Unfortunately, turning 4 months old means vaccinations, so Sol had to go to visit the pediatrician. The good news is that he is continuing to gain weight and grow, even jumping percentiles in height. Mike was out of town for work, so I dragged Sol’s Bebe along with me for moral support while Sol got his shots. I didn’t need it – Sol barely let out a cry when he got two shots in his legs and he was a happy camper most of the day.

Over in therapyland, we still have many of the same goals, but we are making great progress and are adding to them. In PT, we are working on strengthening Sol’s core muscles to help with his low tone and also balance out his very strong back muscles. We’ve been doing lots of tummy time, rolling, and exercises on a medicine ball for his core muscles. He’s doing a great job of engaging his core, particularly since he’s now always bringing his hands – and toys – to his mouth. These muscles will also help him gain even more control over his head, which he is starting to hold up on his own for short periods of time. We’ve just begun working on a supported seated position, which will continue to improve as Sol gets stronger.

Bella gives lots of tummy time encouragement

Lights!

In OT, we’re very focused on Sol’s right hand since it is his weaker side and he naturally holds it in a fist more often than his right. To help relax his hand, we’ve started using a Mckie Splint, which encourages him to hold out his thumb, relaxing the entire hand. Once his hand is open, we encourage him to use it to hold toys, reach, grab, and stretch.

Next week, we’ll be adding Vision Therapy to the mix, twice a month. I’m happy to report that Sol’s eyes are consistently moving to midline and to the right, and he’s starting to watch faces, toys, and other movement – a really positive step!

While I’m so excited by Sol’s progress in PT and OT and with his vision over the past month, I’m feeling even more accomplished because I have learned how to sit back and enjoy my baby. Previously, I was amped up by all the therapy we need to do and focused on milestones and where Sol was – and wasn’t – that I realized I was forgetting to enjoy my time with him. This is so unfortunate because he is one stinkin’ cute baby. Now, I am taking more time just to sit and chat (ok, more like “coo”) with him, which helps me realize what an amazing and handsome little guy he is. Life is good.

Sol the Man

A blog about life after Pediatric Stroke

Tag: Physical Therapy