Another Walk in the Park

We struggle with motivation. I always get a little envious when I see other babies just sit and play with toys or get up and walk toward their favorite stuffed animal. Bea would do just about anything for an episode of Sesame Street or for her Elmo stuffed animals. Nothing like this ever works for Solly. He’d rather just sit and chew on whatever is in his path than press buttons on a toy or play with a toy car.

This has made therapies – both in a clinical setting and at home – rather difficult. It’s impossible to work on Solly’s strength or functional movement if all he wants to do is hunker down and chomp on a puzzle piece. If a 3 year old doesn’t want to do the work and isn’t interested in anything that will trick him into doing the work, how can we make any gains?

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One, Two, Three, Kick, Kick, Kick

Solly’s schedule is filled with endless therapies and doctors appointments, sometimes up to 4 appointments a day. Last week, I think we hit an all-time appointment record with 15 appointments in one week! While we’ve adjusted his therapies to try and have as many “fun” therapies as possible and Solly generally comes out of each appointment with a big ol’ smile on his face, I still sometimes worry that he’s missing out on typical toddler fun activities. I find myself wondering, how can I get my special needs kiddo involved in something that other kids his age or of his ability might be interested in that isn’t therapy?

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Whatcha Say

“May I ask what he has?”

I blinked my eyes several times. Did I just hear the Starbucks barista right? Did she just ask me what condition my son has?

“Excuse me?” I said, with a smile.

“What does he have?”

“Oh, Solly? What does he have? You mean …….. He has CP,” I said quietly, nervously. I was hoping that’s what she meant by her question, not wanting to make her feel awkward if it wasn’t.

“Oh, CP! My oldest has Asperger’s. I’m a special needs Mom, too,” she replied. “Bye, bye, Solly. Come back, soon!”

This conversation was such a breath of fresh air that I literally skipped back to the car with my chai tea latte in one hand and Solly in my other arm.

When you have a special needs child, every outing has its share of stares. It used to bother the heck out of me and keep me inside the house. Now, I’m so used to it that I don’t notice, I don’t have time to dwell on it and, quite frankly, I don’t care if a handful of strangers stare at my obviously delayed and different child. However, one of the hardest parts of being a special needs Mom is feeling different and outcast from the general public, and the stares certainly don’t help. The problem, I’ve realized, is that unless you are a special needs family, you simply don’t know what to do or say when you see a child or person who’s a little bit different. And, instead of saying something to that family or child, you might wonder “what’s wrong with that child” and worry about what to say and decide it’s best to say nothing at all.

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One Giant Leap for Sol-kind

This morning, we packed up a small 3 bedroom condo in beautiful Belleair Beach, Florida, buckled the kids into the car, and headed into our final day of Therasuit Intensive Therapy at Lamperts Therapy Group. For the past three weeks, Solly has been working his tail off three hours a day, five days a week. Therasuit is very similar to the intensive therapy we did back in July, except this round was much longer, much more intense, and very regimented.

​Every day, therapy began at exactly 9am. For the first hour, Solly started out laying on a table, where Gina, his physical therapist, would apply heating pads to his legs and hips. She’d stretch out each limb, paying super close attention to his legs, hips, and right arm since that’s where he tends to get the tightest. She would then move Solly through a series of table exercises where she’d attach a small weight via a pulley system to his leg or arm and, by lightly tapping him, encourage him to move his limb in a certain way. 

Workin’ those glutes!

After his stretching and lifting exercises, Solly would either work on walking or on core and arm strength for the remaining two hours. Both of these activities were done with Sol wearing a therasuit, which is a compression garment and a series of rubber strips placed to bring awareness to specific areas of the body. For core and arm strength, she’d move him to the floor to work through sitting, side sitting, tall kneeling, quad position, or sit-to-stands. Walking was done either in a gait trainer or on the treadmill.

Hands and knees – not our favorite

The entire three hour session was tiring for Sol. We made sure to take several breaks for hugs and snacks, but, in true Solly fashion, much of the session was completed with a smile on his face. 


Results from this intensive therapy can continue to be seen for weeks after completion, but here’s what we noticed so far:

  • Perhaps most excitingly, Solly took his first-ever unassisted steps in a gait trainer!
  • When Sol walks, his legs tend to scissor due to high tone. Part of teaching him how to walk includes proper foot placement to avoid scissoring. Over the final days of the therapy, it seemed that he became much more aware of where his body is in space. We noticed that his foot placement improved drastically, so much so that he could keep his legs from scissoring while walking in the gait trainer.
  • Improved core strength altogether, including arms!

First unassisted steps in a gait trainer

While these gains may seem like itsy bitsy baby steps, being able to walk in a gait trainer on his own is a HUGE gain towards independence. We’re excited to head home, continue the home program that Gina prepared for us, and allow Solly to spend more time in the gait trainer. We hope this will be the first step to him really taking off with walking!

Sweet Bea

For some time, I’ve wanted to write something about having a baby after a having perinatal stroke survivor, but even nine months after having Solly’s little sister, I am still struggling to wrap my mind around the experience and put it into words. Deciding to try and get pregnant after having Solly was just one hurdle: the nine months that followed was a long stretch of managing self-blame, worry, and anxiety while trying to relax and “enjoy” the pregnancy. Oh, and on top of that, I was still taking Solomon to endless appointments, researching treatments for him, and planning alternative therapies for the year.

After Solly was born, I couldn’t imagine having another child. Even though I knew that nothing I did caused his strokes, I couldn’t help but blame myself for what happened to him at birth. My body was supposed to keep him safe, but instead it let something awful happen to him. How the heck could I risk this happening again?

But, as Solly began to grow and thrive, Mike and I knew that we wanted to add more love to our family and we decided to rely on faith and medicine to try and give him a sibling as quickly as possible. After interviewing several OB/GYNs (mad love to my sister for connecting us with the right one) and having extensive tests run which found that I have multiple clotting disorders, we were on our way to baby number two in a high-risk pregnancy. I was on extra plant-based folate, a daily baby aspirin, and a daily shot of Lovenox, all steps to reverse any potential clots. At first, we saw the doctor every four weeks, then after 20 weeks, it was every two weeks, and then at 33 weeks, we were seen twice a week with ultrasounds each time to make sure the baby was still growing. I had a lot of great support, especially from other Moms who’d had a baby after a stroke survivor, however at each appointment, I was convinced the doctor would find something wrong or wouldn’t be able to find a heartbeat. (I think Beatrix caught wind of my anxiety, because during an ultrasound at 14 weeks, she threw her hand above her head and gave us a thumbs up.)

For the two months leading up to Bea’s birth, I basically lived in a yoga studio, attending several prenatal yoga classes each week because it was the only time my mind could relax and I felt like I could connect with the baby growing in my belly. Aside from the month when Solly was in the NICU, it was the most anxiety-filled time of my life.

At 38 weeks along, we went in for a scheduled cesarean. I pumped myself up: I was ready to have our little girl. I was in great spirits the morning of, despite Solly having kept both Mike and I up most of the night before. I was still in great spirits as we registered for our hospital stay and as the nurse brought us up to the pre-op area and even as the anesthesiologist walked us through possible complications (oh, you know, just possible paralyzation from the mid-back down, nbd) that could arise with the combination of my clotting disorders and the spinal block needed for the c-section.

When the nurses started to ask about Solomon, though, and our birthing experience with our first child, I lost it. I couldn’t stop the tears from flowing. At that point, I realized how much I had been blaming myself for Solly’s strokes and how much I hadn’t dealt with that guilt.

For any Mama reading this who’s struggling while pregnant after having a perinatal stroke survivor, here’s some advice from someone who’s been through the experience:

  1. Find a supportive obstetrician. I cannot stress this enough. Our doctor was calm throughout our pregnancy and never made a big deal over anything, which helped keep my anxiety in check. Before we went back for the cesarean, he prayed with us, which is exactly what I needed in the moment, and he even joked with us a bit during the procedure, which is exactly what I needed in THAT moment. Do your research, interview, and go with the doctor that feels right to you. Don’t settle.
  2. Find emotional support. If you aren’t getting the support you need, find a good therapist to help you sort through your emotions. I didn’t do this until after Bea was born (because only weirdos get therapy, right?) and it’s my one regret of the pregnancy. I think I would have been able to relax and enjoy the pregnancy had I seen a therapist during it.
  3. Get advice from other Mamas who’ve been in your shoes. A Facebook group that was immensely for me was Pregnancy After Perinatal Stroke.
  4. Work it out. Yoga or any other exercise will help keep your mind in a good place.
  5. When it’s time to give birth, tell the hospital staff about your previous experience. Because I broke down when telling the nurses about our birth experience with Sol, they filled in any staff member who would work with us during our hospital stay. There was never any question if I got paranoid about something Bea was doing or not doing and every staff member approached us with lots of compassion.

Despite having nine months full of anxiety and a slight breakdown before giving birth to her, Bea’s birth ended up being easy with no complications. We couldn’t be happier with the bond that’s developing between Solly and Bea and we look forward to watching them help each other grow and thrive.