Acceptance

This Fall, we’ll spend an extended period of time in Roanoke, Virginia for an intensive therapy at the Virginia Tech Carilion Research Institute. The intensive will be 4 weeks long and includes therapy for up to 6 hours per day. Talk about an intense intensive! A part of the intensive therapy program will include Constraint-Induced Movement Therapy (CIMT) where Solly’s stronger side (the left side) will be constrained to force the weaker side to take over.

img_1324

Solly during our first round of CIMT in Nashville

We previously had 4 weeks of CIMT in Nashville at Vanderbilt Pediatric Rehabilitation right after Solly turned two. While we saw some gains (i.e. more movement in the right shoulder), because Vanderbilt’s approach was to cast the child and send them home without intensive therapy, aside from an extra hour-long appointment or two during the week, we did not experience a ton of progress with our first round of CIMT. While this approach may work for children with mild cerebral palsy, we found that it isn’t as effective for moderate to severe cases, like Solly’s.

With CIMT, the more therapy you can do while the stronger side is casted, the more effective the therapy will be. Given the intensive model available at Virginia Tech, I am eager to see how much awareness Solly will gain of the weaker side. Continue reading

A Nanny for Two Adorable Children

Why don’t you guys take a break tonight from poopy butts and sick kids and go have some dinner and drinks. I can stay till 9 so you’ll have plenty of time for dessert too!

Mike and I received the text above from one of our nannies while I was en route to Solly’s first-ever dentist appointment, after a sleepless night thanks to a teething and diaper-rashed Bea. Texts and conversations like this are fairly normal from her and our other nanny: “Camie, go for a run! I’ve got the kids. Go ride your horse. Go take a nap! TAKE A BREAK!”

To them, nannying is a job, yes, but in the 15 months and 8 months that we’ve employed Nanny Jen and Catherine, respectively, each woman has become an extension of our family. They love our babies, go above and beyond to learn handling methods, feeding techniques, equipment, doctors’ and therapists’ names, and help me with research and brainstorming ideas for just about everything. They get what both of our babies need and also act as a continuation of me around the house, doing laundry, wiping the counters, letting the dog out, basically doing whatever needs to be done to keep our household running smoothly.

I feel so incredibly comfortable leaving my babies in their care. I don’t know what I’d do without them.

When we moved to Nashville, we largely chose to move so we’d be closer to family for some much-needed support. What we didn’t realize was how much support we needed.

Continue reading

Living in the Past

I try not to be a dweller. I like to live life looking forward, basking in positivity and finding the good in any situation. Anything that has happened occurred simply to mold me into the person I am today, so there’s no reason to have regrets and worries about the past.

This tends to be my attitude towards any event, except for the day of Solly’s birth. Even three years later, thinking back on that day and the following month in the NICU puts a wrench in my stomach and tears at my heart. It’s hard to revisit that time. I can’t even look at the blog posts I wrote while we were in the NICU. I just can’t. Not yet.

SollySmileHowever, when my sweet friend, Laura, asked me to share Solly’s story as an Inspirational Kid for her website Paisley’s Purpose, I knew I had to man up and revisit that time. Even if it could give solace to just one other Mama following a similar path, it would be worth it. So, in just over 1,000 words, I revisited those hard first days in our journey with Solly. The post goes into a little more depth than I’ve ever written about that day, so for those who are newer to our story, it might be worth a read. Read it here.

The Right Kind of Support

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!

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.