When we found out about Abby’s intraventricular hemorrhage (IVH) — commonly known as a brain bleed — Everett and I both knew we were looking at the possibility of a lifetime of deficits. It was a dark few days. I remember praying for a sign that night that we found out. I needed some type of reassurance that would help me prepare for whether she was going to live or die. I was having a hard time bonding with this red, fragile, see-through baby bird we’d named Abby. When I woke up a couple hours later, lo and behold, my milk had come in. After a traumatizing c-section at 24 weeks, 6 days and still very ill, I didn’t even know if my body would be able to make milk. I know for some that’s a little too much information, but in that moment, that was my sign, clear as day, that Abby and I had a future.
IVHs are scaled from one to four, with one being the mildest bleed and four being the most severe. If my children are going to do something, they’re going to do it all the way…so of course, Abby’s brain bleed was a four. Here’s a little more information on IVH in preemies from March of Dimes.
Because the bleed occurred on the right side, the damage caused Abby’s issues to affect her left side. The NICU doctor felt that was actually a good thing since the majority of people are right-handed. Score one for the optimist in me! So, upon diagnosis, we were looking at worse case scenario of partial deafness, partial blindness, tone issues, speech issues and weakness on the left side. No problem. Vomit.
With a lot of work, and a successful surgery at Children’s Hospital Boston (that’ll come in a later blog!), Abby has really defied the odds and caught up to her peers. She’s done everything on her own, at her own speed. Her gross motor skills are still a little slow, she was a late walker at 22 months. The funny thing about Abby is her language skills are so advanced that she will tell you she’s going to jump, dance or climb both before and while she is doing that physical activity. Sometimes I think she’s using her brain and mouth to tell her body to do something. It’s really cute and kind of funny at the same time.
Back in March we were told we could discontinue her physical therapy because she had met her milestones. Over the last 6-8 weeks I’ve noticed a shift in her gait though, and a recurrence in the tightness in her left ankle and hamstring. She’s also started to walk toe/heel, pretty much all the time. I must say “walk flat” too many times, because even now Jackson will tell Abby… “Walk flat, Abby!”
So…back to PT. (Which requires a heck of a lot of paperwork and coordination just to get that first meeting again. Ugh!) Today we met for PT at Gosnold’s Hope Park, so Abby’s physical therapist, Kim, could see how she does at the playground and on multiple terrains. When I’m around medical professionals, I turn into this totally different person. I try to suck every last piece of knowledge from them and I can’t stop asking questions. I annoy myself with all these QUESTIONS. Luckily, our therapist and I get along very well. Kim answers every single one and Abby responds well to her supervision. If you have a medical professional that doesn’t fit your personality, get a new one. Life’s too short, your child’s health is too important to waste on someone rude, uninterested or won’t take the time to connect with you.
Physical therapy for a toddler is much different than for an adult. Kid therapists:
- Use play to introduce new skills.
- Set goals that deal with typical milestones (i.e. sit up unassisted for 10 minutes at a time, walk from one side of the room to the other, climb steps).
- Know the science behind milestones. The can help children that are struggling with a skill to take it one small step at a time.
- Introduce stretches and activities that challenge your child to advance and gain confidence.
- Teach parents new lessons to practice at home between therapy sessions.
Today Kim noticed Abby’s toe walking immediately. Boo. And she noticed that Abby is leading with just her right foot again when climbing stairs and bending her right leg much more than her left leg when she squats. Double boo! After 45 minutes at the playground, her recommendation was for Abby to be fitted for braces on her ankles. After a few minutes of letting this sink in and telling myself to suck it up, I started in with my questions about braces. No matter how the news affects you, as a Mom, you have to suck it up, advocate and cry about it later!
It’s always a little frustrating to add in more doctors and issues, but Kim and I both feel it’s a temporary fix to retrain Abby to walk heel to toe and to loosen up her ankles. I trust our therapist’s expertise. She’s been with us for a year and a half so she really knows Abby, her temperament and her limitations. Ev and I kind of felt this was coming over the last few weeks. I’m always proud of Abby and will love her no matter what. If it takes braces, some funny looks and initial discomfort, we’ll get through it just fine. This is just the small stuff. Life is all about perspective.