Honestly, I am sharing this a day late because we’ve been on vacation celebrating a friend’s wedding this weekend and because I forgot that yesterday was the three-year anniversary of Grace’s ETV/CPC surgery at Boston Children’s Hospital. Earlier this week on vacation I got an email to check in for Grace’s upcoming appointment at Children’s Hospital Colorado. I paused for a second and thought, “Wait, why does she have an appointment?” These appointments used to come with a lot of anxiety, stress, at-home head measurements, and fear of the unknown. Now I forget they’re even happening.
While sitting poolside this week I was overcome with gratitude that three years after Grace’s surgery, we can leave the kids with the grandparents, go on a four-day vacation, and not worry. I vividly remember after Grace got her diagnosis Spencer and I were laying in bed, talking about what the future would look like. We talked about shunt failures, emergency MRIs, googling “neurosurgeons near me” anytime we left the state, and preparing our families to always be on the lookout for acute symptoms. Here we are now knowing that the ETV/CPC changed not only Grace’s life, but ours too.
Three years post surgery looks pretty good (knock on wood)! Last year Grace was evaluated by our school district to see if she qualified for an IEP. After a very comprehensive evaluation by PT, OT, speech, and a psychologist, we leared Grace didn’t qualify (not surprising). At that point we had stopped EI in our house and started private PT services at the Children’s Hospital near us. We loved PT services through EI, but after nearly 3 years of in-home servies (and virtual services during the pandemic), we knew Grace needed to be challenged in a different environment. Children’s PT was incredible. We’d drive the 30 minutes 1-2 times a week and Grace would have 60 minutes, 1:1 therapy. They worked on gross motor, balance, tracking, reaching, running ALL through play…I loved it. Our main goal when we graduated PT was to continue to practice these things in a a natural environment, and to eventally get Grace to jump. Needless to say, she’s quite the jumper now, as shown by hours on the trampoline with her sister.
As she gets ready to start preschool in a few weeks, we are overcome with excitement and pride everyday. The little (tiny) girl who could barely hold her head up during tummy time bosses her sister around, speaks more Spanish than her dad, and is potty trained. She no longer needs a walker, SMOs, or special shoes. She is proud of her hydrocephalus. And as we prepare for our first follow-up without an MRI, we ask that you say a little prayer for Grace and that her height and head growth look good.
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