The Rockstar and the Diagnosis

10 Jul

On the recommendation of my Post-NICU Support Group, Abby, Everett and I met with Dr. Lesher at CHKD in Chesapeake today to discuss the tightness in her left leg. Dr. Lesher is very down-to-earth and approachable; she introduces herself as the “function” doctor. I immediately liked her once she asked how early Abby was and guessed 32 weeks. She was shocked to find she was an ex-24 weeker. Her direct quote, “She’s a rockstar!”

photo 3

Best way to butter me up is to compliment my kids.

She watched Abby walk and stretched her out some. I gave her Abby’s medical and therapy history in my usual 60 seconds or less highlight reel. Dr. Lesher then complimented us again on how well Abby looked and spoke. Did I mention I liked her?

I asked the question that’s been on my mind recently: do you think she has cerebral palsy? And this is when she hesitated. She asked if we’ve ever had this conversation with anyone else. (We really haven’t.) Well…she has it, she said. But it’s mild. Like mild, mild, mild. Because she has some tightness from her original injury, then by definition she has it. Abby, in her normal two-year-old parrot fashion, chose this moment to start repeating the word diagnosis…diagnosis…diagnosis. We all started laughing because we’re talking about this “diagnosis” of brain damage and my two-year-old is saying diagnosis. What two year old says diagnosis?! This is when the doctor pointed out that clearly there wasn’t cognitive impairment…that she’d probably be a mathlette instead of a track star. 🙂

The decision at this morning’s appointment is that we get AFOs (ankle braces) made for Abby to wear at night. We left Dr. Lesher’s office with an appointment for the fall and headed to the parking lot where we said bye bye to Daddy. Since I had the information for the orthotist’s office, I called them from the parking lot to schedule Abby’s molds. After a lot of back and forth, they were able to fit Abby in for a 3pm appointment to get her molds made. Score. I was planning to take Abby to the park to kill a little time, but she told me she wanted to go shopping at Marshall’s.

After a little lunch and shopping, Abby and I drove to Norfolk for her appointment. We managed to get in a quick hello with AhAh and the NICU gang before her appointment. The office AC was not working and the waiting room was packed. Abby’s name was finally called after over an hour of waiting in the sauna. She hadn’t napped and was hot, but still she was a good sport. I was really pulling out all my tricks to keep her occupied! I can’t complain though, they fit us in.

photo 1

Sweating in the waiting room

The Orthotist was extremely nice and apologetic for the wait. Abby liked her immediately. I gave Abby my iPhone and she watched Sofia videos for the 20 minutes her foot/ankle molds were made. After it was over, the orthotist mentioned a sticker and sucker, so Abby dropped me and my phone like a hot potato. She left me all alone in the room to pick her AFO design while she went to get treats with her new best friend. The girl will do anything for candy.

photo 5

Happy to have a sucker and sticker!

It’s been a long day. I’m trying not to let the CP part bother me too much. The doctor stressed over and over how mild it was, and how she sees the full spectrum and Abby is the mildest of the mild. It’s only that left leg that tightens up some on her, and if that’s what we have to deal with, then we are very lucky. It’s still been a pretty emotional week, especially because after I sent her most recent head measurement, her neurosurgeon emailed that he wants us to go for another checkup in September. We were really hoping we were done traveling for follow ups. I guess…I just get tired of getting more news. I don’t want anymore surprises.

Even after such an exhausting day, I have to mention how much I love hanging out with Abby one on one. She is like a little ray of sunshine wherever we go. It’s days like this, where it’s busy and she’s entitled to be grumpy but she’s not, that I feel like I just beam. She’s got the ability to light up a room. I really just love her. I’m glad she’s ours and we got to keep her.

3 thoughts on “The Rockstar and the Diagnosis

  1. Pingback: If I’d Let Fear Paralyze Me, I’d Never Have My Daughter | Mothering Miracles

  2. Pingback: Teaching Our Children to Say Thank You |

Leave a Reply

Your email address will not be published. Required fields are marked *