Day 19 of 30 Days of Gratitude: I am grateful for the Cardio-Neurodevelopment Program at Children’s

I remember taking psychological exams, stacking blocks, looking at patterns and being asked lots of questions. After the tests were over, my parents would be told that I had something called Attention Deficit Disorder. It was a relatively new diagnosis and very few medications (if any) were prescribed for it at the time. An ed plan was designed and I made it through school. End of story. That was my neurological experience. Basically, I remembered the blocks. 

We brought our assessments and paperwork, and were instructed to wait in the lobby of Children’s (which has completely changed, by the way). Izzie is old enough to notice the musical sculpture outside Au Bon Pain and CVS. She loved looking at the fish and I had fun watching her point at each fish and laughing. I know what these doctors are going to say. They are going to tell me she should be speaking more. She should be understanding more. And she isn’t. I watch her delight as the fish swim by her fingers on the glass. Time to head up and play with some blocks!

She saw the toy car in the hallway and made a bee-line for it. We had to go into the boring office instead and she voiced her displeasure of being denied the car. We went over the paperwork, went to get some coffee and waited for the psychologist. A nice woman was waiting for us with a little desk and lots of toys. And notebooks. She asked us questions, asked Izzie questions, and as we went through each part of the assessment, we could see how much she had grown in the past few months. It was phenomenal to see her do tasks I didn’t expect her to be able to do. 

She can feed a doll, point to certain objects she knows, figure out how to get cheerios out of a bottle, and stack blocks like a champ. She can’t, however, say more than our names, or follow more than one step. Her expressive language is behind, which is what I had been thinking. She should be speaking more than a few words, and be able to make sounds that mimic names of objects. Just a new focal point for Early Intervention to follow, I guess.

The experience was such a mixed bag. At one point I wondered about the limitations I put on her without realizing it. Then I see what limitations she has and think about my other two (both were speaking at least two word sentences by this age). I think about my heart mama friends, whose children can’t sit up without support, walk independently, or share in our joy of going up and down the stairs after her. She truly is remarkable for someone who has has two open-heart surgeries and compromised circulation. One interesting fact we heard while we were there- at 15 months she already has a hand preference, and they think it has something to do with the circulation being different than a heart healthy child. Apparently, children who have gone through what she has tend to show hand preference early. [Cliff Claven moment over]

I am so grateful they have this set up for these kids, and I am glad we are participating. I think knowing where she is at comparatively to other cardiac kids is important for me to truly understand how fortunate we are. Yes, being alive is a good sign right there but she is doing more than living, she is thriving. I feel so relieved that her gross-motor skills are at an 17-month level. That rocks. Talking is overrated.

 

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