Tag Archives: stroke clinic

Pediatric Stroke Clinic – 6 Years Old

IMG_8437.JPG

Today was our fifth visit to the Pediatric Stroke Clinic at MGH. The first was when Mia was 2 months old, then 14 months, 26 months, 4 years and 2 months, and today at 6 years and 2 months. Every one of these appointments has been in mid August. The stroke clinic happens once a month, and we’re on an August schedule, at first once a year until Mia turned two, now once every two years. It’s a form of time travel for me, revisiting this place, with an older and more capable child each time, answering the same questions and some new ones, sharing information, seeing if I’ll learn anything useful.

The heat, the drive, the traffic, parking garage, finding the bathroom, remembering doing it all with a stroller, getting a snack at the cafeteria, finding the right elevator to the eighth floor, waiting, the really friendly staff in the waiting area as the stroke clinic shares space with the pediatric oncology team. They seem friendlier and more gentle with families than the other floor with pediatric neurology and gastroenterology. The toys in the waiting area are nicer. There are many books and a beautiful huge fish tank.

Today, there was a new neurologist on the team and she was great! She is an M.D./Ph.D. from Buenos Aires, spoke Spanish with Mia, and is eager to learn from me as they work to set up resources for families. Mia’s main pediatrician is a woman, and all of her therapists have been women, but this is only the second specialist we have seen who is a woman. She took time to get to know us, was patient when Mia wouldn’t answer her questions, gave her time to warm up, and asked really good questions. She asked me what kind of support system I have. She asked me to share resources with her as they are setting up a website to support families. She offered to write letters to support me in advocating for Mia to continue to receive occupational therapy through the school district and to get speech therapy too.

I found a sweet video of Mia at that first appointment six years ago. She was swatting at the toy horse hanging from her carseat, snapped into her stroller frame. Then and now, I watch this video clip and see that she is hitting the horse a bit more purposefully with her left hand than her right. It’s subtle but noticeable. And yet, her right hand is active too. I used to wonder what it meant, what would she be able to do with her hands.

Today, Mia read aloud for the new neurologist on the team. She ran down the hall, with no apparent gait issues. She hopped as easily on her right leg as her left. She turned pages in a book, took off her sandals, all using two hands in a very functional way. She can tie her shoes, paddle a kayak, climb trees and rock walls, swing across monkey bars, ride a bike, swim, waterski, play soccer, ice hockey, lacrosse, and piano. She is amazing and our journey has been rich with rewards and challenges.

I know a family new to this world of pediatric stroke. I know several such families in the online community of CHASA (Children’s Hemiplegia and Stroke Association). It’s a scary, bewildering journey. Love your child as if they are fine. Educate yourselves to advocate for the best care possible.

I have felt sick this week. It started as a bit of congestion Monday evening and then turned into intense fatigue Tuesday afternoon, worsened overnight as Mia needed some nighttime parenting. I did get good sleep Wednesday, night but still felt tired in my bones this morning. I felt sick again this afternoon from the heat and sun during the drive as I didn’t take the time to put on my sunglasses. I have been doing some amazing healing work with Irene Lyon to support my nervous system in healing from stress and traumas small and large, recent and distant. I sensed that my fatigue this week is a release of long held stress. And, then today, as I was trolling through my memories brought on by the heat and places on our route into Boston and through the MGH campus, I was moved to write here to process all of this, and it made sense all of a sudden. I am releasing some of that stored tension, the wonder and worry that started when I learned my two day old baby had suffered a stroke.

I felt it all today, the fear and uncertainty that made me anxious through the early days, weeks, months, and years, intense pride and connection with Mia as she showed off her many skills, compassion for my imperfect parenting of both of my children through a tough several years, and joy to have them both on this journey with me.

Since I had to take the afternoon off from work for the trip into Boston, after we finished with the appointment, Mia asked me to take her to get new sneakers before school starts next week. We found shoes she loves, blue boys’ ones, no laces please. And, I agreed because last year in Kindergarten, she learned to tie her shoes in September and had to practice all year with her lace sneakers that are now two sizes too small.

We met Zoe at home after her afternoon playdate and took her to soccer practice. Mostly now, life goes on like this with our full schedules of work and camp, soon shifting to work and school. We get help from our au pair to fit in all the activities, transportation, meal prep, and care needed to support the development of both of my girls. And, occasionally, I make time to pause, write, and share how much I appreciate the wonder of it all.

Neurologist Visit – 4 Years Old

MiaBubbles.7.13

Mia and I went to see her neurologist yesterday afternoon. It took most of the afternoon. She was nearly asleep when we arrived at the hospital in Boston which made her kind of cranky for the wait, compounded by her accidentally spilling her orange juice and then requesting another one. I said no. A young resident came out to tell us it would be another 15 minutes after it was already 15 minutes past our scheduled appointment time. I later learned that the resident is an adult neurology resident on her mandatory 3-month stint in pediatric neurology.

When the nurse came to take Mia’s vitals, Mia did not want to get on the scale. I said she weighs almost 40 pounds. She just had her physical. I don’t want to fight with her about this as it’s not really relevant to her appointment today. Mia then cooperated to get her height measured and to have her blood pressure taken, also both not particularly relevant.

When the resident did finally call us into the room, she asked me some questions that were annoying and not particularly useful, like, “So I was reading her chart, and it looks like everything’s been fine since she was 3 months old?” Yeah, I guess, if you define fine as no seizure medications needed since then. I simply said yes. I continued to answer her questions. She tried to engage Mia and Mia decided not to talk but to giggle instead. She asked Mia to touch her finger and then to touch her own nose. She asked her to do it with the other hand. Mia did. She asked her to jump up and down on one foot, and the other. She tried to test her reflexes. It wasn’t clear she got the response she was seeking.

After about 10 minutes, the resident went to get the attending physician. Another wait. Mia asked for my iPhone and I gave it to her. So when the attending came in, he had to persuade her to look at pictures in books instead of at the pictures and movies that she was trying to show him of her great skills in skin-the-cat, the monkey bars, bicycling, and others. He asked me more relevant questions, did a cursory neurological exam, had her name various objects and animals in a book and talk about their categories and functions. She sailed through all of this. He said she’s doing great.

The resident asked the attending if we should come back in a year. The attending paused to have a conversation with me. I questioned the value of hearing him say that she’s doing great. I know that. I explained that we go to the stroke clinic next month and will continue with that every two years until Mia is 10. In the end, we agreed that the resident would write “as needed” on the form, I will call the attending to discuss Mia’s progress in a year, and maybe he’ll see her in three years when she’s seven, if he hasn’t retired by then!

A year ago, I was really disappointed that he told me to bring Mia back again in a year.

So, I’m relieved now that he and I were essentially on the same page. These appointments are hugely time consuming and must provide more value than the one yesterday to justify the time. I’m grateful to have had high-quality care from this neurologist since Mia’s arrival in the NICU when she was two days old, but we’re well past that point. If any new issues arise, I won’t hesitate to seek care, and three years is a long time. It’s very hard for me to say whether I will think it’s worth it to try to go see him again then, and to deal with whatever resident is on rotation at the time.

There’s one other thing that bothers me about taking Mia to all these appointments, now at age four. She has to suffer through them too and I think it has an impact, hearing me answer all these questions, hearing me talk to the doctors. I’m totally comfortable explaining everything to Mia but I’d like to reduce the need for Mia to spend hours in waiting rooms and exam rooms, time when she would be better served playing at home or school, further mastering her world.