Why my medical team is family

The Team is more than the people we’ve chosen to care for our girl.

I didn’t know that until we were in Delaware this week. Or maybe I did… but it didn’t sink in until I saw her face.

All packed into the car, we made our way down 1-95 to A.I. DuPont Hospital for Children, an experience that used to make me so apprehensive- bringing my children to a hospital- now seems second nature. This is our 5^th or so trip down there, and it’s started to feel like a long distance relationship. I am friends with some of her team on Facebook, follow the hospital on Twitter, and in our POLP (Parents of Little People) groups, we talk about DE like it’s our second home.

Where we like to eat, stay, play. How the doctors are. We talk about how cool it is that we get to spend time with them at the conferences over the summer- Dr. Bober is quite the drummer. Most patients and their families never know these things about their doctors.

But we do.

We have chosen her team. Agonized over paperwork revealing numbers in the thousands (for us, we’ve struggled across the board with seeing doctors), taken vacation time, rearranged schedules, missed school days and special events to see these team members. We’ve waited, collectively, days in waiting rooms, in sterile beds holding children to our chests, staring at images we have come to understand the meaning of…

And our team responds to us. As parents. As patients.

I knew I loved our team.

Why just days before our trip to Delaware we were switching insurance, again, made sense to me. We were doing this for Addie. For peace of mind. For the best.

Because as parents we all strive to give the best to our children… whatever that means we have to do to get it. While I wish the best meant designer clothes and yearly trips to Disney, what it really means for us is the best care.

Addie was taken back for her bi-yearly xrays, and when she returned 5 minutes later, she bounced down the hall, a nurse and Dave happily chasing after her. “She did a great job!” the nurse exclaimed. I knew she would… imaging has become a thing Addie just knows she needs to do, but it’s the poking and pulling that I assumed would bother her. But I was wrong.

In the exam room, Addie happily hopped up into her doctor’s lap, sitting there smiling as the adults talked about how non-representative all these new TLC shows are. She didn’t say a word, but she was so at ease, she just sat and listened. We all gathered into the hall to watch her walk, and though she was hesitant with the initial doctor she’d seen (a resident), when Dr. Mackenzie asked her to walk or answer questions, she happily obliged. Strutting her stuff down the hall, to and fro, adding silly steps and a jog in the mix.

He smiled at her, reassuring her that she was doing a great job, and talked lightly as he explained the thrusting in her knees and its relation to achondroplasia. His comfort and knowledge with dwarfism always eases my concerns- with over 600 patients, there is no other expert I trust to tell us about her bones than that man.

But there was more… As I watched Dr. Mackenzie push Addie’s knees to her belly, my girl closed her eyes and placed her folded hands across her chest.

The volumes this action spoke to me was deafeningly loud.

Her comfort was palpable. She was at peace. The gentle way he spoke, even as he gave instruction to the students with him, was soothing. She didn’t struggle against his instruction, or tense up with he manipulated her limbs. Addie allowed multiple reflex checks, answered questions as best she could, and gave great high-fives. Though being pulled and pushed, tuned and measured is never an appealing way to spend one’s morning, for a three year old to find comfort in the team we’ve chosen was more than assuring.

The afternoon was spent in much the same way.

We took the girls to the Christiana Mall, where we played and ate lunch, before heading back to DuPont. It wasn’t long into the 15 minute drive back, that Addie and Millie both fell asleep. We carried the girls in through the cold and back to the genetics module of the hospital and waited. When Dr. Bober came to get us, they were still asleep… where Addie stayed through her whole appointment- potentially setting a record of most sound sleeper.

Again, she was measured (as one can be while sleeping) in her flexion, head, etc., reflexes checked, and we watched her soundly sleep (hooray for no apnea!). We talked about her activity, looked at how she measures on the achon charts, for which she’s +1SD in height, in between the mean and +1SD for weight, and -1SD for head circumference. If you’re wondering what all that means? She’s perfect. (link to her stats)

We sat and listened to our concerns being answered… and then we talked about the conference coming to Boston, how four is looking to be far more awesome than three, and somehow keeping our kiddos under the age of 13 forever. The same comfort Addie showed physically with Dr. Mackenzie, I felt emotionally with Dr. Bober. While I tense up with Mac at the discussion of a someday surgery on her legs, when we get to talk about how well she is doing physically, emotionally, mentally… I feel my heart release a pressure that builds up over the 6 months we go between appointments.

There is always going to be something. Not because of achondroplasia but because we have children. We are growing older each day. Because the human body is always in need. To have the support behind us of a team we know, trust, and have come to love as an extension of people who care about our child(ren)… that’s invaluable.

Want to know more?

Growth Charts

Adelaide has Achondroplasia

Trip to DE