We packed up the girls early and were on the road by 8 a.m. to get to A.I. DuPont Hospital for Children by 9:30 a.m. It was time for Adria's bi-annual visit with various doctors in the "Spinal Dysfunction Clinic." Because spina bifida impacts so many different areas of the body, the hospital coordinates times when the various specialist come together in one area to see their patients with similar challenges. It works well but it means that we sit in room for a couple hours and typically see at least seven doctors, physician's assistants, physical therapists, nurses, etc.
As we sat in the Rainbow module waiting area before her appointments, I saw a young man in a wheelchair and his father. He had large shoulders and a thicker mid-section with short, lifeless legs hidden under baggy pants yet he was aware and cognitive, all tell-tale signs of spina bifida.
I said hello and introduced myself asking his name and what grade he was in. Ninth grade...he just started high school. That's a rough time for anyone, but I couldn't help but think how much more difficult it is for this young man. I almost felt guilty saying that my daughter has spina bifida too, as she went stomping past to go look at the train set.
His father asked what level she had, meaning where was it located on her spine. I said the L-4/L-5 area. He seemed surprised saying that was the same as his son's spina bifida level. He asked, "It wasn't myelomeningocele was it?" There's a question I almost never hear.
"Yes, she was born with myelomeningocele with her spinal cord and a sac protruding from her back," I replied. Truly, I think he was almost in shock. He said it's amazing how different she can be with the same level of spina bifida. Yes it is, I thought.
We chatted for a few more minutes about things like catheterizing, bowel management, shunts, and surgeries. All things we understand and experience yet very rarely have the opportunity to talk with other people who know exactly what we mean. And then Adria was called back.
Adria did great. It's wonderful that she can now stand barefoot (with mom's help) for her height to be measured. She's 3' 2" tall and almost 42 lbs. That's pretty short for her age, but you'd never know without other kids around.
She showed off fairly well for the doctors, and they were pleased with her progress saying she looks great. The best thing we had to share was that the bowel program we have in place now seems to be working to keep Adria's diapers clean most of the time. This was a big concern of ours during our last appointment with the clinic in May. Yeah for progress! But they were quick to warn that this is ever changing with their spina bifida kids, so be prepared...
They also asked how easily Adria tires when walking. She can go fairly far, about 1/4 mile, but definitely couldn't make it through a walk at the mall. They suggested we might start thinking about getting her fitted for a wheelchair at her next visit...it can take 6-8 months for one to come in after ordering. This discussion was minorly alarming to me because I've been so pleased with Adria's progress, I just didn't think we'd be talking about a wheelchair. The doctor assured me that many of the childrens' wheelchairs collect dust and are only on-hand for major outings like a trip to Disney World, once they've outgrown a stroller. We'll see I guess. I'm in no rush for this. We still have a jogging stroller and a double stroller that work just fine when needed.
But as I pondered the possibility of a stroller, I thought about that young man I met earlier. For him there was never any question, he would need a wheelchair. He has almost no feeling in his legs. He has the same "birth defect" at the same level as my daughter. He is a special boy and I hope and pray the best for him.
I just realized how very blessed Adria is. She is a little miracle. She is amazing.
Adria helping to put on her braces
Johanna being like big sissy and taking her shoes off...
The new hospital addition is coming along nicely! Can't wait to see it.
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