We were close. It was 5:37am. We were driving down our street, heading towards the highway. Josiah's appointment with Orthopedics (at Children's) was scheduled for 9:30. Children's, in perfect conditions, is about one hour away. We knew we may be affected by rush hour traffic. Thus, we were prepared to beat it.
Surprisingly, there was already traffic despite the early hour. None-the-less, we did well getting in to the major city without the usual anxiety and palm sweating. We were parked in the parking garage at about 7:15. We walked leisurely to the hospital. After a few quick pit stops, we headed to the cafeteria. We enjoyed a nice buffet breakfast - eggs, toast, bacon, homefries, fruit, etc. It was only $14 (for both of us) and the food was quite good (which we already knew).
We headed up to Orthopedics around 9am. By 9:30, we were in a room awaiting the MD. We provided a brief history of Josiah (including early history - open heart surgery, etc). We explained that the PT (physical therapist) is concerned regarding his low muscle tone, especially in his ankles. They examined him. It didn't take long for them to agree with the PT. Their diagnosis: "Down Syndrome and hypotonia."
As you might recall, Down Syndrome is the presence of three copies of the 21st chromosome (where only two should be present). Hypotonia is described as: "a state of low muscle tone, often involving reduced muscle strength." (wikipedia).
Research seems to indicate that bracing young children who have hypotonia (particularly ones who are also diagnosed with Down syndrome) can assist in providing stability, confidence, and even aid in correct bone formation. It was no surprise that the MD prescribed AFO's (ankle-foot orthosis). Specifically, bilateral (both feet) SMO's (Supra Malleolar Orthosis). "Sure-step" was recommended.
According to SureStep's website (http://www.surestep.net/):
"SureStep is the most effective means of providing stability to children who pronate, when standing or walking. This patented, dynamic system allows children to gain stability, while still allowing normal movement and function." This is an image of pronation, found on the internet.
This is a recent picture of Josiah, standing:
The idea of 'braces' (AFO's) was first brought up about two months ago, when Josiah started weight bearing. At first, the PT wanted to wait to see what his ankles would do. When weight bearing is so new to a child, it is not uncommon for ankles to turn inward. After about a month, it became clear that intervention might be necessary.
When you hear the word 'braces,' different images can come to mind. Images of Forest Gump may come to mind. Images of children affected by polio, in years gone by, may come to mind. Few of those images reflect current orthotic intervention. Here are a few images of days gone by:
Here are what the SureStep's look like:
Thursday morning found us at the Orthotist's office. He took measurements of Josiah's feet and ankles. The measurements and "prescription" from the MD (from Monday) will be sent to the company. A custom set of braces will be made for Josiah. They will be ready in about 2 weeks. Once received, Josiah will see the orthotist again for his "fitting." Then he'll be good to go.
The SureStep's pictured above are the exact style that Josiah is getting. SureStep does make other braces tailored to different problems and needs. The ones above are tailored to young children with hypotonia, pronation, instability in weight bearing, inability to maintain independent standing, and under 50 pounds. Our oldest (age 6) even got to pick out the design - he chose skateboards for his littlest brother :)
I am excited to see the boost in confidence when Josiah starts wearing these. Shoes will now become a 'normal' for Josiah (who up until now spends most of his time in bare feet, like his mother lol).
All in all, it's been a productive week. In addition to getting Josiah's orthoses figured out, we also had 3 EI (early intervention) appointments. C even squeezed in a doctor's appointment. It's Friday and Mama is pleased. We finally have a few days with very little going on. It's long overdue, very needed, and extremely welcome!
Have a wonderful weekend, friends!
SureStep is a revolutionary concept in bracing, specifically designed for children with normal to lower muscle tone who:
- Realize moderate to severe pronation when standing and/or walking.
- Display a general instability when pulling to stand and during cruising.
- Have developmental delays and are late in learning to advance beyond cruising around furniture.
- Are under 85 pounds.
*(see SureStep BigShot for kids over 85lbs.)