Wow, what a busy week! Cole had an appointment with the opthalmologist, Dr. Jeffery. The appointment went well and she said his eyes look good. She recommended we reduce the patching from four hours to two hours. We were definitely excited to hear that! She said it's important he has time for the eyes to work together (to reduce the crossed eyes). I also clarified the discussion we had about surgery. Dr. Jeffery said the surgery for his nystagmus would probably be done sometime between age 3 and 5. The goal is to tighten the muscles and reduce the shaking since it causes his eyes to have more trouble focusing. We originally thought this surgery would be much sooner so we are glad to have a little more time before we have to think about it. She asked to see Cole again in 8 weeks. Because Reagan's school schedule changed she wasn't able to make her appointment but she has an appointment with Cole on October 22nd.
In addition to putting in a lot of hours this week to meet a deadline for work and going to the opthalmologist, Reagan also had a therapy appointment to get her new brace fitted. One of my goals for this blog is to share tips and tricks with other parents who struggle with the issues involved in having a special needs child. Leg braces are one of those! Because Reagan only wears a brace on one leg she needs two different size shoes. Because it's hard plastic it's very difficult to find shoes that open wide enough to fit them. Most kids shoes at Reagan's age have tight elastic laces so parents aren't always struggling to keep them tied. Unfortunately the only store we have found that will sell two different size shoes is Nordstrom. They have been AMAZING and I highly recommend them to anyone who needs to have shoes fitted for their children. There is also a store in Potomac called ShoeTrain. They specialize in fitting children who wear braces, and they will sell us two different sizes, but will charge half price for the second pair of shoes. So we generally go to Nordstrom and purchase whatever shoe will fit the brace. We usually end up with about two to choose from. We cross our fingers that we like the way they look.
Reagan currently wears a Jumpstart Kangaroo DAFO (Dynamic Ankle Foot Orthosis). The cerebral palsy (CP) causes her gastrocnemious (calf muscle) to always be tight. Some children with CP have the opposite issue and have low tone. The high tone causes Reagan to point her toe and therefore trip. The DAFO forces her ankle to remain at 90 degrees and prevent her from pointing her toe. We do stretches to also loosen the muscle but the brace helps reinforce that angle. Future treatment options include botox shots and/or a surgery that lengthens the calf (it's called gastrocnemius-soleus intramuscular aponeurotic recession). At this point we are hoping that with enough stretching, therapy and the right physical activity she will be able to avoid these treatments. After a trip to the Nordstrom in Tyson's Corner today we were able to find a pair that fit. She's very excited about her new shoes and we're hoping they will last as long as the brace does! As you can tell from the picture, she still loves pink !
Wow, what a busy week! Cole had an appointment with the opthalmologist, Dr. Jeffery. The appointment went well and she said his eyes look good. She recommended we reduce the patching from four hours to two hours. We were definitely excited to hear that! She said it's important he has time for the eyes to work together (to reduce the crossed eyes). I also clarified the discussion we had about surgery. Dr. Jeffery said the surgery for his nystagmus would probably be done sometime between age 3 and 5. The goal is to tighten the muscles and reduce the shaking since it causes his eyes to have more trouble focusing. We originally thought this surgery would be much sooner so we are glad to have a little more time before we have to think about it. She asked to see Cole again in 8 weeks. Because Reagan's school schedule changed she wasn't able to make her appointment but she has an appointment with Cole on October 22nd.
In addition to putting in a lot of hours this week to meet a deadline for work and going to the opthalmologist, Reagan also had a therapy appointment to get her new brace fitted. One of my goals for this blog is to share tips and tricks with other parents who struggle with the issues involved in having a special needs child. Leg braces are one of those! Because Reagan only wears a brace on one leg she needs two different size shoes. Because it's hard plastic it's very difficult to find shoes that open wide enough to fit them. Most kids shoes at Reagan's age have tight elastic laces so parents aren't always struggling to keep them tied. Unfortunately the only store we have found that will sell two different size shoes is Nordstrom. They have been AMAZING and I highly recommend them to anyone who needs to have shoes fitted for their children. There is also a store in Potomac called ShoeTrain. They specialize in fitting children who wear braces, and they will sell us two different sizes, but will charge half price for the second pair of shoes. So we generally go to Nordstrom and purchase whatever shoe will fit the brace. We usually end up with about two to choose from. We cross our fingers that we like the way they look. 
Reagan currently wears a Jumpstart Kangaroo DAFO (Dynamic Ankle Foot Orthosis). The cerebral palsy (CP) causes her gastrocnemious (calf muscle) to always be tight. Some children with CP have the opposite issue and have low tone. The high tone causes Reagan to point her toe and therefore trip. The DAFO forces her ankle to remain at 90 degrees and prevent her from pointing her toe. We do stretches to also loosen the muscle but the brace helps reinforce that angle. Future treatment options include botox shots and/or a surgery that lengthens the calf (it's called gastrocnemius-soleus intramuscular aponeurotic recession). At this point we are hoping that with enough stretching, therapy and the right physical activity she will be able to avoid these treatments. After a trip to the Nordstrom in Tyson's Corner today we were able to find a pair that fit. She's very excited about her new shoes and we're hoping they will last as long as the brace does! As you can tell from the picture, she still loves pink !
Hi! My son also use only one dafo and its hard to find shoes! Can you tell me the name of the model she is wearing? I was trying to find them but couldnt just with the pic.
ReplyDeleteThanks !!
Regards, gery
Hello Gery - those were Nike, but I've since found a new brand I LOVE. They sell them at Nordstrom (who will sell two different sizes shoes). It's Tsukihoshi - they also sell them on Zappos. Not cheap, but they almost always fit the DAFO - even the larger articulated one we have now. Definitely try taking out the insole too - that helps a lot. Here's a link to the Zappo page - http://www.zappos.com/tsukihoshi-kids-kaz-toddler-little-kid-gray-red Good luck and let me know how it works out for you!
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