Taking those first steps is a pretty big milestone. Usually it happens around 1, so we're about 2 years later than "normal", but it still happened. Today was a pretty uneventful day, other than it being 60 degrees in late October. We were outside for an hour with Leah in her rolling stander, and I think that might have sparked a renewed interest in walking. She came into the house still in the stander and I couldn't believe how tall she was! She rolled over to the garbage and proceeded to pull out (and eat) a carrot peel, but we won't go into that here.
Anyway, after dinner she asked to go in her stander. We were out in the family room that has hard floors, and Leah was standing up using her HKAFO's and holding onto her walker. She leaned forward a little bit and then pulled herself forward. Oh My Goodness! Was that just her first step???? Yes, I think it was! Then she did it again, an inch at a time. Well, then wouldn't you know then next time she fell flat on her face, and only barely missed splitting open her face by about an inch. Oops. Tears and tears, but we had a little pep talk about how sometimes you have to fall a few times before you learn how to do it right. I'm not sure she totally bought that, but we then moved into the kitchen where I held onto her legs and she pulled herself forward about 3 feet.... just a little bit at a time.
I wish I had a few pictures or a video to share, but I didn't think this is what would be happening this evening. Hopefully we'll capture her in the action soon!
Sunday, October 26, 2014
Wednesday, October 15, 2014
SB Technologies
Technology is moving faster and faster, and there are more and more advancements in medical care. Spina Bifida is no exception. Kids who are born with myelomeningocele, the most common form of SB, need surgery to close the gaping hole in their backs. Most of these babies have operations in the first 1-2 days they are born. As I have posted before, there are some who have surgery in utero. This was not what we chose for Leah, as it was still relatively experimental, and we were not ready to take the risks associated with it. But, of course, as time goes on, the surgery has gotten better. It certainly has in just the 3 short years since we had to make the choice.
Here is a link to an article about the surgery as it "comes of age." Warning, some of the pictures are kind of graphic but it gives a great description of the surgery and of SB in general.
http://www.npr.org/2011/07/11/137712436/a-prenatal-surgery-for-spina-bifida-comes-of-age
Here is a link to an article about the surgery as it "comes of age." Warning, some of the pictures are kind of graphic but it gives a great description of the surgery and of SB in general.
http://www.npr.org/2011/07/11/137712436/a-prenatal-surgery-for-spina-bifida-comes-of-age
Tuesday, October 14, 2014
Go Baby Go
There has been a lot of research showing the link between mobility and a child's development in other areas. Young children who have mobility impairments are at risk for developmental delays in other areas, like language, social, cognitive and fine motor skills. This is why it is very important for kids who have motor limitations to find ways to become mobile. If you've ever watched toddlers, you see that they move constantly... everything is something new to explore... and all that exploration is how young kids learn. Given Leah's physical limitations, we have always tried to help her be mobile in her own way. All of her wheels have given her this mobility. However, there is one place she has a hard time... outside.
Earlier this summer our neighbor brought us a magazine from the University of Delaware, her alma mater. In it featured a story of how the U of D is collaborating with engineers to provide mobility for kids with physical disabilities. The story was about a little boy who had cables and wires all over his house so he could move freely throughout. There were hanging cables from the ceiling going into every room and he swung from room to room. Awesome! We started looking more into this, and found out that it was the work of U of D's Go Baby Go department.
In 2006 a pediatric researcher launched the Go Baby Go program, and they are helping to give the gift of mobility to kids by modifying off-the-shelf power cars. On a whim, I posted to their site that we are based in Minneapolis and would love to get in touch with someone to help modify a car for Leah. As fate would have it, there was someone here in Minneapolis checking the Go Baby Go site at the same time and contacted us to help make this car.
Bridget works for an organization here called PACER. PACER is a non-profit whose mission is to help parents of children with special needs to be an advocate for them. Bridget had just recently attended a conference at U of D and was interested and excited to make a Go Baby Go car for a child... she just needed to fine one!
Over the past several months we have met with PACER, picked out a car, and had several fittings in the car. We chose a John Deere tractor, which she will be able to grow into for several years, and an engineer donated his time to rewire the pedal from the foot up to the steering wheel. They also added a seat belt and straps to keep her feet secure. Finally the other day it was ready for us to pick it up. She did awesome! And loves it so, so much. It has been great for her to be outside in the yard and driving up and down the street.
None of it would be possible without the kindness and generosity of PACER, and we are so grateful that they chose to work with us. Here are some pictures of her enjoying her new Go Baby Go.
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Earlier this summer our neighbor brought us a magazine from the University of Delaware, her alma mater. In it featured a story of how the U of D is collaborating with engineers to provide mobility for kids with physical disabilities. The story was about a little boy who had cables and wires all over his house so he could move freely throughout. There were hanging cables from the ceiling going into every room and he swung from room to room. Awesome! We started looking more into this, and found out that it was the work of U of D's Go Baby Go department.
In 2006 a pediatric researcher launched the Go Baby Go program, and they are helping to give the gift of mobility to kids by modifying off-the-shelf power cars. On a whim, I posted to their site that we are based in Minneapolis and would love to get in touch with someone to help modify a car for Leah. As fate would have it, there was someone here in Minneapolis checking the Go Baby Go site at the same time and contacted us to help make this car.
Bridget works for an organization here called PACER. PACER is a non-profit whose mission is to help parents of children with special needs to be an advocate for them. Bridget had just recently attended a conference at U of D and was interested and excited to make a Go Baby Go car for a child... she just needed to fine one!
Over the past several months we have met with PACER, picked out a car, and had several fittings in the car. We chose a John Deere tractor, which she will be able to grow into for several years, and an engineer donated his time to rewire the pedal from the foot up to the steering wheel. They also added a seat belt and straps to keep her feet secure. Finally the other day it was ready for us to pick it up. She did awesome! And loves it so, so much. It has been great for her to be outside in the yard and driving up and down the street.
None of it would be possible without the kindness and generosity of PACER, and we are so grateful that they chose to work with us. Here are some pictures of her enjoying her new Go Baby Go.
Monday, October 13, 2014
Shake It Off
Enjoy this great little video of kids with Spina Bifida. You won't see Leah in it but we recognized lots of her friends!
https://www.youtube.com/watch?v=LLUTCix-gog
https://www.youtube.com/watch?v=LLUTCix-gog
Sunday, October 12, 2014
October Is...
Spina Bifida Awareness Month
While breast cancer and domestic violence and bullying tend to get a lot of attention this time of year, it's also SB Awareness Month!!
I have been totally behind in posting during this most important month! October just kind of snuck up on me and then all of the sudden it was here and we were on our way out of town for a family vacation. We had the most awesome time in Newport Beach, CA, where we rented a house for a week (more about our trip later). In the meantime, all my SB friends have been sharing their stories and posts, and while I have thought about it, I haven't shared much. Even so, it is an important time to spread awareness and the hope for inclusion. While I don't have much to share at this moment, I will use the rest of the month to share my side of the SB story.
Keep Calm, Wheel On
While breast cancer and domestic violence and bullying tend to get a lot of attention this time of year, it's also SB Awareness Month!!
I have been totally behind in posting during this most important month! October just kind of snuck up on me and then all of the sudden it was here and we were on our way out of town for a family vacation. We had the most awesome time in Newport Beach, CA, where we rented a house for a week (more about our trip later). In the meantime, all my SB friends have been sharing their stories and posts, and while I have thought about it, I haven't shared much. Even so, it is an important time to spread awareness and the hope for inclusion. While I don't have much to share at this moment, I will use the rest of the month to share my side of the SB story.
Keep Calm, Wheel On
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