Pediatric walker bag

This is a new bag that I made for my son. It is WONDERFUL. It just straps on to the side of his walker with velcro straps and has a lining that makes it stiff enough to stand out a little. He loves it and wants to use his walker all the time so he can put stuff in his bag. I didnt have a pattern so I cant really share it, but I'd be happy to pass along the basic idea.

If you are interested in purchasing one. Id love to make one AT COST! Probably between 10- 15 depending on shipping and type of material. I havent seen anything like this before and Id really love to share them. So spread the word! : )

Feel free to contact me or leave a comment in you are interested.
kari.leann@hotmail.com

Brace options

SMO

KAFO
Knee, Ankle, Foot Orthotics



HKAFO
Hip, Knee, Ankle, Foot, Orthotics



AFO
Ankle, Foot, Orthotics



I know I missing some. If yours is missing please leave a comment SO i can add it in. Thanks

Amtryke

I wanted to give out some information regarding these little bikes.


We used www.adaptivemall.com to start a donation zone for a bike. Within a couple weeks the bike was completely covered!! You can check out the website here. They have all kinds of medical equipment and some pretty awesome therapy equipment. We were increidbly happy with the customer service.

There is also AMBUCS that can be used to create a wishlist for these bikes, you can check it out here We were having some problems with one of the pedals and they were kind enough to send us a part for FREE to help with foot positioning!! You can't beat that kind of service!!

These bikes really are great because they have thought of everything. A handle for parents to push (you dont have to bend over and kill your back) a seatbelt for the kids with a nice highback seat, straps for their feet (to keep them in position).

It was also just plain encouraging to see all the people that donated to the bike. Just wanted to share in case any of you were interested in one for an upcoming birthday or next christmas!

Crawling Around

I think this problem depends on the level your child has, as almost everything when it comes to Spina Bifida. : )

Problem:
When your child is crawling he/she can't seem to get their knees up in the right place. Their legs are dragging to the sides or behind them. Kind of where their legs are spread apart. If your child has this problem then you should totally know what I'm talking about.

Solution:
Take an old pair of panty hose, or better yet you could buy a new pair! : ) Cut off the legs right at the crotch so that you have a stretchy tube. Slip it over your child's legs up onto his lower hips and upper thighs. This help keeps the legs together and the knees up underneath. It worked like a charm for us. Or if you have an extra chunky baby you can try a child's size girl's swimsuit. Cut off the top and bottom and again you should have a stretchy tube. Slip it over and.....TAADDAAA! Really within about 3 to 5 times of doing this Toby was crawling much better.

Brock

I have wanted to share a little something I experienced a few months ago with my son Brock. I have not shared this with anyone yet because when I think about telling it I get all teary eyed and I don’t like crying in front of other people, mostly because I have a really bad cry face.



Anyway, a few months ago I was volunteering in my son’s preschool class and although the thought of spending 3 hours with eleven 3 year olds was stressful to me it turned out to be an amazing day.



I spent the day watching my son play with his friends, share, not share, enjoy his snack, make a fun craft, participate at circle time. . all very typical for a 3 year old. At the end of the day his class goes to the playground. On the playground all the kids were bouncing around from the swings, to the slides, to the sand box, etc. Brock was right there with them showing me everything and playing along.



At one point many of the kids decided to play on this climbing thing in the middle of the playground. The only way I can describe this apparatus is that it looks like a dragon made of metal pipes. The arch is about 4 feet off the ground. It reminds me of the unsafe playground stuff I played on when I was his age, in 1970 something. Typical kids climb up and over it fairly easily. I have been worried about this thing since Brock started school.



So, some of the kids started climbing over it and most did without any trouble. Brock stood at the bottom watching them, and I just sort of stood by ignoring and hoping he would move on to something else. But then he went to the ladder and started to climb. I, of course, went right over to help. He promptly told me he did not need help. So I tried to respect this, but stayed right behind him at arms reach.



He climbed the first several rungs of the dragon ok (actually better than I thought he could), but when he reached the top of the arch he stopped. He looked at me and I saw something I really have never seen with Brock before . . . real fear. He looked so afraid. So I came up beside him and asked him if he would like some help. He nodded yes. Then I asked if he would like me to help him climb back down or keep going over. He took a second or two to think then looked at me and said . . . “keep going.”



So I helped and he did go over and climb down the other side safely. I was so proud! Not really because Brock has the ability to climb and play like his friends but because for the first time I witnessed that he was faced with something he really feared and chose to keep going forward.



There I was in the middle of the playground all teary eyed with all the other children and teachers totally oblivious to my little profound moment. And Brock was off to the next thing totally oblivious too.



Ever since that day, when I get totally stressed out with work, the economy, laundry, hectic schedules, whatever, I just whisper to myself “keep going” and it usually helps. I guess it is my new mantra.



Like I said I know many of you have had these moments already or will soon. They are great moments I will cherish always.

----- Kellie (aka Brock's Mommy)

Protecting Legs When crawling

When Toby was crawling around a lot we had a major problem. Toby would crawl but would just barely pick up his knees. Doesn't seem like a big deal until you put shorts on a boy whose knees are contantly being rubbed on carpet and wood. I couldnt buy babylegs for him because he was over one year old and his legs were sooo chunky. So I went out and bought some cute mens socks and some cute women's knee socks. The I searched the internet for this:


http://littlebirdiesecrets.blogspot.com/2008/10/baby-legs-tutorial-make-your-own-leg.html

They worked out Great!! And really if you are just using them around the house you can just cut them and leave them be. We did that with one pair and it didn't seem to make a difference.

FIRST DONATION OF EQUIPMENT!!

Thank you Erica for donating!!

It's a baby chair that helps promote kicking. Awesome for Spina Bifida Kids!!

Here's a link to Amazon to see what it is and read reviews.


http://www.amazon.com/First-Years-3-Kickin-Coaster/dp/B001CH2X5K

We are asking that anyone that gets equipment as a donation covers the cost of shipping and also donates this equipment when finished. You can contact me for more information. kari.leann@hotmail.com

The New Normal

I would like to come up with a list of books/TV shows and movies that show children in wheelchairs or using walkers. I love when this type of things are portrayed as the new normal!!

So here are a few to start with

Books:

PK Hallinan



TV shows:

Yo Gabba Gabba



Sesame Street


Thank you, Laci, for the following suggestions! I can't wait to check them out!

Zonder Kids: Jake's New Friend;
In Jesse's Shoes by Beverly Lewis (for teaching other kids how to accept special needs kids);
Happy Day Books,
Level 3:God made our Bodies

Please leave comments with any more books, TV shows and movies that you know of. I want to watch this list GROW!

Equipment for Sale or for Donation

I wanted to add a thread on here for those parents who are fighting the system to get insurance to pay for their child's equipment or who are struggling with getting Medicaid benefits.

This is not a place to buy anything.

This is only a place where you can post something you are trying to sell or that you are wanting to donate to another family in need.

Please e-mail me with any available equipment you might have. Kari.leann@hotmail.com

I will be happy to post your equipment and help in any way possible.

AFO Shoes

I know we have all had the battle of trying to find shoes that go over all the lovely straps on our child's AFOs. You need super duper extra wide.

Well, we've had the best luck with...

Wal-Mart

Payless (makes extra wide)

Family Dollar (I know weird..but seriously they are wide)


Hope this helps a little.

Good luck with your AFO shoe shopping!!

I've also heard good stuff about new Balance.

Here We Go!

So--this is going to be an experiment. Let's see where we go and how it goes. I wanted to start an informational blog for parents of children with Spina Bifida. An easy place to search through some tried and true tips.
I am hoping that this will be a help. Because who has the time to search the internet all afternoon. Why not find it all in one place?!
Please feel free to give any ideas and suggestions. I'd love to hear them.