Wednesday, February 11, 2009

DAFO's and Pediatric Walker

It's official.  These two things are going to be a permanent fixture in our home.  We've had the walker for two months now, but our PT told us today she would be surprised if Reagan was going to be able to be without the walker a year from now.  So now starts the process of trying to get our insurance to help cover the walker. 

Reagan was measured for her DAFO's today.  It was bittersweet.  I cried after our PT left.  I'm grateful for these devices, I'm grateful for a PT.  I know the braces will help her, but it's just another one of those little things that remind me our path is slightly different than others.  Hence the crying.  

We just ordered them and since we're paying out of pocket they should be here by the end of next week.  I would love to hear anything about DAFO's...  other than what my PT has told me I have no clue how to work them.  Do they wear them all day and all night?  Or just in the daytime? How long did it take your child to get adjusted to the extra weight?  Right now I have Reagan shoeless because she balances easier and is more willing to walk that way.  It sounds like the DAFO's work best with shoes on.  Right?   For those of you who have DAFO's, what has your experience been?  I know we'll have to buy bigger shoes.  Any suggestions? I don't even know how to put them on her.  Help!


tiptoe mama said...

First, let me send you cyber - hugs! Those moments of reality are never fun.
MK has had DAFOS for almost 2 years now. When you get them, the PT will show you how to put them on, and tell you how often/when she'll need to wear them. At first they have her wear them for two hours one day, then 4 the next, etc. to help her adjust to them. MK has always done well with them, though I know some kids like to pull them off.
You'll need a bunch of knee socks so that the dafos won't pinch her skin. Old Navy and Target's socks both work really well.
As for shoes - the warranty on the DAFOS is only valid if you wear shoes over them. There are a couple of companies that make shoes especially to fit over DAFOS. The only one I can think of is "Hatchbacks" but they are around $70 a pair, and you can find regular shoes to fit if you go a couple sizes bigger than what she wears now. A lot of people say that crocs work well, but I've never been able to get them to work. I wonder if it depends on the style of DAFO. We've had luck with the ballet slipper type tennis shoes that has a velcro strap. My advice would be to wait till you have the DAFOS to buy shoes. You just can't tell by looking what will fit and what won't. (The DAFO website also has a few resources listed I believe)
I'm kind of naughty - I don't put them on MK at church because I want her to wear cute dainty girly shoes when she's dressed up. A girl has to dress just for the cute factor every once in a while - right? That's what I cried over when MK first got DAFOS. little girls are supposed to have cute shoes- not big clunky things!!! :)
Good Luck.

Mel said...

Okay, your going to make me cry too! Are they the DAFO's which are made from a mold of her foot (like a cast mold)? When you said they measured her for DAFO's I wondered if they are the same thing that we use. Paying out of pocket is a real downer. Are these braces something Shriners would do?

We've had success using Croc's and I just found some Merrell's (sp?) at Dillards that were on clearance and yes they do fit over the DAFO's. I didn't even have to buy a bigger size. I agree with tiptoe, don't buy anything until you have the DAFO's.

Children with Special Health Care Needs loaned us a walker for Crew. We had it for several years.

Annette Monts Falls said...

go with the advice of your PT and your heart......they are hot...and very sweaty...but it will be okay. wait for the shoes....take time to steps sometimes turn into strides! I send you hugs and love and the best of all accomplishments and goals....celebrate progress of any kind....tiny or large.....PROGRESS!

Lori said...

thanks ladies, i appreciate it. it looks like they are going to start Reagan with the jump start "bunny" DAFO's.

I'll just wait then til we get the DAFO's to buy shoes. I have heard of hatchbacks and someone else recommended stride right. holy cow I looked up the prices and freaked. ummm I'm thinking just regular shoes, haha.

They are working with our insurance to see if they'll cover the walker. But I guess there is a ceiling for special needs equipment and the walker might hit it. Who knows. I'll have to look into shriners.

Thanks for the cyber hugs, I'm still a little bummed. But hey we're ordering her the PINK DAFO's so she'll be nice and girly and my oldest will just DIE that Reagan gets to wear pink every. stinkin. day.

Melissa said...

Hugs to you Lori! I am sending you an email since I don't want my comment to be so long everyone get's bored!

Katie said...

I'm sorry Lori, I have been there crying at the PT's, crying at the shoe stores...but it gets better.

I tried to do what the PT suggested shoe-wise but it didn't work out. You'll just have to find out what is best for you and your daughter. I suggest taking a friend shopping to help keep your spirits up. I would have given up if it wasn't for my besty.

JT wore Converse All-Star high tops before DAFOs and he wears them non-high tops now. We did have to buy 2 pairs but for $15 each, it was still not a bad price. If you get the shoes at ShopKo or Sears and she wears it out before she "outgrows" them they give you new ones! Since you know she will have the DAFOs for a year that is a pretty good chance.

Good Luck hon.

Nancy Brown said...

Aww.. I am sorry. We got Ty's walker almost a year ago. I think you are brave.

A little something we found out, when we found out what walker we were going to get ( he has a Kaye Reverse walker) that it was cheaper than I thought and had I known how long it would take for insurance I would have just paid out of pocket. Out of pocket it would have only been $150. Instead it took more than 6 weeks and LOTS of phone calls and tears. However, the insurance in Arizona is much much different.

BTW they told us we would need a walker forever and he is currently using it just at school for long distances. He doesn't use it at home or in the classroom.

The AFO's are hard. On my blog I had a melt down in the store buying shoes. We are just starting our journey over because no on has been able to keep him from pulling out. But one thing we found was wide shoes at payless worked ok. We did break down and buy a pair of shoes but insurance ( in arizona) pays for them. In Utah Shriners gives you a pair. Like Mel said you might want to look into them. Good luck... HUGE hugs moms

Lori said...

thanks everyone!

i'm so lucky to have you all as awesome references and cheerleaders.

Luke and Erin said...

Shoes are hard for use because we use just one DAFO. Crocs have worked the very best for us. If you have the money I have heard wonderful things about Hatchbacks. They are $54 a pair. And you can get those online.
I found it best to just take the DAFO to buy shoes. That way you can take your time and see what really works. Then go back and see if it works while the foot is in the DAFO. I know it is a lot of work, but I think it was the best way to go about it.
I have been using cotton tights. It is cold enough right now that works out great. For the summer I get soccer socks and only use it on her one foot. I have heard Old Navy has some that work great, but I have never seen them.
The DAFOs are super light weight so the thing they have to get used to the most is not 'flopping' the foot. At least that was Bree's problem.
Bree only needs to wear her's six hours at a time. I think it just kinda depends on the child.
I have to say it has made such a huge positive difference with Bree! Good Luck!