Getting Braces...

I have posted before about my daughter Hannah and her CP... well she has continued to make amazing progress and is currently mostly walking on her knees. Her PT told DH today that is going to send an order to get braces for her legs and says this will help stabilize her and get her to walking soon! I'm not entirely sure how the braces work... AFO is what he said, I looked it up on google and learned a little bit. They look a lot like the braces a student of mine wears (she also has CP, but is 13, not 2). I'm hoping that they are not uncomfortable... She has come soooo far and I am just so proud of her. I can't believe we are getting closer to seeing her walk, hopefully all on her own. :cry:

 

That is great news. I hope they get her up and walking soon. :hug:

 

I hope so too :hug: I hope the braces aren't uncomfortable for her and they will help her to walk on her own. Keep us posted!

 

How exciting!! :woohoo:

Many of my students wear AFO's - when they get new ones we have to watch for red spots from the braces rubbing, but other than that they don't seem to have any discomfort with them!

Good luck!! :hug:

 

Yay for Hannah! Her braces will be custom made for her and shouldn't cause her any discomfort or problems. As pp said, you'll have to check for pressure areas and the braces will be adjusted if she has any. She be walking before you know it!

 

Thanks so much for the encouragement ladies! I know this a step in the right direction and I'm so anxious/excited to get it done and see how she does! She is one determined little girl and wants to do everything her sister and kids at daycare do. She is a very happy child and usually has a great attitude. It can be heartbreaking to see her get frustrated when she can't do the same things as Hailey so I'm thrilled she is getting closer to doing those things.

 

:hug: :hug: :hug:

 

My nephew also has CP and my brother and SIL were pretty much told he wouldn't be able to run, ride a bike, etc. But the kid is amazing!! His braces have helped tremendously (he's had them for almost two years and he is 5) and so has his therapists. He can run (has a bit of a limp, but who cares, he can do it) and he is super fast on a bike, he can swim, and do pretty much everything my girls can do (just takes him a little extra time). Hooray for your little girl, she'll be up and walking in no time!!

He has to go in every 6 months or so and have new ones made because he is growing. He also has to wear extra wide shoes to accomondate them, but other than that he really doesn't complain about them.

 

That is awesome news!!! :Clap: Hannah!

 

That's great news! She will be up and walking before you know it!! :hug:

 

:hug: GL with the braces!

 

What is the problem that prevents her from walking? I'm asking because DD might have CP also (we had a clear MRI but I know it doesn't mean much) and knee-walked until 19 months, when she started walking on her toes. She had serial casting on her legs for 5 weeks and now wears braces at night but the difference is amazing, and 6 weeks after the casting she's walking very well (although she'll probably always be a bit stiff). I actually just went to the orthopedist this morning again and she doesn't even think that she needs day braces, that's how far she's gone. In her case the issue was very tight heel cords, and she wasn't able to put her feet flat. The only reason she was walking at all is because she's extremely strong-willed, and she was balancing on her toes more than walking really.

Anyway, we only have night braces but she doesn't mind them at all, of course depending on your DD's diagnosis it might be different. Hers cover her feet up to the knee.

 

Hooray! How exciting.

 

She had a brain bleed when she was in the NICU. It was a level 3 but resolved itself. However, it left a very small area of damage. The pedi has classified her has a CP. The damage only affected her motor skills, particularly on the right side. She also lacks the muscle strength to do it. I wish I could remember better how he explained it then but I can't... Her CP is very mild and the pedi says that in a few years she may not be able to run as well as other kids but that it will probably hardly be noticeable. Cognitively, she is right on track; everything is physical. Hope that makes somewhat of sense...

 

Congrats! It's an exciting milestone. My DS has Down syndrome and took his first steps at 22 months. But he is now 26 months and still not walking all the time...only when he feels like it. Last week he finally decided he'd just walk around the room, let go of furniture and walk away, get up off the floor and walk. I was excited when each of my kids walked for the first time but so proud of him because he has worked so hard to get to this place! He also claps for himself each time he takes several steps, which is very cute...

Congratulations again... That's very exciting!

 

Debbie,
Im so sorry i didnt see this post earlier. If you want to know anything about AFO's talk to me. Ive been through it many times growing up. And now I was told yesterday I will need them again. They arent the most comfortable thing but they do help! Believe me they do. To be honest im not looking forward to going through it again, we are trying everything to try and prevent surgery.

It doesnt hurt to get them to get them fitted. They are made of a hard plastic and you can get pretty patterns on them to make them more appealing to her. It will take awhile for her to get used to them, so dont freak out if she cries and demands to have them taken off. Just stick to it and she'll adjust just fine. You can get some great ones, I remember having a butterfly pattern and many others. If you have any questions im here if you need to talk.

:hug:

 

Thanks, I actually just read your post in TC.
The therapist gave us the order today so we will call and schedule an appointment tomorrow! I don't want to put it off too long but I'm off the week of the 15th so I think we may try and schedule then.

 

Ok that sounds good. Personally Id make an appointment as soon as you can because it usually takes a couple weeks for them to make them up after the take the measures and set a mold for the real thing. Its gonna take them 1 or 2 till i get mine and they even requested i needed them urgently because they dont want to undo the work the plasters just did by having to wait too long for this, if that makes sense.. I got mine fitted yesterday. I hope i dont have to wait too long. all the best. Dont hesitate to send me a PM if you ever have any questions or you just need to talk x

 

I am writing because when my son got AFO I could not find anyone to talk about it who had the same experience. Dan has had AFO's since he was 16 mos old. He could care less he wears them and they are not uncomfortable. When he first got them he wore them 1 hour each 2X a day and then within 2 weeks he graduated to wearing them full time but not at night or naps. The only time they become an issue is in the super hot times of summer and in that case you need to also have on hand a pair of shoes/sandles that will fit your daughter w/o AFOs so she doesn't burn up! Get her socks from gap/old navy/childrens place the kind that are long to go under them the whole length of them. When you remove AFO's for nap the socks will be soaked with sweat so she will need fresh ones often. Daniel still has his first pair since last May as his feet haven't grown much. So he got them at 16 mos and was walking at 19 mos all on his own. He has very mild CP which only affects his lower legs. They provide him support physical and mental too to be honest and give him more confidence in his movements. With CP often their brains tell their legs what to do but their legs don't always respond correctly or fast enough. The braces provide the support for when the brain to muscle connection fails. Daniel also was using his toes to walk and the AFO's broke him of this habit and hold his feet in the correct position. Oh and to give him mental support we had a metal kids shopping cart with wheels that swivel in all directions so he could push that all around the house before he felt confident to finally let go and walk unassisted full time. He will be getting a new pair within the next month or 2. The pair he has now is a solid plastic thing and the next set will have a hinged ankle so he can walk more normally. I picked out a dinosaur pattern and that is on the plastic. It holds shut with 3 pieces of velcro. Again he does not mind wearing them and is indifferent to us putting them on him. He has strengthened enough through PT to graduate to this different kind with the hinge. It wasn't easy getting shoes to fit the AFO's. At the time his foot was a size 6 w/o AFO's and we had to get size 8 shoes to fit with AFO's. You may have to remove the innersole of the shoe. Make sure you get leather shoes because their feet get so hot in the AFO's that they need leather to have a little bit of heat release. You need to look for a shoe with a very rounded front. I actually lucked out and was able to get him sneakers at Children's place for $4 that fit!! His are velcro but it turned out they held the AFO very snugly in place and the sneaker cannot come off easily. They recommend a shoe with laces but with how often you have to take them on and off maybe you should try finding a velcro shoe because laces would be a huge PITA with a squirming toddler. Oh another thing is that while wearing the AFO's it isn't so easy to play on the floor so you may see your daughter kneeling and wanting to play up higher like on a coffee table or couch with her toys. Provide her that sort of surface. Any other questions feel free to email me at [email protected] I don't come to this site often.

Dina

 

It took us several weeks after the casting to get them. Then I had the guy come back (this was all done in our home) 2 times. The first he had to cut some excess off the front length because otherwise I would have had to go up 3 sizes from his norm to get shoes and then all he would do was trip on his giant feet. The 2nd time I had him come back because the top of the AFO was making a red mark on his leg because they were too long and jutted into his knees... for that he had to take them back to the shop and shorten them. It took about 2 weeks to get them back.. so we were at least 6 or 7 weeks after fitting before he could wear them! Once we got all the adjustments there were no red marks whatsoever and he really could care less about them being on. If you feel they don't fit her right speak up and immediately get them fixed. There is no reason for her to have any discomfort... they CAN make them to properly fit so she won't even realize she has them on!

I'm sorry the previous poster had such discomfort with hers. That does not have to be the case!

 

Thank you thank you thank you!!!!!
That's exactly what I needed to hear!
Thanks for the excellent advice!