AFOsI decided to get AFO's for Ainsley. She'd had a pair of soft AFO's. Not custom but the same idea. They really didn't make much difference for her and I was afraid that her ankles would become weak in the braces. She wore them at school every day until she outgrew them. We used DAFO Pollywog inserts for the past year or so. They helped keep her foot in a decent position but even after the leg plate removal more than a year ago and the progress she made initially she is no closer to standing or walking. The way I see it, it's worth trying them. Though it was a very traumatizing (it shouldn't be but it was). She started to get upset when he wet the plaster and then became really upset when he went to cut them off. Here's the process for those who would like to see:
Here she is at home wearing them. Luckily I had some hand-me-down Keen's that worked. Then we worked up to wearing them an hour at a time. She wears them to school but signs "off" the second she gets home. Her pleading little face is hard to resist. They make it hard for her to get up and down from crawling and her gait is a little odd still. I hope it gets better. We need more time before I commit to an opinion.
Walking/WalkerCheck out this video of Ainsley cruising (with support) the biggest obstacle for her is standing balance. In February we met the new orthopedic doctor for routine follow-up. Ainsley's x-rays look good and although she will still need an x-ray every 6 months, it is unlikely that any further surgery will be needed. Her hips have pretty good coverage over the femur and the donor bone appears absorbed. The legs look good where the plates were removed. The reason she isn't walking isn't really her hips, but having hip dysplasia really didn't help any. Plus she's spent so much of her life unable to move. Now days she's been rockin' the hammock and it is helping her a lot. She can now get in by herself sometimes. It's been really fun for her and that is good because it motivates her to be in a semi-standing position and her legs are now quite strong. She also uses a walker at school every day and weather permitting, in our driveway. She does some walking in the house every day, holding our hands. It's on Steve's to-do list to remove her arm troughs and add the hand grips to her walker. I'm going to make bumpers for it so we don't have to worry about the walls and furniture. Stay tuned for pictures. I doubt she'll use it much on her own (likely she'll prefer to crawl) but at least we can use it for PT during the rainy season.
ClimbingAinsley has gotten pretty good at climbing. At the doctor recently she climbed in and out of the wheelchair completely by herself. She can also get in and out of a chair at the dining table. And on and off a bed or couch. It's great to see her be able to be a bit more independent.
Oh my gosh is she going through a phase. I like to give my kids lots of hugs and kisses and she's learned that I like kisses (there was a time when she couldn't do it so we made a big deal when she did) so lately she uses kisses to try to get what she wants. She comes over to the computer and kisses me over and over asks, with sign language, for a DVD. It works. And now she's kissing me all the time and you can even hear her kiss. That's good for her lips. I hate that I have to think that way but after years of working with Ainsley just to try to make an "O" sound I'm rather desperate for some progress. I want her to at least learn to say a verbal yes and no. One day I'll be sorry when she learns the word no, but I know that. For now we're using a combination of things. Vocalization, sign language, body language word approximations, and the IPad. Here is an example of how she communicates with her AAC device.
I've been planning on taking Ainsley to Cincinnati to get a second opinion in the Spring after cold and flu season. They have a top rated airway team and some advanced testing. The fact is Dr. Cotton probably sees more complex pediatric airways than anyone else in the world. Our surgeon has been on the fence about a cricoid split since Ainsley was a baby. We've been encouraged to wait and see if growth helps her, and every year we're asked to wait longer. I've suspected all along that she'd end up needing an airway surgery. But if Dr. Cotton tells us he isn't confident that surgery would help then we can lay it to rest. We hope Ainsley won't need the trach for the rest of her life but if she does so be it. If he thinks surgery is a good idea then we'd probably be hoping to get it scheduled over the summer.
We got a date today and we will be there from 5/21-23. I am hoping to meet up with some of the moms from my pediatric trach group while we are there. My sister Sheryl has agreed to come with me. Hooray!
As you probably remember, I was very disappointed with the result of Ainsley's eyelid surgery in December 2010. I had hoped that the appearance of her eyes at birth could be restored to her. The surgeon did what he felt had to be done. I won't go into it in detail again, the whole thing is rather complex. But before Ainsley's second cranio-facial surgery when she was 9 months old her eyes were far more open and straight. In fact they didn't close at night and we had to put ointment in them to keep them from drying out. Now we have the reverse problem, they are too closed.
I have struggled to understand what went wrong, and the doctors weren't sure. But after giving it countless hours of thought I think it comes down to that her eyelid function was poor at birth but the excess bone from the sagittal craniosynostosis helped lift the lid and so her eyes appeared much more normal. When the bone was removed/reshaped it created droopiness.
We've been considering a frontalis sling operation since she was a baby. She needed to be 4-5 years old and now she is. We also needed her lids to be in their final position. Both the brow implants and the tarsal switch surgery each elevated her lids a few mm's. The brow implants also give the occuloplastic surgeon a solid surface to work with because the bone was thin.
What they do is attach some material (could be synthetic or tendon from her leg) to the muscle in the lid and the forehead muscle. It helps elevate the lid(s) and compensates for the abnormal muscle tissue (which combined with the cranio-facial surgery is the reason Ainsley's lids are so droopy. The surgeon will have to be careful not to lift them too high or she might not be able to close them. Luckily this is a surgery that can be undone or adjusted if needed.
We've recently thought perhaps we should go back to the surgeon who did the tarsal switch because he's been "in there" before and knows her anatomy. Plus we would like him to open up the left eye by a mm in the corner. Also he does cosmetic work so he will have a slightly different approach than the other occuloplastic surgeon who deals more with kids who have complex vision issues. We will at least meet with him and see. Our appointment is 4/3. Our goal would be to have the surgery some time this summer.
I know that her eyes will never be the same but I do hope this helps for so many reasons. I miss being able to see in her eyes like here. My friend Christy said to me that that alone is enough of a reason to do the surgery. I'd like to think she is right. For those who don't remember here is what they looked like before. This was her normal eye position but she could use her forehead muscle (the way the sling will work) to lift them fully open which she did a lot of the day (before the surgery). They are so dark and beautiful. I can't explain how hard it is to feel you can't see into your childs' eyes.
I also asked the craniofacial Ped for a referral for physical therapy. I would like to work with someone who can teach Ainsley how to fall. I think that if she wasn't afraid to fall she would take more risks to try standing which really is a precursor to walking. Nearly every day I stand her up and hold her gently at the hips and try to see if she can stay in position if I let go. She only needs the tiniest bit of a touch. I remember her physical therapist, Gay, doing that with her when she was 2. She was able to do the same thing then. I don't know what it's going to take for her to learn to balance on her feet. Ainsley receives PT through the school but it's just not enough.
We've had great success with the hammock. Ainsley hangs in it for hours every day and that is great for leg strengthening because she is somewhat standing in it, (with the support of the hammock under her arms). She also loves to sit in it and swing. That is great for the vestibular system (helps with balance). I've got the supplies to make a bouncer which I hope will get her in a better more upright standing position.
******So we're gearing up big time. Hopefully there will be good news to share in some of these areas in 2012. Thanks for reading.