Mar 27, 2018

First and Next Steps!

Wow! Just WOW! WOW! WOW!

When Ainsley was 2 she was really close to taking steps, or so it seemed. Her PT said no we didn't need a stander because she was good at standing with just a little arm support. She got a walker and started learning to use it around her 3rd birthday. I thought any day she would take her first independent steps. She got stronger and did well in her walker. Each birthday would pass and I would think okay, maybe it didn't happen at 3, but it will at 4. Then... not at 4 but by 5! Not 5, but 6? Not 6, but 7? Not 7, but 8? Not 9, but 10? Not 10, but 11? Today is the day that stops because today she took her first independent steps and I have them on video for you to watch!



How did this come about?  It would be natural to assume this development is a result of surgery last September, however, like everything with Ainsley things are rarely so simple. As the closest firsthand observer of "everything Ainsley" I would say that there have been many factors leading us to this exciting moment, not just surgery.

For many years I've felt that actually the biggest obstacle Ainsley faced was the fear of getting hurt. Unlike many kids facing challenges like Ainsley, Ainsley never attempted to take steps and she was even fearful about standing. Though she was able to stand for up to a minute without touching, as young as age 4, before losing her balance, she would only do so if she was sure we would catch her if she fell, like when we would stand in front of her with our arms to each side of her during sit to stand exercises. Despite standing relatively well she never progressed to steps if she didn't have something to hold onto even though she walked in a walker with relative ease. Her therapist pointed out that her balance was actually pretty good like when she was on her knees. Which showed that she didn't feel confident on her feet. I could see fear was stopping her. She had a traumatizing fall from standing, when she was young, onto carpet, where her arms collapsed and her teeth cut through her lip. Many times I am thankful that Ainsley is cautious and that keeps her from getting hurt but it also holds her back.

I spent a lot of time thinking it all through and asked her Physical Therapists years ago if they could teach her to fall. I felt quite sure that she would be able to walk it if she could just get over the fear. After all she had been walking in a walker for many years. They seemed to think it was an interesting idea but none of them did. Then I learned about a training system called SafeGait. Ainsley could try to take steps in a harness connected to the ceiling so that she could not fall. When she was 10 we tried it at Children's Hospital.  I thought for sure it would work but after several frustrating months I could see she was still so fearful that she refused to take steps even though she was 100% safe, so we stopped.


Of course it is to be expected that she would have difficulty due to her diagnosis, call it whatever you will: Cerebellar Hypoplasia, Ponto-Cerebellar Hypoplasia type unknown (she doesn't have the gene for PCH but the cerebellum and pons are undersized), or something so long that no doctor but a neurologist would understand it, or just Cerebral Palsy since that's easiest. Whatever you want to call it the MRI pictures are clear she is working with an unusual cerebellum and that makes everything HARD because she's affected in the following ways:
1) Balance - she can get off balance more easily than other people
2) Motor Planning - she has to really think about how she is going to do things and it isn't automatic
3) Speed she's just slow because of the way her cerebellum is
4) Vision (not the surgical complications to her eyelids or remaining ptosis) but her eyes don't track smoothly because of her cerebellum
5) Spatial Awareness- she may have difficulty knowing where her body is in space which in combination with vision is tricky when you are having to navigate over or around obstacles, and/or across different or uneven terrain (uphill, downhill, curbs, carpets, stairs etc).

In addition to her Cerebellum issue she has the following:
6) generalized weakness
7) a history of hip dysplasia that was surgically treated twice...and
8) Her hips are a bit off balance and that causes a leg length difference which also makes it harder to straighten her legs, the right leg is longer and thus bent (though she got a shoe lift recently)
9) Her knees had become contracted and would not fully straighten, likely due to #8.
10) Her feet would pronate (roll in). We tried various orthotics, she couldn't walk in rigid AFOs but hinged AFOs allowed her to feet roll in because of her flexible joints. Then she had surgery which helped but she will still need AFOs.

So the surgery addressed issue #9 and #10. #9 - Her legs are now about 5-10 degrees from fully straight,  (the new shoe lift on the left helps too, but only when she is wearing the AFO's and shoes), basically she needed the surgery and a shoe lift.  #10 - The goal of the calcaneal osteotomies surgery was to give her a more stable foot base. Yes in x-ray the foot is straighter but there is enough flexibility in her feet that they can still collapse and pronate under pressure, especially if she isn't in the AFOs, but not quite as badly as before. She's better when she's wearing the AFOs, but she doesn't have as much control when wearing them due to lack of feeling, range of motion, sensory feedback etc. We do ankle exercises as part of our exercise routine, for which she needs them off as you saw in the video she was barefoot. It would be interesting to see how she does taking steps with the new hinged AFOs that we got last month now that she has done it barefoot. Her preference is not to wear them but we do put them on if we expect to do a lot of standing or walking. You can be certain I will try that to see which is easier for her.

So that brings me back to today and how it came about that today Ainsley took 2 steps. We've been doing these post-surgery exercises twice a day as often as we can. We put a mattress in our bedroom so we could do the exercises on it when she was in casts. We found it useful so we've kept it since.
At our more recent appointments I was talking with her new therapist about this fear issue. She agreed and showed me ways to start teaching her to catch herself so she felt safer. We worked on sit to stands with a chair in front of her.  Then at home I had the idea to have her do the sit to stands in front of the mattress so she could fall forward safely, and it was better because it was lower so harder than a chair. This really helped her gain confidence and she started to look really good when she does that exercise! It was at this time today doing sit to stands that I thought we could expand to actually taking a step.

First to build confidence I had her hold my finger while she stepped forward after standing. She did that so well and then she said she felt comfortable doing it independently. This second video shows how much effort and determination it takes her.



She was successful taking single steps so many times that I asked her to take two steps and that is when I caught it on video! I consider myself agnostic but lately I have taken to holding hands and praying with Ainsley before exercises, asking that God help her be strong and brave and guide us to what we need to do to meet our goals. It helps me remember to have patience. Perhaps these little ideas that I tried were not mine alone. And perhaps in some way it has helped Ainsley have confidence. She always smiles and gives a thumbs up after we say Amen.  In addition we have been praying for our dear friend Harlie along with hundreds of other people, over this past month. Happily she is doing much better. I don't know what part prayer played in today's serendipitous events but I know prayer can't hurt. So I will say if you feel inclined please pray that today's progress continues.

I would love to believe that now that she's done this it will mean more of the same and quick progression to more steps, but nothing with Ainsley is that easy. I expect our next steps will be:
1) continue walking with the walker for endurance
2) work with the crutches to gain confidence
3) continue 2x daily exercises to build strength
4) continue with single steps to build confidence
5) lots of patience and encouragement 



We celebrated tonight with a cake. Steve is in California on business and called home to give congrats. We love this girl to bits and are so happy for this day! We are so proud of her!

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