Jan 13, 2020

Hello? 2020

Happy NEW year! Are you out there? I'm sorry for disappearing for so long. I've started posts so many times but as the months passed writing a full update grew into an impossible task. I'd considered letting this blog slip away as times have changed and we are all overwhelmed with social media and information about each other's lives. Ultimately though I've decided I still want to share our victories. I know there are lot of us in the trenches out there and sometimes we need a reminder that the victories DO COME so let's keep at it! For Ainsley some are big, some are small, some you might barely notice if you aren't paying close attention, but they happen, and that's what motivates me to keep going!

If you have ideas for things you'd like to see me write about please post in the comments. I'm really excited for 2020 and am hoping it brings GREAT THINGS! I am open to change. I may even consider an off-shoot of this blog. Give me your ideas!

For now it seems a good place to start is right here, right now, with a focus on my work with Ainsley. I guess I'm saying I plan to write about Ainsley, what she is up to and how she is doing, more than the rest of the family.  If everyone misses hearing and seeing my big kids or seeing what we're up to around the house I may change my mind. I may even go back in time and add some posts, back dated. I'm sneaky like that. Plus I really do miss being able to use this blog as my memory of what happened when, because my actual memory is shot. But let's be real, as much as I may like to do that, I probably won't.


Since I last posted the biggest news is Ainsley turned 13! She was thrilled to get 2 new Baby Alive dolls (One is a mermaid she can take into the pool, given to her by her big sister, who paid for it herself using money she earned working as a princess for hire for birthday parties.)!  She was able to blow out the candle all by herself this year! I hope she made a big wish! So YIKES! I have 3 TEENAGERS! How did that happen?!

Ainsley had 2 surgeries (to correct a leg length discrepancy, a long story for another day). Evie graduated high school and is now at college at the UW! We are so proud of her! Both Evie and Adrian got their driver's licenses in 2019, within a week or so of each other (yes Evie is 2.5 years older she just took longer, story of her life). That has been life changing! I am thrilled not to spend so much time chauffeuring but I am terrified (and the Mini was in an accident once already). Aside from that there have been no major changes.

We are still homeschooling. Although it isn't something I ever expected to do I still believe it is the best option for Ainsley. She's been really healthy (we miss out on all those school germs) and happy (when I ask her she says she wants to keep homeschooling). The best thing is that we can "do school" in our pajamas when we want to AND she can bring all the girls. She enjoys "teaching" them.  One element of a 4 Blocks approach to literacy is independent reading. This week she chose this book about animal skeletons to "read" to her girls. If you are interested in literacy for individuals with disabilities you may want to check out the much anticipated and newly released: Comprehensive Literacy for All.

There is no question teaching someone who cannot speak to read is more challenging but research shows again and again that it can be done! AAC is an important piece of learning for a non-verbal learner.  I was thrilled this week to get this sentence 100% spontaneously and independently! It is hard to believe when we selected Ainsley's first SGD(Speech Generating Device) in 2009, when she was 3, we weren't sure she would EVER be able to use a touchscreen. Now not only does she use Proloquo2Go like a pro, she plays video games and can do pretty much anything else you can think of on her tablet! It's her favorite thing next to her dolls. Look out, when she learns to spell she might start sending you texts! Some of our family (and Evie's boyfriend) have already started receiving them! If you haven't, don't be jealous, count yourself lucky!

Also this week (Wow! I guess it was kind of a big week!) Ainsley surprised me by reading the word "see". We were working on "ee" words this week and although there were plenty simple ones she couldn't read (and let's be honest I was very frustrated) she then turned around shocked me by going down a level in her AAC device (in the look+ folder) and selecting the word see when asked to read the word off the magnet board. She was unable to read the words me, he, she, or we despite working on them for years and reviewing them earlier in the day and writing them repeatedly. It just goes to show that although learning isn't easy she can do it. She can also reliably read cat, dog and of course her name. The path may be curvy but I believe she will get there in the end.


In case you are curious how to use AAC to teach your child to read, one way that can look is like this.

Homeschooling also allows us the flexibility to work therapy and appointments into our days that we used to have to leave school for. We've been doing weekly physical therapy with a PT and similar daily exercises at home (trying our best to stick with it) as well as weekly exercises and walking at the specially heated 92 degree therapy pool. We've been using a Scuttlebutt in the pool to give Ainsley support to walk without hands. (A huge shout out to my friend Jenny for giving me the idea!) It's given Ainsley so much confidence in the pool! In addition to it she wears these 5 pound ankle weights which help keep her upright. She will easily spend two hours in the pool and I LOVE that I can relax a little because I know she's safe. (I'm still always within arms reach, except for a few seconds while filming because she's gotten SO GOOD at this since August.)

She's always been such a little fish! She has so much fun she doesn't realize how hard she is working. She packs in more strengthening into our swim days than we could ever do on land, including JUMPING! It's also a good social opportunity. So many people love seeing her each week and I think she brightens their day with her energy and enthusiasm.


She's even using goggles to learn to hold her breath and go under. It's one step closer to actual swimming. 


Although in the shallower water she does actually balance on her feet to walk (she's not just paddling) it hasn't transferred over to walking on land. Due to her Cerebellum and Pons malformation she is easily thrown off balance and lacks adequate motor planning response time to feel safe at this point. We are working to push her a little past her comfort point. Her therapist, Joe, is so patient and kind and that helps make it as fun as possible for her (she still kind of hates it). She always brings a doll and he always talks to her about it and gives her the chance to talk to him using her AAC device. As you can see here in this video she is getting so strong! 

Thursday Joe said he thinks she is ready to start working on transitioning from a walker to a single crutch (Funny she used to complain LOUDLY about the crutches and now she's thinking 2 crutches would be pretty great compared to the1.). You can see she's not thrilled about this. It's going to be some work and take some time but it would be a great option for her to have! We're trying it out in the carpeted "schoolroom" and once she's more comfortable I hope we can get her to try it around the house. She'll still use her walker outside the home or her wheelchair for long outings. We couldn't be more proud and excited. And since that is not the nicest picture of Ainsley I'll wrap up with this one.

We started out our 2020 return to homeschooling by making a list of reasons that Ainsley wants to learn to read and write. She wants to be able to send texts and type to search the internet and TV for doll videos. I made sure she knew she had the option to say no but she used her AAC system to say YES she wants to be able to read books herself. The smile looks genuine. I think she's motivated and this is her year! 

 I'm expecting great things for Ainsley in 2020! And I hope for the same for you and your family!

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!

Feb 27, 2018

2017 Wrap Up Part 2

This is the second half of my 2017 wrap up. For Part 1 click here. As I said in that post this blog serves as my memory so I'm including photos even though they are old and not as relevant now but I still hope you enjoy seeing them anyway.

DECEMBER 

As I said in my prior post I really can't imagine how a child would be able to attend regular school during periods like this. Honestly it's one of the many reasons I'm grateful to be a stay at home mom. There have been many times since Ainsley was born that I stayed with her every night in the hospital and cared for her afterward. So many appointments. Sick Days.  Although I know moms whose children are medical complex who have been able to work outside the home I do think it's hard. Though maybe they find it easier to keep life in balance. Regardless, Steve has surely appreciated that he rarely had to take time of work for Ainsley's care. Although she's been in a hip cast (followed by a brace for months) two times this surgery recovery was definitely the most difficult because of the restriction of no weight bearing and the pain of recovery.

Really the amount of wasting of her calf muscles was severe, as you would expect and can see here.

Unfortunately pool therapy, which was her favorite, only went until mid December because they close it annually for repairs. We were able to restart in January.

Although she was having pain we tried to get her out for longer periods, like when Steve would take the kids to their vocal lesson at Redmond Town Center. 

In early December our very favorite tradition is Breakfast With Santa, which is put on by our friend and realtor, Darcy. 

Her husband makes pancakes and sausage and they put out quite a spread of treats. Like me Darcy likes to entertain. I appreciate the effort. She always puts out extra touches to make it special and each year it's a little different.





Santa T is the BEST! He tells us he looks forward to seeing Ainsley every year. 


  Ainsley loves this tradition more than anything we do!

Evie and Adrian still look forward to it too. Every year we enjoy seeing Darcy's daughter Nikki who is a year older than Evie. They attended birthday parties together when they were small, for their friend Matty.

Ainsley used her communication device to wish Santa a Merry Christmas as well as to say that she hoped for a surprise. Which was really a way of saying she didn't have any special desires. Right before Christmas she told me she actually wanted a giant fidget spinner.

Our official 2017 Santa pic, which I have been taking myself now at these breakfasts for seven years. 

Santa picked out a reindeer just for her and you can see how much she loved it.  



I think Santa enjoys her visit nearly as much as she does. 


The girl can be such pure joy!

We had our usual tradition of a trip to the Redwood Tree Farm which is conveniently a mile or so down the road. 


It's our tradition to bake appetizers to eat for dinner while we work. 

 This is about as much help as we got from the big kids right here. 

 Ainsley, bless her heart, tried and I would just go back later and fix where she had 3 ornaments in the same spot on a single branch.

The finished tree. 

This year I made Santa hats for our silhouettes. It was fun to do something a little creative.



As if December wasn't busy enough, in the middle of the month the high school had auditions for their upcoming musical, The Music Man. Evie got a part in the dance ensemble which she is very excited for. It opens on March 1st. We celebrated with snowman cakes. I love Trader Joe's!



We were still doing daily exercises (twice a day) and therapy at the hospital 3 times a week. Finally now that her legs were straighter they agreed to make her a shoe lift since one leg is effectively longer than the other (partially a hip issue).  

She was finally strong enough that she could spend limited time in her stander. 

Once she got the shoe lift it had an instant effect and really helped. It wasn't long before she had the skills to navigate with the crutches by herself in the house. That worked pretty well until the day the dog nearly knocked her over by jumping up. Now she's terrified of the dog.

I successfully participated in the AAC challenge to model for 12 Days in December (#12DaysofModeling). It was a bad time to be taking on anything extra but I'm passionate about AAC so I did it. I also made the mistake of buying a Christmas printable adaptive book that took 10 times more time to put together than expected at the busiest time of year. This is the only, first and last but it turned out to be fun and a good way to learn about the senses. 

Here Ainsley is watching Steve make the Christmas pudding while we modeled to her. Steve is explaining how exciting it will be when it is lit on fire on Christmas.



Evie had to be in Bellevue for her role at the Ballerina on the float in the Snowflake Lane parade. She was so excited to get the job even though it meant giving up dance for an entire month. It was also difficult for her to get all her homework done as she's taking some advanced courses this year. Somehow though we made it through, from Black Friday to Christmas Eve. That night it actually snowed and was magical. 

I was so proud of her as she took the time to make each child feel special as she posed for pictures. 

I loved seeing the teenage boys line up to take their picture with her. She had some fans.

Her many year of dance classes showed. Because of the moving float she couldn't wear pointe shoes and she had to remain holding the grab bar while moving but honestly safety first is just fine with me.




It had been so cold I didn't bring Ainsley with us the night we met up with some of my family, but I promised we'd take her this time, so I did. Sadly she was freezing and miserable. Steve stayed with her so I was free to roam the crowd with my camera.  It was so freeing and something I'll never forget. I got so many great pictures of the performers and floats but this post is already so heavy with photos. Afterward I had to warm her hands on my stomach and they were like ice. People line up to get their spots long before the show starts. 

I do have to say it's rather disconcerting to have your child in a performance that is guarded by armed police. They brought in trucks to block the ends of the streets so no one could drive into the street either. This is the world we are living in.

As the snow fell on our faces it was truly a magical night. People were happy and you could feel the true Christmas spirit. I haven't had such a nice Christmas Eve ever. Though I admit that may have also been slightly in part to my relief that Snowflake Lane was finished.

By the time we got home it was covered in snow and so peaceful. In our mild climate it's rare to have snow and a White Christmas is something rare and special here and it was perfect, just the right amount so that people could get to our house the next day, since we were hosting dinner.

In the morning the snow outside brightened the whole house.

Ainsley was so excited when her teenage sister and brother finally got out of bed and she saw that Santa had come and eaten the cookies.


We started with stockings while waiting for our breakfast to be done.

Ainsley was thrilled that somehow Santa knew she wanted a spinner. 
It was light up which is even better than a giant one. 


Evie and Adrian received regular alarm clocks so they have an option other than using their phones. Yes this means what you think. Stricter phone policies may be coming down the pike.


We tortured Penny with some Christmas accessories.

Ainsley received a pile of Smurf toys that she was quite excited about.

Evie and Adrian were surprised with iPad minis. I am planning to install Ainsley's communication software on them to get a little support modeling. 

Ainsley loves watching these Babe Alive videos on YouTube. She's rather obsessed really. Much to our chagrin Santa brought her one. She loves it and takes it everywhere.

Adrian's love is for gummy candy.

Since we were at the mall so often we got a killer deal on coats at Macy's they were 60% off the sale price.  This Christmas was the year of coats. Steve got 3. 

Even I got one which has prepared me for our next snow day.

Adrian modeling his new jacket and shoes, looking a bit like James Dean.

I was so SUPER excited for my gift, a bluetooth Grammophone. It's a speaker that really plays through the horn but also such a cool art piece! 

With Ainsley having her hamstrings lengthened she was suddenly taller, and just taller anyway so she'd outgrown her crutches. Walk Easy was so awesome and rush shipped the order for free so it arrived by Christmas. 

Ainsley loves them. Yellow is her favorite color. They have special anti-slip tips to make them safer to use. 

Ainsley thought they also made a great stand for her new doll.


 David (Steve's dad) and Roger (our family friend and Evie's guitar instructor) brought 
cockles and Champagne. 
To serve together. 
They are British.

Pickled mini clams, basically. 
Yeah gross, I know.

 But it was a fun and they'd been planning it for months. I'd say everyone enjoyed the experience and it was a good diversion. 

 Steve cooked the Prime Rib and miscalculated the time in his recipe again so a late dinner again. This year I noted the need to double the cook time for him so this will never happen again. It was worth the wait.  


The conversation was great and all were in a great mood. A really fun Christmas this year! 


Shortly after everyone showed up Ainsley asked about her cousins Issabella and Owen. I was so thankful for her device because they weren't coming and I hate to think if she'd have waited for them to come all night.

A few days later we saw them.

I got a picture of my (birth) dad with his painting of "The Fat Lady" from the Harry Potter party so many years ago. He has so much talent. He painted this and a second picture for us in a few hours. I started a gallery wall project and I got it framed to serve as the anchor piece. We all love it. The project is going to take awhile but after years of wanting to do it at least it's started.  Pictures will come.

The cousins played with Ainsley and that made her SO happy.  

After a few days off for Christmas we had to get back on track with the exercises. Her therapist is so great and Ainsley was very motivated by seeing her doll do the exercises first. 

She had been having severe foot pain in the right foot. She was required to wear AFO's. Finally it got to the point that she was screaming in pain when we would put the AFO on the right foot but not the left so finally I figured out that it wasn't surgical but actually the AFO. The orthotist made a special trip to fix it and finally after weeks of pain it was tolerable. It was a bit too tight like tight like too narrow of a shoe so her foot had started to swell because she was wearing them all the time. Poor kid. We just keep going, doing the best we can figuring all this stuff out.

New Year's was spent at home. We were all pretty exhausted by December and the months that came before that.  I ordered myself a special 2018 planner for Christmas. After 11 years as Ainsley's primary caregiver I'm suffering from Caregiver Burnout, it's a real thing. So I'm making 2018 my year! It seems appropriate since 18 is my lucky number. 

We've got our work still cut out for us in 2018 but we are looking forward to this year so much! I think it will bring great things for Ainsley and our entire family and hope it does for you too!