Feb 21, 2018

2017 Wrap Up Part 1

I've been feeling terrible that it's been so long since my last post, the one month update after Ainsley's surgery. I've been gathering photos for months. Try as I might each week to squeeze in the writing I just couldn't prioritize it and even now after bumping it off my must-do list for several weeks in a row I am writing this late at night while everyone else is asleep because that's really the only way I can write. So much has happened but I always like to share some photos of the big things and this blog serves as my memory over the years so I'll recap even though this is all long past. I hope you enjoy it anyway.


Ainsley was still in casts in October, unable to bear any weight at all on her feet. We struggled to think how we could make her 11th birthday fun despite the restrictions. Luckily the night before, literally as the party store closed I found my solution in the form of a jellyfish. We blindfolded her and wheeled her into the TV room where we'd set up the lighted jellyfish tent for her. She loves play forts so much, my hope was that she would love this just as much.

 I set her up in it to watch the Little Mermaid and have popcorn (her favorite). Since her birthday the jelly has been a fun place to hang out during breaks in our homeschooling days. I've been so thankful that we made the decision to homeschool. I can't even imagine how she would have gotten through all this in public school. 

 As part of her gift she got a mermaid doll, a stuffed narwhal and octopus from Evie. Friends to keep her company on her special day. 

She even got a mermaid tail blanket though she wasn't thrilled with it and it didn't fit well with the casts. I'm still hoping it grows on her. Evie loved it.

I added a few Dory figures to one of those giant Costco chocolate cakes. BAM!
An awesome birthday cake fitting our theme.

 For the first time Ainsley was able to blow out her candle by herself. What a thrilling moment!

She even enjoyed eating the cake which was great! It never gets old after so many sad years of birthday cakes she couldn't enjoy. It's hard to believe she is the same child who grimaced at the smallest finger lick of frosting.

When everyone got home we set her up to play Mario Brothers with the gifts she received in the mail from Grandma and Grandpa. She was in heaven!

She got Mario figures from them too! All in all I think she had a great day!

On Halloween we had an appointment at Children's for cast replacement. Our surgeon is difficult to get in to see so you can't be too picky about appointment dates. I knew it wouldn't be an easy appointment. She hates the saws, I think she worries she'll get cut no matter how many times we show her it won't. And after 7 weeks of being in casts her legs and feet were very sensitive. 

 They wanted x-rays to check how she was healing. In standing position, without standing. So I aligned the plate and then pressed as if she were standing. 

They also molded her legs for AFOs which she would need to wear as soon as the casts come off. She is terribly afraid of this part where they cut with the knife.

They allowed us to clean her up as best we could in a basin before recasting her.

Here you can see a before and after x-ray side by side. The alignment of the bones in her feet is straighter on the right, after surgery. In the picture further above you can see I am trying to simulate weight bearing on the foot for the x-ray using a clear block. The objective of surgery was to cut the heal bones, pin things together and add a wedge of donor bone, all in the hopes that it would keep her foot straight, or in other words, make it so that it collapses less so she has a more stable foot (feet) for standing and walking. The surgeon didn't use pins because she was concerned about the trauma of removing them, and there was a bit of movement in the bones, leaving a bit of a "step", but she is hoping that it's not a problem. 

It's really hard to go through these things with your child but you just have to get through it.

Ainsley is very good about communicating her feelings clearly and effectively with a minimum of words. I always laugh when medical professionals ask how I would know if she's in pain. Being non-verbal doesn't mean you can't communicate. In this case Halloween at the hospital was VERY thumbs down! She had to wear the second casts for another 3 weeks but was able to ease into weight bearing wearing the special "shoes" you see above.

Despite everything Steve decided to go ahead and put out the lights and graveyard this year.

Evie always does some elaborate pumpkin. Teen Wolf this year.

We put out our Teal Pumpkin to promote inclusion for all Trick-or-Treaters.  It would have meant a lot to us when Ainsley was g-tube fed to have non-food treats. 

Adrian was sick on Halloween, poor kid. I borrowed a gown from the hospital so he could "dress up" (just for the photo really) he went straight back to bed. Evie was Malfoy from A Very Potter Musical (she's obsessed with musicals right now). 

Ainsley was Ketchup and a Hotdog because it worked with casts and we already had the costumes (Penny was a hotdog the year Evie was ketchup and her friend was mustard.) 

 Steve took her out for a bit, he was a good dad and even had her use her AAC device at the houses to say Trick-or-Treat. I'm sure she had fun but she was pretty beat and happy to get back home to eat her candy. 

Our neighbors blessed her with some good full size candy bars and I was very happy that she could enjoy them. 


Now that we had the new casts our work began, getting her comfortable bearing weight. While she could touch her feet on the floor without pain standing even for a few seconds was quite unbearable. 

And though it was hard...

we managed somehow through her exercises twice every day. 

We had weekly sessions at Children's.  2-3 times a week once the casts came off. The rehabilitation process was intense. More than I'd anticipated.

In November she got very sick. Had 103+ degree fever for nearly a week. She had been having difficulty breathing and eating after the surgery, likely a side effect of being intubated for 6 hours. Then with her being inactive she was weak. Seeing her sick like this was scary. During this entire period she'd been sleeping in my bed (Steve took her bed and was able to sleep uninterrupted). She needed me because every night she woke suddenly with shooting pains. I would help her calm down. There was a night the CPAP suddenly wasn't quite cutting it and she woke up pointing to her trach stoma site while trying to catch her breath.   In that moment I actually thought she might not make it as I watched her trach stoma sink in with each breath. I have it on video but I know it would scare you. A dear friend of ours daughter had surgery around the same time and she had to be re-trached due to complications. I was feeling fearful we were headed that way. I called her the next morning. 

I took Ainsley in to urgent care at Children's since I knew they had all the x-ray and lab equipment as well as her medical records and medical staff that are used to highly complex kids. I was thinking this would be the time she had pneumonia, especially since she was highly at risk of aspirating while eating now, but again, no pneumonia. They ran a swab to test her and it was parainfluenza virus in other words, A COLD. People if you or your children are sick, please stay home and don't ever knowingly come around people with compromised health! Let us know so we have a choice and we will stay away if needed.

 The doc was great, she took everything seriously and she called our surgeon who was worried that perhaps Ainsley had an infection under her casts so she ordered that they be cut off right then and asked us to keep our appointment in clinic the next day (they put us in a special room). We knew with the respiratory issues she was having it was was unlikely the fever was due to an issue with her feet but our surgeon is thorough. 

 Her feet were fine and we headed to the shoe store to buy shoes that fit over the AFOs. 3 sizes bigger than her last pair!!! Initially she HAD to wear the AFOs all day to protect the bones of her feet so getting shoes that fit the new orthotics was urgent. We were also still using the leg braces at night to maintain the straightness of her legs from the hamstring lengthening surgery. 

Bathing had been so difficult during this period (consisting of laying on a portable mattress with just the hair in the shower and sponge bathing the body) so the first thing I did was give her a long bath, shampoo and pedicure. Her poor little legs were so thin from lack of use. She could barely stand to be touched on her feet they were so sensitive. We had a LOT of work ahead of us. 

Thanksgiving was just around the corner. 

And the day after Thanksgiving Evie started her role as the Ballerina in the Snowflake Lane parade in Bellevue. We took Ainsley though she was still weak. There was a meet and greet at the hotel for the kick off so it was a special night. Steve's whole family came to the opening night.  They are so supportive. I really appreciated it and know Evie did too. They had to work out the kinks since this was the first time performing it in the streets (they close down several blocks). I was so proud of Evie. She was so great with the kids. I do think she's developed into an amazingly kind and caring young woman in part because of having a special sister. I was so proud of how she conducted herself as she posed for pictures with people and that she took the time to talk to each child and make them feel special. 

Unfortunately however, the driving for Snowflake Lane was a big commitment. Evie wasn't ready to drive herself so we had no choice but to take her. So Black Friday for us was the beginning of driving to Bellevue in rush hour traffic for 31 days straight through Christmas Eve. Somehow though like everything else we made it through that.  

At the same time began the hard work of rebuilding muscle and relearning to stand and walk for Ainsley. 

We attempted the Safe Gait trainer again, but unfortunately it did not help a bit.  She was fearful and no closer to hands free walking than with the walker or crutches so we stopped using it and stuck to basic exercises. 

We had daily conversations about being strong and brave, for many months. 

Weekly therapy in the heated pool was her favorite of the therapies. She could work the entire hour with no pain and would work really hard. It was so great to see her happy while working so hard. It gave me hope too, to see her this way, I could imagine a day that this surgery would be in the past and not affecting her and us daily. And during these times I could feel that it was going to be worth it.  

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