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!

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.

OCTOBER

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. 

NOVEMBER

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.