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.


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!


  1. It's early morning and I just hopped out of the shower, will be going back to bed very soon.
    Missing you so much lately, and I loved this Christmas post, except man it made me miss you more. With that said, what? Why are the kids so damn big! Where is the time going and it truly seems to be escaping me, I feel run ragged and barely coming up for air these days. Six more weeks of school and I can have my life back I am hoping which means catch up time! I am secretly planning on coming to see you in the fall for a couple of days! We are getting a hotel and celebrating our friendship, making it happen sister friend.
    Your house is a dream and I love the touch of style that you have so carefully placed in all areas, truly Susan you have great taste and it is a dream!
    I love that she watches YouTube videos on toys and I didn't know this was a thing for kids but it's awesome they can do this! Kind of,like,genuine reviews about merchandise before we buy.
    How flipping cute is that the love for her doll! Makes my heart sing.
    Wow, Evie has grown and how beautiful! She looked amazing on that float, so elegant she is looking and so beautiful!
    When did Adrian start looking like a young teenage man/boy? Jeez! Everybody looks so great and I love your Christmases! That dreamy snow pic of the house? Heck maybe I am going to move in.

    Your beautiful touch, your effort, and your time that you have spent loving your family is so evident and I am proud to call you a friend.
    Your family is so very blessed they have you.

    I love you friend and I am looking forward to catching up again.
    Much love and always thinking about you.

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