Calcaneal Osteotomies and Hamstring Lengthening

Our check in time was 9:45 this morning. Ainsley woke up excited for surgery to "fix her legs" by giving us thumbs up and pointing at her legs with a big smile. Even at the hospital waiting, area she was good.

Things started to get a little tough once we scrubbed her down with the wipes and got into the gown. She started to shiver but a stack of warm blankets helped while we waited.

We had an issue regarding intubation which had been arranged to be done fiber optically because of Ainsley's history of severe airway swelling (her airway was completely swollen shut for the first 2 years of her life, hence the trach). It's a long story and I don't have the energy to fully explain, but for complex reasons the anesthesiologist wanted to do it the regular way. It started things off badly, but in the end they did it fiberoptically as planned and that doctor disappeared. I was so thankful that Steve backed me up with a "no way"!

At the hospital it's always hurry up and wait...finally she went back at 11:10. She asked for Steve to walk her back at the last minute. Steve found an all day breakfast joint near the hospital since we hadn't eaten. The food was great and the portions were big, so I saved some for later so it was basically breakfast, lunch and dinner. We headed to the U-Village to do some shopping and received pages every 2 hours, with a status update. I don't do a lot of leisure shopping. Maybe that's why it always feels very weird to pass the time that way while your child is having surgery. But I'm thankful it's so close to the hospital.

They finished about 5:30 and we got the room assignment by about 6:30 and then proceeded to do the intake paperwork and meet with the nurse, Ortho assistant, respiratory, ICU doc etc. 

When we first showed up she was looking rather pale and was connected to CPAP. We found she had good pain control because she is on an epidural. So she's needing less narcotics, which means she's not so sedated and thus doesn't need breathing support. Still we are happy to have the extra attention in the ICU (1 to 1 instead of 1 to 4). 

She hates stickies so it was great to get this stuff off her face! She started to be happier and her color started to improve.

Her feet however took longer to return to a more normal color. as you can see here they were quite 

blue. The casts are split in two down the sides to accommodate the inevitable swelling from surgery. They will be tightened and wrapped before we leave.

She has braces on her legs to protect the muscles from the hamstring lengthening, separated with an abductor bar to protect the hip muscles. She has a catheter for the time being. Tomorrow we will start PT so I can learn to transfer her. She can't bear weight for 6 weeks.

We've used her AAC device to help identify issues. It's been SO helpful!

They wrapped Teddy to match. So sweet!

We finally got some swabs for her mouth. We started a movie and Steve had to leave. She loved having her daddy here and was very sad when he left. I think she's doing well and we'll be transferred to the floor tomorrow. We'll start PT and hopefully she's be happier. Under the circumstances I really can't expect much more. She's been a trooper but she won't be happy until we are out of here and can remove the IV and hospital band which ironically is worse than the casts, catheter, and braces from her perspective. It's expected to be at least 3 days.

I had a VERY difficult time writing this on my iPad keyboard it was malfunctioning in Blogger (I left my laptop this time thinking the iPad would be simpler. That was a mistake.) and will have to come back and fix it later but just wanted to let everyone know how she's doing.  

3 S's - School and Stuff and Surgery

As of September 5th I have two high schoolers (and Ainsley of course).
WOW! Where does the time go?!

Since starting homeschooling last year (which you can read all about here.) I have even less time for blogging.  Though it seems like I've been saying that for years. I feel like even though it's long past there were some highlights from the year that I want to share.

This past year was Adrian's last year at the arts focused middle school. The increased commitment of transportation (reduced carpool) and volunteering (PTSA Board this year) was difficult but we were glad he was able to finish there despite our unplanned change in circumstances (homeschooling). The school was great for Adrian (and Evie when she was there) but he's ready for high school.

Adrian's group dance number in the winter dance show. Adrian's just right of center.

It was great to see them together again at the school. These events are fun for the alumni.

In January the kids had their Winter Recital through the dance studio. 

The biggest news of the year...Evie lost her Doc Martens, pictured here, may they RIP. If you found them (or her monogrammed bag) backstage this year please return them! It was a bit of a shock when it happened and we started seeing her wear other shoes again. She's had several months to mourn the loss. She earned some money working as a counselor at Sing Dance Camp in August which she intends to buy replacements with. She is VERY excited!

Evie turned 16!

Sixteen mason jars of....

...Sweets. (We took it literally.) 

It wasn't a car, but she did get enrolled in driver's ed and she got some cash which was....pretty sweet, from her standpoint. The girl is always broke.

She'd made a joke months before about getting 16 pints of Ben and Jerry's. 

She didn't think I'd really do it so she was surprised and pretty happy, I'd say

 It was a miracle it all fit in the freezer. It was fun to try all the different flavors. They have a crazy lot of flavors. Way more than 16 by the way.

Evie comes up with some crazy ideas. She's persistent at pestering me relentlessly for weeks or months to get me to agree to things that I know better than to do. This year it was making costumes for her and her friends for Comicon. No she doesn't sew, but was convinced she could learn and execute these highly complex costumes. In the end she needed help finishing the Captain America costume (thank you Shannon!). Despite sewing for months and often during the final weeks before she still was not done. We had to pull all nighter together (her first) to finish her Winter Soldier outfit but despite my help she was still working on when they showed up to pick her up. I think this picture was taken at 8:00am.  It wouldn't have been fair to leave her friends hanging after so much effort went into their joint costume.  Despite all my help and working as a team the final days she's convinced she had it all under control and from her perspective it all worked out fine. Lordy! My girl has big ideas. 

Another reason to dress up (besides that nearly everyone does at Comicon) is that they had arranged to have their picture taken with Stan Lee (a birthday gift for Evie). 

And guess who this is!...... (Hint: if you are a Harry Potter fan you will know.)

They had a really great time and they looked awesome! 

But we are NOT EVER DOING THAT AGAIN!

Around this time in addition to starting driver's ed, she had a big part as Bagheera the black panther, in the Jungle Book which meant staying after school 5 days a week. So it was a very busy time.  She was great and we were really proud. I got just a few pics with my cell phone. 

Ainsley had fun watching her sister perform. She was so well behaved during the show which was not quite like the Disney version.

Later in the year Evie performed in Drama Fest and did a great job in a couple shows. She was awarded best supporting actress for one of the roles. Sorry I don't have pictures though. 

Penny too had a birthday. Her actual birthday is April 13th, though we got her on Adrian's 10th birthday. We can't have a mega-post without at least one picture of Penny. 

I got a few nice shots of the kids at Easter this year. 

Adrian did awesome playing the part of Prince Ferdinand in The Tempest. He's really good at physical humor and was good at disguising some of the mishaps that occurred with props not being where they should be. We are hoping, like Evie, he will continue to act in high school. Evie is on the Thespian board this year so I think she will be encouraging him.

The Tempest. The whole cast of the 8th grade show was great! 

Then there were the June dance shows. Evie is second to the end on the right. They reuse the costumes for both shows. The numbers were an interesting twist with a combination of salsa 'en pointe. 

Her ballet class piece. (She's in the center.)

Adrian is on the right. Although he enjoyed taking hip hop class, he's decided not to do it again this year. 

The big graduation day! 4 years of driving 11 miles to school is at an end. I'm sorry but honestly that part is the biggest relief. Adrian loved the school and will miss the close connection he had in such a small school. There are maybe 3 or 4 kids who will attend his high school. The rest are from around the district. 

Adrian with his portfolio. It was fun to see all the graduates work displayed. The school has a lot of talented kids!

Evie had a blast at horse camp again this year!

Ainsley had a ton of fun seeing all the horses and watching her sister perform in the show at the end of camp. Adrian got to come with us this year because he returned from Camp Colman the night before. This was about the time I setup her new phone talker. She was loving it until the novelty wore off. 

I'd love to get Ainsley back to therapeutic riding. Just for nostalgia here's an oldie of her riding when she was 7. So adorable!

This year Evie was riding Cherry. Each horse has their own personality. According to Evie Cherry is "kind of a butt". It's an interesting aspect of going each year. She's had experience riding all different kinds of horses. One year she had the smallest horse (I think he'd count as a pony.) while her friend had the biggest. We missed Antonia (who went to ballet camp this year) who had gone with Evie since the beginning, when they were 10. I'm quite amazed how well Evie's learned to ride with just these weekly summer camps. This year I thought I'd post a video of the show for all the grandparents, aunts and cousins so they can see this is real riding! Warning it's long.

Adrian turned 14. He's all attitude these days. His favorite is pie for breakfast on his birthday. It's tradition now. 

This year he wanted to redo his bedroom. He got a new longer mattress and linens to replace the ones he felt were "from his childhood". He replaced the Once Upon A Time Art with a moody Star Wars poster that suits him. 

He's really into cards at the moment and has a small collection. He got some trick decks for his birthday.

He was happy to get new wood arrows. He still loves to shoot his bow.

Most of the time though you will find him in bed on his laptop playing Roblox.

On 8/2 unfortunately Ainsley and I were hit as we turning into the parking lot for speech therapy on Aurora. The driver of a van carrying a load of cement pulled into the bus lane to pass traffic that was at a total stop and hit me. Thankfully we walked away with nothing but some seatbelt scratches (and a bit of a sore back for me). The impact was strong. My van unfortunately was totaled. The following weeks were consumed with paperwork and trying to sort out our plans of what to do. 

My sister Sarah had offered to lend Evie her car (she bought a new one). Evie is still working on getting her driver's license. She's so busy it's hard to put in the hours. For the time being we are sharing the car until I figure out what what we want to buy. The van was great for hauling Ainsley's walker and for easy access with the remote sliding doors. We're trying out the smaller car to see how we do. After a few weeks pulling the walker out of the trunk I'm finding it's a bigger deal than I'd thought. I miss my van. 

So far she's just taken it around the neighborhood when there is light traffic (with us in the car).

Ainsley had an awesome time in the pool this summer! She kept pointing at her trach site asking me to film her going under. (Which she never really was able to do without inhaling water.) But still it was great. It was great exercise to keep up her strength in preparation her for surgery in September. She will be in foot casts for 8 weeks so no getting wet. After that then she'll be doing some swim therapy as part of her recovery so that should make her happy. She loves the water!

As you can see from this picture her legs are quite bent when she walks which is tiring. She is having her hamstrings lengthened so she can straighten her legs at the knees. They are also working again on her left hip. The biggest thing they are trying to fix is how her feet roll in. Which you can see in the next photo. 

We are hoping the calcaneal osteotomies will give her more stable feet. With any luck these two changes could be what is needed for Ainsley to be able to walk independently even a little. She still has balance issues from here cerebellum so we will have to see. It's going to take time. We'll be doing a lot of therapy after the initial 8 week recovery period. 

On the 11th we check in at 9:45 am. Once they get her back and get started she will be away for about 8 1/2 hours (about 2 hours of that is non-surgical, for a chest CT and such). Please keep us in your thoughts during the day. I will update here if there is any news and try to continue to update during the week. We're expecting to be inpatient for 3-5 days. Thanks for checking in. XOXOXO.