Christmas!

Hi all, here’s an overdue update!
We’ve been busy with all of the holidays and despite the new fracture, it’s been pretty wonderful! The timing was also not the worst as I didn’t have to take any extra time off work and we were already planning to stay home and not host anyone. We were able to rest at home with no pressure or plans. We got Suzie out of the house on Christmas Eve for our tradition of hot cocoa and looking at Christmas lights. She didn’t want to be moved but once she was in the car, she was comfortable and loved the lights and would clap at the “pretty houses.” It’s so helpful that she fits in her car seat, high chair and wheelchair despite the big cast! Casts are not usually preferred or needed after rodding surgery (since the rod provides an internal splint) so this may be her last Spica cast ever! 🤞🤞🤞

We all enjoyed a low key Christmas and Suzie got the hang of presents (which she calls “pie”) very quickly. She would ask for “more pie please!” 😆We stayed in jammies most of the day then we’re treated to a feast at the home of some dear friends. Although a little snow would have been nice, it’s much easier hauling a wheelchair around in dry conditions!

Suzie got a doll with a wheelchair and cast and Addie drove it around with Suzie for most of the day. She’s such a good sister! Sure they have siblings spats and get annoyed with each other but Addie has impressed me so much. I now trust her more with Suzie than most adults. She’s seen first hand how easily she can break and has a heightened awareness of her safety and what to watch out for. They spend hours taking selfies and videos with funny filters and giggling together. Yesterday, during Addie’s birthday sleepover, Addie & her friends played hide and seek with Suzie in her wheelchair. They pretended not to see Suzie as they searched nearby rooms and it was hilarious to watch Suzie slink down in her chair and explode into giggles as they kept missing her and she would call out “peek a boo” so they could find her. It was too good!

We leave this week to go to the Children’s Hospital and Medical Center in Omaha. She has the OI clinic and pre-op evaluations this week and then surgery on 1/15. They were unable to move up her surgery due the holidays and a booked solid schedule. Her femur may have to be rebroken (an osteotomy) if it is starting to heal, but I anticipate that they will have to break a few areas to straighten out her bones.
I am coming back prior to the surgery to be with the big kids and Brian will stay with Suzie and drive her home. He is more than capable, but I’m still nervous. Since her recent break, she has reverted back to wanting me the most and has been extra clingy and needy. She also has pretty bad medical trauma and anxiety. A specific prayer request is for her to find comfort from Brian while at the hospital and for her trust in us to keep growing. This is our first elective procedure and she doesn’t have the capacity to understand what is happening or why. We are more than ready to have this surgery done and start the recovery process!

Advent candles

Getting a swim in while out of the cast

Caroling tradition with the Daveys

Excited for school 

Hanging at soccer games

Looking at Christmas lights

Doing her Hulk impression with those purple shorts

Another Break...

We have another femur fracture. This poor girl has been through so much! 
She was simply cruising along the couch and it snapped. She has surgery scheduled next month to get rods that would prevent big breaks happening like this. We were sooo close. We aren’t sure of a plan yet but praying that this doesn’t delay surgery.

Broken femur, you can see it isn't right

Suzie is easily moved on a serving tray, she insists on it

Daddy feeding her some dinner

We let Suzie pick the cast color. Yesterday she was certain she wanted orange (just like Addie had) but this morning she had a last minute change and selected green. Well it’s a bit brighter than the sample was- it’s neon green! 😳
Suzie woke up a bit grumpy and was crying. When she started talking, all she wanted was her tray and was so mad that we didn’t have it to put her on it! 😆
She’s resting now. I hate to say it but this does get easier each time around. Not easier to see her in pain, but we have met just about every orthopedist at Children’s, we know what warrants the ER vs meds at home and a visit the next day and we are getting good at cast care and creative ways to dress around a cast!
The hardest part was Suzie crying and asking why after it happened. Someday we can explain why she goes through this and others don’t.
She’s had 5 fractures since we brought her home 9 months ago. She had 6 documented prior to that, likely more. She has already almost doubled her fracture count with 3 of them major breaks. Funny (but not really) thing is that only one of her breaks was from a fall and that was probably the most minor. All of the others occurred while doing normal daily activities- standing, crawling, scooting. It’s so hard to see her get hurt but the confidence and independence she is getting from being able to explore her own world is worth every set back. She will never go through another break alone!
Thank you all for sending love and prayers!

After surgery, not wanted to see the cast

Leaving the hospital

surgery.

"Don't Break!"

Check out this girlie! 😱😱😱
She gets her cast off next week but nothing holds her back. She’s standing and walking a little again as mommy holds her breath and prays, “please don’t break!”

jamming some tunes on her iPod

School Has Finally Started!

School has finally started! 

Suzie is going to Kindergarten half day as of Monday. I was able stay at the school for the first 2 days and she did well. Our school has been wonderful and gave her a one-to-one aide even without an IEP (individualized education plan) which is amazing and is really the only reason that she is able to go. It is very clear that her attention span and ability to follow instruction is not at all at the kindergarten level. Her aide keeps her on task and helps keep her attention. She also gets her in and out of her wheelchair, changes her diaper and keeps her safe. She is sweet, patient and has a loving demeanor- an absolute answer to prayer! Suzie really likes her and gave her a big hug today when she saw her.

Today was her first day at school without me...the real test! And she did great!! She cried when I left and I stayed outside her classroom hoping that she would calm down before I left. Sadly, she didn’t stop and I finally had to go to work. It broke my heart to hear her calling out for me- not knowing whether I would come back or not. But, apparently she stopped crying after about 20 minutes and did great the rest of the day! yay!! I’m so proud of our brave little girl!!

Waiting for the doors to open for school

Thumbs Up after her day!

Happy Thanksgiving!

Happy Thanksgiving! 
Our life is currently a whirlwind of appointments, paperwork, school visits, casts & exhaustion but we are so thankful for all of it and how far we’ve come. This morning, Suzie was coloring in bed and she drew stick figures and said they were Phil (our dog), Addie & Mason. This a big development step in learning to write and draw! In just 8 months she has gone from random scribbling to actually coloring objects and now stick figures! She’s flying through developmental stages!

Meeting the Para for Kindergarten

Well our start of Kindergarten was delayed until Suzie’s Para could start. Her first day was today, so we went and met her and will officially start after Thanksgiving break! She seems great- gentle and loving and has worked with other special needs kiddos. 

The kids in Suzie’s class are so sweet! They all ran over and gave her hugs.