Saturday, December 22, 2018

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! ðŸ˜³
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! ðŸ˜†
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.

Sunday, December 2, 2018

"Don't Break!"

Check out this girlie! ðŸ˜±ðŸ˜±ðŸ˜±
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

Wednesday, November 28, 2018

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!

Thursday, November 22, 2018

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!


Thursday, November 15, 2018

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. 





Tuesday, November 6, 2018

Halloween and Kindergarten

Here’s a few updates on little miss Suzie- she got a new cast yesterday- pink this time! It’s been 4 weeks since her tibia break and new X-rays show it was bad...broken completely through. It had been lined up well initially so the break was barely visible. Since then, the bones shifted and are now healing, but are not lined up as well and she has a big bump on her shin. I’m pretty sure it shifted the first few days after the break, which explains why she had so much pain. She’ll have the short leg cast for a few more weeks to protect it as she starts putting some weight on it again.
Halloween was the best! Suzie loved her costume- especially her mask and quickly got the hang of trick or treating. He wheelchair was perfect in the dark with light up front wheels and mom and dad got a workout lifting her up stairs to get to doorways!
And the big news- Suzie is starting Kindergarten next week!! The district had hired an aid for her which is really the whole reason this is even possible. They will be with her, keeping her safe, helping her around, in and out of her wheelchair and doing diaper changes. We have not met them yet so prayers that Suzie bonds to the aid quickly! We’ve been taking Suzie in each morning this week to get her used to the school and classroom. Every day is a little better, but the true test will be when we leave her. Our plan is for her to go half day for the rest of the School year and then repeat kindergarten again next year, so that takes a lot of the pressure off but we still want to see her succeed and be safe. She loves that she is finally going to school like the big kids!




Kassie carrying Suzie down some steps









Wednesday, October 17, 2018

A Tibia Fracture

It was a tibia fracture - not a big one, but a hairline fracture that goes across the middle of her bone and was SUPER painful. I have never seen Suzie in so much pain. Her femur fracture was very bad but by the next day her pain was well controlled. This one took several days. It was ok unless we had to move her- we ended up using a serving tray to keep her leg steady while we carried her. 

I tried to unwrap and fix her splint Friday and Saturday but she was a complete wreck and shaking from pain & fear so I gave up. She was supposed to have an orthopedics appt Friday but it was too painful to move her and I couldn’t drive her to the clinic by myself so I canceled it.

She stayed in our makeshift splint until Sunday when I finally thought she was comfortable enough to rewrap it. She cried and wanted us to stop, but we got her out of the splint and cut her pants off (she had worn them since Wednesday) and got her rewrapped more securely.


By Monday she was doing much better and was able to go to daycare (because they are amazing). She has her little wheelchair there and apparently was zipping around all day. She missed her friends! She had to show them all her “owie.”


Today I took her to ortho and they tried to put her in a long leg cast, but I fought that and got her in a new splint- secure and properly aligned. A cast would put her femur at risk of another fracture. She was very scared and cried the whole time but as soon as the splint was done, she calmed down and was obviously more comfortable. She now fits better in her wheelchair and insisted on wheeling herself out of the clinic. Its impossible not to smile as you see her coming down the hall with her light up wheels!
We are so happy to have smiles again!! 


This girl has given us a roller coaster of emotions this year, and after a tough couple days, having her smile and show her sassy side lifted my heart so much. The lows make the good moments even better!


transport by tray


a lot of TV time

getting out the house for Addie's game

hanging with daddy, still on tray

singing Happy Birthday to Mason, still on tray

Oh yea, we also had a bday sleepover in the middle of this

writing on her Boogie Board. she learned to write the letter S! 

new splint in purple


Rolling to her visit at the clinic

back to freedom in the chair


the little table they made for her at daycare, fits over her wheelchair