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

A New Wheelchair!

We got new wheels this week- a walker and a wheelchair, both purple and sooo cute!
Suzie isn’t quite sure of the walker yet, but took to the wheelchair very quickly and loves it! She insists on propelling herself and anytime I offer to help, she says, “I got it!”

This wheelchair has been a game changer!! 🙌 Suzie LOVES it and asks to use it first thing in the morning. I took it to the grocery store and she was amazing. She got to follow me and the cart, explore a little and grabbed a few items off shelves. Totally appropriate 5 year old behavior! It was magical! Despite the ease of the stroller, I think we’ve seen it’s last days. 

I was afraid that she may like the wheelchair too much and not get as much leg exercise, but she’s actually standing up even more and attempting to take steps! She’s also figuring out the walker. I’m not sure how much her legs can hold her, but she is certainly determined and we have a renewed hope that she will be walking one day!

Six Months!

Suzie has been home 6 months!

I am happy to report that she is doing amazingly well. She has fully accepted Brian and cries out for him just as often as mommy. She is growing! She has gained 4 pounds and 2 inches since we came home. 
Her arm had just a small fracture in August, so we had it splinted for several days and her on pain meds but she started using it normally again after 5-6 days. We have gotten used to large major fractures, so a small one was a big relief and much easier to deal with.

Suzie is now speaking in sentences and is trying to stand a lot! We are letting her take the lead and she has gotten noticeably stronger through play and lots of pool time with daddy.

We will keep working on preschool, but we are so proud of the progress this girl had made so far! She trusts us and is adapting to new places and faces much easier.

Next up she gets her real wheelchair this week, working on getting her SMOs (ankle brace orthotics) and a gait trainer and planning her rodding surgery!

Here are some pictures from this past week:

the kids call this "Kid Power"

calling mom on the phone

Arm Fracture

It never ends around here. 
I’m fairly certain that Suzie’s arm broke today while playing with Addie. This disease is so awful and unfair. Poor girl was laughing and playing, then crawls off balance and her arm snaps. 

She is comfortable, medicated and splinted for now and I’ll take her in tomorrow to confirm and make sure it’s not displaced. 

We got some smiles today 😊
Suzie is comfortable with meds and immobilized in her splint. I took her in and it’s not a big break, thank goodness! Just hairline, so no cast needed- splint & pain control will suffice. Thanks for all the prayers and comforting words!

an edible bouquet from some great friends

Five Months!

Hi all!
Suzie is getting an MRI today, so I have time write an update. The MRI is just a baseline check - no current concerns.

Summer has been flying by and not much news from us because things are going SO WELL!! We have settled into a routine and are feeling “normal” again. Suzie has accepted Brian and loves him. She even gives him guilt trips on the few days that I’ve had to pick her up from daycare instead of him. She thrives on routine and everyday asks if he is picking her up “later.” She is talking a ton and has started putting together small sentences. She loves to sing and is gradually picking up the alphabet song and twinkle twinkle but she’s not afraid to sing along with her own words. Her favorite song is Baby Shark which is now in our heads 24/7! 😆

She has also found her appetite and now eats quite well and tries most foods. Noodles are no longer an everyday meal, thank goodness! She’s gained a pound now so it’s a start!

Her leg has healed nicely and she is even more mobile now than before the break. That scares us but we are supposed to follow her lead. She has started wanting to jump and does so on her knees which terrifies us and we try to stop her right away. Crazy girl! 

Up next we will be planning surgery to put rods in her legs, get her wheelchair (still waiting on insurance approval) and register her for preschool!

showing off her new kicks

having a corn dog in her whip

hanging with big sis after her game

Addie broke her leg this month, so... buddies.