Big Changes!

Wow, what a week! It feels like Suzie is on warp speed as she is progressing so rapidly!
First, Suzie now LOVES her walker and is really starting to cruise with it. Our backs are very thankful! 🙌
We brought it to school today and she rocked it almost the whole day! She was just beaming and we will now will bring it once a week so she can work with her physical therapist there. She also has stood independently a few times and at school did it for 10 seconds. We had hoped that she would walk by this time next year and then sped up our prediction to the end of summer. Now I’m thinking it may come even sooner! She is quickly gaining stability and strength.
Next, Suzie started using the potty! She’s now in pull ups and is doing great. She even woke me up one morning to help her go potty.
Also, we moved her into Addie’s room after sharing our room for the last year. The transition felt pretty seamless and she loves sharing a room with her big sis. We also no longer have to sit in the room until she’s asleep. She’s becoming so independent!
Lastly she has a loose tooth and a permanent tooth coming in! I’m not ready for her cute little teeth to fall out!
It really feels like my baby has grown a year in just the past week! She just keep blowing our minds!

in bed after a fracture scare, she was fine though

washing her hands (she loves to do this)

walking with daddy

school picture, not so great

sisters, and now roommates

using her walker

New Glasses and more...

It’s been a fun few weeks and life is good! We’ve finally been able to get into a good routine and Suzie is getting stronger and braver every day. She’s been working with physical therapy at school and we are seeing some of her progress.
She also got glasses! She doesn’t love wearing them but is getting better at keeping them on and is super cute!
It’s been 3 months since her last fracture (not counting surgery) and we hope and pray that this streak continues!

This past weekend Suzie didn’t want to wait for Mommy to finish the dishes and put herself down for her nap! 🙌🙌🙌 I checked the monitor and was amazed to see her lying in bed!

Suzie has been using this bumbo chair in her baths for the past year. Without it she cries and clings to the sides of the tub with white knuckles. Last week she got herself out of it during her bath! She’s so brave!!

She likes to practice standing by my bedside

Covered her head to avoid having to wake up

When you can’t get your shoe off, just use your face for leverage!

Her kindergarten class is having a contest and keeping track of how often they brush their teeth. Suzie is taking it very seriously

One Year!

We met Suzie just over a year ago! That feels so crazy to say as I clearly remember many days in the early months wishing to be a year into this and wondering what life would be like. Well, it’s pretty darn good!! The one year mark did not trigger any trauma issues with Suzie (people can have traumaversaries) and she is healing and getting braver with her legs every day.

We did get news that one of the rods has migrated and may need to do a small procedure to tap it back into place but it’s not bothering her right now so we are just watching it.

Suzie started scooting around after a couple days out of her brace. After about a week she started going up stairs again and just recently she started climbing on the couch and pushing up to almost standing while holding onto furniture. The exciting thing is that we now get to encourage all of this and don’t have the fear of breaking just from standing!

Last fall we installed an in ground pool to allow Suzie to do water therapy on a regular basis. She was so excited to use the pool again!! This girl loves being in the water which is great because it’s the absolute best thing for her!

Also, for Christmas she got a little stationary bike, but after her femur broke, we hid it away and didn’t even show her. Last week we got it out and it’s a hit and will be wonderful therapy for her and the game that it shows on the iPad helps her learn her letters...two for one!

She also was able to get her smo ankle braces. We just got them and are gradually getting her used to wearing them. 

We love to look back and see how far we all have come!

bike trainer

Suzie taking her meds

The nurses at the hospital were all impressed with Suzie and how well she took her meds. 

Suzie Singing "Finger Family"

Suzie playing guitar

Pre-surgery Goofiness!

Suzie was very anxious before surgery, but they gave her some pretty good meds, as you can see...

No More Brace!

No brace today!! 

This is the first day without a brace or cast since 12/22...7.5 weeks ago! Also, prior to that she was only out of a cast for 10 days before her femur fractured. We can’t even remember what it’s like to see both of these little legs!

We are very hopeful that she will have a longer time without a cast now. 
Suzie’s doing very well and her legs look great! Her stitches are healing well and will be minimal over time. Her X-rays look just beautiful!! 😍 I was heartbroken the first time I saw her little femurs back last April and realized what was going on underneath her skin. She looked so normal, and we didn’t know that her bones were so bent and it was only a matter of when they’d break rather than if. But now they are nice and straight and ready to heal as strong as they can be! I should mention that she is still at high risk of fractures and her bones will always break more easily, but now that they are straight they do not have the extra pressure on them any time she stands and if they do break, they will not be displaced (where the bone is separated and out of its normal position).
Suzie was not excited to take her brace off and it will be a gradual process getting her comfortable without it. We will also have to work to strengthen her legs and her muscles have atrophied a lot.

not excited about getting brace off

Lion Dance

We checked out a Lion Dance at a local Asian marketplace today for Chinese New Year. Suzie was interested but then got super scared when the lions came out. It was a total freak out- screaming like she thought they were going to eat her! I guess her front row spot wasn’t so good after all. 🤦‍♀️ We moved her away and Brian held her which calmed her down. Hopefully next year is better, but the rest of us liked it!

Back to School

Suzie went back to school today! She’s doing really well and is now off pain meds and seems pretty comfortable most of the time. The worst is at night when she’s stuck in one position. She’s still waking up several times a night. She has two more weeks in her brace and then we can work on regaining strength with water therapy and PT.

We were able to give her a bath- it had been over 4 weeks since her last real bath! She was scared to be out of the brace, but once in the water she liked it and had clearly missed it. She doesn’t realize that the rods in her legs support them and she doesn’t have to worry about her bones moving if she’s not in the brace. It was amazing to see how straight her little legs are now! Her tibia had a large bump on the shin where her bone broke in October and healed angled. It’s now gone!

We are definitely past the worst and two more weeks with the bulky brace seems like nothing!

smiles after school

playing with snow

pizza in bed

Finally Home!

Suzie needed a blood transfusion so we got a late start coming home, but we made it and have been getting back into the routine of things.

Suzie went back to school today! She’s doing really well and is now off pain meds and seems pretty comfortable most of the time. The worst is at night when she’s stuck in one position. She’s still waking up several times a night. She has two more weeks in her brace and then we can work on regaining strength with water therapy and PT. 


We were able to give her a bath- it had been over 4 weeks since her last real bath! She was scared to be out of the brace, but once in the water she liked it and had clearly missed it. She doesn’t realize that the rods in her legs support them and she doesn’t have to worry about her bones moving if she’s not in the brace. It was amazing to see how straight her little legs are now! Her tibia had a large bump on the shin where her bone broke in October and healed angled. It’s now gone!

We are definitely past the worst and two more weeks with the bulky brace seems like nothing!

blood transfusion

back home, insisting she wasn't going to bed

working on her "laptop" like her sister

back at school!

playing with snow

pizza, for breakfast, in bed

Day After Surgery

Today has been rough.

From what Brian tells me, Suzie had a lot of ups and downs and had a lot of pain. Her epidural leaked and so it’s likely that she had inadequate pain control and she was both in pain and inconsolable, crying for mama. 
Brian has been bearing through it all. When she’s comfortable, she has done ok with distractions and ate a bit and played with some play-doh and watched the iPad. 

Her splints were removed and she was placed in her brace. This was supposed to have been done after surgery while she was still sedated but it ended up being too big so they had to adjust it and put it on today. 

She’s now mostly on oral meds and I hope they can stay on top of her pain now.
Also, her hemoglobin and hematocrit dropped a lot from her surgery. We are waiting a day and rechecking tomorrow. If still low, she will get a blood transfusion.
Hoping for a better day tomorrow!

Finger pokes

not excited after surgery