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

Day Before Surgery (fun at the mall!)

Tomorrow is the big day!! It seems surreal! I’m so nervous and anxious but also excited for what this means for Suzie! We’ve explained to her in very simple terms what is coming, but I know that she does not understand and just wants to go home. 


To keep busy we visited a local mall and let Suzie wear off some energy. She did laps rolling around and also rode the elevator and escalators, which was pretty much like Disneyland for her. So much fun! She’s crazy!

Omaha for Surgery

The first two days at the Children’s Hospital of Omaha went well! The team here is great! Thorough and very experienced with OI kids. It’s the little things that make such a difference- like putting a padded mat in the exam room so our kids don’t have to sit on the hard dirty floor if they want out of their wheelchair. 

They also sent us home with a disc of all X-ray images and a fracture kit with splinting supplies to have on hand for her next fracture! We’ve already compiled a kit of our own but we can never have too much and this would have been very helpful to have from our OI clinic in Denver that we saw back in May.
While here she’s had X-rays, Dexa scan, met the orthopedic surgeons, saw a dietitian, pediatric dentist, PT, OT, social worker, endocrinologist, geneticist, and audiologist.

The surgery is a go and the doctors seem confident that it is both necessary and very do-able. This is not the impression we were given in Denver and I was basically told not to expect or hope for her to ever be mobile! 😡They acknowledge that she is a difficult and certainly not a typical case due to her previous fractures and the kind of bones her OI type has. They see more OI kids than any other clinic in the US and even then they only see about 250. Of those, they’ve only had 4 that are Suzie’s type of OI. It was great confirmation that we were right to take her here to have her seen by the best! The plan is surgery on Tuesday to put telescoping rods in both femurs and one tibia, but they will take it one bone at a time.

She is doing great and because the place we are staying has a playroom, she’s staying she loves trips! 😆 Initially she was asking to go home a lot but is warming up to the hospital staff some and was charming people by the end of the day. She doesn’t understand what we are doing or why. I’m excited and nervous for the surgery as it is quite major and anxious to have this all behind us!

not excited about x-rays

playing games in the waiting room

ready for another day

stockpiling her favorite food

hair washing

A Few Videos

Here are a couple of longer videos of Suzie that I love. The first is from before her break. You can see how well she was getting up on furniture and she’s singing Jingle Bells (which sounds more like jumping beans) into her play phone that records her. She’s frustrated that it doesn’t catch the whole song.

This one is on Christmas with her new Baby Shark book that plays all of her favorite songs.

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