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!
Monday, January 14, 2019
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!
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!
Thursday, January 10, 2019
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!
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 |
Monday, January 7, 2019
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.
Sunday, January 6, 2019
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’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!
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 |
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.
surgery.
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!
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 |
Sunday, December 2, 2018
"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!”
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 |
Subscribe to:
Posts (Atom)