Friday, April 11, 2014

Great video about OI

We don't update the blog very often, but I had to share this great video.  The girl in the video is a year older than Molly, and accurately explains the way brittle bones impacts Molly.

Sunday, March 16, 2014

Recovery Still Going Well

Molly has been doing amazingly well in her recovery.  Earlier today, she got the thumbs up to try standing.  She was incredibly excited, as this was the first time standing in months!  She felt so proud to do it, and her excitement afterwards was infectious.

She had a lot of pain later this afternoon as a result, but after a dose of "big" medicine she is doing much better.  She is going to be discharged from the hospital tomorrow,  and flying home on Tuesday.

Saturday, March 15, 2014

Successful Surgery and Doing Well!

Surgery went well and she has been sitting up and eating right from the start.  Such a difference this time around with so much less OR time and no osteotomies (surgically broken bones).  I wouldn't believe she just had surgery based on how she is doing.  She is able to sit up on her own, I already picked her up to go to the bathroom, and she is eating like a champ.  So nice to see her doing so well.  I am happily surprised.  She is comfortable and not needing a lot of pain medications and is really acting like herself.  Hooray!

Friday, March 14, 2014

Surgery is underway

Sarah just called me to say that they have rolled Molly back for Surgery.

Dr E will be adding a wire wrap on the upper right femur to add support. In addition, he will be doing a fluoroscope of the  left leg to make sure everything is in the correct place from the big surgery in January.

[Update: 2:25pm EST] Left leg looks fine.  Going ahead on surgery on right leg now.  This should be a more minor surgery than some of our previous big ones.

[Update: 3:45pm EST] Sarah called with an update that the surgery is almost finished.  Things going well so far.

[Update: 4:15pm EST] Sarah just talked to Dr. E.  The surgery went well, and he thinks the recovery should go well too.

The left femur rod is almost backed all the way out, but he didn't want to go in and mess with it right now.  He thought it was in far enough to leave it so she can have the easier recovery.  The right femur was slightly different than he had faced before, with the current femur rod being in slightly different place than he is used to.

Thursday, March 13, 2014

In Omaha for Surgery tomorrow

We had a very uneventful travel day yesterday to Omaha :)

We got in around 3 and spent an hour at the Children's museum before checking in at the Rainbow House.  It was nice to find a way to enjoy part of our trip for another surgery so close to the last.

Jim and Paul have stayed in North Carolina this time.  It was hard to leave Paul for the first time, but it would have been too complicated to have him here.

Molly is scheduled for surgery tomorrow afternoon to have her right femoral neck wrapped in wire to support a fracture she has there (it is above where her rod is) to prevent a nasty fracture from occurring.

We will keep people posted here on the blog as things progress.  Dr. Esposito doesn't expect this time to be as painful as the last surgery and we are keeping our fingers crossed that will be the case.

On a happy note.  Today was a beautiful sunny day and we spent almost the whole day at the Omaha Zoo.  We had a wonderful visit and even got a behind-the-scenes visit with a tiger (4" away)!!  Molly was in heaven.  She has a real passion for animals and especially for tigers, so to get a tour with one of the trainers was a very special experience.
Post I typed up in January and never managed to finish:

We have been "snowed in" all week here in Raleigh.  They cancelled school (not that Molly has been going) from Tuesday- Friday.  We got 2-3" on Tuesday night.  It was a beautiful white wonderland on Wednesday.

Molly was excited to get out and play in the snow on Wednesday morning.  It was hard to figure out how to best let her enjoy the snow.  She tried her best to psych herself up that laying in a sled running her hands through the snow was fun, but I could tell it was one of those times that she wished things were different.  I am thankful that those moments are few and far between, but as a parent it is hard to watch knowing that there is nothing that we can do to make it easier/better.  She takes challenges one at a time and is usually able to overcome the frustration.

I know that the combination of recovering from surgery (with almost no physical independence at the moment) coupled with the reality of what her peers were doing at the same moment was a lot to accept.

We did find a sled that worked with her splint and she decided the experience was worth the pain that would come later in the day from pushing her body beyond its limits (given her recent surgery).  The four of us got to take a walk down the street and enjoy the snow covered trees and white all around us.

Since that morning she has had quite a bit of pain and has not been up to leaving the house at all.  Needless to say we have all been suffering from cabin-fever.

It is so hard to see her in so much pain and not know how to make it better.  I was really hoping that by this point in her recovery that she would be feeling a lot better than she is.

Sunday, January 19, 2014

Healing like a champ!

Molly is such a trooper.  She turned the corner earlier this week and has only improved from there.  She has had a few good nights of sleep and is in very good spirits.

I was all ready to send her to school on Monday for a few hours - until I was reminded that it was Martin Luther King, Jr. Day and we don't have school on Tuesday either.  Not quite on top of things at the moment :)

She has had a few friends stop by for a visit and that has really boosted her spirits!  I know she will be exhausted getting back into the swing of things at school, but I know it will be a good thing.

Monday, January 13, 2014

Home Again, Home Again, Jiggety Jig :)

We made it home!!  We had an extremely long travel day yesterday and are just so grateful to be home.  We boarded a plane yesterday morning in Omaha and sat at the gate for an hour before they finally cancelled the flight due to mechanical problems.  We scrambled to find another flight home and thankfully found one through Chicago.  Poor Molly is still in so much pain from her surgery and the travel really didn't help things.  We had a 5 hour lay-over in Chicago and touched down here in Raleigh around 11:30 pm.   We were in the car driving home when the clock struck midnight and we sang her "happy birthday". Such a strange night.  Paul was wide awake and was playing with his toys at 1:00 am this morning before we got him down for bed.

Today is Molly's birthday!!!  We did our very best to make it a good day for her.  She has tried her very best to keep her spirits up, but it has been hard at times.  She is understandably frustrated by her lack of independence and it is hard missing out on school.  It was heart-breaking to hear her mourn the fact that her friends were all running and playing and she was hurting and not able to do anything.

She has some wonderful friends that stopped by for a visit and really raised her spirits and helped for a little while.  Thanks to the world of technology she was also able to FaceTime with her class today, which she LOVED!!!  It is so hard seeing her go through so much in the hospital and then to see the emotional toll can be agonizing.

I know that in a few short months this will all be a distant memory, but at the moment we are exhausted and looking forward to getting her past this rough patch.