Tuesday, November 08, 2011

Ups and Downs

Molly has been doing well and slowly recovering.  She has been going to school for a few hours each day.  She was at school today and fell on her way to the bathroom.  It seems she has broken her femur.  More later, just trying to stay afloat at the moment.

Thursday, October 27, 2011

In Surgery (Left Arm) in Omaha

Molly has been doing amazingly well.  She has been walking a lot and even walked the 1/3 mile home from school last week.  We were home Friday night and she fell and broke her left humerus (upper arm).  It is a complete break and very painful.  We went to urgent care that night for X-rays and a new splint.  Dr. Esposito spoke with us on Sunday and was able to fit us in his schedule for today.

She is now back in surgery getting a rod into her arm and repositioning one of her femur rods that was starting to migrate up into her buttock.  We are hoping this will be a fast surgery and we should be able to see her in another hour or two.  The plan is to stay the night at the hospital and then go back to the Rainbow House (like Ronald McDonald house) tomorrow night.  We will be flying home on Saturday, which I think will make this our fastest turn-around to date.

If you want to send her something she LOVES getting pictures.  If you see something she might like and take a picture and email it she would love it.  She would also LOVE a picture that you or one of your kids draw.  Either would be a wonderful distraction.  Thanks in advance.

We will keep you posted.

UPDATE:  Molly is out of surgery and in the recovery room.  Everything went as planned, and we are just waiting to go up and see her now.

Update:  We are now up in a room and Molly has been napping on and off this afternoon.  She is hurting a little and tired, but doing amazingly well under the circumstances.  She had some soup and a popsicle, which is a good sign.  So much better than recovery from leg surgeries in the past.

Update: Molly has been eating, talking, standing a little bit (to and from the bathroom) and even went to the playroom this afternoon.  She has been drawing up a storm and doing some amazing pictures (will try to post later).  So happy she is doing so well.  She has been napping off and is resting peacefully right now :).  Thanks to all that sent messages, videos and pictures.  It really helps to have some messages from outside our "hospital bubble" to remember people and life outside of the hospital room.  We should be out of the hospital before lunch given how well she is doing now :)  Here's hoping we all get some rest tonight.

Thursday, September 29, 2011

Such a Fun Age

Molly has grown so much in just the few weeks since school started.  It is clear that she is feeling like a "big kid" and just beaming with joy.  This is such a fun time in our lives.  We have been walking to school and Molly drives her power chair, which has been great for her sense of independence.  There is another girl from her class that we often walk with and the two girls cannot stop chatting and smiling.  They are both "girly girls", so a lot of the discussion is about what they are wearing and how their hair looks etc.  It is so wonderful to see her "walking" side by side with a classmate to school.  I had hoped this would happen at some point, but am so excited it has happened so quickly.

Molly has been asking a bit more about why her bones break easily and why her bones are different.  We have had brief discussions about this off and on, but I think came to a better understanding together this week.  She said that her bones were "bad bones" and should be in "time out".  She asked, "that's alright isn't it?  Bones don't have feelings do they?"  We talked about how it wasn't anyone's fault when one of her bones break and that was just how they were made.  I am still trying to figure out exactly how to help her to understand her condition and feel good about herself.  We talked about how there are lots of times when her bones don't break, so in some ways they are "good bones".  There are some people with Brittle Bones that can run and jump and some kids with brittle bones that cannot stand.  She is lucky for all that she is able to do and that there are many whose bones don't allow them to do all the fun things she can do.  I don't know if this was helpful to her, but it gave me a new perspective and appreciation.

I will work on writing this more clearly and concisely later... off to train Flash :)

Monday, September 12, 2011

Kindergarten... "A Million Thumbs Up"!!!

It has been a long year, but I am going to make an effort to get back into posting more frequently.... time will tell :)

Rather than play catch-up I am going to update about the here and now.  Molly started Kindergarten a little over a week ago and is having a fabulous time!!  We couldn't be happier.  We were all quite nervous about it, but from the first day it has been wonderful.  We are so lucky.  We moved from Cary to Raleigh 2 years ago so that Molly could continue going to the school she was at for preschool (and to get a ranch for accessibility) and it is now so clear that that was a great decision.  One of Molly's preschool teacher's from two years ago was hired as a kindergarten teacher this year and we were lucky enough to get her!  They also placed another preschool teacher from 2 years ago in the classroom as the teacher's assistant.  This set us up for a great beginning.

Molly was so nervous on the first day and after meeting some friends and all of the preparation that the staff did it was a great first day.  Since then she is so excited to go everyday and also excited to tell us all about her day (something she refused to do when at preschool).  She is feeling so good about herself and having tons of fun!!

It is wonderful to have great things to report.

We are starting to work on fundraising for a pool for Molly in our backyard so that she can get exercise everyday.  We have been thinking about it and planning for it off and on for months and sat down this weekend to "make a sketch".  Jim and I are both engineers and began drawing an architectural style picture of what the backyard would look like and wanted Molly to help... after a few minutes of this, Jim realized we were way over Molly's head and suggested she just draw a picture of what it should look like (duh!.. only engineers would start an architectural drawing with their 5 year old :).  She drew a pool that was perpendicular to the house.  All of our sketches had the pool parallel to the house and didn't quite seem to work... So Molly has come up with a perfect plan for how to make it work :).  She is so excited!!!

This morning I wrote down all of my to do items for the week on a white board in the living room.  I went out to train Flash (Molly's Service Dog in Training) and came back in to hear Molly announce she was "writing real words"... "I hope that is OK"... I walk in to find she has been "reading" my to do list and rewriting each word on the opposite side of the board and then erasing each item.  Adorable :).

More posts to come soon I hope.  Off to fold 6 loads and counting of laundry (really).

Wednesday, July 20, 2011

Back from Montreal

Molly and Sarah were gone for the past two weeks. First visiting family, and then seeing the OI experts at the Montreal Shriners.

When they left, Molly wasn't really standing or walking much, recovering from her fall a few weeks earlier. When they got back, Molly has been walking all over the house without even using a walker again!

While at the Shriners, Molly switched her infusion protocol to a different bisphosphonate. Previously, she was getting pamidronate every three months, with a long infusion split up over two days. She has now switched to zoledronic acid with a 30 minute infusion once a year! This new drug works in the same way as the previous one to prevent the body from breaking down bone too quickly.

While at the Shriners, she also had some new xrays. We learned that she has a compression fracture (wedging) both in her back and her neck. She had been complaining quite a bit about neck pain for the past months, and we were never quite sure what it was. She also has some acid reflux, so we were never sure if it was her throat or bones that were hurting. Now we know that it was probably a bit of both. They were surprised that the wedging in her back had not improved since last year, so there were some new xrays taken to start tracking this going forward.

Another new improvement is that Molly can now swim in the water without any floatation devices! I've heard that she can now swim the whole width of a pool by herself. I've seen her do it in the hot tub, and can't wait to see it in a pool.

Sunday, June 12, 2011

A lot going on

We have been very busy lately, with many ups and downs.

First off, we took our first family vacation last month that didn't involve a family or hospital visit.  We made a relatively last minute decision to take a week off and drive to the beach.  On the first day of the vacation, we bumped Molly's leg on a chair, causing a fracture.  We try to go out of our way to make sure we keep having fun after fractures, but this one clearly bothered Molly.  Before bed that night, she asked "Why does this always happen to me on special occasions?"   It was heartbreaking to hear this, as it was clear that she had been thinking about it a lot.  Luckily, this one wasn't a "bad" fracture, so we all still had a great vacation.

A couple weeks later, her leg started to feel better and she started standing and using the walker out of the house more than here wheelchairs.

Then memorial day weekend, we got a new puppy.  We are working with a trainer to train the dog to be able to act as Molly's service dog when needed.  The dog has been great, already learning to obey commands at 10 weeks old.  The trainer gave us high marks for the work so far. 

But as great as the new puppy is, it also comes with new stress.  Every time we took the dog outside, Molly wanted to be able to come out and help.  We have a ramp into the house, but the doors and transition still make it very stressful, since even a small mis-step can have such large consequences.  But part of being a parent to a child with brittle bones is trying to not say no to everything just because fractures are possible.  In this case, Molly seemed determined to be a part of this, so we had been letting her walk out the door with us.

Unfortunately, last weekend, Molly caught her foot on the lip of the door sill while standing in front of the door and broke her ankle.  We don't know exactly what happened, but a week later it is still a big fracture from a pain point of view.  After the first night, she seemed to be in a lot of pain, so Sarah took her to the hospital for some xrays.  There was nothing obvious in the xrays, other than a slight non-union she has had in her tibia for a long time, and a possible fracture lower in her ankle.  It seemed like the splint we were using wasn't working, so we decided to put on a cast.  (we generally try to avoid casts, as they are heavy - which can lead to more fractures, and they can lead to more atrophy if left on too long)  After a day with the cast, the pain was was clearly worse.  We went back to the Dr's office, and decided to take the cast back off.  After taking the cast off, things have started to get better. We don't know what exactly the problem was.  Either the cast didn't go up high enough to immobilize the whole tibia, or it was too tight on some part of her ankle.

It is a week later now, and it is still causing her some pain.  We have been setting timers to remind us to keep up with pain medicine so that we don't get behind.  On smaller fractures, we would usually be down to just occasional motrin and tylenol by now.

We have a couple splints made for that leg, so we have been able to let Molly use one in the water, and another when she is dry.  This has allowed her to still enjoy her time in the hot tub.  She has become very comfortable swimming underwater.  Even in the water with a splint on, she is preventing her foot from touching anything right now, standing on one leg.

It has been a lot of ups and downs, but hopefully things will continue to get better from here.

I know we are behind on posting any new pictures or video.  We have still been taking them, but we are really behind on filtering and posting any of it.  Hopefully we can get some up soon.

Thursday, April 28, 2011

Been a while since an update

Last week at the dinner table, Sarah asked Molly if there was anything she couldn't do because of brittle bones.

"Well, I guess I can't climb tall things."

"anything else?"

"Nope, that's pretty much it."

What an amazing kid she is.

We are getting close to be due for another infusion, and we are really noticing the bone pain. She is having "minor" fractures what seems like every other day this week. After the infusions she is usually hyper with tons of energy after feeling so much better.

She has also taken to racing down the driveway in her wheelchair. Here is a video of her running into me on purpose while I filmed her.

Sunday, February 13, 2011

More Fractures and Still Smiling

Since my last post Molly has continued to have new fractures :(.  She fell quite badly on Thursday and fractured her left arm up by the shoulder.  This is the arm that is quite bowed and fractured quite badly in June of 2010.  We went to a new Dr. since our ortho has retired and the PA we love so much is now only doing Urgent Care.  The xrays showed there might be a new slight fracture up at the shoulder near the growthplate, but nothing that needed serious splinting or indicated it was time for surgery.

Friday and Saturday Molly had her infusion (Pamidronate) that we call her "happy juice".  It is AMAZING!!  She starts feeling better within a few hours while the infusion is still in progress.  I wish we had something like this that we could do every day.  She was feeling good and very active over the weekend. 

We had a good week last week until Wednesday.  In the morning she was walking and took a bad fall.  She screamed and started saying "my leg, my leg" and tears were streaming down her face.  It is so traumatic for everyone.  Molly has a college student that comes to play with Molly two mornings a week and she was here for this one.  It is so hard to see your child in pain.  I got medicine and then a splint for her left leg.  She said it was her femur (upper leg).  After the splint was on her left leg I noticed her right leg was bent and asked if she could straighten it.  It became clear that this leg was also broken.  I cannot say enough good things about her rods.  Without her rods these fractures would have been horrifically painful and difficult to splint.  Because of the rods her breaks stayed in place and her pain I would put at about 6.5 out of 10. 

She did not go to school on Wednesday and we had a quiet day at home with lots of TV (Clifford and coloring) for most of the day.  She slept well and transfers for the bathroom were relatively painless, which is a very good sign.  She went to school on Thursday and had a good day, but was tired when she got home. 

We started taking her splints off for a few minutes at a time to give her skin a break and by Friday she was happy with them off for over an hour.  On Saturday she spent the whole day without a splint and then went into the hot tub.  She is one amazing and resilient little girl.  I know to those that don't live in the world of OI it sounds crazy to go from two leg splints for femur fractures to only a couple of days later no splints and back in the water, but most of this is due to the rods in her legs working as an internal splint and the fact that she has a VERY high pain threshold. 

She started standing at the toilet for a moment or two and said things felt good.  She then tried standing at her sink and her leg gave way and started hurting at which point she wanted her splint back on.  She is now splint free, but having a little bit of pain.  This is such a dizzying ride.  I am so happy she is feeling better so quickly, but it is confusing and difficult to know how she is really feeling or what is appropriate.

We are looking forward to a good week here in NC.  It was a beautiful weekend here and we got to spend some good quality time outside, which is good for all of us.  We are looking forward to a good Valentine's day tomorrow :)

Wednesday, February 02, 2011

Fun, Exhausting, Ups and Downs

There are so many fun parts about being a parent.  We work very hard to stay in the moment and enjoy where we are in the present (a gift Molly has taught us very well).  We do our best, but it is impossible to not get knocked down and caught up in the challenges, heartache and pain that come with having bones that break easily.

Molly went to the local science museum on Sunday for a friend's birthday and within the first 45 minutes "stubbed her foot", which cracked her femur.  The scream is awful.  I knew this one was not a 10 on the pain scale, but also knew she was hurting.  We got her out the car and by then she had calmed down and the pain didn't seem as great.  She then started crying that she wanted to go back into the museum.  In hindsight, that is exactly what we should have done, but it was hard to go from hearing her scream in pain to saying lets go back in and play.  I thought we were going to need to go home and splint her, but after lifting her into the car without a splint it was clear that the internal rods were doing there job and we probably didn't need to splint her.

We continued on with our day after making sure she was comfortable and I think did a good job of moving past the injury and enjoying the last few hours of our weekend.

Monday morning Molly woke up complaining of a sore throat and about 30 minutes later vomited.  She stayed home from school and was feeling better before lunchtime - hooray!!

She was back at school today and we had a great day together.  We visited a local bead store after school and had a lot of fun making a necklace and bracelet right there are the store.  We got home and I started making dinner.  Molly was playing just a few feet away and having a great time.  She was walking back and forth on a foam tile floor I just put down (from our old house) and suddenly started screaming and saying "my neck, my neck".  This was absolutely terrifying.  I don't know much about the spine and neck bones, but I know that we don't want them to break.  Other bones I know what to do with and how to evaluate and when we need to go for xrays and when we don't.  I had no idea what to do for this.  I was lucky and able to get a hold of the Orthopedic PA that we see and he let me know that we could wait and see and didn't need to rush right out for xrays.  Within a couple of minutes she was calm and soon after was playing.  Chip (the Ortho PA) suggested I check her arms and be sure she didn't have weakness on one side and I also tested if she could look up, down, left and right.  Everything seems OK, but she is not able to look left at the moment.

She has only had ibuprofen and is now asleep, which is a very good sign.

Molly is due for her Pamidronate infusion on Friday, which I think is a reason for these fractures and also means she probably doesn't have the pain tolerance she would otherwise have.

She is such a wonderful little trooper and isn't complaining at all.  I was lucky that she calmed down at the museum on Sunday and I was able to run in and buy a stuffed guinea pig, which made her day.  I love that something as simple as a stuffed animal can make things better.  I don't know what we will do when she is too old for stuffed animals :)

In other exciting news, we are looking into a puppy to train as a service dog for Molly (this will probably be a part-time service dog).  We are all excited at the prospect of the opportunities and confidence this has the potential to provide for Molly.

Thanks for reading my update/venting session.  We continue to be grateful for the wonderful daughter we have and all of you for helping support us and provide all that Molly needs to be a happy little girl.

Thursday, January 13, 2011

Happy Birthday Molly!!!!

Wow!  Molly is 5!!!!! Hard to believe!

We have had a great day.  Molly got a new stove/oven and happily prepared pasta, pancakes and treats for us in her new "restaurant".  I got to go to preschool and have pudding (her choice) with her class.  She is so excited and proud to be 5.  She is focusing more and more on being a "big girl" / grown up. 

It has been a good month, but long.  We went to Maine for Christmas to spend it with my 3 living grandparents as well as my parents.  I am so glad we made the trip.  My Dad's Mom is now in the hospital and it makes me so grateful that we opted to make the trip and spend the time while they are still with us.

Molly enjoyed the snow in Maine and was of course fun and excited on Christmas.  She came down with a bad cold right after Christmas that came with a cough that caused pain in her left femur when she coughed.  That has passed and in the past couple of days she is back up on her feet and walking all around our house :)

We had a great birthday party on Sunday. (a butterfly, tea party, beading party).  We had our first "all girls" birthday and had a blast.  We started off decorating paper butterfly wings, then played a song from the Nutcracker and did a "butterfly dance" (adorable), then we had a tea party with fruit kabobs (inspired by Fancy Nancy), whipped cream and pink lemonade :).  Next everyone got to make their own bead necklace.  Then we played an M&M game, had cake and opened presents.  A wonderful, very girly birthday :)