Brittle Bone News

Ups and Downs

2011-11-08T19:53:00.000-05:00

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.

In Surgery (Left Arm) in Omaha

2011-10-27T08:36:00.001-05:00

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.

Such a Fun Age

2011-09-29T08:25:00.001-05:00

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 :)

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

2011-09-12T19:02:00.002-05:00

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).

Back from Montreal

2011-07-20T16:16:00.003-05:00

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.

A lot going on

2011-06-12T21:17:00.000-05:00

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.

Been a while since an update

2011-04-28T15:22:00.005-05:00

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.
http://www.youtube.com/watch?v=R4Ut2z476Yw

More Fractures and Still Smiling

2011-02-13T20:44:00.000-05:00

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 :)

Fun, Exhausting, Ups and Downs

2011-02-02T22:04:00.000-05:00

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.

Happy Birthday Molly!!!!

2011-01-13T22:03:00.000-05:00

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 :)

Nutcracker Girls Night :)

2010-12-11T20:29:00.000-05:00

Molly is doing well. She has just started standing and walking again in the past week or so. She was standing and just started taking steps and saying out loud "I'm doing it, I'm doing it, I made it" she walked 3-5 feet and felt a great deal of accomplishment :)

School is going well. We went through a rough patch and she didn't want to go and was uncomfortable with the switching of her aides, but that has settled down and she is doing well.

Last night Molly and I went to see the Nutcracker with her oldest friend (since she was 18 months old) and her Mom and had a great time. We got wheelchair accessible seats, but we brought her manual chair and she couldn't see over the guard rail. She sat on my lap and tried their seat (like a movie theater), but couldn't really sit still. She was up on her feet doing some improvisational dancing and then mimicking the dancers movements with extreme exaggeration it was adorable. She was clearly very inspired. She lost interest after 15-20 minutes, and unfortunately the show was 2 hours :). I am really glad we went and I think in another year or two she will really enjoy it.

We also have a couple new videos up:

Playing in the rain:
http://www.youtube.com/watch?v=5APjlT7l15M

Walking without her walker again:
http://www.youtube.com/watch?v=PAdvZLXQTb4

Some good Molly quotes

2010-11-12T14:06:00.002-05:00

Sometimes Molly amazes us with how well spoken she is, especially for a 4 year old.

Today, Sarah was starting to pick a show for Molly to watch on TV, and Molly said: "Mommy, this would be the perfect opportunity for you to get some chores done."

Yesterday I (Jim) was talking to her about TV, and she said: "You know Daddy, it would be good for you to watch other shows besides just Formula One. There are times that I want to watch Cyberchase again, but I put something else on so I can try something different."

Good to be home

2010-10-24T20:46:00.003-05:00

We have been home for a couple days now, and Molly is feeling much better. We have primarily medicating with Motrin, only using stronger pain meds now and again as needed.

Here is a picture of her having fun in her room earlier today.

A great day in St. Louis

2010-10-22T20:34:00.000-05:00

Molly is doing amazingly well. I am always happily surprised by how much better she does once we get out of the hospital. She had so much anxiety that anytime anyone walked into the room in the hospital she would start to panic and ask if they were going to hurt her. So hard to see her so worked up and scared.

She allowed us to take the splint off and finally took a moment to calmly move it and confirmed what Dr. Esposito tried to convince her of, that her right leg shouldn't hurt too much. She has done really well with transfers today and seems to be tone better. So glad.

We head home tomorrow. It will be nice to be back in our own house and beds after a long week.

Out of the hospital

2010-10-21T16:30:00.001-05:00

We are out of the hospital :). Molly is doing well. She is stll having pain during transfers, but once she is settled seems to have only a little pain. We are in the car and beginning our 7 hour drive to St. Louis. Should be there before midnight :) we are all glad to be out of the hospital. Thanks to all for your notes and phone calls. They mean a lot.

Things getting better

2010-10-20T17:09:00.004-05:00

Until now, Molly has banned us from taking any photos of her in the hospital. Today she is feeling well enough that we were allowed to take a few pictures.

Earlier today, Molly had fun doing a puppet show in her bed. I have a video of it that I'll put up some other time.

Today we were able to take out the epidural. Before we took it out, Molly was able to turn off the medicine herself.

Molly also got out of her bed for the first time today to go get neck x-rays (unrelated to surgery). Here's a picture of her throwing coins into the fountain in the lobby. Molly had so much fun exploring that we stayed out of the room for a couple hours.

Finally getting some sleep

2010-10-19T09:48:00.002-05:00

Molly didn't sleep through the night, and finally fell asleep this morning at 10am. Compared to past surgeries, she is doing pretty well, but there are still moments where she is in pain, and gets scared by the situation.

Things should keep getting better from here on out.

Surgery day

2010-10-18T12:16:00.007-05:00

Molly is having both f-d rods replaced in her femurs.

We will update the blog with news as the day goes on.

Right now we are in what Molly calls the "boring room". We will update once again when things are underway.

1:25 Molly just went back for surgery.

4:15. Still waiting, no updates yet.

4:20 I didn't wait long enough to update! Dr Esposito came by right after I hit post. Surgery is complete, both femurs have new rods. Right leg was an easy take old one out, put new one in. Left leg had the bent rod, and needed an osteotomy for the new rod. Before the surgery, we had some conversations about rodding the left humerus (upper arm bone), because it is bowed with many recent fractures. After talking to Dr Esposito, we have decided to put the humerus rod off to another day. Recovery for the femurs alone should go better this way.

Looking forward to seeing our adorable girl again.

I also forgot to mention that the new rods are both longer and wider in diameter than the previous ones. This is good, as they should be less likely to bend again any time soon.

6:15 We are up in the room with Molly. Sleeping now, and feeling some pain when she wakes up. We are hoping that the epidural works to keep things numb, and we won't have to fight any major pain with narcotics. Here's hoping!

Molly the dancer

2010-09-20T12:13:00.002-05:00

We just uploaded a great video of Molly dancing in her room. It has been a rough year, with fractures happening too often. I hadn't even finished uploading this video, and Molly fell off my chest (laying down) and hurt a rib. A couple days later and she is doing pretty well. She is so tough, that it is hard to really tell she is hurting. Besides her telling us that it still hurts, the only way you would know is that she isn't as patient as she usually would be. (I guess the way the rest of us are with a bad headache)

Molly dancing video

Here are some other random pictures

First day of school:

Fun on the beach in Maine:

Swimming in the pool. Molly has become a great swimmer. She can swim the length of a pool many times over. One of our best forms of exercise.

Sarah set up a new table for Molly to help cook, along with her own knife:

Showing off one of her paintings:

From Molly 2010

Pictures and videos

2010-08-07T16:09:00.004-05:00

It has been a while, but I finally have some updated pictures and video:

At the conference, they had these great demonstration bones. This is what a femur looks like with the F-D rods that Molly has. These telescoping rods are designed for kids with OI. They attach at either end, and grow to be twice the size as they were when installed.

Molly with Dr Esposito, our great orthopaedic surgeon.

OI kids on the dance floor with Dr Glorieux. These kids are largely doing as well as they are thanks to his work with bisphosphonates.

I think the bunnies were one of Molly's favorite things at camp. She was patting them every chance she had.

All of the OI kids at camp:

The rest of the OI conference and camp photos:
http://picasaweb.google.com/jsulliv/2010OIConferenceAndCamp#

Camp videos
http://www.youtube.com/watch?v=zTUMvHTDJzU

Molly racing wheelchair athletes in the airport
http://www.youtube.com/watch?v=fK7q6RVA8pc

Playing baseball at friend's house
http://www.youtube.com/watch?v=lgKRRqF-zKc

Camp Attitude = Camp Amazing!

2010-08-05T08:07:00.000-05:00

This has been a very busy month! We headed out to Portland, OR for the OI Conference on July 7th and had a wonderful time seeing old friends and meeting some new ones. My parents came to the conference from Maine which allowed Jim and I a bit of time to attend the Conference presentations and visit with the other OI Parents. Molly was a bit overwhelmed by all of activities and crowd, but I think she really enjoyed seeing lots of other kids in wheelchairs, walkers and casts.

They had a dance on the last night of the conference that Molly and all of the other OI kids especially enjoyed. This was a highlight for all of us to see kids being kids and allow them to feel like it was a party just for them.

A family out in Oregon arranged for 26 families to go to a special needs camp called "Camp Attitude" for almost a week. We all headed 2 hours south of Portland on Sunday in a big tour bus. Oregon is beautiful and our drive down was gorgeous. Snow capped mountains and evergreen forests all around. We arrived at camp and all of the volunteers were there to great us and seemed as excited for us to arrive as we were to be there. We were shown to our cabins, which are all wheelchair accessible as are the bathrooms. Camp Attitude was amazing! They prepared for our arrival all year and seemed to think of everything. They had wheelchair swings (manual or power wheelchairs went right up on the platform and the kids could swing in the comfort of their chairs), which was definitely one of Molly's favorite parts. On Monday Molly got to ride a horse for the first time. I wasn't sure that this was going to be something Molly could do, but they were so well prepared and it was done in a safe way. She rode the horse named Goliath who was huge and slow a perfect match! They rigged up a weight belt that they attached to the saddle to give the kids support and safety to ride by themselves. This was a wonderful moment for all of us. She has been asking to ride a horse for over a year and I wasn't sure it was ever going to be possible.

The next day we went to the lake and Molly got to ride a jet ski and go tubing behind a boat! She loved both, but I think preferred the tubing because we could see each other and talk a little bit while we went around the lake. The tube was giant and could seat 3 adults.

Each OI camper was assigned a buddy. Allison, Molly's buddy, is a high school student and was wonderful with Molly. Almost all of the other parents went off on their own and let their kids be with the buddy, but because Molly is only 4 and so fragile we didn't think this was a fair expectation of a high school student. Most of the time Jim let me talk with the other mom's and he stayed with Molly. I think they are going to have the camp again next year and hopefully in the next few years Molly will be old enough to go off on her own with her buddy.

The next day we got up very early to get ready to go up in a hot air balloon!! They had a wheelchair accessible basket which was wonderful!! It was tethered and went up about 40 feet, but it gave Molly the experience and she felt extremely safe.

I will type up the rest of this later...

Getting better, some pictures

2010-07-06T07:47:00.004-05:00

Molly is starting to feel better now, although she is still limiting movement of her arm when the splint is off. We had a good weekend, with friends coming through town, and celebrating the 4th.

You can see her self splinting her left arm in the pictures below while we were washing her splint.

Sarah and her Mom made this great arm sling for Molly to use in the hot tub. They couldn't find neoprene in the stores, so they bought a neoprene laptop case instead!
This has been really great for allowing Molly to swim while her arm is still healing.

And here is an example of the primary arm sling we use. Another OI Mom gave us one for the right arm, and Sarah's Mom then copied it to make this one for the left arm.

We had the two week follow up xray this week, and in this one you can really see how bad this fracture was. Molly is a really tough kid, and this fracture was clearly much harder on her than some previous ones. The fracture is starting to heal well though.

Arm fracture again

2010-06-15T19:52:00.003-05:00

Molly hurt her left arm again today while playing at a friends house. Sarah was able to hear the fracture when it happened, which was very upsetting.

It was unfortunate because we had switched cars the day before, and I (Jim) forgot to switch the splints/medicine/slings back into the minivan before I went to work. Sarah was able to get Molly into the car, and I met her at the Dr's office for xrays.

Much to our surprise, the fracture in St. Louis 3 weeks ago was a much bigger fracture than we had realized. Molly is such a tough kiddo that she just fought right through it. So in the xrays there is a three week old fracture at the top of the left humerus, and the new fractures more down towards the middle.

Molly is clearly trying to cope with the pain right now, but the Dr thinks she should start feeling a bit better in a couple days.

Here are the fractures:

All better!!

2010-05-27T18:51:00.000-05:00

Molly's arm doesn't seem to be bothering her at all anymore! I am so happy. It is very confusing for us as the parents to figure out exactly what happened, but clearly she hurt something and somehow she is now feeling a million percent better. My guess is that whatever it was hurt and is probably now being splinted by the rod in that bone. I also have a feeling there is some fear that it was going to get worse. She is now not wearing any splint and is taking no medicine. She used her walker yesterday for the first time and then proceeded to lift herself off the ground using her arms! That is a wonderfully fast recovery!!

She had a great day back and school.

Some Molly quotes:
"I just laughed out bursting"

"Victor and I have decided to marry each other"
(me: "most people wait to decide who they will marry until they are adults")
"I know, but we just couldn't wait any longer - isn't that silly!"

"Say What?"
"My poop is going to go and play with the wee wee - bye bye poop - have fun playing with the wee wee"

In STL and broke her shoulder

2010-05-24T07:31:00.003-05:00

We have been in St. Louis for the past few days visiting Jim's family. We visited Grants Farm one day and got to feed goats and saw lots of neat animals. We had a quiet day in yesterday and while getting Molly ready for bed she was crawling and screamed. We're not sure if it is her collar bone, humerus (upper arm) or shoulder, but something is definitely broken. Thankfully we have a great sling that another OI parent made for her that seems to be working very well. We head out tomorrow and I am hoping she will do OK on the flight (with bing picked up and moved around while at the airport.

She slept through the night (we woke up to give her medicine throughout the night), which is a very good sign.

"The Best Day Ever"

2010-04-27T09:34:00.001-05:00

Molly got glasses on Friday! She picked them out herself (pink) and as we drove in the driveway she said "I can see the house so much clearer!... This is the BEST day ever." What a wonderful thing to hear! They clearly are helping a lot because she hasn't asked to take them off at all and reminds us as soon as she wakes up.

We have planted a garden together and things are starting to sprout. I think at this point she isn't that interested, but I'm hoping once things are ready to pick she will get excited again. We planted corn, which I've never planted before, tomatoes, tomatillos, green beans, cucumbers, pumpkins and watermelon. Can't wait to have some things to harvest!

We are starting to get excited about the OI conference in July in Portland, OR. I am working on possibly getting the splinting guy from Maine to come and present at the conference. I am also trying to come up with some ideas for sports and field day options that we could either demonstrate or at least have in printed form for parents.

I am also trying to create a "summer camp" for Molly. I have a couple of other families interested and it will probably be at my house. I think the camp will only be one step above a play date, but I think we could have some fun doing some science and arts and crafts activities etc.

Happy To Be Home :)

2010-04-07T07:49:00.000-05:00

We had a wonderful trip to Maine and Massachusetts, but we are VERY happy to be home. Ten days is a long time to be away from home and without Jim.

She is already starting to feel better and slept without the splint on :)

So nice to have good news.

A New Fracture

2010-04-05T22:32:00.000-05:00

Sometimes having OI just SUCKS. Poor Molly.

She has been doing so well and her spirits have been up. After we spent the morning at the splinting office Molly said "I hope I don't break another bone, but I might"... it is hard hearing about the reality of OI from her perspective.

She was sitting on my Mom's lap and just started crying out in pain. I was visiting my grandmother and rushed home to help out. She told me she was crying because she was tired and there wasn't any owie. It was clear that was not the case, but Molly really wanted to wish away her fracture. Heartbreaking.

She finally let me put a splint on and admitted that it felt better with it on. She told my Mom she wanted it off tomorrow (we're flying back to North Carolina tomorrow and I think she wanted it off to see her Dad). It is so hard that she beginning to understand that this will prolong the time in a splint and not allow her to walk and stand like she would like to. Oh how I wish I could make this better for her.

It is heartbreaking to know that your child is in pain and it is heartbreaking as Molly slowly learns the realities of having Brittle Bones.

Thank goodness she is such a wonderful kid with a great outlook and disposition. She is interested in so much and has done such a wonderful job appreciating all of the good in life.

It will be wonderful to be back home!

Healing and keeping busy

2010-04-02T21:04:00.000-05:00

We have had a few very busy days here in Maine. Molly is doing well and is exhausted by the end of the day!!

On Thursday morning we went to meet with a family friend at an orthopedic office. David Gallant, is an OTC (orthopedic technologist). I made an appointment to learn some splinting techniques and get some new materials to try for making splints for Molly. We got there at 8:30 and thought we would be there for about an hour... 3 hours later... I learned a ton and I am hoping to get him to come to the OI Conference in July to demonstrate some new techniques and materials - we shall see.

We spent the first hour talking about the material (polyester rather than fiberglass) that is breathable, can be cut with scissors, can be laundered and is more flexible yet still supportive. We used his "model" (a Woody Doll - from Toy Story) to make an arm splint and then talked a lot about the different techniques for different parts of the body. Molly was there an up until this point had been visiting with my parents. I wanted to try making my splint and thought it would be helpful to make a femur splint for Molly that would help if and when she breaks her femur again. Molly got the bribe of a lollipop and was amazingly cooperative while I made a two part splint that went up to her rib cage. This was a traumatic experience for both of us. It was like telling your 4 year old... I'm going to make a straight jacket for you, but once it's finished I will take it off but first I need to sew it on to you. Tears occasionally streamed down her cheek while I was doing this for over 30 minutes. I was able to stop now and then to comfort her, but it was emotionally draining given that this was for "just in case" and Molly only somewhat understood what was happening.

Needless to say that after all of that we headed straight to the toy store!

Today we went to a park and then over to the Maine Maritime Research Institute to see the fish tank and learn about fish. They had one cylindrical tank filled with lobsters that Molly was interested in (at first), but then wanted to see more. They told us that the rest of the fish on site were dead and she quickly said "I want to see some dead fish please"... OK they said and upstairs we went. The found a wonderful master's student to bring us into the lab and she got to measure and touch a dead (and frozen) herring. She was interested and not grossed out in the least! Pete (the master's student) suggested that they use some tools (scissors and tweezers) to remove the fishes eye. Molly thought this was a great idea and began picking out the dead, frozen fishes eye with the tweezers! It sure seems that she has the makings of a scientist or doctor :)

She was also interested in cutting the fishes tail off and then she and Pete dug the spinal cord out of the fish and "studied it"!! What an interesting morning :)

Off to bed - Happy Easter Everyone :)

Healing, "beaching" and now in Maine

2010-03-27T19:09:00.000-05:00

Molly is one amazing little girl. We found out that one of her top front teeth that was white had the face of it fall off. We went to the dentist on Thursday and she sat perfectly still while he used some tools to put a new plastic face on it and cured it with a "magic" light wand. What a mature 4 year old :).

Since we were missing school anyway we decided to head to the beach to visit our friend Dr. Mary and her two girls (Alexi, 7 has OI, and Aubrey, 10 no OI). On the drive down Molly complained about her splint itching and hurting. When we stopped and took it off she had new sores forming and we had to keep the splint off. Molly was adamant that we put it back on, but given the way her leg was looking this was not an option. We got there by 2 on Thursday and got right out on the sand and Molly searched for shells and played with the girls while Dr. Mary and I visited. She was doing amazingly well without her splint on and was bending it and moving about fairly well. It was so nice to be on the beach and to have some time to visit with another "OI Mom".

We headed home on Friday afternoon and arrived back in Raleigh in time to have dinner and begin packing. We got on a plane this morning to head to Maine and Molly was a great traveler. This evening she decided her leg was feeling good enough to try standing and stood at least partially on her right leg and thought it felt good. After a second or two she had had enough, but that is a great sign for the days to come. I had debated bringing her walker up to Maine and decided it was too much to try and carry around - ugh, now she is already wanting to stand... Maybe I'll be able to find someone with a walker up here she can borrow???

It is nice when the biggest "problem" is that Molly is healing faster than expected :)

Tomorrow is Maple Sugar Fest here in Maine and we are going to go and visit a farm to learn all about it.

An interesting Video

2010-03-19T21:26:00.000-05:00

Here is a short video by National Geographic about OI. The boy in the video, Jake, has severe OI and was recently on Extreme Home Makeover.

Click Here to watch the short video.

Pressure Sores Boo Hiss...

2010-03-18T18:57:00.000-05:00

The Ups and Downs continue, but Molly's spirits are still good. She went to school on Tuesday and had a good day. On Wednesday she had OT (occupational therapy) first thing and then her teacher, Ms. Lynn, came for a home visit with her student teacher. We spent some time brainstorming how we could make our house work better for Molly, which as far as Molly was concerned involved making her stuffed animals more accessible :). We had lunch and then Molly took them outside to show how she drives around our circular driveway at warp speed! Molly's favorite outdoor activity, other than driving her chair around the driveway, is to swing. She has not wanted to swing since breaking her leg and who can blame her! Yesterday she was obviously feeling better and said she was ready to swing. As soon as I got her in the swing and we both saw how well it went, I realized that we should try going in the car (for the first time since Saturday). I asked if she wanted to go to a toy store - figuring that a first car experience that was a good one would be a wise choice. As soon as I loaded her in the car I realized that in addition to the toy store we should go and have some help making a new splint. I was able to make an appointment to see Mr. Chip (a PA at Triangle Orthopedics) and off we went. We made a new splint that went along the side of her leg and wrapped around the foot avoiding the heal. I forgot to mention that earlier on Wednesday morning I found that she was starting to have a pressure sore on her heal from her splint. This seemed to be a good solution and then off we went to the bookstore, where we got yet ANOTHER stuffed animal (a bunny) as well as some Charlie and Lola books, one titled "Broken" that talks about the boy breaking his arm and the other about Lola having the chicken pox and having to find a different way to participate in the school fundraiser (both of which I thought had great messages for Molly).

All was well until bedtime. At this point she came up with every excuse under the sun and had Jim and I at the end of our ropes. This was our fifth night of being in crisis mode and it is hard to maintain your composure for that long. She has been sleeping in our room since her break, which also makes for long days and nights. After 2 hours of begging and pleading Jim and I finally gave in and headed to bed as well.

This afternoon I took off her splint to have a look and found new pressure sores in different places. I am now remembering that this seems to happen with her leg fractures and I SO wish that we didn't have to go through the same mistakes each time!!! Grrr. So, I have now made a new splint that goes along the back of her leg from where her underwear end down to just wear the socks begin. I am hoping that this gives her femur the support it needs without creating yet another pressure sore.

I found that I had made the exact same splint last time this happened and used that to keep her wrapped so that we could give her a bath for the first time in a week! She is now in her own bed, clean, asleep and with a new splint and I am so hopeful that Jim and I will finally get a little bit of adult time and also some well needed sleep. We are still setting alarms throughout the night to give her medication, but that is a quick up and down and barely even registers on the scale :)

Here is hoping that everyone gets a good night sleep and that the three of us can enjoy a weekend together free of pressure sores and other medical drama.

Already back at school!

2010-03-16T20:06:00.001-05:00

It has been a long few days. Molly and I walked to school yesterday to visit for snack time and it really seemed to lift her spirits and get her back in the swing of things. She was able to go in for the full (8-11) day today.

Molly has some remarkable strengths that are really starting to develop - one of which is recovering quickly for big fractures. She told me today that she likes flowers as much as I like babies... communicating with analogies is something my family did ad nauseam and something Jim and I have made a regular habit out of and now Molly is following suit. She has been interested in a particular Richard Scarry Busytown book about Huckle having an operation and visiting the hospital. She can now "read" the book cover to cover with only a few cues to start off a paragraph here and there! I have video taped her reading it, but it is 8 minutes long, so we'll see if Jim gets it posted or not. After reading it she asked Jim to ask her the definition of relieved and then went on to give him a correct definition - too funny.

Femur Fracture Yesterday

2010-03-14T07:37:00.001-05:00

We have been enjoying how well Molly has been doing, but yesterday she fell and broke her femur. She was in the house after the hot tub and slipped on a patch of water and shrieked in pain. I knew right away it was not good by the cry. We tried to figure out where she was hurting and I splinted her tibia (obviously now I know the wrong bone). The Urgent Care facility was open, so we went for an x-ray since it was clear this was a very painful fracture. They told us there was an old femur fracture, but he didn't see anything new... I hate it when I take a doctor's word over my own instincts - just because they are a doctor does not mean then know OI... we headed home with the tibia still splinted... after being home a few minutes Jim and I talked about the femur fracture on the film and both concluded that we would have known if she fractured her femur a month ago and that this must be the new fracture (so obvious in hindsight). I used a Sam Splint (emergency splint) over the tibia splint to go all the way up to her bottom and she seemed a bit more comfortable after that.

Our friend Dr. Mary, that is and ER doctor with 2 OI kids of her own, spent the night with us last night and helped me to make a new splint that goes from her toes up to her rib cage to isolate the knee and the hip. She does not like that she cannot move at all on her own, but seems to be much more comfortable. I am so glad we finally figured out the real source of Molly's pain and that she was able to get a fairly good night's sleep thanks to her new splint (and with the help of pain medication).

There was some good news. Her tibia that we just rerodded in September looks great. She used to have a non-union at the mid shaft, but that looks to have healed up amazingly well. It looks better than it has in over a year :). We will be emailing Dr. Esposito to see what he thinks about this latest fracture and how long we will have to immobilize her and how long before she can be back up on her feet. I am guessing 4-6 weeks, but we will have to wait and see.

In other Molly news...

Molly has changed a lot in the past few months and become a true 4 year old :). She has starting talking more like a kid and less like a mini-adult, which is great. I think this is thanks to her preschool and having the opportunity to have more consistent play dates with her classmates. One of the things that we are working on is getting Molly to participate in group activities at school, but not be too passive. Her teacher pointed out that when another child asks for a toy she is playing with she immediately gives it to them. She pointed out that if that trend continues she is at risk for being bullied in elementary school - something we had not thought about at all. So, we are working on her asserting her own wants, while still being a "team player" and participating in small group play. Figuring out these social rules is very complicated since there are so many nuances to the right way vs. wrong way.

Molly's imagination continues to be her biggest strength. She is constantly coming up with new things to do, build, play etc. and Ms. Lynn (her teacher) has done a wonderful job of incorporating those new interests into the classroom. Molly became interested in playing Dr. with her stuffed animals, so now there is a Vet Center at school with lots of beanie babies and doctor equipment. A few weeks later Molly asked if she and I could build a rocket, so we put together a VERY rudimentary rocket for her stuffed animals to ride in. She brought it to school to show the class and then Ms. Lynn began a habitat building center with paper and cardboard for the kids to build rockets, homes etc. for the beanie babies.

Molly has just started putting her face in the water and is now swimming around the hot tub like a fish! She puts on her goggles and begins swimming around the tub only coming up long enough to catch her breath! We will now be out of the hot tub for the next month or so, but I have a video of her from earlier this week...

Click Here for a video of Molly "swimming" in the hot tub

Click Here for a link to new Photos

Growing Up and Thinking Lots

2010-02-17T12:54:00.000-05:00

Molly is doing well and asking LOTS of questions. She has been interested in boys, marriage, babies and how they are born. She has a HUGE crush on her classmate and friend, Victor, and we kept thinking it was going to be short lived, but she is still going strong. The Victor crush started around Valentine's Day and she is making him new valentines everyday. She even found a small toy and wrapped it in tissue paper all by herself for him. She is very interested in marrying Victor and is concerned because he is already supposed to marry another classmate, Helen. She seems OK with the idea of Victor marrying both Helen and her.

She has been asking about babies and where they come from and how they get out and where Jim and I came from etc. Last night Molly was asking Jim again about how the baby comes out and "is there a whole where the baby was? I was pretty small so it was probably a small hole." She was also asking about how Jim and Uncle Mike came out of Gram's tummy and Uncle Tripp and I came out of Mimi's tummy etc. It is fun when she asks questions like this and we get a glimpse of what is going on inside her head. She has had similar questions about death "is everyone going to die at different times?" "then there won't be any people left" and she has briefly asked what happens when you die. Deep questions that I was not prepared for! My parent's cat, Tony, died last year and soon after that my Uncle Tommy died and I think that got her little wheels spinning, but it took almost 6 months for her to ask anything about what she must have been thinking of off and on for a while.

We had our hot tub delivered last Thursday, we filled it on Friday and we have been in it everyday since! Molly seems to be feeling well and has been walking independently off and on in the house. We went to the mall on Monday and she walked the full length of the mall twice with her walker, which I think is the most she has ever walked. This is very promising and wonderful to see. It is hard for me to not think about the fact that walking is something that comes and goes. I am working on enjoying the moment, but it is hard not to prepare for when she is hurt and cannot walk. She seems very pleased with herself, which is wonderful to watch.

We are working on improving Molly's independence and even creating a few chores for her to help out with. Up to this point she has not been independent with anything except feeding herself. Another OI mom suggested having Molly take her dirty laundry in her walker basket and so far that has been a big hit! She clearly feels really good being able to do something all by herself and feeling that sense of contribution. She is now also responsible for feeding Howie, our dog, twice a day and has been another big hit.

We are starting to think about this summer and I am starting to toy with the idea of having my own "camp" here for part of the summer with 3 or 4 other kids to allow Molly to have that experience... we'll see if this is one of those "would be nice" ideas or one that I actually follow through with - I'm hoping to make it work out.

We are also getting excited for the OI conference this summer (July) in Portland, OR. We are really lucky that there is going to be a family OI camp the following week (for free) that will include some water sports and other fun activities for Molly. It is going to be wonderful for Molly and the rest of us to see all of the things kids with OI CAN do rather than seeing what her peers are doing and saying "Molly can't do that". We have already had some wonderful experiences with families with kids just a little bit older.

Off to look into swim lessons...

She's growing!!

2010-02-02T14:55:00.000-05:00

Molly is now 35.5" (my unofficial measurement) and 14 Kg (30.8 pounds).

She sure felt heavier!!

Molly is in the midst of arranging a "midnight feast" at the moment. I'm not sure where she got the idea, but it sure is adorable. She sets the table and puts stuffed animals at each seat.

Snowed In!

2010-02-01T16:14:00.000-05:00

We are currently living in a beautiful winter wonderland! It snowed on Friday night and the snow is still here! This is the most snow we have ever had and the longest we have had snow since living here in NC.

We had a snow playdate on Saturday with the Kalorin's (Victor is in Molly's preschool class) and then came inside to warm up with hot chocolate and pizza. Sunday was another cold and white day and the three of us played in the snow and then after lunch made the 1.5 mile trek to Whole Foods for some cookies and really enjoyed getting out of the house. It has been nice to wake up to white outside, but I really wish Molly could still go to school - she and I both need some time apart!

I'm guessing she will not have school again tomorrow, but hopefully she will be back at school on Thursday!

Here is a link to lots of photos of Molly:
Molly in the Snow
Molly 2010 Photos

"The OI Dance"

2010-01-28T19:37:00.000-05:00

Molly has recovered well from her fall last week. She is complaining of pain in her bottom, but not very often and she is able to walk (with her walker), so we are thinking things are on the mend. We have determined that all of the late nights and fussy behavior over the past few weeks has been an increasing problem with constipation - so nice to finally have an answer. We have been using miralax every morning in chocolate milk, which Molly is loving, and also increasing our "moving foods": dried apricots, fresh mango, blueberries and juice. She is much happier and bedtime has been much more manageable since we figured out what has been going on.

She fell today and banged her mouth against the table. Her lips are red and a little swollen, but her bones seem to be doing OK, which is a huge relief.

I am feeling more than a little overburdened and we are now beginning to work to find some help to make life a bit more manageable. Molly is 100% dependent on me for almost everything she does and that is not allowing me to do basic daily duties and impossible to get us settled into our new house and work on getting Molly the services and devices she needs to improve her mobility and independence. We are hoping to have an OT (occupational therapist) come and help. OT's help with fine motor skills and daily living activities. We ran out of our allotted visits in the fall and have really been missing having an OT for her. We are also "impatiently waiting" for Molly's hot tub to arrive.

I have come up with a new charity idea, which I have named "Habitat for Someone" and have sent the following email to the Ellen Degeneres Show (please feel free to email Ellen with my idea as well):

Dear Ellen and All,

My name is Sarah and my daughter, Molly, is 4 and has Osteogenesis Imperfecta or Brittle Bones. Her blog is: http://mollysullivan.blogspot.com.

What do you think about starting a Habitat for "Fill in the blank" rather than Habitat for Humanity segment? This would involve utilizing local volunteers to improve a home for a child/family/person that has a physical disability. We have been in need of some home adaptations and are working on them when our finances allow. I know that there are far too many families in this same situation that could use local support and help to adapt their home for the needs of those living there. We have been fortunate enough to move into a ranch so that our daughter can get to her room independently - a luxury so many others in our situation do not have. We are still struggling to find the time an resources to do what Molly needs as quickly as we would like. I would love it if you could help me to spear head an effort to get the resources to families like ours that have a need, especially for a child that could so easily be resolved with a weekend or two of volunteer hours.

I would be more than happy to do anything necessary to help create this organization and am confident that with the exposure of your show that this could be come a wonderful national organization to fill a very significant need - maybe Ty Pennington could even help???

A story, and some pictures

2010-01-23T20:33:00.003-05:00

Molly's favorite show these days is "Charlie and Lola", where the main characters are English. This has allowed Molly to pick up a pretty good English accent.

So at bed tonight, Molly decided that she is going to have a "flying circus" tomorrow. And then, in an english accent said, "and now I will speak in spanish, since everyone will speak spanish at my circus." She continued the rest of our conversation and bed time routine with an adorable English accent, insisting that she was speaking spanish.

I have been horrible about putting up new pictures and video since the move, but I have started to go through them and upload pictures again. I'm putting Molly's pictures up here: http://picasaweb.google.com/jsulliv/Molly2010#

There are some really great videos to upload as well, but I haven't finished going through those yet.

Here are some of the pictures I have uploaded:

From Molly 2010

4 and Still Fragile

2010-01-21T14:25:00.000-05:00

I am having a hard time today. Molly fell last night and we're not sure what she has broken, but it seems like it is her right tibia (lower leg - again) and she is complaining of pain in her bottom, which is either her tailbone or a lower spine compression fracture.

She slept in our room and after oxycodone and valium she seemed to sleep well. She was hesitant and was not willing to sit up completely. She has improved throughout the day and has even stood with her walking boot on for a little while. I am always torn as to how to handle things when it is unclear what is hurting her and how significant the pain is. She has a very big pain tolerance and she is also very determined. I guess I should let her do whatever she feels comfortable with, but it is hard not to worry.

We did not take Molly to school today. It was the right decision, but it has made for a very long day. I am now being nagged to the point that I cannot write anymore....

Happy Birthday Molly!

2010-01-13T01:08:00.000-05:00

Wow!!! Molly is 4! It has been a long and wonderful 4 years. It is wonderful to see how much better things are than we were envisioning when she was first diagnosed. We are so lucky to have her in our lives and very lucky to have friends and family around to provide the support and love that we have needed during the ups and downs - THANK YOU!!

Molly is quite excited about her birthday and was on a bit of a high today anticipating her big day tomorrow. We do not have school on Wednesdays, so we are having her party tomorrow, which will be quite fun. Jim's Mom is in town and has really added to the excitement and celebration.

Molly and Gram have done a room makeover for her bedroom and it looks fabulous!! Molly now has a lavender room and lots to accessories to "pull the look together". Thank goodness Gram is good at this decoration stuff. I am terrible and Molly really seems to care (sorry Molly ;).

She has been doing well, but has me thoroughly baffled. She is doing well, but complaining of pain of her legs and arms. She has started walking independently in the house for short distances and seems fairly stable, which is wonderful. It is hard to know how much to encourage her to do without overdoing it.

She got a new lamp that has a touch base in her room, so for the first time she can turn the lights on and off in her room, which is wonderful. I have realized that I need to focus on what are some realistic goals for her independence and then figure out how to achieve them. I'm sure if I had set a goal for her to be able to turn lights on and off this would have come to mind. Anyone else out there have some other good goals for independence? Someone suggested that I have her bring her own dirty clothes to the laundry room, which is a good one - I would love some more!

Merry Christmas!!!

2009-12-25T11:03:00.000-05:00

We woke up to a very happy and excited little girl this morning. She was excited to see that Santa came and brought her the two stuffed animals she asked for and some finger puppets and stocking stuffers.

She has been intoxicatingly happy. She has gotten in to the spirit of both the giving and receiving and went shopping with Jim for my presents and painted a picture on canvas for Jim.

We are heading to Molly's classmate's, Victor's, grandparents for Christmas "dinner" this afternoon, which should be a lot of fun. This is our first Christmas as a family without extended family and it has been a bit of an adjustment.

We went for ice cream last night and then drove to find some fun Christmas lights. We came home to sit by the fire and eat and enjoy being together. While Molly was standing eating her dinner she fell and it seems she might have a new fracture in her Right Tibia (the one with the cast on it). I was able to contact another OI family - that had experienced the same thing - and was assured we could at least wait through the night without an x-ray. She slept well and woke up happy, so either the fracture is very minor or the cast is doing an effective job of splinting it. Either way we are very thankful to not have to spend Christmas in the ER.

Molly's First Cast

2009-12-18T19:50:00.000-05:00

We are a bit behind in our posting, but better late than never. After conferring with Molly's ortho in Omaha we decided to try our first cast to see if she could start to weight bear and walk with a cast on (the "walking boot" or black boot was just too heavy for her to be mobile with). She was terrified as we got ready to do it, but did amazingly well once she saw it was basically just wrapping the leg with some material. She was able to get purple and pink striped and they cut a "window" to allow us to use her bone stimulator (that requires skin contact at the fracture site).

She was able to get up on her feet that night and has been getting more and more interested in walking. We have decided that since she is up and mobile that it is reasonable to wait another 2 weeks and allow the fracture to heal enough so that she will be able to stand once the cast is removed. We did get a waterproof cast so that she could start to use a hot tub once we were able to get her one at our new house. We closed on the house on Monday and are now in search of a new or used hot tub that will meet our needs. Other OI parents have recommended that we not get the cast wet unless it is for water therapy (i.e. not in the bath), so bath time is a two person job. One of us in charge of keeping her casted leg (the right one) out of the water while the other does the washing. She has begun to complain off and on of her cast itching, but for the most part has handled it well (as usual).

Today was Molly's last day of school until the new year and we were able to go for most of the day to do family center time. It was great to see her in the classroom and really enjoying herself. They sang us a gingerbread man song (sorry no video) and she really participated in most of it, which is a nice change.

We are spending Christmas at home for the first time this year and hopefully we will create some nice traditions in the coming week. Our tree still needs to be decorated and I am hoping to find some time to bake/decorate some cookies as a family.

Merry Christmas/Happy Holidays to All :)

Tibia Fracture (again), but with the right splint she is a much happier girl!

2009-11-28T18:09:00.000-05:00

We got home from Savannah last night and after we all got settled we took a look at Molly's leg (her right) and concluded that it is the Tibia and not the femur. After we got that sorted out I made a fiberglass splint that goes from below her knee around to her toes. She had a good night's sleep last night and we are now weening her off of the oxycodone.

Jim and I spent today unpacking and sorting through our massive number of boxes and Molly did a wonderful job playing by herself.

Can't wait to have some pictures to post of our new house!!

A Broken Leg, but still a very Happy Thanksgiving

2009-11-26T17:28:00.000-05:00

We are in Savannah spending Thanksgiving with one of Jim's Aunt's. We came down late Tuesday night (a 5.5 hour drive) and spent Wednesday afternoon exploring downtown Savannah. Molly was cruising along a bench on a brick walkway and broke her right leg. It is hard to know whether her leg broke and then she fell or if she fell and then broke it, but we are guessing it broke first and then she fell. She is saying it is above the knee (femur), but there have been times she thought it was her femur and it ended up being her Tibia. I would guess it is her Tibia (right in the middle) where she has had a lot of fractures (there is a big knot there all the time because of all of the fractures). We need to take some follow-up fractures for her surgeon, so we will get a picture of what is going on sometime next week.

We are all moved into our new house, but still have a lot of unpacking to do. The house was built in 1958 and it has been a bit neglected in the past 5 years, so we have had some things to take care of. The bills went into our name on Wednesday and as soon as the water for the irrigation system was turned on it started spraying water all over the yard. Thankfully Jim caught it and the people that took care of our last house were able to come over in less than an hour. There is a $500 part that froze and is broken that we will have to replace if and when we want to hook it back up. We are loving the house and location despite these minor inconveniences. I have been able to walk Molly to school, which was WONDERFUL and we walked to another family's house for dinner one night and Molly got to play with several kids her age.

We are thinking since Molly broke her leg yesterday that we will probably head back to Raleigh tomorrow, but we'll see how she feels tomorrow.

I tried to pack everything we would need in case of a fracture, but forgot to pack the board we made to support her splinted leg on her wheelchair. When we were in the city we went to get her medicine and found that it had leaked all over the bag and there wasn't any left. Most of her pain medications are controlled substances and it is complicated to get them on short notice especially out-of-state.

Molly's spirits have been amazingly positive, which has made this recent fracture at least a little bit easier to accept. She was just starting to feel good on her legs and even walked 3 or 4 feet on Monday. I know that there are going to be lots of steps forward followed by steps back, but I think it will continue to be difficult each time. Of course we wish that things could be different for Molly. She is still of lots of smiles and joy, which is all we can ever ask for.

We're Moving (Today)

2009-11-18T06:36:00.000-05:00

We recently put our house on the market to try and find a house that would be a better fit for Molly. We love this house (and especially our neighbors), but all of the bedrooms and bathrooms are upstairs. The house sold in 10 days and we close this Friday. We have been looking and wavering between buying an existing house and building one.

We have found a wonderful old ranch that is only 0.3 miles from Molly's preschool, which is at an elementary school. She will be able to drive her power wheelchair on sidewalks to both elementary school and middle school. I am beyond excited for the opportunities that this will open up for her. The house has a circular driveway in the front, which is perfect for Molly to be able to play in the front yard in both her walker and wheelchair.

The movers arrive in 2 hours and there is still lots to pack (so of course I am on the computer). Molly has a cold that has made sleep a challenge and prevented her from going to school this week. No the perfect timing, but whatever we haven't gotten done the movers can do. We are SO excited to move and be in a place that is so well suited for Molly. The new house has 3 bedrooms and the entire house has hardwood floors, which is perfect for Molly. The bathrooms leave something to be desired and there is no garage, but in time we will make this house just right for us. We won't close until next month, but the house was vacant, so we are renting from the current owner until we close. They say things always work out and in this case it seems things have worked out better than we could have imagined.

Molly is starting to feel a lot better on her legs (I think we're 5 weeks post-op) and she even walked with her walker in the new house. She was in the hot tub last night and bumped her right leg and immediately asked to get out. She has clearly cracked something, but within a few hours was attempting to stand for brief periods. We are all hoping that whatever is hurt won't slow her down for too long so that she can be back up and walking.

OK... back to packing...

Oops - Missed October!

2009-11-07T20:00:00.000-05:00

Things have been more than a little crazy here. We put our house on the market two weeks ago and got an offer on Tuesday! We close on the 20th of this month, so we are scrambling to pack up and figure out where we are going next. We have been looking for a while, but still have not found exactly what we are looking for. It seems we will most likely end up building, so we are going to rent for a while.

We found a house to rent down the street from Molly's school, but it isn't available until next month and I think we will need to do a little work to clean it up before we can move it (the rent is a steal, so we are willing to do a little ourselves). We can walk to Molly's school and there is another family down the street that we are becoming friends with and their son is in Molly's class.

Molly is doing well, but still is not feeling up to standing for more than a couple of minutes. She has been complaining of a lot of aches and pains and we realized she is due for her Pamidronate soon (the IV medication), so hopefully a lot of those issues will go away once she gets her medicine. The buyer is getting our hot tub, so we will be without that form of relief for the next several months, which will be hard.

Molly is definitely feeling a little bit out of sorts with all of the changes taking place. She doesn't want Jim or I to be more than a few feet away and is still having some issues with me leaving her at school, but that seems to be getting a little bit better.

We are all over the place with what we want/need in our next house. The thought initially was to get/build a ranch w/1 bedroom upstairs for guests. We then starting thinking about building one with one bedroom suite down and then having the rest of the downstairs be living space, but from talking to other parents they assured me that Molly would be going up the stairs to see what was happening and that no matter what whatever was happening upstairs would be where she wanted to be. So... we are back to thinking a ranch is best, so we will probably end up building and now it is a matter of finding a lot that isn't right under the airplanes, near the highway or so small you can touch your neighbors house. Let the adventure begin!

Home and Healing Nicely

2009-09-29T17:10:00.002-05:00

We have been home since Saturday and I think we have all gotten some well needed rest. Molly was wearing "Wee Walkers" (black walking splints), but after seeing how little mobility she had and noticing how uncomfortable she was when I picked her up (they pulled down on her legs because they are rather heavy). So, I made some fiberglass splints and that has made a tremendous difference both in her mobility and her comfort. I still need to set an alarm to give her medicine during the night, but she generally stays asleep while I do that and is sleeping all night long.

We have decided to sell our house and look for a house that better suits Molly's needs and also is hopefully closer to Jim's work. We do not have any bedrooms on the first floor, which means we carry Molly up and down the stairs every day. We are thinking in the next year or so that will become much less age appropriate and more challenging/dangerous as she gets bigger. It has been a challenge to try and stay focused on this while taking care of Molly and managing her post-op care. We are rather big collectors of "stuff" and therefore have a very big challenge to try and get the house in order.

Enough procrastinating... off to do some work :)

Back Home in NC

2009-09-26T18:24:00.001-05:00

It has been a long week and we are all very happy to be back at home. I am hoping Molly will have another good night sleep back in her own bed.

Rested and Feeling Better

2009-09-25T10:04:00.002-05:00

We arrived in St. Louis around 12:45 and all three of us were asleep by 1:15. Molly did really well and slept through the night - hooray. She is up, and eating breakfast for the first time since Sunday. She seems SO much more like herself - phew! Hooray for the magic medicine of time.

We now have the luxury of an entire day with nothing to do and nowhere to be. We fly out first thing tomorrow morning and hopefully Molly will be that much better by then.

When I was putting her on the potty this morning I noticed that her legs are significantly different lengths now. She has two walking boots that are identical and the right leg is completely covered from the knee down with the boot and the left leg has almost an inch sticking out. He warned us that with the way the right leg broke that there would probably be a discrepancy. I am hoping that the difference is exaggerated with the boots and won't be as significant once we get her up and in shoes.

All in all we are doing leagues better and enjoying being out of the hospital and in a familiar house.

Out of the hospital - En Route to St. Louis

2009-09-24T23:30:00.002-05:00

We checked out of the hospital around 5 and started the 7 hour drive to St. Louis right away. Molly has done well with the transfers and I think we will all benefit from being out of the hospital and back at Jim's parents.

Thanks again for all of your messages of support. It is so nice to have emails to help distract us when we are in the thick of things.

Pictures from the hospital

2009-09-24T09:10:00.002-05:00

Molly is definitely doing better today. She is getting everyone to buy things from "Lilly's store." That basically amounts to asking Molly if random things are for sale, and she rings them up on the cash register.

We were also very impressed with Molly's first drawing of a person with arms and legs.

Notes to myself (and others) for our next surgery

2009-09-24T07:19:00.003-05:00

Tell the nurse as soon as we get in the room that all medications are to be scheduled and not given as needed. The past two times I have held off on the valium waiting to see spasms... don't wait to see spams! The valium was quite affective at managing her pain in between doses of other medications.

If she doesn't seem comfortable with the given narcotic/"big medicine" dose - ask if the dose can be increased and/or the frequency it is given. Dilaudid was more affective than the morphine, so we can ask for that the next time.

I think the next time I would try the epidural again, but if we find it is finicky or not affective get it pulled and start Toridol and up the other medications. I wouldn't wait more than a few hours of a finicky epidural. I have heard when they work they really work, but ours did not this time and we should have realized that sooner.

She tends to get itchy between the narcotics and the incisions, so start benedryl right off the bat.

When they first start the medications ask for them to give the frequency and also the dosage and write it down in a notebook or on the whiteboard. Stay on top of the dosing and be sure that they are given on time.

Be sure to start miralax as soon as you get in the room - that's when she will suck down 1-2 big cups of water without any coaxing.

Don't let the nurses make you feel bad for asking for more or different medicine for her. I was a bit intimidated to ask for benedryl yesterday for the itching she was having under her casts, but now feel confident it was perfectly appropriate. Remember you know her best.

Happy Molly is back

2009-09-23T20:53:00.003-05:00

We are past the magic 36-48 hour window after the surgery. We saw more and more of Molly being herself today. We went for a trip around the hospital in a wagon, and had a chance to start playing different games.

Here are a couple of today's choice quotes:

"Can we come back here again? They are nice here."
"I got this kitty for being brave this week."

Tiny Steps Forward

2009-09-23T16:37:00.002-05:00

Molly is feeling better, for the most part today. There are times when the interval between doses is a little bit too long, but more often than not she seems to be in a lot less pain than yesterday. We transferred her to a wagon today and took a trip downstairs to the gift shop. This was fun in the beginning, but soon became a bit of a nightmare. She is still very tired and became a bit hysterical when she couldn't find the right thing to buy. We came back up and she promptly fell asleep for a little under an hour.

She is watching show after show after show at the moment and interacting with us more and more like herself. We have not figured out a plan yet as to when we will be leaving, but we will probably find that out tomorrow morning when Dr. Esposito does his rounds.

She is still not eating or drinking much of anything and went 8 hours without going to the bathroom (after the catheter was taken out at 8 am). We got her on a bedpan a little while ago and now things seem to be moving in the right direction. I just hope she begins to eat and drink quite a bit more than she currently is.

All in all we are happy to have the past two nights behind us.

A Better Morning

2009-09-23T07:59:00.003-05:00

Molly got some much needed rest last night (off and on) and seems much more like herself. She is talking quite a bit this morning and being quite pleasant (a big change from yesterday). She is still not eating or drinking much, but I'm sure that will come sometime today. If only all 3 of us could take something to sleep through the first 36 hours... at least we seem to have made it through the worst of it :)

Epidural Free

2009-09-22T20:39:00.003-05:00

They have pulled the epidural after we decided that it wasn't working. They have increased her Dilaudid (a narcotic) and put in an order for Toridol (an IV motrin). The Dilaudid makes her feel a little better, but she is still in pain. I am pacing the room waiting for the Toridol to come up to the floor.

It has been a long day with lots of crying and whimpering "I hurt", which has been unbearable.

We got to lose the epidural and pulse-ox today and hopefully will lose the catheter in the morning. Then we just need to get the pain med cocktail that will work for us.

I really wish there was a better list of what to ask for when your child is in pain and how much, how often etc. It is hard that the nurses often are gun-shy to page the doctors for a change in dose or frequency. We had to push to get the epidural pulled tonight (since it wasn't working) and I only knew to push thanks to another OI mom who happens to be an ER doctor. They then thought we couldn't have toridol for hours due to the medication that might be in her system from the epidural, but again the ER doctor gave me confidence to push for it.

She just asked me "do you have brittle bones?" and when I answered "no", she said "that's good... you're lucky". That is just heartbreaking. She also said "this is a nice place" about the hospital - which is a remarkable thing given what she is going through. What an amazing little kiddo she is.

Back to the Medication Nightmare

2009-09-22T13:40:00.003-05:00

We cannot seem to keep Molly comfortable for more than 30-40 minutes. There has been too much crying and whining for any of us to handle. She just got a bolus of medication in her epidural and we have not seen much improvement as far as pain management is concerned. We have just paged the anesthesiologist to come up with a new pain management plan...

Pain Management has Improved

2009-09-22T08:47:00.002-05:00

Anesthesia just came in and I think we have Molly much more comfortable. They think there is some resistance in the line and not all of the medication was being administered and some has been leaking out. She came in (Dr. Marika Stone - wonderful) and did a bolus (pushed several ml's of medication through all at once) and that seems to have her much more comfortable. She is now resting peacefully. Here's hoping this lasts!

Night One Post-Op

2009-09-22T06:33:00.002-05:00

6:30 am

It was a long night. All three of us got some sleep, but in between the sleep was rough. We have finally figured out that she needs morphine every 2 hours and valium every 4 in addition to the epidural in order to be comfortable. She screamed off and on for 10 minutes in the middle of the night while we waited for her morphine.

This morning she seems a little bit more like herself, but clearly in a lot of pain and having a lot of fear as the nurses continue to come in to do one thing or another. She has eaten several popsicles, which is a good sign.

Today is a new day and hopefully things will be better today than they were last night.

Surgery updates

2009-09-21T12:19:00.013-05:00

We are at the Omaha children's hospital now for Molly's surgery. We'll probably be re-rodding both tibias today. I'll update the blog through the day as we have progress.

12:22pm
They have accessed her port, and now she is off to get x-rays. They had to bump one kid with a fracture ahead of us, so our surgery will likely be around 2pm central time today. Poor Molly hasn't had anything to eat since last night, and is getting hungry.

2:15
molly is in for surgery. She was in good spirits while we waited for everything to be ready. The surgery should take about 4 hours.

3:40
Surgery is finally underway. It took a while to get the all of the prep done.

4:05
Things are still underway, working on the first leg. Nothing out of the ordinary to report.

4:55
They have finished with the first leg, and they are moving on to the next. So far so good. We talked about having an epidural this time, which should help with the pain and recovery after the surgery is finished.

6:00
They have finished the other leg. There was less bowing it that leg, so it went more smoothly. Seems to have gone well throughout the surgery. We will probably see her in teh next 1-2 hours.

6:30

They are finished with the surgery and she is now being moved into recovery. He felt things went well. He did one incision at the mid-tibia area for an osteotomy (surgical break) and both fibulas are also broken. She may be slightly shorter on the right side due to the way the fibula is sitting, but he felt that it will balance out on its own or with subsequent surgeries and his main goal was for her to heal from this one. He noticed a lot callus (bone healing) on the front of the right tibia, which told him that she has been breaking that bone off and on for quite a while.

We should be able to see her in the next 30-45 minutes. The anesthesiologist is redoing the epidural because she wasn't getting the complete pain coverage that Molly needs (I don't want to know how they know that), but we are hopeful that they will have it figured out by the time we see her and that she will be comfortable for the next 1-2 days while it is in.

7:30

They are still trying to get her epidural set up. It will be a little longer before we will be able to see her. This waiting is unbearable.

9:30
We are in the room with Molly, and she is sleeping in bed. The Epidural seems to be helping more with pain management than previous surgeries. She asked for some water when we got into the room, and then she went back to sleep.

10:30

We're on the medication roller coaster. She was doing OK when we got up here and has since come to and been upset and in pain. She screamed and was angry (understandably so) and we are now trying new medications. We have started with morphine and will soon be adding some valium to the mix. Here's to tomorrow or the next day when I won't have to hear my daughter whimper in pain.

Hooray for Southwest Airlines!!

2009-09-15T08:24:00.003-05:00

We were trying to mentally prepare ourselves for a 22 hour drive each way, but we have now been saved by a reasonable fare through Southwest! I had been looking at other airlines and the cheapest flight was between $500-$600 - these were closer to $300!!

One more thing to cross off my "to do list"... now back to trying to get our house ready to put on the market.

Surgery on Monday in Omaha

2009-09-14T19:54:00.003-05:00

We went and got an xray of Molly's legs on Wednesday and there is definitely a fracture right at the mid-shaft of the right tibia and it also appears that the rod is migrating up into the knee. Dr. Esposito got back in touch with me today and said he didn't think this fracture would heal without replacing the rod. She has not been able to bear weight on the leg, which is unusual after 3-4 weeks with a rod in place.

Dr. Esposito's nurse called this afternoon and Molly is on the schedule for this Monday, in Omaha, at 1:00. The flights seem to be about $500 each given the last minute notice, so it seems that we are going to drive the 1200 miles!!! I know it will be an adventure if nothing else - thank goodness for DVD's :)

She has now come down with a cold and is feeling a bit under the weather, so we are offering her as much fluid as possible in hopes that this will pass or at least subside for the surgery on Monday.

She is now weighing in at 28.5 lbs

I am dreading the idea of having her going through yet another surgery, but I am hopeful that this will mean she will feel less pain in that leg and will hopefully be back to walking in a month or so.

Fun, Feisty and Back in School

2009-09-03T21:19:00.003-05:00

Molly is doing well and keeping us busy and entertained.

We have entered a new phase with more back-talk and tantruming than we are used to. We are now having the head turning fits in the store when she is told she cannot get the toy she has enjoyed playing with. Up until now we have been able to "visit" toys at the store and then put them back on the shelf. She is now saying "I won't let go" and she is hiding it behind her back or sitting on it etc. Oh so fun.

We were at REI yesterday and she was looking at sunglasses. When I told her she did not need another pair of sunglasses she had a nice big tantrum with "bucking" in her chair wailing and screaming and the proceeded to honk the horn (a beeping sound) on her power chair. When that didn't get her what she wanted she proceeded to "escape" and wove her way through the clothing racks all around the store. Funny now, but not at all funny at the time.

Molly had her first day of school today, which went extremely well. She has not been able to tolerate standing or walking for more than a few seconds since she broke her leg last month. We decided to start her off this year in her power chair in the classroom, which has given her a great deal of independence, which is good. She has a new aide this year, Sheila - who seems wonderful, but Molly has taken a little time to be willing to open up to her. We met Sheila last week for the first time. Molly was drawing pictures for the 3 returning teachers for this year and when I reminded her that we needed a 4th picture for Sheila she told me she would do one another day... only after explaining that we would not bring the pictures in until we had 4 she was willing to do one more (begrudgingly).

She seems to be warming up to Sheila very quickly and I am really excited for this year at school. The kids seem wonderful and Molly seems really happy to be there.

We have decided to put our house on the market and hope to be able to sell it for a good price and be able to build a new home with widened doorways and one story living for Molly that is also closer to Jim's office. Molly is very excited about the idea of being able to paint her new room purple (she does NOT understand why we painted her current room yellow - which is NOT one of her favorite colors). Boy does this girl have some strong opinions!

We have been talking a bit about what she might like to do "when she grows up" and she has now narrowed it down to being a Princess, nurse and teacher. She asked Jim what he wanted to do when he grew up and told him he should be a doctor. Jim said he wasn't sure that was something he could do, but Molly assured him he could... all you have to do is poke people and take tape off Daddy...

She is a bit unsettled about us packing things up and the idea of moving. She told me the other day that she dreamt that we had to move in to a doctor's house and they were poking and prodding her (ugh). I have of course assured her that would not happen, but she is understandably anxious. She also asked if when we got a new house would we get a new Howie too (our dog)?

Well, we live in a house FULL of stuff (mostly toys) and I have been frantically trying to pack to get us ready to be on the market and I am exhausted!! We are having a yard sale on Saturday and we are hoping to get rid of A LOT of stuff!

I am off to bed - sweet dreams :)

A Nice Visit in Maine, but Broke her Leg Yesterday

2009-08-17T21:23:00.004-05:00

We have been in Maine since August 2nd visiting my family and enjoying the weather and fresh air. We have been busy: visiting family, playing at "Mimi and Poppy's", going to the park, visiting a petting zoo, and exploring the coast of Maine via my parents 32+ year old boat :)

Molly has had a blast. We were out yesterday on the boat enjoying a beautiful day exploring a couple of islands. We stopped at one to have lunch, but I wasn't comfortable getting stranded by the tide (in case we needed to get Molly back if she got hurt) so we headed off in search of another nice spot. The criteria for a good spot is very different than the typical so it took us a little while to find something appropriate for her and still fun. We were in the water walking to explore and she slipped and fell and I knew right away that something was cracked/broken. She calmed down relatively quickly and was happy as long as she wasn't moving and nobody was moving/carrying her. We stayed on the beach and looked for pretty rocks and shells for a good 20 minutes while she settled down and it was a good way to keep her distracted. I found a star fish and hermit-crab (my first), which were both perfect distractions. Fortunately, I had remembered her splinting material and was able to splint the leg to get her comfortable before carrying her to the boat and for the ride back to the harbor. We were very close to shore so the ride back was a non-event.

Today has been a long day, but manageable. I was able to put her in the kiddie pool without her splint on, which was a nice discovery. She didn't move much and winced when she did certain things - like trying to splash with both arms made her leg hurt). I am guessing it is a femur fracture based on what she can and can't do. We will wait another few days and see how she is doing before putting her through another x-ray.

We are heading back to NC tomorrow and feeling excited to be back home with Jim (and Howie). We have been here for over 2 weeks and have had such a good time. There is nothing like Maine in August - make the trip if you haven't :). Molly tried lobster for the first time and LOVES it. My Dad has a few lobster traps, so we were able to give it to her a couple of times for "free".

I contacted Montreal regarding Molly's Pamidronate and we are going to go back to give her the infusions every 3 months due to her increased pain and irritability in the past 3 weeks. Here's hoping it makes a difference.

We also ordered Molly her manual wheelchair today that will be size appropriate for school, and are VERY excited for her to get it. I think it will make a big difference in her independent mobility, especially when she has a broken leg.

We fly out tomorrow from Boston and will have to head down first thing in the morning to be sure we are at the airport nice and early. Signing off for the night. Thankfully Molly seems to be sleeping OK with Motrin and a splint (and a room air conditioner - lucky girl).

An OI Gathering and Other Adventures

2009-07-30T15:47:00.004-05:00

It has been a very long month. Molly is doing well, but keeping me very busy.

We went to Gatlinburg, TN at the beginning of the month with 9 other OI families (12 OI kids in all) and had a wonderful 4 days together. The kids had a blast and Molly really seemed to love being around other kids with Brittle Bones. She has started asking Jim and I if we have brittle bones and if Howie (our dog) does etc. I know that this process will continue for many more years as she finds her place and figures out how things work.

We drove to Gatlinburg on a Thursday and spent the first night with the Suris (5 children - 2 with OI), the Novaks (3 grown kids of their own and now have adopted 2 siblings with OI), Beth Jacks (and her daughter, Halle), the Graves (2 children - 18 month old boy with OI) and us. We cooked pizza and visited and enjoyed the BEAUTIFUL place that we rented. The cabin was named "Amazing View Lodge" and it was very fitting. We got up on Friday and packed a picnic and made our way to a paved walking path along a river. With the help/corruption of the other families we all went down to the river and the kids have fun walking on the slippery river rocks and exploring. This is something that Jim and I would never have taken Molly to do on our own, but the other families all have older children than their kids with OI and were therefore a lot more comfortable testing the limits. Molly had a ball! The water was very cold, but your legs quickly got numb to it :). There were areas that had smaller pebbles and were safer for Molly to walk around and explore on her own. Everyone had a blast and I think it was wonderful for Molly (and Jim and me) to feel like we could do what everyone else was doing.

We headed back to the cabin and met several more families that arrived for the weekend. We had a BBQ night and spent time meeting the new families.

We got up on Saturday and packed a picnic and headed off to Pigeon Forge to go tubing down a river. It was so much fun. There were some rapids along the way, but they were relatively mild - especially in an inflatable tube). The ride took over 2 hours and it was a wonderful way to visit with some of the other parents while floating down the river. Once we got to the "bottom" we got to take a small school bus back to where we started, which Molly absolutely LOVED!! She sat with two other girls that were 6 and 7 and got them to hold their arms up in the air like you would on a roller-coaster.

We went back to the cabin and had Mexican night (everyone brought something to contribute to the meals each night). That night we headed in to downtown Gatlinburg to explore. We lasted until almost 10, at which point I was exhausted from a long day and so we headed back to the cabin.

On Sunday we went to Ober Gatlinburg, a local amusement park, and had a blast with the other families. The families with babies stayed on the sidelines (which is what we did when we went 2 years ago) and we got to take Molly with the "big kids". Molly and I went down a water slide (a tunnel that you ride down in a small inflatable raft). Molly loved it, but I was terrified because there was a lot of side to side "sloshing" as we went down. She got off and had such an adrenaline rush she almost could talk to Jim as she excitedly explained what the ride was like. We also went up a chair lift and then Jim took her down an alpine slide, a cement track that you ride down on a little "sled on wheels" that you can control the speed of. We had a great time and were definitely ready for some quiet time after that. That night was italian night. We all headed out on Monday morning and headed back home.

Jim's Mom, Gram, arrived on the Thursday we got back and stayed with us until Monday. She and Molly had a blast and Molly is already excited for her next visit.

It has been a long few weeks since we returned from our trip. Molly has been complaining off and on about her legs, teeth and just starting today her right arm. She has not been one to complain in the past, so I'm not sure what is going on. My guess is that one of these things is bothering her quite a bit and then other things that aren't as bad are just too much to take with the other pain. We went to her dentist today at UNC to have her teeth checked and from what he could see things looked OK. He said that the only solution would be to pull the tooth.

Some new Molly Quotes:

"I just can't bear it, this flower is so beautiful"

The "Perfect" Sink

2009-07-01T14:50:00.003-05:00

Molly has been doing really well with potty training. She is wearing underwear and is able to get on and off the potty by herself :). We have a set up that allows her to wash her own hands, which has been a huge step towards improving her independence. This has increased her desire to do more by herself and like everyone else. She is now flushing the big toilet when she has finished (even though she is going on the little potty). I was fine with this step and happy with her continued drive to be independent. I walked in this morning to check on her and she said "look, all clean" (her hands were all wet)... it only took me a second to realize what she had done... yes, she washed her hands in the toilet - ick!! We have since discussed how dirty the toilet is and to please not do that again. On a humorous side I realized that a toilet would be the perfect accessible sink for a little person (assuming it was NEVER used for anything but a sink).

One new quote:

"I didn't hear a please" (when I asked her to go wash her hands)

We are getting ready to head to Gatlinburg next week for a gathering with 7-8 other families with children with OI. We are really excited to meet/see all of these families and for Molly to have some time with other kids with OI.

Walking a lot Falling Some

2009-06-23T09:13:00.003-05:00

I have got to get better at keeping up with this blog!

Molly is doing OK. She is walking quite a bit - mostly at home. We finally got a lift in the van for her Power Wheelchair, which has been a wonderful "investment". We went to the children's museum last week and she drove the chair around like she has been doing in for months! She seems to intuitively know the limits of the chair. It is wonderful for her to have the independence to go where she wants for longer distances.

She has taken some spills lately and seems to have at least one fracture in her left humerus (upper arm), but so far has been comfortable enough with just ibuprofen. Her legs are also starting to bother her more and more, but so far she is able to ignore the pain and continues her walking.

We have been working on potty training and we finally seem to be on the right path. She now walks to the bathroom herself and can get herself off and on her plastic potty (the Royal Potty - Fisher Price) and we have now set up her own sink. I will be taking and posting pictures soon. We have 2 automatic soap dispensers - one with soap and one with water - so she can wash her hands all by herself. It is amazing what a difference it makes for her confidence when she can do things for herself.

School is over for the summer. She had a great few months and we are all looking forward to her having a full year there next year.

Some of her better recent quotes:

"I can't believe my eyes" (talking about something she saw at the children's museum)

"I just realized something Daddy... you forgot to give me a piece of candy"

"I want to be a different character Daddy" (playing a game on his phone)

Proud of our Princess

2009-05-25T19:25:00.002-05:00

Wow! Molly has been rather frustrated that she has not been able to use her walker since fracturing her collar bone a couple of weeks ago. She has been cruising along furniture and venturing a few feet here and there to get from one piece of furniture to another. I only realized today how capable she has become at walking independently. I had seen her go as much as 8 feet and wanted to capture it on video... below is a video of her walking longer and farther than we have ever witnessed!

Wait 'til you see this...

Molly Walking around our house (please ignore the mess)

We have had a very good couple of weekends. We went to our friends beach house last weekend and had a blast playing in the waves and relaxing on the beach. This weekend we went swimming at our neighborhood pool a couple of times and enjoyed getting together with some of our neighbors. Molly has loved all of the water time - maybe it even helped strengthen her for all of this new walking?!

Molly has just over 2 weeks of school left, which I think will be a difficult transition - I have got to start planning LOTS of play dates. Now that she has started school she asks most days if we are going to get to play with kids.

Way to go Molly! Here's hoping her bones will cooperate and give her a long while of walking before another fracture occurs.

Broken Clavicle

2009-05-08T14:47:00.003-05:00

Unfortunately, Molly's clavicle broke today. She was walking in her walker alongside Sarah, and was suddenly in pain.

Sarah, Molly and Gram are on their way back from the Ortho's office now. I'll put up pictures of the xray later this weekend.

Update: Here is one of the xrays:

Also, I have some pictures from last weekend. Here is a picture of Molly with Avery and Alexi, who also both have OI.

From Molly Spring 09

Jim

All is Well, Just busy and tired

2009-05-07T19:03:00.002-05:00

I know it has been far too long since my last post. Molly has been keeping us busy. She has adjusted very well to school and this past week increased from 2 to 3 days per week. We have not seen a lot of peer to peer interaction yet, but I know that will come with time. She has been wonderful at engaging the adults and now we are all working on keeping her safe (which means being close by) but allowing her to observe the classroom without adult interaction (still a work in progress).

I slowly worked my way to out of the classroom and down the hall. It was very stressful in the beginning to be worrying about her the whole time we were apart, but I am finally relaxing more and more now that I feel comfortable knowing that they understand Molly's unique needs and risks. This past week I left the school grounds for the first time and ventured 2 miles away. It was wonderful to have a few hours to myself without the constant worry of where Molly was and what she was up to.

Molly and I headed up to Maine at the end of last month to attend my Uncle Tommy's memorial service (he died at 57 from what we think was congestive heart failure). Molly and I also made a trek to Montreal to go see the doctors at the Shriners hospital. She has been complaining of pain in her back and has also been mentioning that her neck "feels weird sometimes". We met with Dr. Glorieux, the doctor who first started treating OI children with the osteoperosis drug - Pamidronate - that has helped Molly so much. We had x-rays taken of her back and neck and found that she crushed one of her vertebrea when she fell about a month ago. Her back still looks straight and her neck looked fine. Whew! I was so relieved to hear that for now both her neck and back looked good.

We have been exhausted by the end of the day lately and so I will need to work on finding time to write more often about the funny things that she does and says. Her teacher, Ms. Lynn, had larangitis last week and ever since Molly has been saying "I am going to change my voice.... there I think I changed it, but I'm not sure". Today she told her new aide, Miss Teigh, that she lost her voice... they looked and Molly thought it might be in her shoe, but it was moving too fast for her to get it! I need to start carrying pen and paper with me to capture more of the funny things she says. Three is a very fun age, but extremely exhausting. She is battling with us throughout the day and by the end of the day Jim and I just want to collapse!

I will leave you with a statement an injured veteran said on Extreme Home Makeover that I thought was a good goal... "One person can make a difference and I think everyone should try."

Molly Haircut

2009-05-01T12:36:00.002-05:00

I haven't taken any good pictures of it yet, but Molly decided to get her hair cut last week. Here is a picture taken from my phone.

Some pictures

2009-04-15T08:36:00.003-05:00

We haven't put up any pictures on the blog for a while, so I thought I'd put up a few pictures.

Here is a picture of Molly getting ready for her first day of school:

From molly winter 09

Molly's first day in the classroom:

From molly winter 09

Eating chocolate from an Easter Egg:

From Molly Spring 09

Enjoying her haul of easter eggs at Livy's house:

From Molly Spring 09

-Jim

Happy Easter

2009-04-12T20:26:00.003-05:00

Molly has had a wonderful Easter weekend. We went to Amanda's church yesterday for a puppet show and egg hunt, which Molly loved. We woke up this morning and searched her playroom for jellybeans. We headed over to her friend Livi's for an outdoor egg hunt and lunch and then went to a neighbors for dessert this afternoon. Lots of activity and fun for all.

Jim has taken tomorrow off and we will have another family filled day :).

Jim and I were watching a show this evening about a new math genius (titled Brainman) and heard a quote from another savant, Kim Peek (Rain Man), that I really liked and wanted to share:

"You don't have to be handicapped to be different - everybody's different."

Molly is Well

2009-04-03T18:26:00.004-05:00

It has been a challenging month (at least for me), but I think today was a sign of better things to come.

School has been working well. It took a little while for me to take a breath and trust that things would fall into place, but things have settled in nicely. Molly has really enjoyed being at school. She is still predominantly interacting with the adults, but the kids are interested in her, so I think she will slowly warm up and figure out how to play with them. They completely rearranged the classroom to make it safer and more appropriate for Molly, which is more than I would have dreamed for. We are still trying to figure out how to make the "sensory table" (the table with plastic bins full of rice, water or whatever) accessible to Molly. The playground is also a bit of a challenge. She does not have any independent mobility there, so that makes things a bit more complicated to allow her opportunities to interact with the other kids (who are mostly running around in circles).

Molly's femur has healed nicely - thankfully!! She has had several falls since then and 2 of them have had pain that has lingered for days. One was last week when she fell to her bottom and started screaming and crying 'My back, I've hurt my back' and there was quite a bit of hard crying and a few longer nights (that were complicated with a chest cold). She is continuing to complain of some pain in back, but it has not been affecting her mobility. She fell on Sunday while using her walker and fell onto her face. I think she might have cracked a rib and also banged her head, but more than anything I think that fall was especially scary.

Today was a big day. Molly had her port flushed this morning, then her teacher and one of her aides came to the house to do an in-home visit. Molly got to take them on a tour of the house, which she really enjoyed. We now have a plan in place for the rest of this year and potentially for next year with school. Molly's itinerant teacher, Ms. Dawn, has been acting as Molly's aide in the classroom because there has been a hiring freeze. They now have found an agency that they can hire someone from for the rest of this year. This will allow us to potentially increase Molly's school days from 2 to 3 and then to 4. The thought is to go to 3 days once the new aide is trained and things are going smoothly. The rest of the class is there 4 days a week, so our goal is to have Molly go 4 days as well so that she is a part of the class and not just a part-time participant.

We have been making an effort to use Molly's bone stimulator everyday on her left Tibia and that seems to really be improving her mobility. She has been walking farther and farther distances, to the point that I often get her walker out of the car and she walks all the way to a store and then can walk all around! She has been getting more daring and taking more and more steps without any support. Today was her biggest/longest walking stint since that one video in her skunk costume. She took 6-10 steps unsupported and did so over a dozen times! She was so proud of herself!!

No School This Week

2009-03-10T09:54:00.002-05:00

Molly was supposed to start school today, but her head teacher, and one of the two aides have had a death in the family. We have decided to postpone Molly starting school until next week. We were concerned that the students will be out of sorts this week with both their head teacher and one of the aides absent.

It is disappointing to have to wait since the school year will end in early June, but we also want Molly to have success and feel safe once she starts. She doesn't seem disappointed at all and is taking it in stride :).

We are continuing to search for a wheelchair for Molly and another OI family just posted that they have a preschool size chair they would be willing to give us. I am waiting to hear whether another family needs it more and whether the dimensions are appropriate for Molly. We are also continuing to wait and see about getting Molly a chair through the help of Chicago Shriners, which would be ideal because it would be made specifically for her.

Molly is complaining of pain in her right Tibia and we have started using her bone stimulator again. She is doing some standing and walking even with this pain, but we are trying to be a bit conservative.

Preschool starts next Tuesday

2009-03-04T08:46:00.002-05:00

Molly was supposed to start school yesterday, but due to snow on Monday we weren't able to have a meeting with the staff to discuss the plans for Molly in case of an emergency.

We received 2-3" of snow on Monday, which shut the whole town down.

We had our meeting yesterday and Molly will start next Tuesday. There is a hiring freeze at the moment, so the teacher who has been coming to our house will be acting as Molly's Aide possibly through the end of the year. There will be 4 adults in the classroom when Molly starts. The class is made up of 7 tuition students and 4 hearing impaired students. There is a head teacher, Ms. Lynn, and two language facilitators that are there to help the hearing impaired children interact with the other students. The teachers all wear headsets that they can "beam" directly into the hearing aids of the student they are working with. Their plan is to have Molly rotate around the room and that she will not have one particular aide, but rather have the teachers tag-team responsibility throughout the day.

I am very nervous about Molly entering the class, but I feel very good about the intentions and capabilities of the staff. It is going to be a learning process. I will be going with Molly and mostly hiding in a corner until we all feel that the staff is ready to keep Molly safe and know how to handle her. I have encouraged them to tell me when it is time for me to leave the classroom - I don't know who will be ready first: me, Molly, or the staff! I am really excited for Molly to start. It is going to be so wonderful for her to be a part of a group.

Molly is doing well healing, but seems to be having pain in her Tibias (lower legs). She is standing for seconds at a time, but soon complains that her knees and/or lower legs hurt. It has been hard having her hurt and not able to stand/walk after such a long time.

We are now trying to find a way to get Molly a wheelchair that will work for her at school. Our insurance will not pay for a manual chair since they bought the power chair. I have made several phone calls and I am still waiting to hear back from a few places about either getting a demo chair at a discount or possibly going to Shriner's to get a chair made for her - which would obviously be my first choice. The chair that she tried out at the conference that would work perfectly costs around $4300!!! That is a lot of bake sales! We are really hoping that Shriner's can help us find the funding to get the chair. This would allow her to get around the classroom and reach the tables.

Preschool in less than 2 weeks!!!

2009-02-20T19:33:00.003-05:00

Whew! It has been a long week. We went to observe the school on Tuesday (without Molly) and I was completely overwhelmed by the idea of being in the classroom with 11 other students 3 and 4 years old. I observed kids being kids, which included hitting, pushing, shoving and running and falling into furniture. For the average kid these are just part of the day, but for Molly most, if not all, of these incidents would have resulted in a fracture. I think it is hard for any parent to drop their child off and allow someone else to be responsible for them, but for me this is almost more than I can handle. I have been obsessive about keeping Molly as safe as possible to minimize her fractures (which I think are now over 40).

The teacher at the school is wonderful. Lynn, the teacher, started the preschool program after observing some hearing impaired children in the general population and noticing that they were not required to "use their words" to communicate and were held to a different standard than their peers. She is very passionate about customizing both the classroom layout and the curriculum to each child's specific needs. I was overwhelmed on Tuesday trying to envision how to make this work, but today went extremely well. The teachers had spent this morning rearranging the classroom for Molly in her wheelchair. Lynn has also planned a unit for net week to teach the student about people in wheelchairs etc. Jim and Lori (our neighbor) came today and helped to reassure me that this was a reasonable an appropriate place for Molly. Lori, our neighbor, did some reading up online about Lynn, the teacher, which increased my confidence in this particular classroom. It is hard not to have another classroom to choose from, but I am starting to feel better that this is going to be a good placement for her.

Yesterday we had a "play group" with Abby, a local 2 year old little girl with OI. They were SO cute together. Abby was putting her hands to her mouth and calling "Moll" and then rolling to get to where Molly was. Abby was getting up close and cuddling in with Molly. Molly was jealous because I was paying attention to Abby, which complicated things a little bit. Nancy, Abby's Mom, has been so trusting of me and allowed me to pick Abby up. I picked Abby up and "sat" her on Molly's lap (still in my hands) and Abby snuggled in with Molly and rested her head on Molly's shoulder - it was ADORABLE!!!

Today has been a good day. We are definitely excited about the prospect of Molly going to school and being able to play with other children her age.

Molly is Healing

2009-02-12T20:31:00.002-05:00

There is a lot going on, but Molly is continuing to feel better by the day. Jim woke up early yesterday morning and was unable to get a full breath. He took a shower and then started coughing and there were streaks of blood, so we decided to err on the side of caution and headed off to the ER to get a full evaluation. Two and a half hours later we left with no answers other than that they didn't think it was pneumonia, or a tumor, etc. He went to the primary care today and found out it is a condition related to a recent bad cough and he was given a prescription for an inhaler. We are all glad to have an answer and one that isn't very scary!

Molly has been crawling a few feet at a time and has not needed pain medication, which is wonderful. She has started "tall kneeling" and when I told her I didn't think it was a good idea she said "look Mommy it's fine it doesn't hurt at all" hard to argue with that!

We have our preschool meeting tomorrow and we are hopeful that we can all come up with a solution that will help Molly to get the peer-to-peer interaction she definitely needs. It is wonderful and sad at the same time that she has many invisible friends that follow us around. She has recently watched the Disney film Mulan and so as of right now Mulan is with us everywhere. She was working with the PT today and was pretending to tie up a rope for Mulan's carriage - she has no shortage when it comes to imagination!

Tonight as she was "falling asleep" she was singing and I had to listen closely to hear what it was she was saying - she was singing "cooperation" over and over - she is a constant source of entertainment :)

She woke up very happy today and "She was a robot" (and she uses a robot-like voice) and then we talked about what she ate as a robot. Everything I listed she said yes to and then laughed very hard. She loves to be teased and is definitely into finding things that are silly. One of her favorite books at the moment is "Fluffy, by Helen Lester" which is about a porcupine named fluffy and a Rhinoceros named "Hippo" and she loves the humor in it. She just loves games and being teased and will say "You Tease Me" or "Be Silly Again" etc. When she isn't battling with me over every action of the day I really do enjoy her thoroughly!

She's crawling!

2009-02-10T08:37:00.002-05:00

Molly is one amazing little girl. She broke her femur less than 3 weeks ago and she is now crawling! Not very often or very long distances, but nonetheless she is crawling!

She had X-Rays last week and they showed that the bone is starting to heal and he gave us the OK to take the splint off. She had her Pamidronate Infusion on Friday and Saturday. About halfway through her first day of the infusion Molly became hyper and super happy, like we had just pumped her full of a bunch of sugar! She started crawling soon after that. Boy do we love that Pamidronate! She has definitely been feeling better since getting her infusion. She is not on any pain medication at this point and I think a lot of that has to do with her infusion.

We have our meeting with Wake County public schools on Friday to talk about her preschool and I am hopeful that they have found a good placement for her.

She seems to have stopped napping at the moment, which has made for very long days. I don't think she stopped talking for more than a minute all day yesterday - I am exhausted!! Jim went to San Diego from Friday through Sunday to celebrate Nanno's 90th birthday, so I was going solo this weekend. We really missed Jim and I was again reminded of my great respect for single parents!!

Better But Not Great

2009-01-30T10:39:00.003-05:00

It has been a long week. Molly's pain is much better, which is wonderful, but there is still a lot of fear and some moments of pain. We went on Tuesday and picked up a brace that was made for her. It has been great for the past couple of days. It is VERY substantial. It is similar to the braces you see when people have had knee surgeries/injuries. It has joints at the him, knee and ankle and then velcro straps keeping it in place. There is a thick and hard plastic waist that goes around her middle and all along her back. It was great for transferring in and out of the car, wheelchair, etc. but doesn't seem to be as good at night.

She has been very feisty and demanding over the past several days. I don't blame her for being so frustrated at her lack of mobility - she can't even go from laying down to sitting up independently. It has been exhausting and challenging to decide when to give in to her bad, demanding behavior and when to talk about better ways to ask what she needs. There has been a lot of crying this week - some from pain, so from fear, and some from frustration. I am really looking forward to having this fracture healed and in the past.

She was up during the night and very upset. We finally got her back to sleep, but this morning I decided to take her brace off for the first time to see if it was the brace that was causing her problems or if it was her leg. Well, the transition from the brace to splint was full of fear and crying, but once the splint from the weekend was back on she was fine. She said she doesn't want the splint because it can get caught. She said it got caught the one night (meaning Saturday night) - ugh.

So far the splint is working, we'll see how the day progresses.

Molly started "school" this week. A teacher is coming twice a week to play with Molly and so far it has been wonderful. I will keep you posted.

Jim is working a ton and so we have not had the chance to take and/or post pictures - we'll work on it.

Molly Update

2009-01-25T19:12:00.003-05:00

Sad Sad Sad

Sorry to complain, but we are having a very tough time here in NC. Poor Molly. She was starting to feel a little bit better, so we had started taking her upstairs to sleep. That worked out fine on Friday night, but Saturday night something didn't work out well in the transfer when I went to put her down her leg twisted and it was like it was broken all over again. The Mclains (Amanda that is 12 with OI) came over to give us some advice about how to make a better splint and that seems to have improved things at least a little bit.

She is having so much fear that it is sometimes hard to know when she is having pain and when she is just afraid it will hurt. She is still her happy and silly self most of the time, but when it comes time to do anything like go from sitting to laying down or change a diaper etc. there is a lot of drama and crying.

We spoke with Dr. Esposito last night and he is confident that this will heal nicely on its own and that she will be feeling a lot better in 7-10 days. It was nice to hear that she will be feeling better soon. We are going to look into having her fitted for an orthotic brace (the black ones you see people with after knee surgery) that would immobilize her knee and hip without having to use a SPICA, which is a cast that goes from toe to armpit on the hurt leg and and down half-way on the good leg. I am really hoping that we can avoid a SPICA. She would not be able to sit up and would be covered with fiberglass over most of her body. We have been fortunate to avoid these so far because of her rods and I am hoping for that trend to continue.

Jim's Mom is flying in today and I am hopeful that having an extra set of hands will lift our spirits.

Bad Right Femur Fracture

2009-01-22T13:08:00.008-05:00

Ugh. I had been looking forward to posting about our big snow storm and now have to write about Molly's long night with a broken leg. I was at soccer last night and Jim was getting Molly ready for bed and she fell while using her walker. She has been complaining about knee pain off and on for the past several days, which was probably an indicator that she had a weak spot forming.

This was our worst fracture to date. Thank goodness she has a rod in the leg. I got home within 20 minutes of the fracture and we made a splint, which is a very emotionally draining process. It is hard to take off the parent hat and put on the nurse/doctor one for your own child. As we made the splint (which helps to immobilize the bones) you end up moving the very limb she doesn't want moved and the screaming can be intense and horrible. We had the splint on within 1-2 minutes and that did seem to provide some needed support. The leg swelled fairly quickly and she just kept crying and saying her leg hurt, even with the splint on. In the past once we got the splint on and kept her still that coupled with some good pain medication has been effective at allowing her to rest. She did not sleep at all last night. As soon as she would start to fall asleep she would jerk her body (like that feeling you sometimes get that you are falling as you start to nod off) and this would really hurt her leg and it only took a few times of this before she must have decided she would just rather not sleep. She watched movie after movie all night long.

Poor Jim is coming down with a nasty chest cold at the same time and so we all had a rough night. This is the first time I have found that the medicine and splinting didn't seem to be enough. It is hard to find ways to soothe her when she is in such significant pain. All I want to do is pick her up and hug her, but of course the last thing she wants is to be moved at all. I am feeling so sad for her. This has been a very difficult year full of pain. I am not loosing sight of the fact that she is doing far better than we ever would have imagined, but it is still so hard to see your little girl in such significant pain and you don't have any tricks left to help comfort her.

We went to the orthopedists office today for x-rays and she did far better with the transporting to and from the car than I would have predicted. She fell asleep in the car on the way home (after a few more of the painful jerks as she fell asleep) and is still resting there now - keep your fingers crossed that she gets some good sleep.

Dr. Esposito just happened to call last night to discuss her humerus (upper arm) x-rays from last week and gave me some good advice and reassurance that we were doing the right things. Boy do we LOVE Dr. Esposito. He predicted right about where the fracture ended up being. He was hopeful that she would be comfortable within the next few days thanks to the rod, but we will have to wait and see. Without seeing the films his thoughts were that we would wait and see if the leg healed properly on its own, which would be nice since she just has surgery last month. We know that we only have 3-12 months left before one of these fractures will send us to surgery, but the longer we can wait the bigger the rods will be and then the longer they will last for her.

Happy Birthday Molly!

2009-01-13T17:00:00.002-05:00

It is hard to believe our little princess is 3! She had a wonderful birthday party on Sunday with her two friends: Livi (almost 4), and Audrey (3). We decorated tin purses/lunch boxes with gems and faux flowers, had sandwiches and chocolate cake with chocolate frosting (which Molly requested and baked herself). My parents were both in town for the big event, which made it even more special.

Today is her official birthday and she has been giddy and happy all day. We bought a fabric "swing" from Ikea and it is now hanging in our family/tv room and was a very big hit. She spins around and around and got so dizzy this morning she just sprawled out on the floor for a few minutes after getting out.

We took down the crib on Sunday and she is adjusting to her new "big girl bed". We bought a memory foam mattress and placed it on the floor with a fabric tent that goes over the whole thing. She has been good at staying in and not exploring the room (we took almost everything out of the room for safety), but wakes up a few times in the night and calls for us. She called for me this morning around 5 and said she had fallen out. I'm not sure if she just worried about falling out or actually fell out, but she was unharmed and back in bed when I got in there. We have foam tiles and pillows all along the edge of the bed to cushion her if she did fall out, but it is still something we are all a bit worried about. We were starting to worry that as active as she is that she might get her foot caught in between the rails of her crib and if she were to fall it would be a very nasty fracture. She was also now tall enough that the crib rail hit her right at the nipple line, so we decided the risks of keeping her in the crib were beginning to outweigh the risks of being in a bed. Two nights into it things are going well other than the fact that we are having to go in a couple of times during the night.

We went to Dr. Caudle's (the orthopedists) office today and took X-Rays of her right arm and things look very good. We will be sending the films along to Dr. Esposito, and we are hopeful she will get the green light to start using her walker!! HOORAY!

2009-01-06T10:02:00.002-05:00

Things are well at our house. We had a nice New Year's at home with Molly. We had a picnic on an aerobed and watched Horton Hears a Who. It was a nice way to spend the holiday as a family.

Molly seems to be feeling better by the day and has wanted to walk more and more and often only needs to hold one of our hands. We are tempted to bring out her walker, but will try to hold out for the verdict on her x-rays next week.

The Extreme Makeover Home Edition on ABC this Sunday (8 pm eastern) is for a little boy with severe OI. We are really excited to see what they have done for him to get ideas and also to help people understand Molly's condition. Hope some of you can take a look.

Tea Party

2008-12-28T09:26:00.004-05:00

Molly is having a ball with a tea party right now and her vocabulary is cracking us up (and shocking us).

Here are some of the gems:

Would you like some tea M'am?
Would you like to join my tea party Daddy?
I forgot the tea, didn't I?
Please put the cup down on the plate when you're finished.
Do you like butter in your tea?
Can't we separate the utensils?
You separate the forks and I'll separate the spoons.
That's an important thing, isn't it?
Would you like some tea Howie?
It's a little big, so we need to cut it.
We need to finish drinking before it melts.

"Just" a Fracture

2008-12-26T19:01:00.002-05:00

Good news...

We went to an Urgent Care Clinic today to have X-rays taken of her arm. Her right Radius (or whatever the bigger bone in the forearm is) is bowing up towards the elbow and she might have a new fracture in her Humerus just above the elbow, but the good news is the rod looks good!

We are relieved that Molly gets a break from the hospital life.

We have had a nice time spending the week here in St. Louis, but we are relieved to be heading home tomorrow and not to Omaha.

Merry Christmas From the Sullivan's!

2008-12-25T21:38:00.006-05:00

Merry Christmas!

We have had a fun day with Molly. It was definitely "The Year of the Princess". She was most interested in the Sleeping Beauty related toys, but also really enjoyed the process of opening the gifts.

We baked cookies for Santa yesterday and left out carrots for the reindeer. She slept until almost 9:30 and then was ready to eat chocolate and open presents! She had lots to open and got a bit overwhelmed and so we held off opening the rest of her presents until after dinner.

She is complaining of pain in her right arm (the one with the rod) and we are going to go and get an x-ray tomorrow to make sure that the rod isn't migrating into her shoulder or elbow. The rod has compressed as much as it can, so there is a risk that it could end up going through one end or the other. She asked for her splint on yesterday and the day before, but then didn't want it today. She has been a bit fussier than usual, but at the same time is using her arm more for things like writing and eating etc. We're hoping to find a place other than the ER to go and get an X-Ray to send to Dr. Esposito. We are supposed to go back to NC on Saturday, but if it didn't look good we could change our flight home to next week and drive to Omaha to have Dr. Esposito fix whatever is going on. Keep your fingers crossed that things look good and it is just a false alarm!!

Here is a link to photos from Christmas CLICK HERE

Gram, Jim and Molly at the Butterfly House here in St. Louis:

Nice to Be Home :)

2008-12-07T20:00:00.003-05:00

It was a long 11 days living out of a suitcase and Molly and I were very happy to be home.

It was difficult being away from Jim, but thankfully I had Jim's family to help.

Molly has been doing remarkably well. She has shown no signs of needing medicine and is now using a cuff splint and nothing else!

She has had a little bit of diarrhea this week. We're not sure if it is due to the IV antibiotics or something she picked up in the hospital. I'm sure it will pass soon. We are just so grateful that she is doing as well as she is. She is cruising around all of the furniture and even cruised down the hall yesterday.

She continues to be obsessed with princesses and introduces herself as one of them at least half of the time. She asks questions like, does Cinderella/Sleeping Beauty/Ariel take baths? Does (insert princess) wear dresses? Do they take off their shoes? Do they wear barrettes? etc. etc.

Out of the Hospital - In the Hotel!!

2008-12-02T20:05:00.002-05:00

Wow! This has been such a different experience. She was uncomfortable last night, but she didn't have a sling (she refuses) and so we brought out the splint we used when she first fractured the arm. It made a HUGE difference! She was feeling so much better within a few minutes that she asked for food and ate an entire dinner! She had morphine before coming up to the hospital room floor, but never needed anymore after that point. Hooray.

She was well managed with just motrin and Tussionex (hydrocodone).

We checked out of the hospital by 9 this morning and didn't know what to do with ourselves! She is still having some pain both in her legs and obviously in the arm.

She and I took a 3 hour nap this afternoon and felt much more human after that.

We are back in the hotel and Molly is happily playing.

If things continue as they are right now we will be heading back to St. Louis tomorrow morning.

Hip Hip Hooray!

Surgery update, 12/2/08

2008-12-02T09:55:00.002-05:00

I just got a call from Sarah, and Molly is doing well today. She is doing so well that they are planning on leaving the hospital later today.

Sarah said that Molly did get some sleep through the night, and they put on a new splint today that has been working well.

Jim

In the Hospital 12/1/2008 - with updates - arm is rodded

2008-12-01T14:18:00.003-05:00

12/1/08 1:25 pm (Central Time)

We have been at the hospital since 11:00 and Molly has now been taken back to the OR.

She was a bit feisty about accessing her port, but other than that things have gone quite smoothly. The staff here is so wonderful. I feel very lucky to have a wonderful surgeon and staff all at the same place - too bad it's all the way in Omaha!

There will be a nurse coming out to give us updates as to when the surgery starts and how she is doing throughout and I will update you as I get updates.

Thanks to all for thinking of Molly and hoping for a good outcome.

They are going to take X-Rays of her legs while they are in there, to check on the fractures she has had this past week. He could feel bowing in her right Tibia right down at the ankle. He thinks we won't do anything about the legs today in hopes we can get some more time out of the current rods.

Thats all for now...

3:05 (Central Time)

Dr. Esposito came out to talk about how her leg X-Rays looked and we needed to make a decision about whether or not to rod her left Tibia. The rod i snot "seated"/fixed at the bottom, which means the rod will not telescope. It is also bowing where the male and female parts meet (just below the middle of the bone). The rod is quite close the bone in the front and will eventually break through the bone, at which time it will need to be replaced. We debated replacing this one rod, but both Jim and Dr. Esposito feel it is reasonable to wait. Her left Femur is bowing and those rods are now almost 2 years old. We may need to replace the one rod in 3 months, or we might be able to wait a full year before she needs another surgery. If we are able to wait a while longer we would most likely replace all 4 leg rods at the same time. I am feeling a lot of ambivalence about this decision, but in the end we respect Dr. Esposito's opinion and his recommendation is that we can wait.

Here's hopin'!

I'll be heading out to be with her and will try and post soon.

Sarah

Thanksgiving

2008-12-01T14:11:00.002-05:00

Molly had a wonderful Thanksgiving in MA with my family. There were lots of cousins, grandparents, great Aunts and Uncles, Great Grandparents, and one Uncle there to shower her with lots of love. She was giddy with excitement over being around so much family, which was fun for all of us.

One of my cousins has two boys, Jackson (5) and Parker (2), which was really fun. Jackson and Molly had fun playing together and I know Parker will be old enough at the next gathering to play with them as well.

Unfortunately she had 3 fractures in one day (Wednesday), which was emotionally very draining and sad to see her in pain that many times in one day. She was walking really well on Tuesday and Wednesday day, but after the fractures she stopped standing all together.

We arrived in St. Louis on Saturday. I flew with her by myself for the first time and it went fairly smoothly. Molly had fun exploring "Gram and Papa's" house and dancing to Uncle Mike's guitar playing.

We packed up the car yesterday and made the 7 hour drive here to Omaha. Molly did INCREDIBLY well given all of this travel, which we are very thankful for.

Our Sweet Girl

2008-11-24T22:24:00.003-05:00

We have tried to pack as many fun events into the past few days and we've had a ball. We went to the mall yesterday and played with all of the princess toys at the Disney store (currently Sleeping Beauty is her favorite).

Santa is already at the Mall and Molly wanted to meet him. She was terrified last year and yelled "no Santa" when we would walk through that part of the mall. This time she was interested in shaking his hand. She wanted to give him a present and find out what he wanted for Christmas, which was so sweet. He wants homemade chocolate chip cookies, which Molly said she would make for him - too cute. She has gotten so good at sharing.

Happy Thanksgiving!

Healing Nicely, but Surgery is Scheduled

2008-11-16T21:37:00.004-05:00

It is amazing what a difference a week makes. She is feeling a lot better and needing a lot less medication with each day. The X-Ray shows that it is slightly displaced and it appears that it will not heal straight. We spoke with Dr. Esposito and decided that surgery made the most sense to help insure we aren't in the same place in another 6 months.

She will have a rod placed in her right Humerus (upper arm) on December 1st. We are going to see our local ortho on Tuesday and will take x-rays of the left arm to make sure that it does not also need a rod. This will be Molly's 3rd surgery in 2008, which is an overwhelming reality.

It has been an emotional week. It has been difficult keeping her comfortable and also keeping her safe. She has started standing and cruising around the furniture, but with only one arm for support the risk of a fall is much higher. I find myself envisioning her falling every few hours and going through the thought process of what would be involved.

Her spirits have been good throughout this week. She has not complained once (other than about the pain) and has not said "I can't do it" about anything, even with just one functioning arm. It is wonderful to see her take this in stride and just continue with life. She has been doing a remarkably good job at doing everything with her left hand, which will be a good skill to have.

It has been overwhelming, but we are grateful that she is doing as well as she is. Please think of her on Dec. 1st during her surgery.

Some Molly quotes and a singing video

2008-11-16T20:13:00.002-05:00

Molly has been surprising us with some really funny lines in the past month or so.

Molly has a new game in her play house, where we "read the menu" and order food from each other. One night she ordered a soup and a grilled cheese. When I gave her an empty plate and told her it was her grilled cheese, she responded: "I asked for this on whole wheat please."

When Mimi was in town babysitting, Molly said: "could you please stop talking for a minute, I'm on the phone."

A couple other recent gems:
"It was already out here, I didn't recognize it"
"I've started the process"
"I can't get by that section"

In other news, we have FINALLY caught Molly singing on camera. She has been singing most of the time for a couple months now, but we have not had any luck recording it.

Check out the video of her singing HERE

- Jim

Fracture #36 (or so)

2008-11-09T22:23:00.003-05:00

We have been applying for preschool services, so we currently have an unusually accurate fracture count. We were out to dinner Saturday night and Molly fell and broke her right Humerus (upper arm). This is the same arm she fractured back in March just a few days before her 2nd rodding surgery.

Molly and I were in the bathroom and she was using her walker. Her wheel bumped into my foot and she fell forward face first. I knew right away and then it was a matter of getting out of the restaurant to figure out how bad it was and where. While we were trying to calm her down Jim asked her if she wanted to get ice cream - assuming she would say "no" if it was honestly a fracture. I already knew it was a fracture and was extremely surprised when she said that she did want the ice cream first! This didn't last long as the pain increased, but it shows how tough these little kids really are. We got her home and pulled out the splints we had from March and she was insistent that we use the arm cuff rather than the shoulder to wrist splint. I was prepared for a long night, but she slept through the night. Today, Sunday, she was complaining a bit more about her arm and so we switched to the shoulder to wrist splint and then ace wrapped her arm to her body, which seems to be working a lot better.

Her spirits have been amazingly good and I am so impressed. She only has one arm to work with, which makes lots of things more challenging, but she has not complained or gotten frustrated at all. She will not be able to walk until the arm is healed since she needs the use of her walker. We were able to switch her wheelchair joystick to her left side and we went for a walk today, which went relatively well. She will remind us when we go to pick her up or put on a jacket... "nice and gentle" and "don't move my arm - it still hurts". She has been a model patient!

We have not gotten an X-Ray yet, but will try and do so on Monday. We need to see how straight the arm is, if it is not relatively straight we will be discussing rodding the arm with Dr. Esposito - I sure hope we don't have to do that right now.

We will be contacting Preschool Services this week to notify them of her fracture, we are going to try and use this as an "opportunity" to enlighten and educate them about the challenges that we face.

Our LIttle Skunk

2008-11-02T19:27:00.006-05:00

Molly with her best friend "Livi" holding out her hand to hold...

All of us with Molly's "Potato Head Pirate Pumpkin" and two we carved as a family...

Molly with all of her "Loot"...

Molly is doing remarkably well at the moment and we have had a good weekend. Molly was a skunk for Halloween and had a wonderful time. We went to a friends for a party before trick-or-treating and then went out with a group of kids from the neighborhood. Molly drove her chair around and was literally humming she was so happy. It was adorable! Jim and I took turns carrying her up to the door and she said "trick-or-treat" and was very excited to pick out her own candy, searching for purple packages whenever possible.

Here is a video of Molly walking without her walker better than she ever has!! (CLICK HERE)

We had a pumpkin carving party last weekend and Molly had a blast having so many kids here at the house.

We are going through some further frustrations with the process of getting Molly the services she needs for preschool. They called last week and want to arrange a social setting to see what my specific concerns are. They told me that I would be in the doorway and able to see her the whole time - I don't know WHAT they were thinking. I then told them that I would be right at her side the whole time and would like the other children (2 others) to have their parents right there with them as well. She said - what if the OT was there to watch her? I explained that there would not be enough time to train the OT to be an appropriate aide to Molly. They have agreed to "allow" me to be at her side for the observation. I am feeling so frustrated and alone going through this process. We are now going to bring up the possibility of getting a lawyer to help advocate for us, but really hope it does not get to that point. Most of the other OI children we know throughout the country have been given the appropriate services (a 1 on 1 aide) without even having to ask for it, including children here in North Carolina.

Long Time No Post...

2008-10-28T14:34:00.003-05:00

It has been very challenging trying to find time to sit down and write in the blog. Molly is very busy and demanding. She was at the breakfast table last week while I tried to go on the computer... I looked over after a minute or two and she had somehow reached the tube of toothpaste and opened it up and was eating. I didn't know how much she had eaten, so we had to call poison control... it all turned out to be fine, but it is for reasons such as these that I have not had any time to myself or to get things done in general.

She has been doing relatively well, but this is definitely a challenging age. She hurt her left femur 2 or 3 weeks ago, but seems to have completely recovered from that. She right foot began hurting with her new orthotic shoes and that slowed her down for a couple of days as well.

She knows what she wants and, even more so, what she does not want. It makes things such as brushing her teeth, getting dressed, getting in the car, brushing her hair, etc. take a very long day, whcih makes for an exhausting day!

She is talking more and more with each day and repeating funny things back to us all the time... here are some highlights from this week:
"Can you stop talking for a minute, I'm no the phone"
"I don't know about that"
"Let's go to the Halloween section" (at Target)
"You never know with stickers if it will hurt or not" (when we take them off her skin)

She has been taking several steps without her walker and seems very proud of herself.

We went to the hairdresser yesterday and Molly got her first "big girl" haircut. We cut about 2" off and she cried off and on throughout the process - oh so fun ;). She looks adorable. I was worried it would make her look younger, but it had the exact opposite affect. We will be sure and post a picture soon.

We have been continuing to use her bone stimulator on both tibias and that seems to be helping quite a bit. We went and saw Dr. Caudle today and her X-Rays looked great! We will get them off to Dr. Esposito to get his opinion and hope he feels the same way. It is hard to believe she has already had her femur rods for 18+ months!!

My Mom was in town this past week, which was a huge help and greatly needed! This is an exhausting age and it is times like this that having family around can make a big difference. Napping has been a challenge lately, which makes for a very long day. She is up there right now... "not sleeping".

She is getting more and more independent with her walker and can now walk around almost all of Target without any difficulty. We weren't sure she would ever get to that point - it is hard to believe she is already so mobile before the age of 3. It is amazing to think how much Molly has exceeded our dreams and aspirations for her physical development.

Molly is going to be a skunk for Halloween and I am really looking forward to taking her around the neighborhood this year - I think she will enjoy the process, but we will see how things go. I am preparing for the possibility that she will not want to wear a costume.

We had our initial preschool meeting last week with Wake County and I am extremely overwhelmed by the process and discouraged by their responses and suggestions. I know that she is ready to be in a school setting and will really enjoy it, but she needs a 1:1 aide to keep her safe. They are challenging that because she is doing so well cognitively that she does not qualify. My argument is that in order to reach her potential she needs to be in a social environment with her peers, which is something I have not been able to find for her up to this point. We will be hearing from them in the next week or so, but I have a feeling that it will be a several month appeal process.

More Molly quotes

2008-10-06T08:14:00.002-05:00

Yesterday, in response to:

"Do you need to go to the bathroom Molly?"

Molly politely responded with:

"That is very nice of you to offer, but no thank you"

And now this morning, Molly wants me to stay home with her all day, just like the weekend. So she said:

"I think you have the flu Daddy. You need to stay home and rest."

-Jim