Nutcracker Girls Night :)

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

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

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

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

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

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

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

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

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

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!

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

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

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!!

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

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"

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 :)

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

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

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

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

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...

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!

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

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

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!!

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!

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"

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

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

From Molly 2010

From Molly 2010

From Molly 2010

From Molly 2010

4 and Still Fragile

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!

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!