An OI Gathering and Other Adventures

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

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

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

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

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

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

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

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

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

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

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

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!!!

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

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!

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

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

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

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!

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!  

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.