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.

Tea Party

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

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!

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 :)

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!!

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

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

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

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

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

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

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)

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

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...

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

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

Creative at bed time

Molly is always coming up with new ways to lure us up into her room when she is in bed.

Tonight it went something like this:

Molly, over the monitor: "Mommy, I need you to come get me."

Sarah, from outside Molly's room : "Go to bed, I'm not coming up there."

Molly, over the monitor, expressing surprise: "Hey, Mommy, I just heard you. I could hear you in here. I heard what you said."

And then, with a captive audience, Molly went for the kill: "Mommy, my sock came off, and I can't sleep without it. I need you to put my sock on. Can you hear me Mommy? I need you to put my sock on."

- Jim

Teeth are better, but fractured her left leg...

It has been a long week and a half getting Molly back to herself. She was fussy for longer than we had anticipated, but things look like they are healing nicely. She seems to like her new teeth and asks to see her shiny teeth in the mirror. She has a couple of red spots on her gums that we need to keep an eye on and may need to have looked at, but not yet.

I got her a new kitchen this weekend at a yard sale and she has been loving it. While she was playing with it today she slipped and has fractured her femur. The rod seems to be doing a great job of splinting it and so far all we have done is ice it and given her motrin. She has not tried crawling or standing since it happened, so we will see how things go. It is so hard when things are going so well and something as simple as a little slip can cause her so much pain. She is in good spirits and continues to be a fairly happy little girl.

She continues to shock us with the things that she remembers... today she found a plastic egg and talked about when we went for the egg hunt in the Spring. It was Jim's birthday last weekend and we talked about what we would do for her birthday and she blurted out... "my birthday is in January", which took us completely by surprise. She is now also telling people she is 2 and a half when asked how old she is, which I think is adorable (I admit I coached her on that one).

Before and After Pictures

BEFORE...


AFTER...

Here are some before and after pictures of Molly's teeth. We will be getting one of all of her metal "princess" teeth when we find a moment...

Princess Teeth

The first night was a long one. She was up around 10:30, at which point I just brought an aerobed in thinking that would make her less fussy, but nothing seemed to help. She was up several times and at 3:30 was bouncing in her crib asking to go downstairs. We were able to keep her in her crib until around 6, but there was a lot of awake time throughout the night.

Yesterday was OK, but a very long day. It is hard to know what is causing her to be irritable and tired, but it is some combination of the anesthesia, discomfort of her new teeth (and inflammation of the gums), and the cold she still has. Jim stayed home yesterday, which was a big help. We gave her more pain medication last night, which seemed to help a bit. She woke up a couple of times, but only for a few minutes.

She finally got a look at her teeth today and said that she likes her "shiny" teeth :). Hopefully by the time it gets to be an issue with her peers she will be comfortabe enough to handle it. We have told her to tell people they are her "princess teeth" when they ask... hopefully this will be sufficient for now.

She is still whining a lot, but seems much better today. She said it feels better to eat, but complained that her teeth hurt when trying to eat a pear from the fridge - it will take us a while to figure out what works and what doesn't with a mouth full of new teeth.

Doing Much Better :)

Molly woke up after 2 hours of sleeping when we got home!!  She seemed MUCH better.  Hooray!  She is still quite fussy, but seemed much more herself.  She wanted popsicles and went on to eat many as a "first course".  A few hours later she was asking for food - a very good sign.

She is still very tired and was asleep before I even left her room tonight.  

She said her teeth felt good while she ate... time will tell.  We haven't gotten a good look yet at how her teeth look, but we're happy to think she is going to be able to have an easier time eating :)

Successful Surgery - We're already home

Molly is still asleep in the car, but we are home. The surgery went well and the staff was extremely sensitive and cautious with their care of Molly. We gave her Versed (which makes her a bit dopey and helped get her into the OR with minimal drama. She definitely remembered her last surgery and said "this is a different 'hosipal' (hospital)". They let me bring her back to the OR and she did cry a little as we left Jim. They had me hold her as they put the mask on to put her to sleep. Very odd being there as they did this. I then placed her on the operating table and everyone assured me they understood the concerns of handling someone with OI.

It was a little over 2.5 hours after that that they came to get me. She woke up feisty and asking for me. It was hard going back to recovery. Her face was puffy and her lips and mouth area are swollen and a bit bloody. She was crying/fussing and a bit ornery. They gave her some medication and she settled down quickly.

She told us she hurt and was very fussy. We got her to take a few sips of juice, so they started the discharge paperwork. She fell asleep on the way downstairs, so we are hoping that a lot of her fussy behavior was just the fact that she is tired. We will see when she wakes up. The top front 4 teeth are white, but the rest are all metal. I haven't had a chance to really take a look, but it was hard to see so much metal in her mouth. I hope that it won't look too strange - especially to her peers. They told us she can get white ones when she gets older if she feels it is important. At least she should now have functioning teeth! I think this is going to be a big improvement for her.

We will keep you posted. Thanks for thinking of her today and wishing her well.

Surgery Tomorrow - Wed. the 17th

Molly is scheduled for her dental surgery around 10:30 tomorrow morning. We are all quite stressed to be putting her through another surgery, but we know it is necessary. She complained of her back molars hurting when she was eating, which just makes us feel that much more confident.

We took some pictures this evening of her teeth and will post them - probably after the surgery as a before and after. Her top front will be white and he is going to try and make the bottom front white as well, but the rest will all be metal. It will be such a big improvement from her current teeth that some metal in her mouth isn't such a big concern.

She has a cold now, which has had me nervous - I don't want them to have to postpone, but I think it will be OK. I have been giving her as much Jello, popsicles, and juice boxes as her little body can handle in hopes of keeping her cold under control. Yesterday she had had enough Jello and starting playing with it... I decided to let it go and let her play a bit... next thing I know she is saying "look Mommy... lotion" and is smearing red jello all over her face!! I was worried that she would have a slight red tint that I would have to explain, but it wiped right off :).

We are hoping to be coming home tomorrow night, which will be a very different experience than her last two surgeries. I am hoping she will be in very minimal pain and will be easily distracted with TV and toys, but we will have to wait and see.

Please think of Molly and hope for a successful and uneventful surgery.

I think she knows that something is going to happen, but not in any detail. When we went for her last surgery in Omaha we brought Dr. Esposito a couple of "jibbitz", which pop into Crocs (which he wears in the OR). We went to the same toy store today and Molly said - I want to get a present for the doctor - I cannot believe the things she remembers!! Dr. Wright (the dentist) will be getting a Sleeping Beauty "jibbit" tomorrow :).

Heading to bed now for an early wake-up.

More pictures and videos

Molly getting ready to help start her infusion at home.


The PVC pipe parallel bars get a lot of use these days. Molly has also grown enough that we are going to have to buy some new pipe to make them taller.


I have finally put up the video of Molly playing in Howie's dog crate.
Click here to see the video

Pamidronate #16 - Full (Montreal) Dose

"Mimi", Rose-Marie Chiasson (Montreal Shriner's Social Worker), Molly and Me

Molly with Dr. Glorieux


Molly had her 16th infusion and is feeling much better. We spoke with Dr. Glorieux, in Montreal, and he advised s to give her a full dose for the next several infusions to increase her bone density and possibly reduce her fractures. This is generally done over 3 days, but we were able to calculate (with Dr. Glorieux's help) how to give it to her over 2 days instead. She was quite perky after her first day and was so hyper after the second day that she couldn't nap.

She took several steps today without her walker and Jim was able to capture it on video... here she is taking 3 or 4 steps on her own!!!

Molly Walking Video

This evening she crawled into Howie's crate and insisted on having her bedtime books read while inside and continually announced "I'm a dog... woof woof". When Jim took her up for bed she said "Look at my armpit, doesn't it look ticklish" - boy is she good at delay tactics!!

New Videos :)

It has been a busy few weeks between Molly, her therapies, battling with the insurance company and trying to figure out the right dose for her Pamidronate infusions. She has been fussy the past week or so, off and on, which has certainly added to the challenges. It is hard to know if it is just a new phase of being a toddler, or if she is really started to be uncomfortable (bone pain) because she is due for her infusion.

After A LOT of phone calls I think we have finally gotten unofficial confirmation that insurance will cover the OR, anesthesia and other hospital fees related to Molly's dental surgery on September 17th. I won't breath a sigh of relief until we have it in writing, but we are hopeful that this is the end of this worry.

Molly has been cute as ever and making us laugh and smile every hour. She has started getting off the potty and announcing what her poop looks like. "Look Mom... a hot dog"... "No, I said... it is NOT a hot dog!!", to which she replied "I know, I'm pretending".

She has had a lot of different imaginary friends around lately. There is the purple octopus, Fifi, Peter Pan (who likes to honk the horn when I'm driving), and now an imaginary girl with an orange walker. She has started saying things like "the pretend girl would like some fruit"... She also was up in her crib yesterday, "not napping" and shouting (through the monitor) "Roar... I'm a dragon" and clearly entertaining herself with all of the growling.

Dr. Glorieux, the endocrinologist from Montreal, got back to me today and encouraged us to switch to Zolendronate (another bisphosphonate like Pamidronate), which only has to be given 2 times a year, as opposed to the 4 right now, but we are hesitant to change to something that has only been used for the past few years. We have decided to continue with PAM for at least this treatment, but at his advice have decided to give her a full dose (as opposed to the half she has had for the past year). This will mean she gets the same dosage for two days. I am hoping this will go well and that we will see some changes in her bone density.

It has been stressful for me the past few weeks trying to juggle taking care of her as a parent and taking care of all of the medical concerns that we have hit all at once.

We went to a playground today with her PT and she had a wonderful time and surprised Pam (her PT) and me with all that she was able to do. She is one determined little girl!

Here are several new videos for your viewing pleasure :)

On Safari
Dancing on her parallel bars
Molly and Daddy Together
Flying to the Moon
Driving Her Pink Car

A Long Drive to Montreal

We are here, but it was a long day of travel!  Molly was AMAZINGLY well behaved, but it was still a long trip.  

Molly was running up and down the halls after being cooped up in the car from 10:30 to 6:30.  She is in good spirits and we are hopeful that things will go well for us tomorrow.

We will be up early in the morning for a 7:30/8:00 appointment.  

We thought about leaving tomorrow night after our appointments, but have now realized that would be just too long of a day.  We'll head out on Wednesday and hopefully have a faster return to Maine.

Jim flies in on Thursday evening and we are very excited to see him again - this has been a VERY long time apart!!

My friend Bobbi and I had a great night to ourselves on Friday night and window shopped and went to a movie etc.  It was so nice to have almost 2 days of kid-free time!!  

While I was away my parents were taking care of Molly.  My Mom asked her if she would like to have fruit cocktail for dessert and Molly said "Mommy said I'm too young to have a cocktail" - too cute!!

It is late so I will try and update tomorrow night...

The Conference and Maine

We have been very busy and Molly is doing quite well.  We headed up to the conference on Jul 30th and found the lobby already full of "little people" with walkers and wheelchairs.  It was fun to feel like one of the crowd.  It was also overwhelming trying to keep Molly safe as she buzzed around in her walker among all of the wheelchairs (almost all of the teens and adults were in chairs).  

We met with Dr. Paul (a psychiatrist) and also Dr. Smith, an orthopedist from Chicago Shriners, on Thursday.  We learned some good tips about getting Molly to reach up for things to encourage a long and strong spine and were given some advice regarding the SMO braces she will get when we get back to NC.  SMO braces are orthotics that will give her ankles support and hopefully will help her to feel more stable and balanced on her feet.

It was wonderful to reconnect with families from the last conference and also to meet many new people.  People with OI often look somewhat a like and it was strange to see so many people that could have passed as Molly's sisters/brothers or cousins etc.  

My parents both came as well, which was great both for the support as well as to help absorb the vast amounts of information there is being presented at the conference.  We put Molly into childcare at the conference, which was a big first for us.  I was terrified to leave, but felt confident that the staff had all been trained by the OI Foundation.  She was in the under 3 room with 2 other kids and 3 adults!  It was a perfect first experience for all of us.

There was a couple there with their 5 month old daughter with OI and we all found ourselves showering them with advice and support.  It is so overwhelming in the beginning and I think all of the parents of "older" children feel a strong need to offer advice, since there isn't that much information out there and nobody knows all of the tricks and challenges better than another parent.  There was also a family from Saudi Arabia there with their 4 children.  Their 10 month old has OI and it was wonderful that they were able to come so far to attend the conference.

Dr. Esposito was there and it was wonderful to be able to show him how well Molly was doing and how FAST she is walking!  She was in the lobby showing him her "running" and tripped on one of the wheels of her walker and took her worst fall to date.  It was terrifying, but was able to get right back up and keep going - we were VERY lucky.  Of course when the surgeon is right there and she falls she is fine.... 

There was a dance on the last night of the conference and Molly had a ball out on the dance floor with all of the other kids.  She was shaking and kicking to the beat - very cute.  She picked out a couple of kids that she seemed to really take to quickly, which was wonderful.

Molly and I flew to Maine on Monday with my parents and, unfortunately, we have only seen the sun once since we arrived!!  It is supposed to be nice later this week and we are hoping to take Molly to the beach for the first time.  

We are heading to Montreal on Monday to go to the Shriner's hospital that has an OI clinic.  We are hoping to get some good information.  

Molly is scheduled to have her teeth capped in September and we are in the midst of battling with insurance to get the procedure covered.  The dental has now agreed to pay 25% of the dental fee, but our medical insurance has thus far denied our appeal for the anesthesia and hospital fees, which is very overwhelming.  I just hope it all works out in the end.

Molly is walking all over the place with her walker.  We built parallel bars (out of PVC pipe) and she is walking and swinging with those a lot as well.  Yesterday, she too one step from the ottoman to the couch without holding on, which was a first!!

OI Conference Photos

This is Alexia and Molly. Alexia is 6 and only learned to walk 2 years ago and is now tap dancing and walking independently!!

Here is Molly with her new purple walker (we had it painted at a bodyshop) with Christina, who lives in Charlotte, NC.  Molly's new trick is to swing like this with her walker :)
Here is Megan (5 with Type IV OI), Avery (6 with Type IV OI), Alexi (6 with Type III/IV OI), Molly, Hannah (5 with Type III severe OI), and Abby (18 months with Type III OI)
Here is Molly with Dr. Esposito showing off her fast walking skills.

The 2008 OI Conference in Washington DC is already over, and we have some of our pictures up online.

We met some great new people, and enjoyed seeing old friends again. Molly also had a great time making new friends. Several times she would stop and say "hey, that is my friend" while pointing across the room at one of her (many) new friends.

Here are the photos. I'll let Sarah fill in more of the details later.

http://picasaweb.google.com/jsulliv/OIConference2008

- Jim

Busy Busy Toddler

Molly is doing well and keeping us very busy. She is walking extremely well and I am now even "comfortable" letting her walk around the house (with her walker) while I'm in the laundry room - a huge step for us!!

She is definitely a 2 year old and is testing the limits sometimes every few minutes. She has found that hitting me gets my attention, so that tends to be the way that she chooses to act out. I tried doing time-out, but as soon as the time-out was over and I went to talk to her about why she was in time-out she would hit me again and ask for another time out. Clearly, this was not an effective punishment for her!! We have now started putting her toys in time-out for the day, which is working for the moment, but I think it is only a matter of time before she is no longer affected by this.

She is big into being a princess (Tinkerbell and Ariel are her favorite) and/or a ballerina and prefers to wear a tutu everyday. We have been on and off with the potty. She goes when I put her on, but right now she is fighting me when I try to put her on. She is also battling when I try and change her diaper, wash her face, brush her teeth, get her dressed, brush her hair.... you get the idea :).

She is getting more and more comfortable on her feet and is standing without support for 5-30 seconds. She is also starting to try and climb and reach up high for things, which is rather scary.

Big Milestones For Molly

Molly has been making some big advances in the past few days and we are so excited.  We have been working on trying to provide more opportunities for her to use her walker and that seems to have allowed her to build up her stamina quite significantly.  

We went to a  6 year old's birthday party in the neighborhood and they had a pony... I thought we would just have Molly pat or MAYBE sit on the pony, but in the end she not only sat on the pony, but rode it all around their yard.  It was wonderful.  She had a ball and it was great 

We went to our friends party yesterday for the 4th and they have a pool in their neighborhood.  Molly walked all the way there herself (maybe only 50 feet or so, but still).  We put her into a swim suit with flotation on it and within 10 minutes or so she was willing to "swim" by herself by doing a pedaling/walking motion with her legs.  We were so happy that she took to being independent so quickly.  I had tried it the day before and she cried and screamed each time I tried, but then after talked about how she had been swimming by herself.  On the 4th she started off a little unsure, but by the end told Jim not to get too close!  She was low enough in the water that it was regularly splashing her in the mouth, but she just spit the water out and kept at it.  We are hopeful that this will be the new norm.

While we were in the pool and Jim was holding her he said "I lost my balance" as he slipped and Molly said "we can find it, call for it", so the two of them walked around the pool calling "here balance".

Today we went to the mall and Molly walked all around a store and then insisted on walking to the elevator and then down 15 plus stores to get to the Disney store.  I was terrified because it was rather busy, but so excited about the rapid development of her sense of independence and her stamina.

On our way home we talked about Molly being a sister (NO we are not pregnant or trying) and at first she said no, but then said she would like to have a baby girl so that they could be friends - so sweet!

A Very Happy and Busy Girl

We have been busy, but doing well.  Molly is walking more and more and we are still working on finding her limits.  She starts out almost running with her walker and then slowly looses steam.  She is learning to listen to her body and tells us when she needs to take a little break.  She is extremely excited about walking and asks to walk most places we go.

We watched "Return to Neverland" this weekend, starring Tinkerbell, and Molly asked "can you get me some wings so I can fly....PLEASE mommy?"  Absolutely adorable :).

Howie, our black pug, had surgery on his leg a little over a week ago and had a pin put into his leg.  It was strange going to the vet to see X-Rays of our dog rather than Molly.  We just found out today that the surgery was not successful and he is going to need to have a second operation to try and fix his leg.  

We were planning on taking Molly to the beach last weekend, but a forecast of thunderstorms and high winds forced us to postpone our trip.  Molly hasn't been to the beach yet and I know she will have a ball!!

Molly has started introducing herself as Ariel (from the movie The Little Mermaid) and sometimes will correct you if you refer to her as Molly.  She seems to have become more than a little interested in princesses and tinkerbell.  

Here is a video of Molly walking at the library with her wings on :).  

Good, Great and a Little Bad

Molly is doing well and walking more than she ever has before.  We got an Exogen Bone Stimulator for her that we have started using to help heal her Tibias from her last surgery. The bone stimulator sends ultrasonic waves that some feel help with the healing of non-unions.

We had a long week last week and she finally got her Pamidronate on Saturday.  We were hoping that it would work a miracle and that Molly would stop being fussy.  She seems to be feeling better, but not 100%.  My Mom got into town on Friday and that has made a HUGE help to my mental health :).  

Molly's gums were bleeding last week when she was eating so we went to have a check up with her dentist.  Her teeth have worn down quite a bit and it is time to schedule her surgery.  This was news that Jim and I were not ready for and has been a bit challenging to digest.  We have scheduled the surgery for September 17th, but if there is a cancellation it could be a lot sooner.  It is hard to prepare for yet another surgery, especially at a different hospital where I am not as confident that the staff will know how to handle her.  I know I will be sure to educate the staff between now and then.

Molly has been walking for many minutes at a time and today for the first time walked down the ramp (our front stairs), down the driveway and was starting to walk down the street.  We need to be sure that we don't let her overdo it to quickly or she might be sore for quite some time.  We are still giving her Ibuprofen for pain to manage general pain as well as pain she is complaining of in her knees.

I have a lot more to update, but I am too tired to write anymore tonight...

Ups and Downs

I just finished writing a post about how Molly improved and an hour later she woke up crying.  I went up and she complained that she hurt her arm and was crying.  This was almost too much for me to handle.  I rocked her and she calmed down.  When I stood up to take her downstairs she whimpered and said her arm hurt.  I brought her down and she begged me not to put her down because it would hurt.  I have learned that it is easier to keep her comfortable when she is sitting on her own and so I put her on her "Elmo couch".  I told her I was going to get her medicine and asked her if it hurt a lot or a little and she cried and said a lot.  It was devastating to hear her in so much pain.  She kept her arm limp at her side.  I asked her to point to where it hurt, but she wasn't willing (or able) to.  

I assumed the fracture was at the same spot as the fracture 9 weeks ago and so I put the splint on the upper arm to see if that made her any more comfortable.  She didn't seem much better or worse with it on.  Our wonderful neighbor, Lori, came over to play with her and read books, which helped raise both our spirits and Molly seemed to be doing well.  We decided to go and have an X-Ray taken just to be sure things were OK, since there isn't a rod in the arm.

It has been a long and emotional week and I hope that Molly has a better week next week.

An amazing recovery

I took the splint off on Tuesday morning to check for sores.  She screamed and begged for me not to touch it, but once I got it off she said it felt better and she didn't want a wrap on it - I was not prepared for that.  We went to the orthopedists Tuesday and had x-rays taken.  It seemed that it was a minor fracture since she was comfortable without the wrap on, but she wasn't able to pinpoint where the fracture was so we wanted to make sure it wasn't in her pelvis and that her rods were OK.  Nothing showed up on the x-ray, which isn't a surprise, but is a good sign that it is only a crack and not a big fracture.  We came home and she started crawling!  She asked "Is this OK?" and when I told her she could do whatever she wanted since she would know what hurts and what doesn't.  Well, she stood right up after hearing this!  This is what Dr. Esposito predicted, but of course I thought he was being far to optimistic.  I'm glad he was right.

Certain movements and especially twisting still cause her pain and unfortunately I haven't been able to predict what will hurt and what won't.  We went to PT today and she walked around quite a bit with her walker for the first time since Sunday.  She wasn't quite as fluid as on Sunday, but seemed to being amazingly well.

We are very excited.  Sesame Street Live is coming to town and we just got tickets for Saturday.  I think Molly is going to have a ball!! 

Femur Fracture

Molly using her walker at a Hydroponic Farm in Cary:

Molly on her first ride-on toy, scaring Jim and I but having a ball :)

We have been having a wonderful week.  Molly stood on Monday for the first time since her surgery and immediately asked for her walker.  She walked all the way from the family room through the kitchen and into the playroom.  We had X-Rays taken on Tuesday and things looked good, so we were given the go-ahead to allow her to walk as long as it felt OK for her.  She has been walking really well and today at the pet store walked all around without any sign of the limp she had before the surgery.  We came home and she was playing at her plastic chairs and somehow she fell off the chair.  I was a foot away and when I bent down to pick her up she had one foot on the chair and the rest of her body on the floor.  The cry told us that she fractured, but we are still not 100% sure of the location of the fracture.  It seems it is in the left Femur (upper leg), but it is unclear whether the fracture is in the middle or higher up on the leg.  Our wonderful neighbor, Lori, came over to distract Molly and help us figure out where her leg hurt.  We made a splint out of fiberglass material we had in the house and it was a very traumatic experience for all.  She screamed in pain the whole time we were making it, but I knew she would hurt every time we had to move her if we didn't splint it.

The fracture happened around 1:00 and within a few hours she seemed a lot better.  She was afraid for me to pick her up for fear of it hurting, but with a lot of reassurance she let me pick her up and we went out to her power chair and went for a nice walk.  She didn't whimper when I picked her up, so I am hopeful that she is feeling better and that the splint is effectively bracing the fracture.

We emailed Dr. Esposito and have already heard back from him.  He thought that as long as she was comfortable it would be reasonable to wait and see and not go to the ER.  There is an after-hours urgent care place, but of course it is closed today and tomorrow.  Bummer.  Dr. Esposito said that most likely the rod would splint the fracture and that she would be feeling well enough to crawl in the next week or so, but we will have to wait and see.  There is a small chance that the rod could have bent because of the fracture, but as long as it is only minor the leg should heal and we won't have to rush back for another surgery - keep your fingers crossed. 

Jim and I are both feeling rather sad after having such a wonderful morning with her being so mobile and independent.  Molly has had to go a lot, but her spirits are very good and we are hoping she is able to get a good night's sleep despite the fracture.

Here are some videos of her doing well:

Molly chatting at the table

Cheering on Kimi (a Formula One racer)

"Tell me No" (like her favorite book "No David")

Almost "Hit The Roof"

Some New Photos...

Molly and I baked together for the first time.  We made banana bread and had a ball!

Molly was pretending she caught a bird and was offering it to Jim :)

Tripp got this shirt for Molly in Nicaragua (on the back it says para mi)

Molly's fried Livi came over to play and I braided her hair just like Molly's :)

Here is a video of Amanda (the 11 year old with OI) on the local news.  Don't worry, she is just acting and doesn't actually have an arm fracture :).

Lots to do, but doing well

I have had a hard time finding time to get on the computer, but things are going well.  There has been a lot going on and it feels a bit overwhelming at times, but thankfully Molly is doing well and seems to be feeling well.

Dr. Esposito wants us to wait another week or two before we encourage her to start standing.  She seems ready and is doing a lot of walking in the hot tub.  

We are waiting to hear from Montreal Shriner's regarding Molly's application.  You have to be apply and have your case presented to the medical board in order to be accepted for treatment there.  We had expected to hear by now, but are hopeful that we will be able to schedule an appointment soon.

We are getting ready to have a meeting with the school system about enrolling her in a preschool with a school provided aide.  She is eager to be in a school environment, but needs a 1:1 aide, for obvious reasons.  I am nervous that this is going to be a long battle, but I hope to be surprised.  I am trying to research what is required in order for her to be eligible.  From what I have read thus far she should definitely be eligible and most of the other families I know of with kids with OI have had their children in public preschool with an aide - so keep your fingers crossed!!

We are also in the last stages of researching a lift for the van so that we can take her power chair with us outside of the neighborhood.   We have searched for resources to help pay for the lift, but thus far have not found any.  There is a $1,000 rebate for vehicles less than 6 months old, so we will at least have that money coming back to us, thanks to the warranty replacement of our Honda van.  

We are also beginning the process of applying to our medical insurance to get Molly's teeth capped.  Her teeth are wearing down fairly quickly and the dentist thinks it will be appropriate to cap them (an 8 hour surgery) in another 6 months or so.  Now, we have to battle with insurance to get it covered.

Molly is entertaining us by the minute with her sense of humor and sharp wit!  When I spell something for Jim,  Molly will ask "what did Mommy spell" which makes us all smile.  She is playing hide and seek a lot and is now hiding a toy in her hands, or her hands in a book and asks us to find it with a huge grin on her face.  She will say that "Daddy is such a good boy, I love him" and the same to me :).    She is also really enjoying pretending to be a princess and tells me I am the King.  We go "shopping" while in the hot tub and pick out imaginary crowns and magic wands (hers is of course Purple).  When I tell her she can't do something she will ask "why" and then say "talk to me" (which means explain it to me).

Livi came over for lunch today and the two of them were adorable playing together.  They really just love being together and it is adorable to watch.  Molly has a lot of work left to do as far as sharing goes, but she has gotten a lot better.

She has started asking us to tell her No and she laughs and goes on to the next thing and tells us to "tell me no" again and again.  At bedtime she told us to "tell me no napping" and we all laughed a told her, no we won't tell you no napping, it's bedtime.  Jim started carrying her up the stairs and our clever daughter said "tell me no going upstairs" she is very crafty!

Here are some videos:

Molly singing

Molly up past her bedtime

Diaper "bracelets"

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