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.

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.