Our amazing little girl

We spent last week in Montreal at the Shriners Hospital and are so happy to have it behind us! We flew into NH and drove 5 hours up to Montreal for a door-to-door travel time of 12 hours - yuck.  Molly was such an amazing traveler and didn't complain once.  We are so lucky.

We did make one fun stop on our drive from NH to Montreal in Burlington.  We found a wheelchair accessible treehouse to stop and play at for a little while, which was very cool.  It was nice to have a fun pit stop and move around for a little while.

On Tuesday we arrived at 7:30 and had a Dexa scan along with some blood tests and then she got a Zolendronate infusion (to help lessen fractures and bone pain). We found out that her Z score (a bone density measure) is -1.6, which is at the very low end of normal and an increase from -1.8 last year. Always good to hear improvements. We got to leave early and went to the Biodome, which was wonderful.

On Wednesday we had our first appointment at 10:30 at the Montreal Children's hospital to have a Pulmonary Function Test done, which measures lung function and capacity I think.  As we tried to check it we were notified that we were responsible for the bill and would have to pay out of pocket for the tests. We decided to wait and have the tests done back in the States to ensure that we would get some insurance reimbursement.  We had an appointment after lunch with Dr. Ouellet, a pediatric orthopedist specializing in the spine.  We had taken a spinal x-ray on Tuesday, which he pulled up and was scary to look at.  Her spine is starting to curve and has an "s" shape to it - scoliosis.  He then used tools to measure the angle of the curvature and found it was around 35 degrees. Not good.  He felt that the xray was not an accurate representation and suggested that we go and get an xray of her spine with her standing.  An hour or so later we got to meet with him again and review these new xrays.  The new xray was better, but not great either.  He measured the curvature to be around 30 degrees in this new film.  He informed us that between 40 and 50 degrees they start talking about surgery, something we are hoping to put off for as long as possible.  I asked about bracing and he felt that a night-time brace, called a Providence Brace, would be appropriate and hoped that it would help to keep her scoliosis from progressing further, or at least slow it down.  We also talked about her Lordosis (the way that her spine looks in profile - her bottom sticks way out and there is a curve as a result).  He said that some lordosis is necessary with many kids with OI because they are top heavy and if they don't have a little lordosis they would fall over, but he also felt that doing some stretching and strengthening exercises would help to improve her posture and lessen how severe it is.

The next step was to have her casted (with plaster) to make a mold of her torso to send off to have the Providence Brace made.  This was a very traumatic process, but also fairly quick.  They draped wet strips of plaster on her stomach and then we rolled her to her stomach to do the same on her back.  As she was lying on her stomach the plaster began to "fire" as it hardened and this became increasingly uncomfortable for Molly.  She is not one to cry and she was crying and begging for it to be over.  So hard as a parent to see your child in pain and have nothing to do to help.  I wish we didn't have so much experience with this.  Thankfully it was off within 5-10 minutes of the pain.  Her stomach was bright red and hot, but thankfully with some cool wash cloths the pain and heat went away fairly quickly.  They explained that the Providence Brace puts pressure on the spine to move in the opposite direction of the curve, so if it is curving to the left the brace will be pushing to the right and then 2-3 inches up if it is curving to the right the brace will be pushing to the left, etc.  The casting has to be sent off to a place in Massachusetts, which takes about 2 weeks to get back.  The problem is if we want to use the casting they made we have to go back to Montreal to have it fitted, ugh.  I got to spend this week calling around and researching our local options and am thankful that we found a place that does them - hooray.

We also got to see OT and PT on Wednesday and both went really well.  We met with OT to discuss her daily living independence (dressing, brushing, bathing, etc.).  Last year she was way behind where they expected her to be with her independence, which was mostly due to me doing to much for her - I guess one of the down sides of being an only child.  I was so happy that this year she was right where she should be or better - hooray.  Molly has really been pushing in the past few months to do more and more for herself and there is so much she can do for herself, especially when we are at home.

We met with PT at the end of the day to discuss stretching and strengthening exercises to help with her lordosis.  Her hip flexors are very tight, I think they connect at the top of the femur and run up and connect on the pelvis near where the pelvic bone protrudes.  She showed us a stretch that we are supposed to do on each side two times per side once a day.  We were good the first couple of days home, but still need to build this into our routine.  She also gave us a couple of abdominal strengthening exercises.  One is a kind of bicycle pedaling she does while lying on her back - being sure that she has tilted her pelvis to engage the abdominal muscles.  The last exercise is one she does on her hands and knees lifting one leg at a time either straight out in line with her spine, or if she bends the knee pushing her heel up to the ceiling.  Lots to work on, but not all of it has to be done everyday :)

We drove back to NH on Thursday and got up at 4:30 Friday morning for our 6:00 flight :).  So glad we went and had her check up, but also very glad to have it behind us.

Celebrate Good Times!

We have A LOT to celebrate at the moment.

The biggest Sullivan news can be watched here.

Exciting item number two - we have ordered a swim spa!!  Thanks to some WONDERFUL and GENEROUS family and friends we will have a pool for Molly at our house in less than 2 months!!!  YAHOO!!  Thank you all so much for helping contribute and support this important project for Molly.  It is going to be life changing for her!!

We are also celebrating and appreciating that Molly is feeling and doing well.  We are headed to Montreal  soon to go to the Shriner's Hospital for her annual clinic visit and before that I wanted to be sure to celebrate how well she is doing regardless of what her xrays and exams might show.

Molly is amazing us at the moment and is walking all the way to school.  This is almost 1/2 mile walk and many days she is walking both ways.  Amazing.  We weren't sure Molly would ever stand, let alone ever take steps, so for us this is a remarkable achievement.  But more than her actual walking is the fact that her body feels good enough to do it!  The more she does the stronger her muscles become and the stronger her muscles the stronger her bones can be.  She will continue to break, but having strong muscles will help her to recover a lot faster.  Having a pool in our backyard will help this process tremendously as well!!

Hope to be able to post more happy news in the coming days and weeks.

Now She is 6!!!

Molly is doing well at the moment.  At my last post she had fallen at school and broken her femur.  She ended up bending the rod.  There are no plans to do anything at the moment.  Dr. Esposito said that kids often do fine for a while with a bent rod.  It does mean it will probably not telescope (grow) anymore, which will mean we will want to replace it in the next year or so.  I am happy it wasn't anything that needed to be taken care of right away.  She is back to walking, but just short distances, and is our happy girl again.  She was having a lot of fatigue and chronic pain and it lasted longer than the time it should have taken for her arm and leg to heal.  We finally realized that she was needing her infusion medication a month earlier than we had expected.  It had been almost 5 months since her last infusion.  She has switched from Pamidronate to Zolendronate (or Zolendronic Acid) over the summer and it is supposed to be given every 6 months, but 5 months seems better for Molly.  We had a great Christmas and she came back to school after the holidays feeling so much better and has been able to go for the whole day again.

Molly had her birthday on January 13th and had a wonderful party with friends.  She planned most of it herself :).  The girls decorated heart-shaped glass vases with paint pens and then selected fake flowers for their own bouquet.  The girls had a blast and the vases were adorable.

Molly has started reading the "Bob Books" (early reader book series) and is so proud of herself (as are we).  This has been such a fun year to watch her grow.  She is writing more and more, started reading, and really is just absorbing everything they are exposing her to at school.  She has made some great new friends in her class and looks forward to school everyday.

We are still working on finding a way to get a pool in our backyard for Molly.  We have been given some generous donations and are almost halfway to our goal.  We have contacted Make A Wish and are hoping that with the donations we have received and their help that we will be able to make her dream a reality.  Fingers crossed :)

More updates soon I hope.

Ups and Downs

Molly has been doing well and slowly recovering.  She has been going to school for a few hours each day.  She was at school today and fell on her way to the bathroom.  It seems she has broken her femur.  More later, just trying to stay afloat at the moment.

In Surgery (Left Arm) in Omaha

Molly has been doing amazingly well.  She has been walking a lot and even walked the 1/3 mile home from school last week.  We were home Friday night and she fell and broke her left humerus (upper arm).  It is a complete break and very painful.  We went to urgent care that night for X-rays and a new splint.  Dr. Esposito spoke with us on Sunday and was able to fit us in his schedule for today.

She is now back in surgery getting a rod into her arm and repositioning one of her femur rods that was starting to migrate up into her buttock.  We are hoping this will be a fast surgery and we should be able to see her in another hour or two.  The plan is to stay the night at the hospital and then go back to the Rainbow House (like Ronald McDonald house) tomorrow night.  We will be flying home on Saturday, which I think will make this our fastest turn-around to date.

If you want to send her something she LOVES getting pictures.  If you see something she might like and take a picture and email it she would love it.  She would also LOVE a picture that you or one of your kids draw.  Either would be a wonderful distraction.  Thanks in advance.

We will keep you posted.

UPDATE:  Molly is out of surgery and in the recovery room.  Everything went as planned, and we are just waiting to go up and see her now.

Update:  We are now up in a room and Molly has been napping on and off this afternoon.  She is hurting a little and tired, but doing amazingly well under the circumstances.  She had some soup and a popsicle, which is a good sign.  So much better than recovery from leg surgeries in the past.

Update: Molly has been eating, talking, standing a little bit (to and from the bathroom) and even went to the playroom this afternoon.  She has been drawing up a storm and doing some amazing pictures (will try to post later).  So happy she is doing so well.  She has been napping off and is resting peacefully right now :).  Thanks to all that sent messages, videos and pictures.  It really helps to have some messages from outside our "hospital bubble" to remember people and life outside of the hospital room.  We should be out of the hospital before lunch given how well she is doing now :)  Here's hoping we all get some rest tonight.

Such a Fun Age

Molly has grown so much in just the few weeks since school started.  It is clear that she is feeling like a "big kid" and just beaming with joy.  This is such a fun time in our lives.  We have been walking to school and Molly drives her power chair, which has been great for her sense of independence.  There is another girl from her class that we often walk with and the two girls cannot stop chatting and smiling.  They are both "girly girls", so a lot of the discussion is about what they are wearing and how their hair looks etc.  It is so wonderful to see her "walking" side by side with a classmate to school.  I had hoped this would happen at some point, but am so excited it has happened so quickly.

Molly has been asking a bit more about why her bones break easily and why her bones are different.  We have had brief discussions about this off and on, but I think came to a better understanding together this week.  She said that her bones were "bad bones" and should be in "time out".  She asked, "that's alright isn't it?  Bones don't have feelings do they?"  We talked about how it wasn't anyone's fault when one of her bones break and that was just how they were made.  I am still trying to figure out exactly how to help her to understand her condition and feel good about herself.  We talked about how there are lots of times when her bones don't break, so in some ways they are "good bones".  There are some people with Brittle Bones that can run and jump and some kids with brittle bones that cannot stand.  She is lucky for all that she is able to do and that there are many whose bones don't allow them to do all the fun things she can do.  I don't know if this was helpful to her, but it gave me a new perspective and appreciation.

I will work on writing this more clearly and concisely later... off to train Flash :)

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

It has been a long year, but I am going to make an effort to get back into posting more frequently.... time will tell :)

Rather than play catch-up I am going to update about the here and now.  Molly started Kindergarten a little over a week ago and is having a fabulous time!!  We couldn't be happier.  We were all quite nervous about it, but from the first day it has been wonderful.  We are so lucky.  We moved from Cary to Raleigh 2 years ago so that Molly could continue going to the school she was at for preschool (and to get a ranch for accessibility) and it is now so clear that that was a great decision.  One of Molly's preschool teacher's from two years ago was hired as a kindergarten teacher this year and we were lucky enough to get her!  They also placed another preschool teacher from 2 years ago in the classroom as the teacher's assistant.  This set us up for a great beginning.

Molly was so nervous on the first day and after meeting some friends and all of the preparation that the staff did it was a great first day.  Since then she is so excited to go everyday and also excited to tell us all about her day (something she refused to do when at preschool).  She is feeling so good about herself and having tons of fun!!

It is wonderful to have great things to report.

We are starting to work on fundraising for a pool for Molly in our backyard so that she can get exercise everyday.  We have been thinking about it and planning for it off and on for months and sat down this weekend to "make a sketch".  Jim and I are both engineers and began drawing an architectural style picture of what the backyard would look like and wanted Molly to help... after a few minutes of this, Jim realized we were way over Molly's head and suggested she just draw a picture of what it should look like (duh!.. only engineers would start an architectural drawing with their 5 year old :).  She drew a pool that was perpendicular to the house.  All of our sketches had the pool parallel to the house and didn't quite seem to work... So Molly has come up with a perfect plan for how to make it work :).  She is so excited!!!

This morning I wrote down all of my to do items for the week on a white board in the living room.  I went out to train Flash (Molly's Service Dog in Training) and came back in to hear Molly announce she was "writing real words"... "I hope that is OK"... I walk in to find she has been "reading" my to do list and rewriting each word on the opposite side of the board and then erasing each item.  Adorable :).

More posts to come soon I hope.  Off to fold 6 loads and counting of laundry (really).