Surgery is underway

Sarah just called me to say that they have rolled Molly back for Surgery.

Dr E will be adding a wire wrap on the upper right femur to add support. In addition, he will be doing a fluoroscope of the  left leg to make sure everything is in the correct place from the big surgery in January.

[Update: 2:25pm EST] Left leg looks fine.  Going ahead on surgery on right leg now.  This should be a more minor surgery than some of our previous big ones.

[Update: 3:45pm EST] Sarah called with an update that the surgery is almost finished.  Things going well so far.

[Update: 4:15pm EST] Sarah just talked to Dr. E.  The surgery went well, and he thinks the recovery should go well too.

The left femur rod is almost backed all the way out, but he didn't want to go in and mess with it right now.  He thought it was in far enough to leave it so she can have the easier recovery.  The right femur was slightly different than he had faced before, with the current femur rod being in slightly different place than he is used to.

In Omaha for Surgery tomorrow

We had a very uneventful travel day yesterday to Omaha :)

We got in around 3 and spent an hour at the Children's museum before checking in at the Rainbow House.  It was nice to find a way to enjoy part of our trip for another surgery so close to the last.

Jim and Paul have stayed in North Carolina this time.  It was hard to leave Paul for the first time, but it would have been too complicated to have him here.

Molly is scheduled for surgery tomorrow afternoon to have her right femoral neck wrapped in wire to support a fracture she has there (it is above where her rod is) to prevent a nasty fracture from occurring.

We will keep people posted here on the blog as things progress.  Dr. Esposito doesn't expect this time to be as painful as the last surgery and we are keeping our fingers crossed that will be the case.

On a happy note.  Today was a beautiful sunny day and we spent almost the whole day at the Omaha Zoo.  We had a wonderful visit and even got a behind-the-scenes visit with a tiger (4" away)!!  Molly was in heaven.  She has a real passion for animals and especially for tigers, so to get a tour with one of the trainers was a very special experience.

Post I typed up in January and never managed to finish:

We have been "snowed in" all week here in Raleigh.  They cancelled school (not that Molly has been going) from Tuesday- Friday.  We got 2-3" on Tuesday night.  It was a beautiful white wonderland on Wednesday.

Molly was excited to get out and play in the snow on Wednesday morning.  It was hard to figure out how to best let her enjoy the snow.  She tried her best to psych herself up that laying in a sled running her hands through the snow was fun, but I could tell it was one of those times that she wished things were different.  I am thankful that those moments are few and far between, but as a parent it is hard to watch knowing that there is nothing that we can do to make it easier/better.  She takes challenges one at a time and is usually able to overcome the frustration.

I know that the combination of recovering from surgery (with almost no physical independence at the moment) coupled with the reality of what her peers were doing at the same moment was a lot to accept.

We did find a sled that worked with her splint and she decided the experience was worth the pain that would come later in the day from pushing her body beyond its limits (given her recent surgery).  The four of us got to take a walk down the street and enjoy the snow covered trees and white all around us.

Since that morning she has had quite a bit of pain and has not been up to leaving the house at all.  Needless to say we have all been suffering from cabin-fever.

It is so hard to see her in so much pain and not know how to make it better.  I was really hoping that by this point in her recovery that she would be feeling a lot better than she is.

Healing like a champ!

Molly is such a trooper.  She turned the corner earlier this week and has only improved from there.  She has had a few good nights of sleep and is in very good spirits.

I was all ready to send her to school on Monday for a few hours - until I was reminded that it was Martin Luther King, Jr. Day and we don't have school on Tuesday either.  Not quite on top of things at the moment :)

She has had a few friends stop by for a visit and that has really boosted her spirits!  I know she will be exhausted getting back into the swing of things at school, but I know it will be a good thing.

Home Again, Home Again, Jiggety Jig :)

We made it home!!  We had an extremely long travel day yesterday and are just so grateful to be home.  We boarded a plane yesterday morning in Omaha and sat at the gate for an hour before they finally cancelled the flight due to mechanical problems.  We scrambled to find another flight home and thankfully found one through Chicago.  Poor Molly is still in so much pain from her surgery and the travel really didn't help things.  We had a 5 hour lay-over in Chicago and touched down here in Raleigh around 11:30 pm.   We were in the car driving home when the clock struck midnight and we sang her "happy birthday". Such a strange night.  Paul was wide awake and was playing with his toys at 1:00 am this morning before we got him down for bed.

Today is Molly's birthday!!!  We did our very best to make it a good day for her.  She has tried her very best to keep her spirits up, but it has been hard at times.  She is understandably frustrated by her lack of independence and it is hard missing out on school.  It was heart-breaking to hear her mourn the fact that her friends were all running and playing and she was hurting and not able to do anything.

She has some wonderful friends that stopped by for a visit and really raised her spirits and helped for a little while.  Thanks to the world of technology she was also able to FaceTime with her class today, which she LOVED!!!  It is so hard seeing her go through so much in the hospital and then to see the emotional toll can be agonizing.

I know that in a few short months this will all be a distant memory, but at the moment we are exhausted and looking forward to getting her past this rough patch.

HOORAY!! Getting discharged :)

We just got the good news that Molly's numbers were up (now 8.4) so we have been given the go-ahead for discharge :)

Going to sign off now and get this room packed up.  It's amazing how much stuff/mess we accumulate in just a few days here.

So happy Molly will be back in NC for her birthday :)

Post-op updates

Molly was feeling well enough to drink last night [10 pm] and suddenly was hit with nausea.  She then proceed to projectile vomit across the room.  Poor cutie.  We got back on top of her anti-nausea medications and haven't had a repeat episode, but she hasn't been feeling up to eating or drinking at the moment.

She had a rough time sleeping last night, but got little cat naps from 4-8 am.  It is hard to sleep when the nurses are coming in every 30-45 minutes to check on things or administer medications.  This is always a tough day in the recovery process, but it is going better than I expected.

Thank you all for your continued messages of support.  It means a lot to all of us.

[3:00 pm] Molly is doing quite well under the circumstances.  They have been on top of the nausea and she has even eaten a little (fruit loops seem to have been a favorite today :).  Her pain is fairly well managed at the moment.  She is resting at the moment, which is a great sign that her pain is under control.  We are so fortunate to be in such a great place for OI care.  The orthopedic and anesthesia teams have really got a handle on what works.  Tomorrow will be tough as she will probably need to move a bit more, but she is doing so much better than we imagined given all that she has been through in the past 24 hours.

1/9/14

[8:00 am] Molly did not get a lot of rest last night, but she does seem to be improving.  She was able to sit up for a little while, which she was very proud of!  Hooray for small victories.  Her pain seems to be under control at the moment.  Dr. Esposito came in this morning and gave her the go-ahead to open up her splints, which she was very happy about.  She said "thank you Dr. Esposito" about a dozen times :).  Poor thing was so hot in the splints and I didn't know it was OK to open them up.

Today will be a big day.  They will be removing the foley catheter and switching from IV pain medication over to oral meds.  Once that is all accomplished they want us to get her in her wheelchair for a little while.  There will be a lot of anxiety around that, but she usually does ok after the initial transition.

[7:45 pm] Molly really turned the corner this afternoon.  She did really well with her first transition to her wheelchair.  We took a lap around the floor and she spent a few minutes drawing with Jim in the playroom.  After a successful transfer and talking with the anesthesia/pain management team we stopped the IV meds (dilaudid) and switched to oral medication.  This allowed her to get all of her tubes and catheter removed.  She was elated after that!  She was singing "I'm free! This is the best day ever...." over and over.  So nice to see her happy again.  We got to go for a wagon ride down to the lobby, which is always a highlight.

She was in good spirits after that and ate more than she has so far.  She is still having pain and we are working on keeping it under control with several medicines.  She has her arm out of the splint at the moment and seems comfortable as long as it isn't being moved.

I have been trying to type this update up, but Molly is needing a lot so I will have to update later.  Sorry for any typos above... not time to proofread at the moment.

[8:30] Just got a call from Dr. Esposito... Molly was having some dizziness today, so they checked her blood earlier today and her hemoglobin and hermatocrit are low.  They gave her one unit of blood during surgery, but given her low numbers and dizziness they have decided another unit of blood would be best.  They will be infusing tonight and hopefully she will feel better.

She did not sleep much at all last night and didn't sleep today either.  I don't know if getting blood will help, but I am hoping it will.

Molly is starting to get anxious about the transfusion (this is her first while awake).  I will keep you all posted.  Please keep her in your thoughts.

1/10/14
They gave Molly 1/2 unit of blood around 11:30 last night.  It was a little strange having tubing full of red blood going into her port-a-cath, but thankfully it was very uneventful.  It made her understandably a little nervous, but once it started she was fine.

She and I finally both got a bit of sleep :) from 12-7 or so.

We are waiting to see Dr. Esposito to find out what the plan for today will be.  I thought that we might get to go to the Rainbow House today (like a Ronald McDonald House), but we will have to see how her levels look etc.

One cute story: last night when she took her wagon ride down to the lobby she got to get a stuffed animal (one of her favorite parts of recovery).  She was thrilled, but when we got up to the room she found a large whole in the belly of the dog.  She started talking about her grandmother fixing it when we got home, but then wanted it fixed more quickly.  She asked if maybe Dr. Esposito could fix it for her.  I mentioned it to him when he called last night to discuss the transfusion and it gave him a big smile :)

I will try to update again soon, but it has been hard to find a few minutes.... Thank you all for your continued support.  She has been loving the videos and stories - keep them coming :)

[2:15 pm] Molly's hemoglobin and hermatocrit numbers have gone up, but are still quite low.  Her hemoglobin is at 7.4 (up from 6.4 yesterday).  It was 10+ just after surgery, so they are obviously looking for the numbers to go up some more and make sure she isn't bleeding somewhere.  Fingers crossed.  They are going to give her the other 1/2 unit of blood in the next few hours and then recheck things.

She is doing well with her transfers.  She does seem to be a bit sleepy, which is most likely because of the blood issues.  Her spirits have been up and down depending on the moment, but she has generally been able to be distracted into a happy state :)

[8:30 pm] Molly did very well with her transfusion.  She is looking a bit more pink, which makes me realize how pale she was.  She has been eating well and sitting up a lot today (even sitting herself up).  What an amazing little kiddo!  They will draw blood in the morning to see what her numbers are at.  Fingers crossed for a big increase :)

Her left femur is very swollen (like 30%).  I had them contact Dr. Esposito to be sure that was to be expected.  He informed them that they broke the femur in 4 places, so the swelling was to be expected.  Wow.  Just hearing 4 places is overwhelming.

She is doing a lot better tonight and I am hopeful that this is a sign of the beginning of the healing process.  Fingers crossed!

1/11/14
Molly was up until about 12 with pain, but finally got comfortable and got some rest.  Apparently she and I both slept through a visit from Dr. Esposito.  Hopefully he will be back sometime today.  They drew blood this morning and her hemoglobin is up to 7.9.  An improvement, but not a huge one.  I will wait to hear what he says, but it sounds like we may need to change our flights that were scheduled for tomorrow.  That means we may be here or flying on her birthday.  Here's hoping we can make it a good day if that happens.

[9:00] We just saw Dr. Esposito.  They will draw blood this afternoon around 3 or 4 to see what her numbers are.  If they are the same then we are OK.  If they are lower, then she will have to go back into the OR so he can find the source of the bleed and take care of it.  He is assuming it is in the femur area due to what he did there and the swelling and bruising she has there.  I am calling the airline now to find out how late we can change our flights.

[12:00] We will know more about the plan around 5 or 6 pm.  Molly is trying to keep herself busy and distracted cutting up flower petals for a fairyhouse.  It is mostly working, but she is understandably bummed she is still in the hospital and that there is a chance we will still be in Omaha, or will be spending the day flying, on Monday (her birthday).  Hoping for the best outcome.

[4:00]  They drew blood for a new labs...waiting for results.

On the Road to Recovery

We are in the recovery room, starting the healing process.  There were a few rough moments last night, but overall things are looking good.

Pain is mostly under control while she is not moving.  We are moving her from her back to her side from time to time to avoid pressure sores.  She is hurting during those moves, so we are trying to time pain meds to make it as painless as possible.

Sarah and Molly stayed together in the hospital, while I (Jim) and Paul stayed at the Rainbow house.  After a marathon 2 hour session, I finally got Paul to sleep at 10:30pm.  Then, to our surprise, I got a call at 1:45am that they were here with our luggage!  Thankfully Paul fell back asleep relatively quickly.

I'm in the room with Molly now, and she just wants some time to herself to relax.

Ready for Surgery

We are now in what Molly used to call the "boring room" getting ready for surgery.

The schedule is running behind, but she should go in sometime in the next hour.

We are expecting it to be a 6 hour surgery, and then another hour until we see her again.

We'll be updating this post with new news as we get it.

[10:30 central time]  Molly is back for surgery.  We will be doing a new rod in her left tibia, left femur, and left humerus.  (all of her left leg, and upper arm)  He will also correct the coxa vara on the left femur.

[Noon central time]  We just got an update.  Surgery officially got under way around 11.  They are still working on the right femur right now.  Everything is still going as planned.

[1:30pm central time] The femur is now finished.  Moving on to the tibia now.  They will be checking back in after another hour.  Everything is going well so far.

[3:30pm central time]  We just talked to Dr Esposito.  The left leg is finished.  She is running a bit of a temperature, so we're going to wait and see if she cools down before taking on the left arm.  We told Dr. E to just make the judgement call based on how things look.

[4:00pm central time]  Just got another update.  We are going to go ahead and do the Left arm (humerus).  The surgery should be finished in an hour or so.

[5:15pm central time]. The surgery is finished! We just talked to Dr E, and he thought everything went well.  Molly is still sleeping.we should be able to see her in about an hour.

And in other news, the airline has found our 2 bags, and one of the car seats.

Now we're just hoping for as pain free a night is possible.

[8:20 pm central time] We are up in a room.  Molly is doing well.  She is having some pain, but it is being fairly well managed at the moment.  She is resting right now, which is a great sign.  Fingers crossed things continue in the right direction.  Thanks to you all for your messages of support and concern.

We are (finally) here

After a very long travel day, we finally made it to Omaha.

Our flight through Chicago was cancelled.
They sent us on a last minute flight to St. Louis.
That flight got stuck in Nashville.
They moved us to another plane, and then as soon as we sat down, that flight was cancelled.
We picked a flight to Kansas City the next day as our best bet of getting to Omaha.

Then, on the way to the hotel for the night in Nashville, about to give up, we found out that the snow was going to hit Nashville bad as well.

So back to the airport we went!  In the end, Southwest cut out the St. Louis leg of the Omaha flight, and did a direct flight to Omaha.

Unfortunately, 2 days later, our checked luggage is nowhere to be found.

Heading back to Omaha again

We had a great summer, and we should have done a better job updating the blog with good news along the way.

So to make up for that, here are a few pictures from Molly having fun this summer.

Unfortunately, we are now getting ready to head back to Omaha for another surgery.  Molly's left femur has something called coxa vara, where the angle of the femur at the hip has changed.  The pain has started to be common enough for Molly that she is looking forward to the surgery to help make things better.

While we are there, we may also replace a rod in her left tibia that is leaving a lot of bone unprotected:

We will be updating the blog with progress next week.  (seems to be much better than us e-mailing everyone)

We are free!! :)

Molly got some good sleep last night and we checked out of the hospital just after lunch. The epidural cane out yesterday and her pain has been well managed, which was a huge relief.

The transfer to the car was painful, but hopefully we will get a system figured out to make it better.

Thank you all so much for your messages if support, silly stories, and jokes. She loved them and told several to her surgeon this morning. :)

Recovery going well

Molly is feeling more like herself today.  We went out to tour the hospital for a while, and even briefly went outside for some fresh air.

Last night Molly went down to the gift shop and picked out a new stuffed animal.  She then painted a couple pictures and wrote a story about her new cat named Limes.

Surgery recovery

A few minutes ago, Molly asked me if I had updated everyone on her recovery accomplishments.  :)

Last night, Molly started sitting up in bed on her own.  This morning, she was able to go down to the lobby in a wagon for the first time.  While she was out in the wagon, she got to see several dogs that were visiting our floor.  Molly loved the painted nails on this dachshund named Roxy, pictured above.  (Sarah and Molly remembered her from a previous hospital trip)

Eventually, the pain got to be too much for Molly while we were out of the bed, so we rushed her back for some more pain meds.  She is comfortable in bed watching a movie now.

Molly has continued to charm everyone here with her nice manners, and sweet personality.  (and her 6 month old brother Paul flirts with all the nurses every time he goes in the elevator)

Doing Better Than Expected

We are all happy to have the first night after surgery behind us.  Molly's epidural has been doing a very good job of managing her pain.  She is still having some pain at her neck from where the port was placed, but the pain management this time around has been quite good.  Unfortunately she had some nausea and vomiting yesterday, which made for a fairly restless night.  We are feeling so thankful that her pain is being so well managed for the moment.  She will hopefully have the epidural in until sometime tomorrow, unless it stops working, so we will keep our fingers crossed that the next 24 hours look similar to last night (minus the nausea).

She ate a little something this morning, which is a very good sign.  I am really hoping she will get some rest today.

She has loved the stories that people have sent in about naughty/silly things people have done or their kids have done - keep them coming :).

She is impressing the staff here with her positive attitude and has been told how brave she is on many occasions :).

More updates to come...

Surgery day is here

It has been too long since we have updated the blog.

Molly headed back for Surgery this morning at 9:15am central time.

She is going to get a new port-a-cath, followed by a new rod in her Right femur.

Depending on how that goes, he will then move along to the right tibia.  And then depending again, he will consider the left femur and left tibia.

I will post updates on the blog as we get them.

Update #1 (9:50am central) : Nurse just gave us an update that the port surgery is underway.  The Dr will come out to give us an update when he is finished.  Should take just under an hour.

Update #2 (10:43am central) : Doctor just stopped by.  Port surgery is now finished.  The new port was put in at the same place as the previous one.  Seems like all went well.  Prep is now starting for the leg surgeries.

Update #3 (11:15pm central) Leg surgery is underway.  All going well for now.  The Epidural seemed to go in well, so we are hoping it will give us good pain coverage.

Update #4 (12:04pm central) Right femur is finished, moving on to right femur now.  All going well so far.  This right femur was one of the ones that we didn't know what to expect, as the old rod had migrated a bit out of position.

Update #5 (12:54 central) The rod is out of the right tibia.  He is now working on putting in the new rod.

Update #6 (1:15 central) Dr. E came out to talk to us.  The right leg is now finished, everything went well.  We had a relatively long discussion to discuss whether we should do the left leg or not.  Blood loss has been good, so Dr. E is just trying to decide if the current state on the left side is good enough, or if we should do some more.  I got the impression that he will fix the left femur that just fractured last Saturday, and leave the left tibia alone.

Update #7 (2:15 pm central)  Work on the left femur is still going, doing well.

Update #8 (2:40pm central) Paul and Sarah are both sleeping.  Glad they can get some rest now before things are crazy later.

Update #9 (2:45pm central) Surgery is complete!  All went well, they are wrapping things up now.  We are not going to do the left tibia this time around.  In the end we have a new port, new rods in both femurs, and a new rod in the right tibia.  Dr. E will be out to talk to us once he is cleaned up.  We should get to see Molly in about 1.5 hours.

Update #10 (3:10pm central) Just finished talking to Dr. E.  It sounds like the surgery went really well.  There was minimal blood loss during the surgery.  He didn't have to do osteotomy on either of the Femurs, so he expects the recovery to go well.  So well, that he don't think we'll need any splints for the femurs.  The right tibia will probably hurt the most, but it sounds like we should have a pretty good recovery, considering how much was done.

Sarah request: Molly would love to hear any jokes, stories (especially about silly/naughty things you or your kids did when they were little), photos, pictures you draw etc.

Last day of school

I haven't been good about uploading pictures and video recently.  Molly has been doing really well recently, walking a lot of the time.  Here is a video and some pictures from her last day of school a couple weeks ago.  

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.