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.
Wednesday, June 20, 2012
Sunday, May 20, 2012
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.
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.
Saturday, May 05, 2012
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.
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.
Monday, February 06, 2012
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.
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.
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