Molly got up and was crawling around the living room and suddenly started crying. She cried hard for a few minutes and then seemed to settle down. She has not been crawling since and has immobilized her right leg. I am assuming that this is a Tibia fracture based on the fact that she has gotten comfortable so fast, but it is hard to know.
Dr. Esposito, the Orthopaedic surgeon in Omaha, told us that often kids will have small fractures before a really big one. I am terrified that she is at risk for a big fracture now after this smaller one. I will be doing everything in my power to avoid that between now and her surgery.
She is continuing to be happy for the most part. She has cried out a few times when she has done something that hurt her leg, but has recovered quickly.
She also started to make a sound for barking and says something that sounds a little big like woof woof very quickly - adorable :)
We will keep you posted, but things should improve from here as far as her leg is concerned.
Friday, March 30, 2007
Tuesday, March 27, 2007
A New Surgery Date
Molly is getting more and more active by the day. On Friday I went in to get her in her crib and was surprised to find her up on her knees (vertical)! YIKES! We came down stairs and she immediately used her toy bin to pull up again. Yesterday, she crawled over to my legs and pulled up on her knees and when I looked down she wasn't even holding on to anything! SCARY!
I sent an email to our surgeon and expressed my concerns and asked if he thought it was reasonable to consider pushing her surgery date up. He thought that there was a good chance that she would be fine until the end of May, but that it was also reasonable to look into changing her date.
I spoke with his nurse today and rescheduled her surgery for April 20 - 3 weeks from this Friday!
We have a lot to get in order between now and then, but I am feeling better knowing that her surgery is that much closer.
We will be working hard to keep her safe between now and the 20th - keep your fingers crossed!
I sent an email to our surgeon and expressed my concerns and asked if he thought it was reasonable to consider pushing her surgery date up. He thought that there was a good chance that she would be fine until the end of May, but that it was also reasonable to look into changing her date.
I spoke with his nurse today and rescheduled her surgery for April 20 - 3 weeks from this Friday!
We have a lot to get in order between now and then, but I am feeling better knowing that her surgery is that much closer.
We will be working hard to keep her safe between now and the 20th - keep your fingers crossed!
Infusion #9 has Come and Gone
Whew! We are home from Molly's 9th Pamidronate infusion - hooray! They seem to sneak up on us so quickly.
They ended up doing her infusion in her right arm this time. A first for us. She had to wear these stiff velcro bands on each arm (called "No No's") so that she didn't pull the IV out.
Her last infusion she received 5 mg of medication. I was a little slow to check the dosage this time, and when I did I immediately panicked. Her dosage this time was for almost 11 mg - more than double her last dose! She weighed almost 2 lbs more, but this was a HUGE jump. In the end I think it will all work out, but it was quite disconcerting to see such a drastic change in dosage without any discussion. After a late night page to the doctor, we learned that the Montreal protocol calls for an increase in dosage after 1 year. Molly did fine and seemed unphased by the increase.
We are home and doing well, but all a bit tired.
Molly now has her first official word. She has been saying "mama, dada, nana" and a few other "words" for a while, but not consistently for the right reasons. She is now definitely saying "Dada" and looking right at Jim. Finally, her first word!! Hooray. She seems to understand so much, it will be nice for her to express a bit more. She is signing "more", "swing", "pick me up", and nodding and shaking her head.
They ended up doing her infusion in her right arm this time. A first for us. She had to wear these stiff velcro bands on each arm (called "No No's") so that she didn't pull the IV out.
Her last infusion she received 5 mg of medication. I was a little slow to check the dosage this time, and when I did I immediately panicked. Her dosage this time was for almost 11 mg - more than double her last dose! She weighed almost 2 lbs more, but this was a HUGE jump. In the end I think it will all work out, but it was quite disconcerting to see such a drastic change in dosage without any discussion. After a late night page to the doctor, we learned that the Montreal protocol calls for an increase in dosage after 1 year. Molly did fine and seemed unphased by the increase.
We are home and doing well, but all a bit tired.
Molly now has her first official word. She has been saying "mama, dada, nana" and a few other "words" for a while, but not consistently for the right reasons. She is now definitely saying "Dada" and looking right at Jim. Finally, her first word!! Hooray. She seems to understand so much, it will be nice for her to express a bit more. She is signing "more", "swing", "pick me up", and nodding and shaking her head.
Saturday, March 17, 2007
Happy St. Patrick's Day
We have been busy and enjoying our little girl. My Mom was here for the week and that helped me to get a lot accomplished. Jim and I got to go out at night a few times and we realized that it will be a while before we can do that again.
We have started thinking about her surgery and are starting to look into flight reservations etc. I was looking at her legs tonight after her bath and thinking about the scars she will have in just a few months. Her legs are also going to look quite different afterwards and I think that will be an adjustment for Jim and I. Thankfully, she is young enough that she won't be aware of any of those changes. I know that this is necessary for her and that we have made the right decision, but it is scary and upsetting to knowingly put her through such a painful procedure.
We transformed our dining room into a play room this past week and are loving it. We bought some foam squares to cover the floor, which is perfect for her to crawl around on.
We have an outdoor swing that we can put in the garage door opening. It was warm this past week and she was in it everyday. My Mom was out there with her for an HOUR!! We would try and stop and as soon as I would go to pick her up she would start crying! She has even chose to swing over eating - I didn't think there was anything she liked more than food :)
There are a lot more pictures at this link CLICK HERE
Monday, March 12, 2007
Anxiety-A-Plenty
We have been home and working on getting life back in order and beginning the preparations for Molly's surgery. We have scheduled her surgery for May 31st. In some ways that seems like it is right around the corner and in others it doesn't feel like soon enough. She is so active these days and is learning new tricks everyday. This morning for the first time she transitioned from her belly to sitting all by herself - a big feat!
She is rocking onto her hips and putting pressure on the bottom of her foot - YIKES! Now that we know how bowed her bones really are I feel like she is a little ticking time bomb. It has been weighing so heavily on me that I am thinking of calling the surgeon to make sure we should wait another 2.5 months.
We also arrived home to a new reason to be anxious. In our mail was a hand-delivered letter from Wake County Human Services. I opened it up to find a memo from a social worker. Our name was not on the note, but it stated that our "child/children" had been reported to Child Protective Services. We slept OK on Tuesday night because we convinced ourselves that it must be a mistake or a misinterpretation on our part. Wednesday afternoon the social worker called back and told us that someone had called in a report. We arranged to have the social worker come the next day to discuss the report. She couldn't tell us anything over the phone, so we were left guessing about what we had been accused of. What a slap in the face to arrive home to this after a trip to get the best care possible for our little girl.
There have been a lot of cases of accusations of child abuse associated with OI. Often times children have not had a positive DNA match to prove that it is not in fact child abuse. We got right on the phone with the OI foundation to get advice about how to handle the visit from the social worker. They told us to make sure we had a third party present and to be sure that we printed out the resources on the OIF website regarding how to differentiate between child abuse and OI. Wednesday night was a rough one.
Our social worker arrived (1.5 hours late) and was friendly from the beginning. We had been warned that they may be rather accusatory, at least at the beginning, and were fortunate to have a positive experience right off the bat. We found out that the call came in anonymously, as they usually do, and said that they saw me pick Molly up out of her stroller, shake her and then put her back in the stroller. We were speechless. The person did not know our names, but did know our address, so we are assuming it was a neighbor. Whoever it was obviously didn't know about Molly's diagnosis because there would have been serious consequences if I had done what they reported. I don't know what motivated this anonymous "Samaritan" to fabricate such a report. I don't do anything with Molly that would even resemble shaking, so they had to have knowingly fabricated the incident. We don't know who did it, but have an idea of who might have. It obviously doesn't matter who it was. We were all prepared with our OI printouts and documentation of Molly's condition, we were not prepared for what we got at all. The social worker was very nice and said that they have to investigate all claims and that they were happy with what they saw. Unfortunately anyone can make a claim, and what has me a bit uptight is that they can make them as often as they want and all will have to be investigated. I had hoped it was just a misunderstanding that we could easily clear up, it is unfortunate that this was not the case.
Well, enough about that.
Molly is doing really well and is making more and more sounds these days. I am hopeful that some words are soon to follow. She is still her happy and fun self. She is extremely social and loves smiling at people to get their attention when we are out and about.
She is rocking onto her hips and putting pressure on the bottom of her foot - YIKES! Now that we know how bowed her bones really are I feel like she is a little ticking time bomb. It has been weighing so heavily on me that I am thinking of calling the surgeon to make sure we should wait another 2.5 months.
We also arrived home to a new reason to be anxious. In our mail was a hand-delivered letter from Wake County Human Services. I opened it up to find a memo from a social worker. Our name was not on the note, but it stated that our "child/children" had been reported to Child Protective Services. We slept OK on Tuesday night because we convinced ourselves that it must be a mistake or a misinterpretation on our part. Wednesday afternoon the social worker called back and told us that someone had called in a report. We arranged to have the social worker come the next day to discuss the report. She couldn't tell us anything over the phone, so we were left guessing about what we had been accused of. What a slap in the face to arrive home to this after a trip to get the best care possible for our little girl.
There have been a lot of cases of accusations of child abuse associated with OI. Often times children have not had a positive DNA match to prove that it is not in fact child abuse. We got right on the phone with the OI foundation to get advice about how to handle the visit from the social worker. They told us to make sure we had a third party present and to be sure that we printed out the resources on the OIF website regarding how to differentiate between child abuse and OI. Wednesday night was a rough one.
Our social worker arrived (1.5 hours late) and was friendly from the beginning. We had been warned that they may be rather accusatory, at least at the beginning, and were fortunate to have a positive experience right off the bat. We found out that the call came in anonymously, as they usually do, and said that they saw me pick Molly up out of her stroller, shake her and then put her back in the stroller. We were speechless. The person did not know our names, but did know our address, so we are assuming it was a neighbor. Whoever it was obviously didn't know about Molly's diagnosis because there would have been serious consequences if I had done what they reported. I don't know what motivated this anonymous "Samaritan" to fabricate such a report. I don't do anything with Molly that would even resemble shaking, so they had to have knowingly fabricated the incident. We don't know who did it, but have an idea of who might have. It obviously doesn't matter who it was. We were all prepared with our OI printouts and documentation of Molly's condition, we were not prepared for what we got at all. The social worker was very nice and said that they have to investigate all claims and that they were happy with what they saw. Unfortunately anyone can make a claim, and what has me a bit uptight is that they can make them as often as they want and all will have to be investigated. I had hoped it was just a misunderstanding that we could easily clear up, it is unfortunate that this was not the case.
Well, enough about that.
Molly is doing really well and is making more and more sounds these days. I am hopeful that some words are soon to follow. She is still her happy and fun self. She is extremely social and loves smiling at people to get their attention when we are out and about.
Tuesday, March 06, 2007
Happy to be Home :)
Our week long adventure is over and we are happy to be home. We have had a lot to digest after our Omaha trip. I don't think an hour has gone by without thinking about her surgery and the decisions we need to make in the next month or two.
We had a great time in St. Louis with Jim's family. Molly loves attention and got plenty from Jim's parents and friends. We went out to dinner with Molly for the very first time! A big milestone! She even got to order off the kid's menu.
We got to visit with a St. Louis OI family that we met at the conference. Their son, Nicolas, was 2 on Sunday. We got to celebrate his birthday and the two of them got to crawl around and play together. This was a big step for Molly. Generally we have to be extremely protective of Molly when other kids are around, but we were quite comfortable with Nic and Molly playing together.
Molly has started watching Sesame Street and seems to really like Elmo. Her Gram bought her a wonderful Elmo puppet. Elmo gave her big hugs - she LOVED cuddling with it :).
Friday, March 02, 2007
Mission Accomplished... Despite the Snow Storm!
We have had quite the event filled few days. We flew into Omaha on Wednesday without a lot of issues. We were quite the sight with all of our carry-on gear. Molly was a trooper and did well with all of the travel even though she didn't get the chance to nap.
We woke up on Thursday morning to 6 inches of snow and it was still falling. We were staying 5 blocks away, but with the white-out conditions it was a slow and stressful drive.
We made it there for our 7:15 appointment and started our first OI clinic. Molly had X-rays and Dexa scans done to start things off. She was fairly well behaved with a few tantrums thrown in to the mix.
We then headed upstairs and met with PT and OT. They were impressed with how strong she is and had good things to say. They think that she will probably get a manual chair rather than a power chair a least in the beginning. It was good to hear that those in the know were so optimistic about Molly's short-term future.
They have advised us not to encourage any movement or further development until she has had the rodding surgery. The bowing in her right femur and tibias is approximately 90 degrees. It is simply a matter of when she fractures her legs, not if. We already thought this was the case, so this was nothing new.
Next we met with Dr. Esposito (the orthopaedic surgeon) and went over her x-rays from earlier that day. He showed us that her bowing is both from side to side and back to front. He was impressed with how active she is and seemed almost surprised with her ability to crawl without incident. We discussed rodding surgery and what to do in the event of a femur fracture etc. After a long and involved discussion he advised us to consider scheduling surgery for between 16 and 17 months - that is 2-3 months from now!! I had envisioned him suggesting 18 months, so it has been an adjustment to be preparing for earlier. He said the ideal would be to schedule the surgery for the day before she is going to fracture. Unfortunately, we don't have a crystal ball to predict this, so we are trying to ensure that the surgery happens before the big fracture.
Her right femur and tibia are both quite bowed and need to be corrected surgically. Her left tibia also needs to be corrected. Her left femur looks good at the moment, but he advised we go ahead and rod it as well while we are going through with the surgery. It is a lot to process and we have some big decisions to make in the next few weeks.
On the day of the surgery he will start with her right leg and hopefully rod both her femur and tibia. At that point he will come out and discuss how things are progressing. If things are going well we will continue on and rod her left leg as well. We are also considering having a port put in for easy IV access for future infusions.
We will be scheduling her surgery in the next week or two. It seems that it will be in June, give or take a couple of weeks.
We also discussed changing Molly's Pamidronate dosage to the Omaha protocol (half of the Montreal dose). If and when we make this switch we will also need to switch to at-home infusions. If we go ahead and get the port when we do the rodding surgery home infusions should be rather uneventful. It is exciting and overwhelming to think about making all of these big decisions and changes.
it will be a nice security having the rods in place to reduce the bowing she has and also to stabilize future fractures. It is hard to envision Molly going through such a traumatic surgery, but the alternative isn't any better.
We have a lot of things to take into account before moving forward with the surgery. I am overwhelmed by the prospect of doing the surgery and I am overwhelmed by the prospect of waiting until a femur fracture to do the surgery. It is hard to know what is best for Molly.
It is also difficult that we are so far from our treatment center of choice. I don't know what will happen if Molly has a femur fracture before the surgery date, but we will cross that bridge if and when we need to.
I am so glad that we made the trip out. It was worth all of the efforts. I felt that they answered all of our questions and they seemed knowledgeable in ways that now one else has up to this point.
We are now in St. Louis visiting with Jim's parents. It has been another long day and I am going to sign off for now. I will try and come back and add more while it is still fresh in my mind.
Thanks for all of your well wishes and messages :)
We woke up on Thursday morning to 6 inches of snow and it was still falling. We were staying 5 blocks away, but with the white-out conditions it was a slow and stressful drive.
We made it there for our 7:15 appointment and started our first OI clinic. Molly had X-rays and Dexa scans done to start things off. She was fairly well behaved with a few tantrums thrown in to the mix.
We then headed upstairs and met with PT and OT. They were impressed with how strong she is and had good things to say. They think that she will probably get a manual chair rather than a power chair a least in the beginning. It was good to hear that those in the know were so optimistic about Molly's short-term future.
They have advised us not to encourage any movement or further development until she has had the rodding surgery. The bowing in her right femur and tibias is approximately 90 degrees. It is simply a matter of when she fractures her legs, not if. We already thought this was the case, so this was nothing new.
Next we met with Dr. Esposito (the orthopaedic surgeon) and went over her x-rays from earlier that day. He showed us that her bowing is both from side to side and back to front. He was impressed with how active she is and seemed almost surprised with her ability to crawl without incident. We discussed rodding surgery and what to do in the event of a femur fracture etc. After a long and involved discussion he advised us to consider scheduling surgery for between 16 and 17 months - that is 2-3 months from now!! I had envisioned him suggesting 18 months, so it has been an adjustment to be preparing for earlier. He said the ideal would be to schedule the surgery for the day before she is going to fracture. Unfortunately, we don't have a crystal ball to predict this, so we are trying to ensure that the surgery happens before the big fracture.
Her right femur and tibia are both quite bowed and need to be corrected surgically. Her left tibia also needs to be corrected. Her left femur looks good at the moment, but he advised we go ahead and rod it as well while we are going through with the surgery. It is a lot to process and we have some big decisions to make in the next few weeks.
On the day of the surgery he will start with her right leg and hopefully rod both her femur and tibia. At that point he will come out and discuss how things are progressing. If things are going well we will continue on and rod her left leg as well. We are also considering having a port put in for easy IV access for future infusions.
We will be scheduling her surgery in the next week or two. It seems that it will be in June, give or take a couple of weeks.
We also discussed changing Molly's Pamidronate dosage to the Omaha protocol (half of the Montreal dose). If and when we make this switch we will also need to switch to at-home infusions. If we go ahead and get the port when we do the rodding surgery home infusions should be rather uneventful. It is exciting and overwhelming to think about making all of these big decisions and changes.
it will be a nice security having the rods in place to reduce the bowing she has and also to stabilize future fractures. It is hard to envision Molly going through such a traumatic surgery, but the alternative isn't any better.
We have a lot of things to take into account before moving forward with the surgery. I am overwhelmed by the prospect of doing the surgery and I am overwhelmed by the prospect of waiting until a femur fracture to do the surgery. It is hard to know what is best for Molly.
It is also difficult that we are so far from our treatment center of choice. I don't know what will happen if Molly has a femur fracture before the surgery date, but we will cross that bridge if and when we need to.
I am so glad that we made the trip out. It was worth all of the efforts. I felt that they answered all of our questions and they seemed knowledgeable in ways that now one else has up to this point.
We are now in St. Louis visiting with Jim's parents. It has been another long day and I am going to sign off for now. I will try and come back and add more while it is still fresh in my mind.
Thanks for all of your well wishes and messages :)
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