ANOTHER New Surgery Date

Today has not been a great day. I went to pick up my car that was being worked on. I put Molly into the car seat and further injured her leg. It was bad enough that I decided we needed to get an X-Ray. I also called the orthopaedic surgeon in Omaha to see if there was any way to move up the surgery date (if he thought that was appropriate).

We got the X-Ray and it seems to be a fracture of her Tibia. They helped us make a splint and we're hoping that will help.

I put her in the car to head home and the door wouldn't close (that's what it was in for all weekend). This is the 5th plus time that they have tried to fix the problem. It is hard when your new vehicle is one more thing to be worrying about. If anyone knows about the Lemon Law details... please pass them on. This door has been acting up since we bought the car (brand new). The timing couldn't have been worse today though. Thankfully, after about 20 minutes of working on it (with Molly screaming at me) I was able to get it closed and head home.

Now for some good news... we were able to change her surgery date to April 13 (next Friday). Yes, Friday the 13th. A lucky day in our family. Molly was born on Friday the 13th, as was my brother (actually Friday April 13th). My parents were married on the 13th, and my Grandmother and Aunt were born on the 13th. I'm hoping this is the good luck that we need for her surgery.

I have already changed our flights, hotel, etc. We used Southwest and you don't have to pay to change your ticket (unless the new ticket is more expensive), which was a nice surprise.

I keep fluctuating between thinking that 11 days is very soon and thinking it isn't soon enough. This was definitely the earliest that we can do the surgery in Omaha, so now we just have to hope that it is soon enough. So, everyone think good thoughts for Molly a week from Friday (around noon).

We will work on posting some new photos, but there is a new video that is a MUST SEE of Molly "talking" CLICK HERE

Leg Fracture - Not Too Bad

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.

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!

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.

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

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.

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 :).

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 :)

Hit the Road Jack...

It has been while since my last post. I have had so much to think about/organize that I haven't made the time to write.

We are getting ready to head to Omaha on Wednesday. This is a BIG visit. We have such high hopes that we will get some answers to the questions that we have had since Molly was born. Our trip to Maryland in June was not at all what we were hoping. We left with at least as many questions as before the visit. It is so frustrating to be relying solely on local doctors, who have very limited experience (less than 20 patients EVER). Thankfully we have an online community of other parents to post questions to. This has been an invaluable resource, but it isn't the same as a doctor who understands the big picture and all of the nuances of each of these kids. OI looks different for every person. It is hard not knowing what Molly's future will look like. I have no concept of what she will look like when she is 10 and 20, nor do I have any concept of her capabilities and limitations.

I have so many questions floating around in my head. I am so hopeful that we will get answers to at least some of the questions we have. They will be doing blood work, x-rays, etc. at this appointment. We will be meeting with PT, OT, a nutritionist, endocrinology, orthopaedics, and possibly audiology. PLEASE let some of these doctors help shed some light on what is ahead and what is needed for Molly.

The big motivation for this appointment is to meet with Dr. Esposito, the pediatric orthopaedist. We will be looking at x-rays and discussing when we will do Molly's rodding surgery. We will learn more about the procedure (I hope) and the risks and recovery process etc. It is frightening to think about putting her through surgery when she is so tiny. I don't want to send her through that door. I know that she will benefit from it, but it is still a very scary risk. I know talking with the surgeon is going to make it that much more real.

We are also going to meet with Dr. Plotkin, the pediatric endocrinologist. We met him this summer in Omaha at the conference and liked him IMMEDIATELY. What a wonderful and caring man. He started in Montreal at the Shriner's hospital where they developed the Pamidronate treatments that Molly receives every 8 weeks. He has moved to Omaha and changed the dosage of PAM (Pamidronate) to 1/2 of the montreal dose. Many families have switched to this new dose. Montreal has found that, at their dosage, kids need to take a break after 4 years. During this time kids have a lot of bone pain and often an increase in their fracture rate. Dr. Plotkin has found that going to half of the dose seems to allow kids to stay on the drug continuously without needing this stop period. We will be discussing switching Molly from the Montreal dose (that she has been on for a year) to the Omaha (half) dose. Our local endocrinologist does not feel comfortable switching away from the Montreal dose until Dr. Plotkin has published his findings. I respect her opinion, but also want to do what is best for Molly. If we choose to switch protocol we will also be switching to doing her infusions at home. A lot to think about, but also the potential to have some great benefits for Molly. It would be nice not to have to expose Molly to the germs of a hospital 6 times a year, but we just need to think through the risks and benefits of changing away from the current standard. I hoping that through talking with Dr. Plotkin that our decision will become clearer.

As for Molly, she is doing very well these days. She seems to have recovered well from her rib fracture. She is now officially mobile! She is EVERYWHERE!! Jim and I have started babyproofing, but have a long way to go! She is crawling all over the house (several feet at a time). She wants to pull on everything and is especially interested in all of the remotes we seem to have. She is now saying Dada a lot, "dodgie" for dog, ba for ball, ma for more and is working on saying something for cat/kitty. She can show you where her ear is, mouth, hair, barrette and can point at lots of things in her books. We still need to work on expanding her signing vocabulary, but she is getting there!

I know that there is more to report, but she is upstairs and awake and babbling up a storm. There are new pictures online and I will post some later.

Hope you are all well. Write if you can!

Feeling Better

Molly seems to be in better spirits today. We gave her motrin during the night and that seems to have helped. She seems to be much more comfortable and has even started dragging herself around the room! What a little trooper :).

She slept a ton yesterday, probably a means of coping with her discomfort, which made yesterday a bit easier on all of us.

Keep your fingers crossed that we can make it to our appointment in Omaha. She is getting so much more active that the likelihood of things happening just gets higher. On the other hand, she is getting more active :), which is good for her bones and muscles and development.

Rib Fracture?

Molly has a fracture somewhere. She flung her body sideways while we were holding her and she bumped her side on Jim's arm. She cried hysterically for a good half
an hour and then seemed to settle down for a little while. She was in the midst of eating dinner and became hysterical again. There is a crunching/popping thing on her left side under her armit and around her shoulderblade on that side. You can feel it with every breath.

She slept until 3 am, at which time her breathing was more of a grunt (clearly coping with the pain) so we gave her more motrin. She slept until 7 and has been crying off and on. Her breathing has been shortand shallow since this happened yesterday afternoon. Her breathing seems better when the medication has kicked in, but in between doses she is grunting more and with breathing with more shallow breaths.

Nothing can prepare you for when this sort of thing happens. Hearing her cry out in pain is the worst thing in the world. She is a trooper and has even managed to smile here and there. I hope that the recovery period for this is short.

We are seeking out advice from some other OI parents and hope to get some assurance about what we are doing. We will take her in to the orthopedist tomorrow to have a look. There isn't much they can do with rib fractures, so we have (for the time being) opted not to go to the emergency room.

Here's hoping this is a short-lived incident.

Molly Is On the Move!!

Yikes!! Molly has been moving ALL around the floor this afternoon. She was moving herself FEET forward to get to things. She did it several times and seems to have figured out a way that works for her. This is good news for her and trouble for Jim and I :). I put her down, went to the bathroom and came back to find her WAY away from where I put her down. I am excited by this, but also terrified. I just hope her little legs can handle the stress of her new found mobility.

Hooray for Molly!

Here's the video of Molly Crawling CLICK HERE
and a video of Molly Laughing CLICK HERE

Our trip to Omaha can't come soon enough. Until we have that appointment I feel like we are driving around without insurance - not a good feeling, but hopefully we will make it to the end of the month.

Also, the woman who watched Molly in the water was so impressed with her that she suggested that our therapist consider doing a case study with her. It is nice to hear that she is so impressed with Molly's progress.

Busy Little Bee

We seem to have hit a new development speed! She is learning new tricks by the hour. She is also EXTREMELY active these days! Yikes!

She transitioned from sitting to on her stomach for the first time today. She also now says "baa" for sheep and "moo" for cow.

We had a water therapy session this morning, which Molly LOVES!! There was a therapist there who specializes in water therapy. She was impressed with how active and strong Molly was. It is always good to hear that from someone who knows what they are talking about. She could tell that Molly spends a lot of time on her belly by seeing how strong she is.

We spent over an hour in the water and I think she could have been in there even longer!

We just made flight reservations for a trip west at the end of the month. We're going to Omaha to have our first OI clinic. We'll meet with PT, OT, Endocrinology, and Orthopedics. We are hoping that we get some answers about the big picture for Molly as well as a definitive answer about when to expect to do her rodding surgery. The thought is that we will wait until 18 months and evaluate at that time, but if she has a femur fracture before that point that we will fly out and have the surgery done at that time. We are really excited to get some answers and get things in place for her surgery.

Here is a link to an article CLICK HERE about a family from Denmark that flew to Omaha to meet with the doctors there. There are some photos in the article as well (click on the "More About Marie Laursen" link on the right).

Here's a photo of Dr. Plotkin (in the forefront) with the family from Denmark:


After the OI clinic we'll fly to St. Louis for a visit with Jim's parents. It will nice for Jim to be home and for Molly to get to visit and meet all of their friends.

Infusion #8

We are home from Molly's infusion and happy to have it behind us. Her IV has been in her head up to this point, but we decided to try a foot this time and had success. It was scary having them touching her legs to get the IV in, but it worked out in the end. Her medication was misordered and it was tense for a little while, but we spoke with our doctor who confirmed that things were correct.

Removing the IV was a snap (compared to when it was in the head and her hair was ripped out) and we were home by 10:30. Thankfully we have an 8 week break before we have to go through this again.

Molly was a champ and didn't even cry when they removed the IV :).

A Big Week

We had a lot going on last week. My Mom arrived on Monday for a week FULL of appointments. We met with a new orthopedist on Tuesday and think that the 4th will hopefully be the charm. He admits that he is not an OI expert, he seemed interested in learning more about the new treatments for OI, and seemed to respect that we were going to go to a specialty center for her surgery. We've only met with him twice, so it's hard to have complete confidence, but hopefully we have found a good fit for us.

We met with a new PT on Thursday and are considering changing to her as well. It is hard for me to leave our current PT after being with her for a year, but I think that Molly will benefit from the change.

Jim and I also had the opportunity to get out of the house at night with some friends while my Mom was here and that was so nice.

I am feeling anxious about the fact that we don't have things in place yet for Molly's surgery. There is a chance that she won't have the surgery for another 6 months, but there is also the chance that she could have it next week. If she fractures her femur, then we will go ahead and have her femurs and tibias rodded at that point. We don't have a relationship with the surgeon we think we're going to use, so until we have done that there is a chance that he won't operate if she fractured now. We have put a call in to Omaha (where we're planning to go for her surgery), but are waiting to make arrangements. It seems that we will be making two trips to Omaha in the next 6 months or so.

I'm not looking forward to the surgery, but I am looking forward to her having rods in place. The rods will help her so much. They will strengthen and straighten her legs and they will stabilize any fracture, which will help to minimize the pain. Lots of benefits.

We bought Molly an exersaucer on Thursday. I had one, but didn't think she'd ever be able to use it, so I returned it. We also got her a little seat for the floor. And the most exciting purchase, according to Molly, is a swing for outside. She LOVES it!! There is a video CLICK HERE to see her swinging

She was able to put some pressure on her feet in the exersaucer, which is exciting and scary all at the same time. She is getting stronger and more mobile by the minute - very exciting!

She Crawled!!!

First off, here are two videos of her:

CLICK HERE for a video of her playing her piano

CLICK HERE for a video of her sliding on the floor

She was on her belly this evening and REALLY wanted the TV remote and pushed herself forward (just a few inches) to get it. A first and very exciting. We weren't sure that she would ever be able to put enough pressure on her legs to accomplish this. We are also nervous because this is how most of the kids fracture their femurs. For now we will enjoy her new big milestone!

On the Move

Molly is getting more mobile by the minute. She is getting up on her knees in a crawling position, which has us all scared. This is how most of the kids have fractured their femurs. I don't want to stop her from progressing, it's good she is getting so strong, but it is scary to watch and wait.

She is still only able to move backwards, but she can spin on her belly, which allows her to cover a good amount of the familyroom.

We went swimming yesterday and had a ball. We were able to stay in for almost an hour.

She loves music and will "dance" by moving her arms around "Saturday Night Fever Style" - ADORABLE!

There are a few videos from her birthday to view:

CLICK HERE to see her at the computer

CLICK HERE to see some birthday footage

CLICK HERE to see some more birthday footage

CLICK HERE (for big fans only) to see a LONG video of Molly with her cake

Happy Birthday Molly!

Wow - Molly is 1!!

We have been reliving last years events at this time, mostly with fondness. It is hard to believe it's already her first birthday. It certainly has been a rollercoaster ride this past year, but we are in a much better place today than we ever would have predicted a year ago.

We have had such a good year with this little cutie. She is one fun little girl.

We had around 20 people here to celebrate the big day. I felt very lucky to have so many people here to sing and celebrate with us.

It is hard to think back to those first few months and how stressful and scary they were. We spent the first month thinking that she was deaf, which was an added stress that we certainly didn't need. I think I will always remember sending out the email with the subject of "She Can Hear". We had celebratory cake that night!!

There have been lots of adjustments to make and certainly our share of difficult times, but for the most part I feel very fortunate for the year that we have had with her. There are lots of families that have been far less fortunate that we have and that is not lost on me for a moment.

Our toughest times are ahead and it is hard to have that looming, but I am trying to appreciate the way things are now as best I can. Her biggest challenges are the slow changes that will occur to her spine and the issues that come along with that.

We are lucky to have such overwhelming support from our friends and family. I hope you all know how much we appreciate everything you have done for us this year. I don't know what we would have done without the help and support you have all given us.

I wasn't sure if today would be a happy or sad day for us and I am happy to report that it was 100% happy :). We feel so fortunate to have such a wonderful baby and such supportive friends and family to help us with the bumps we hit along the way.

There more photos from her birthday CLICK HERE

Lots to Report

I have been meaning to record all of Molly's happenings, but haven't found the time until now.

Things are going well here in NC. Molly has been so happy and fun lately.

She is sitting up in her bath now. We have transitioned to the big bath tub, which she seems to enjoy.

She says Dada, Doggie (or something like it), she is signing more when she wants to eat or wants more of something. She signs milk, pick me up and lays back if she wants me to pick her up. She is looking more intently at the pictures in books and gets particularly excited to see pictures of ducks (yellow ones), bunnies (she makes her hand hop) and teddy bears (she has one she sleeps with now). Her level of comprehension seems quite good. I am looking forward to her being able to communicate more, but I know that will come in time.

We had an appointment with her OT this week and they did a test (Bailey test I think) to see where she was in her development. She did pretty well. They scored her and she is in the 10 month level with the things they tested her for. She did some things at a 13 month level, but still has some catching up to do in other areas. Obviously she is delayed in her gross motor skills, but that is to be expected. We're doing what we can for now and I know she will be advancing at lightning speed in the coming months. She is already changing so much from day to day and certainly from week to week.

We went to the pool today and she did some standing on my legs, which was fun but scary. She still keeps some of the weight on my hand, but puts more than she does out of the water on her legs.

The past few days have been our best ever. I'm not sure what has made them so good, I guess it's a combination of things. She is interacting with the world so much more than she was even last week. She has been really happy and has enjoyed playing games and just looking at things around the house.

She got a Fisher Price Farm set and school bus (with Little People) for Christmas and they have been a big hit. She opens and closes the doors and takes the animals/people out and seems quite proud of herself.

She clapped her hands (no sound) for the first time yesterday, which was a big deal for us. She seems to be entering a stage where copying us is becoming more commonplace.

It is hard to believe that she is going to be 1 next week! It is exciting to be moving into a new phase with her.

On a different note. My friend's 22 month old son with OI fractured his femur two nights ago and has his first cast. This has certainly made my growing anxiety more real. There is the stress of figuring out how to get them home with a Spica cast on (that is a cast that goes from the ankle to the armpit). You also have to figure out how to do everything else: diaper changing, feeding, playing, bathing etc. We were hours before it happened, brainstorming what we will do when the dreaded fracture happens. I know you can never be prepared for something like that, but I feel especially unprepared right now. Hopefully I can get my act together and get more of this stuff figured out in time.

There are several new pictures since Christmas. Click HERE to see the latest picture (at the bottom of the page).

There are also a couple of new videos:
1. Molly at her Highchair CLICK HERE
2. Molly sitting in the tub CLICK HERE

'Twas the Night Before Christmas

I can't believe it's almost here. Our first Christmas with our daughter - YAHOO!!

She is quite the champ. We went to a neighbor's party this evening and Molly was a big hit with all of the kids. She had 7 or 8 kids crowded around her all oohing and ahhing and trying to get Molly's attention. She was a big fan of all of the focus being on her.

We put her to bed at the party and she fell asleep like a champ. We have now come home and put her back to bed and it seems she is back asleep and happy as can be.

I am so excited to have our first Christmas as a family. We just realized that we haven't yet wrapped any of her presents. I think this is the only year we will get away with that!

Merry Christmas to All!

Dada!

It's official... she is now, without question, calling Jim "Dada". Hooray! She is quite excited about it as well. She has been working on a lot of "D" sounds and been saying dada for a while, but now it definitely seems deliberate when she sees him. I know my time will come. She so wants to be saying more, but it seems to be a bit slow going for her at the moment.

I have been talking to her about what different animals say and she listens intently, but hasn't been able to produce any of the sounds. I have tried several different sounds for dog and finally tried a dog panting and she latched right on. For the rest of the book she "panted" at each page - adorable!

She continues to progress with her sitting and sat today with nothing to help support her without much trouble. I look forward to her getting to a point where I'm not right there worrying so much.

Happy Times at the Sullivans

We had a nice weekend here with Molly. It is amazing how good things can be when there are two adults to get things ready throughout the day. Thank goodness for weekends! I can only imagine how exhausting it must be to be a single parent.

Molly has started saying "nanana" when she wants something (generally food). She is also demonstrating how much she understands. I can tell her to roll over so I can pick her up and she will. She also smacks her lips if we say eat and can look around in the appropriate location for lots of different things. You can ask her if she wants a particular thing to eat and she will shake her head or not.

She has become even more interested in Howie and he is now allowing her to pat him for a moment or two before he has had enough.

Wrestlemania Here We Come!

Molly has some new tricks up her sleeve these days. She has taken to head bashing me with her forehead. When I say "No" in my sternest voice she laughs. It is so hard to keep myself from laughing, which she has learned rather quickly. Hopefully this will be a short lived phase.

She is getting stronger and is able to sit unassisted for short periods now. She is also rather vocal and is saying a lot of Na na na na and Da da da da. She has said Dada to Jim a few times now and it seems to be deliberate. I can also ask her questions at mealtime and she can answer by shaking her head or giving me the sign for "all done". It is so nice to have some two-way communication happening.

She is getting good at feeding herself and more and more of her food is in the form of finger foods. I'm hoping that we are moving towards a new part of her development that will make life a little bit less challenging.

Sitting and Playing

We have been working on sitting with Molly and she is already close to being able to sit all on her own. She's definitely on the accelerated program!

We are working on hitting more of her milestones. She is a bit delayed, but I think a lot of that has to do with the fact that she hasn't been sitting, standing or crawling. At least she is happy :).

Molly has been having fun playing peek-a-boo lately and really seems to enjoy the game. You can see her behind the toy delighted with herself and the game and then she energetically pops out from behind - ADORABLE!! Here is a video of her playing peek-a-boo CLICK HERE.

There is also a video of her sitting CLICK HERE.

We seem to be back in the world of separation anxiety, I hope this is another short-lived phase! I can't take more than 3 steps away without her breaking down in hysterics! As my Dad would say... "This too shall pass" :)

She continues to be happy and full of spunk!

Infusion #7 - Mission Accomplished

We are back from Molly's 7th infusion and happy to have it behind us. This one did not go quite as smoothly. We shaved the same spot on her head and they got the IV in. They took too long to get the medication up to us (4+ hours) and the vein blew and we had to do a new IV. We generally have the IV Specialty team put her IV's in, but it was after 5 and they weren't around. Fortunately, we found another vein on the head to work with. We shaved a spot on the other side of the head and they got the vein without a lot of trouble. She was crying so hard that she started sweating and then there was an issue getting the tape to stick to secure the IV. It was a rough few hours watching her get so upset. I was worried she was going to get physically ill from getting so upset. They ended up pulling a bunch of hair out when they removed the IV, so it was upsetting that we had to go through that part twice. Thankfully the second IV worked until 5 am. We had gotten enough of the medicine (we missed 2 hours worth) so we didn't have to go through another stick.

So, the infusion was over at 5. The IV was removed at 7 (once she woke up) and the blood work was sent down. It then took them until 11:45 to finally release us. We paged the doctor and she agreed that we could go, but someone in the hospital didn't think we should leave yet, so they kept us there for 4 hours more than we needed to. I was going crazy. I know that there are much worse things, but when you have a baby that needs to nap it is frustrating to be stuck there for no good reason. In the end it all worked out. We got the medicine Molly needed and nothing bad happened. That's about all we can ask for.

We are very fortunate that Molly recovers VERY quickly. Within a few minutes of crying/screaming hysterically she is back to her happy self. She is one happy little girl and NOTHING is going to keep her down for more than a minute or two!

Photos Galore

Here's Molly in the hot tub and having a ball:

Here's Molly covered in food when I let her try and feed herself:

Here is Molly in her "peapod" that we used while in New England instead of a Pack n' Play:

Jim has uploaded a great deal of photos to the Picasa website. CLICK HERE and look at the 9-12 month folder and Thanksgiving Folder to see new photos.

Temper Tantrums Already?!?

We went in to see the dentist today. We didn't learn all that much, but he seems to be knowlegdable. It's another one of those "wait and see" situations. It is hard living in the world of the unknown, but I guess we all live in that place to some extent. Molly has gotten some good naps in today and is HAPPY HAPPY HAPPY as a result :). Hopefully this good mood will come with us to the hospital tomorrow.

She has started to have an opinion of what should be happening (or not happening). If I put her in her high chair and she doesn't want to be there, she lets me know! We have entered a new phase. She has started arching her back and throwing herself backwards or rocking side to side when she is unhappy with something. It is terrifying and exhausting. I hope that this is a short-lived phase. She learned the sign for fan while we were in MA and seems to be working on more now that we're home. I think she showed the sign for drink during lunch today and is eager to communicate every time she sees the dog. I think there is a lot more going on "upstairs" than she is able to communicate at this time. I can't wait until we either get more signs into the mix, or she starts talking!

If all goes well, we will be at the hospital tomorrow for her infusion (I think this is #7). We will be spreading out the infusions to 8 weeks after this, which should be a nice break for all of us.

I hope everyone had a wonderful Thanksgiving. I can't believe it's going to be December tomorrow. Molly is almost 1 - YIKES!

Home Sweet Home!!

Whew! We have been gone for 10 days and it feels great to be home. Molly was so tired and got a bit cranky on the trip home, but who can blame her! She's upstairs sleeping and hopefully enjoying being back in her crib.

Jim is on his way home with Howie, our pug, and I can't wait to see him!

We had such a great trip. Molly became even more social, if that is possible, on this trip. It has made me realize that I need to create more opportunities for her to be in a social environment with other kids.

I am so glad we made the trip up to New England. We had some nice down time, family time, time with friends and Jim and I went out for dinner one night as well.

We had scheduled Molly's infusion for Wednesday, but after talking with her doctor decided to put it off until Friday. I am so glad we don't have to ship off tomorrow for another night away from home. We have an appointment with a Metabolic Dentist on Thursday to look at Molly's teeth and give us some advice for how to care for brittle teeth. Hopefully we will get more good news than bad. I always dread looking into something new like this, sometimes I find out more than I want. Hopefully we will like the dentist and feel confident with his advice.

I am looking forward to a good night's sleep back in our own bed!

Thanks to everyone who hosted us on our trip. It was nice to see everyone and to spend some time in New England.

HAPPY THANKSGIVING!!!

We are having a nice visit here in MA with the family. There were 16 of us for dinner tonight and everything was delicious!! Molly had some butternut squash to celebrate the big day - next year she be able to enjoy it all!

It has been hard to be out of our comfort zone with her. There are so many things to think about when we are in a new place with her. She has loved visiting so many new places and has been very responsive to all of the new stimulus.

It's 10:30 here and it is time to head up to bed. I hope you all had a great holiday. I know Molly had a good first Thanksgiving :).

The Grand Tour

We're here in New England and trying to make the most of our trip - maybe a bit too much!

We flew in on Saturday to Boston and my Mom came and picked us up. Molly was a perfect traveler and we arrived in Maine with very little fussing :). She is quite the little champ! We tried out my parents hot tub with Molly (they dropped it to 96 degrees) and she loved it. She put some pressure on her feet in there for the first time anywhere. A big, but very scary, step!

We drove down to my old co-workers on Sunday and met up with Jim's old co-workers for dinner. Molly was a trooper until her bedtime (6 pm) rolled around and we had to pack up and put her down for the night. I had the chance to get together with teachers from my old school for lunch on Monday. It was so nice to be back in Chelmsford. Jim and I drove by our old house - it hasn't changed much. It was half the size of our house now, but we miss it in many ways :).

In some ways it feels like we haven't been away at all and in others we have forgotten a lot. We do love New England. There is a lot that we miss about the area, but there is also a lot that we would miss about North Carolina if we moved as well.

We are now at our cousins and settled in for a couple of days. Molly has done extremely well with all of our location changes and has stayed on her sleep schedule more or less. She is waving at everyone we meet and charming them with her happy and fun personality.

We are really looking forward to the rest of the family arriving and for the big feast. Hooray for pumpkin pie!!

I am glad to have such good stuff to report. We had a busy week last week and are enjoying our vacation thus far.

Videos Galore....

We have had a wonderful weekend with our little cutie. Jim was "Super Dad" and gave me a lot of time out of the house. I love our baby, but it is VERY nice to have a break. I love being able to go to the bathroom when I need to and eat when I'm hungry etc. These are the times when you know you have a great husband!

She is starting to copy our actions more. Yesterday's trick was the tongue. She would stick hers out and move it side to side and wanted us to do the same. She then would stick it out on command - adorable. But, today is a new day and she is no longer doing her tongue tricks - that is SO yesterday Mom...

One of her new favorite activities is to "dance". We hold her facing out and move side to side and she kicks like CRAZY. She has the biggest grin on her face every time - it's adorable!

We had our first water therapy appointment on Friday and had a wonderful time. The pool was 94 degrees and she loved it. We were in there for a full hour and she was happy as can be. It was so nice to get suggestions and to have someone in the pool to do activities with. I am already looking forward to our next visit :)

Guess that's all for now. We will be busy all this week getting ready for our big trip North.

Video #1 - Dee Dee Dee CLICK HERE

Video #2 - Molly Playing with her tray CLICK HERE

Video #3 - Molly Learns to Nod CLICK HERE

Ah-choo!

Sorry I haven't been as active with my posts, but my brother gives me a hard time when I post without new pictures. It is often hard to find time to take pictures and even harder to find time to get them off the camera.

I was feeding Molly dinner tonight, she opened her mouth for the next bite (or so I thought) and just as I brought the spoon of food to her mouth she sneezed and sent food all over me. A nice "dusting" of zucchini, pears, and rice cereal covered most of my front. Too funny.

We went in to see the orthopedist today for a check up and had a great visit. We took X-Rays of her spine and legs and he was happy with what he saw. There is still quite a bit of bowing in her legs, especially her right femur and both tibias, but he thought that some of that might get better as she grows. I always like to hear good news! We also got the go-ahead to start putting her in a more upright position. Yahoo!! The first step towards sitting :).

Lately, my days have been filled with an overwhelmingly long list of "To Do" items, so the visit today was a nice surprise. I had been fretting about today's appointment and what it might reveal, so I'm glad it's over and that the news was good.

We are heading to New England for Thanksgiving this year. I'm getting really excited - we leave on Saturday.

Molly Through The "Years" Photo Collection

Molly is upstairs "sleeping" right now and all I can hear is the sound of her kicking so hard the springs are making noise. She is a character! Molly is a great sleeper at night, but naps have been virtually non-existant these days (30 minutes tops). Oh well, at least she isn't up at night.

Jim's Mom was in town this weekend and got a lot of quality Molly time. Molly has been babbling away and is now making a two sylable sound that sounds like "I do", but I'm not sure what she thinks she is saying.

Jim has created a website with folders for 3 month periods. Enjoy!

She has mastered feeding herself Cheerios and we are going to try giving her a spoon soon - we will of course take pictures...

Splish Splash

Molly and I went to the pool again today and she had a ball. She learned how to splash with her arms and couldn't get enough. There was water all over her face, but she was happy, happy, happy.

I'm so glad it has been working out so well there.

She is continuing to babble up a storm, but so far none of it has meant anything to us yet. Hopefully that breakthrough will happen soon.

She is getting more and more consistent with her waving. She waved to the mother and daughter who were swimming at the pool today. I'm sure in another week or so I won't be able to stop her from waving to everyone!!

I took some pictures and video yesterday, but haven't had the chance to get them on to my computer yet - we'll get them up soon!

Swimming and Talking

Molly continues to get "chattier" by the minute. She has been making lots of different D sounds. We think we have caught her calling Jim Dada, but we'll wait for more consistency before calling it officially.

She is loving her books and flips them over and over and over to look at the front and back and talk to them.

We went to the local pool last week and things went quite well. I tried it once when she was a few months old and things weren't going so well and hadn't wanted to go back. I decided to give it another chance and I'm really glad I did. She had a good time looking at all of the people and enjoyed the warm water. We went straight to pool side and I changed her in an inflatable bathtub, which worked quite well. I'm going to try and make this a weekly activity - it is so good for her muscles and bones. I will try and take some pictures one of these days.

Jim and I carved pumpkins last night and I have included a picture for your entertainment. I hope you all had a great weekend!

Kisses for Mom

Molly had her 9 month check up today and is continuing to hug the third percentile growth chart - hooray for being on the growth chart :) She now is weighing in at 15 lbs. 6 oz. She has been eating more lately, so I think she is starting to hit a little growth spirt... we'll see. The pediatrician noted that all 4 top teeth are almost through - I knew that 2 were on the way, but 4 is even better :)

Molly's new trick is that she has started "kissing" me. I wasn't sure what she was doing last night, but Jim noted that she was trying to give me a kiss. She will now do it on command (if the spirit moves her). It is ADORABLE and definitely a nice milestone for me.

It was nice to get reassurance from the pediatrician that she is on target for her milestones in the verbal/social department.

We will work on downloading the pictures from the pumpkin party.

Pumpkin Party and A New Video

We had a nice weekend here in NC. Yesterday was gorgeous. We went for a nice walk and got the house in order for a party today. We had some neighbors and some of Jim's coworkers over for a pumpkin carving party and it was a big success. I even had time to carve a pumpkin, which is a big accomplishment being the host and having a baby to boot.

It is hard that Molly is, in some ways, a "bubble baby". There needs to be a barrier to prevent kids from getting too close. I know that this is a problem that is going to get worse before it gets better, but hopefully with some direction we will have some kids that will be able to get close without causing harm. I know when Molly and her peers are older this will be less of an issue, but it will be a major challenge in the next few years. We put her in her chair and put her tray in front of her, which worked perfectly to allow kids to get close without being within reach. Molly had a ball at the party and loved having so many kids around, as well as all of the attention she received.

There is a new video of Molly in her seat "chatting" and playing.

A cool new chair

Good morning, I hope you all had a nice weekend. It is finally starting to cool off down here - we are loving the crisp Fall air. :)

Jim's parents picked up a special chair/stroller for us in Kentucky that someone was donating. The seat itself is a lot like that of a wheelchair. It provides great positioning and support for Molly's spine and she seems to be quite happy in it. It also came with a tray that allows her to play with toys and books in a new way. I am very excited about our new gear. It is called a kid-kart and apparently they can run as much as $6,000 new - YIKES!! A vendor came on Thursday and adjusted it to fit her exactly.

There is a new video (CLICK HERE) of Molly up in her crib on her stomach. She is getting to be quite active with her rolling. She rolls/wiggles around to get to various toys on the floor. So much for being able to turn our back for a minute or two!

She is getting more and more "verbal" these days with lots of "dee dee dee" and "da da da" etc. It is adorable. I think we are close to her understanding waving and saying hi. We are having trouble differentiating what she is doing on purpose, vs. what is merely a coincidence. She is getting stronger and "smarter" by the minute. It is fun to show off her new tricks to Jim when he comes home from work :)

Home again, Home Again... Jiggity Jig

We are home and all is well. We had a rather uneventful hospitalization and other than being a bit sleep deprived we are all doing well. Molly was a trooper as usual :). She wore a hat to keep the IV from her busy little hands, which worked quite well.

There are 3 new videos:
Click Here for a video of her on the floor playing,
Click Here for a video of her sitting for the first time,
and Click Here for a video of her in her highchair banging cups.

She is developing so rapidly these days. She is doing something new almost everyday. Such a busy little cutie :). She is now rolling completely over from her back to her stomach, which I have been eagerly waiting for her to do - hooray for Molly!

Infusion #6

If all goes according to plan, we will be heading to the hospital today for Molly's infusion. We shaved her head this morning in preparation for the IV and it went much better than it does in the hospital. We also got some Emla cream, which numbs the area, and I'm hoping that will make the IV less of an ordeal for her as well. We are working hard to improve this experience each time. Hopefully we will have less tears with each infusion. She is a very good patient and once the IV is in she is pretty much unfazed by it. What a little champ! Here's to an uneventful night.

Everything is OK

Hey, some of you might have been watching/reading the news and seen that there is a chemical fire in Apex, NC. The fire is at a chemical storage facility and has caused them to evacuate 17,000 people from the area. We are only a few miles from the evacuation zone and decided to pack up and get out of the area, at least for the day.

It is raining, which should help with air quality, but we would rather be safe than sorry. We are staying at our friends several miles away and may or may not stay the night with them - THANKS JEFF AND CASEY!!

It seems that there is nothing to be worried about, but with Molly being so young we wanted to play it safe. We will keep you posted if things change.

On another front... Molly has finally grown a little and is in 3-6 month clothing - way to go Molly!!

New Video

Some photos for the fans :). There is also a new video. CLICK HERE

Things are continuing to go well. She is happy and looking so good. Her legs are looking SO much better than what they were like in January. She has come so far. We are scheduled for her infusion next week. Thank goodness for that Pamidronate!

Caught on Film

Here are some pictures. Sorry it has been a little while!

She is continuing to do well and seems to have new "tricks" everyday. She is continuing to work towards waving and has started grabbing things with her index finger and thumb. According to the books she is on track or beyond with everything except sitting and standing. What a little Champ!