Exhausted, but doing well

Molly has been keeping us very busy these last two weeks. She is crawling all over the place and is into everything! We are at a very challenging phase. She is very active, and way to young to be told to be careful. We have had a lot of close calls. She is pulling up on her knees on everything.

She has had 2 new, minor, fractures in the past couple of weeks. She was playing at her plastic kitchen and fell into it and fractured something on her sternum and possibly her left arm. A week later she pulled to her knees in the kiddie pool and fractured something in her left Tibia. She has not wanted to stand for more than a few seconds at a time since hurting her leg, but it has not slowed her down with her crawling at all.

There has been so much going on . We have been continuing with our water therapy twice a week on our own and then once a week with a therapist. We met with a wheelchair rep recently and talked about what will be best for Molly and got some new ideas to research.

In the past few days Molly has started singing along to "Row, Row, Row Your Boat" and the "ABC's" and it is adorable! Molly now has her first pair of shoes, which is also a big step. We are so hopeful that her leg will heal soon and she will be able to stand for longer periods again.

We think our insurance woes have been fixed, but I won't feel confident until she has her next treatment and the bill goes through. All we had to do was have the home health agency resubmit it with a different code - we'll see if that was really all we needed!

She continues to be absolutely adorable and a ton of fun. She is also changing and learning more and more by the hour.

We went to Gatlinburg, TN a couple of weeks ago and met 3 other OI families there and had a really wonderful experience. There was a little girl who was 5 and only learned to walk last year. She was doing remarkably well and it was great to see all of the things she was able to do. She went go-carting and down a raft on a water slide and was able to play with the other kids quite well. It was so nice to be around families that know what we are going through. We learned a lot from them and now will have other families to get together with for a lifetime. It will be wonderful for Molly to have other kids to get together with to feel "normal" for a weekend.

My brother came to visit a couple of weeks ago and had a great visit. There are some pictures of him and Molly laughing up a storm. He really loves being an uncle and it was fun to see the two of them together.

I am having a hard time finding time to accomplish much of anything at the moment (including blogging), but I am hoping we will come up with some ways to make life a bit more manageable. My friend came over for the day today and it made a BIG difference having another set of hands available to get things like mealtime and bath time done. I'm not sure what our long-term solution will be. We have received a denial letter for the state program we applied and now have to appeal the decision in person at a hearing. The case-worker that came for the evaluation strongly suggested that we move forward with the appeal, which gives me at least a little bit of hope.

There are lots of new pictures and a few videos for you...

Here is a link to photos for ages 18-21 months: CLICK HERE

Videos:
Molly Dancing (a few weeks old)
Molly saying most of her words
Foot to mouth
Molly saying More and Noodle

Standing for the First Time!!

We weren't sure she would ever be able to stand, so we are SO excited that she has met this milestone! She has come so far since her surgery and we are so happy. She stood for the first time on Monday and has slowly been standing more and more since. I can only move my hands away for a few seconds, but she is getting better and better at it. I think it is only a matter of time before she begins pulling up to a stand on her own - YIKES!! Things are about to be very different in our world!

We are just so happy.
This is another little boy's walker that we tried Molly out on...


The computer is a BIG motivator right now (Sesame Street games :) so we use that to try and get her to stand for longer, which works pretty well...

A Great Success

We had our North Carolina OI gathering Saturday and it was a big success! It went far better than I would have ever imagined. We had 9 families here and everyone seemed happy to get together. We are exhausted after having so many people in the house, but we are so glad we got everyone together.

There were so many kids with OI here and I think they all really enjoyed being around other kids like themselves. There was a 7 year old girl here who seemed especially excited to meet other kids with OI. Molly got to play ball with some of the bigger kids and really seemed to enjoy that :). There were a couple of older people in power chairs that came and Molly was instantly comfortable interacting with them, which was fun. I will include a link to a folder of photos from the party. Click Here to see the pictures from the party

Here is a picture of us wishing Alexi a happy birthday.
In front around the table from Left to Right: Becky, Tabytha, Aubrey (no OI), Amanda, Meghan, Alexi (birthday girl), Avery, Aidan (no OI), Alec (no OI), Devin (no OI), Max (no OI). In the back row from Left to Right: Connor w/ mom, Abby w/mom, Molly w/Jim :)


Here is Meghan (4 years old) showing off some of her ADORABLE personality, with Connor (14 months old) in the background - notice the toy disaster thanks to so many kids!!


Becky (21), her mom Grace, and Amanda's Mom Marcy:

Max (no OI), Tabytha, Rob (Amanda's Dad), and Amanda (10):

Connor w/Mom, Abby (6 months old) w/Mom and Molly w/Jim:

Amanda, Aubrey (no OI), Meghan, Chloe (7), and Tabytha playing ball together on the floor:

A Good Report

"I didn't put the marker in my mouth" :)


This is the first time I asked her to smile for the camera and she actually did it!

We went to UNC today to meet talk with the metabolic dentist about Molly's teeth. I was prepared for the worst, and have been anxious about the appointment all week. He noted that her bottom two teeth are wearing down, but not to the point that he is concerned as of yet. He also said that the nerve recedes faster than the tooth wears down, so he did not feel that they would be painful even if they wear to the gum line. Whew! It does seem reasonable for us to start saving for her teeth, but hopefully we will be able to wait until all of her baby teeth are in (sometime after 2 years old) to do it. The goal is to wait and do them all at once because she has to go under general anesthesia so we don't want to have to go through that process too many times. Insurance should pay for the anesthesia and hospital portion and dental may pay for the capping, but from what I've heard that is not likely. It cost somewhere between $5-6k, which is better than I had heard, but still A LOT of money!! Even still I walked away feeling better than when I walked in. We are going to research finding financial assistance and hopefully will find some resources before she needs the work done.

We are still battling with the insurance company regarding her Pamidronate coverage. We don't seem to have made the right contacts, which I think is a major part of the problem. Most insurance companies assign you a Case Manager, but so far we haven't been able to get this with United Health Care. They have been paying for most of our requests in the past year so we haven't been overly concerned, but now we are scrambling to get this resolved without a lot of help from them. We are starting to look into ordering her first wheelchair and from what I understand it will take 3-5 months for them to process and approve that, so we are about to learn all about how to "work" with them.

We are also getting ready for our OI gathering on Saturday. We are so excited to get so many families together. It should be fun and educational for all of us.

Jim will be working to get some new pictures (and possibly video) up online soon.

Little Miss Smarty Pants

Molly is now officially a toddler! She is everywhere and into everything. She is getting more advanced by the hour. It is amazing to watch. We put on a "Baby Einstein" video tonight and I was amazed at how much she was saying and signing. She was saying "kitty", "bowl", "cup", "table" and a few others and was also signing for refrigerator and telephone. Her vocabulary seems to be going through the roof!

We have been using her "Star Car" (pre-wheelchair) the past few days and she is able to go several feet with it. I stand in the back to help steer and she can go all around the room. I think she is definitely close to being ready for her own wheelchair. It would be wonderful for her to be able to explore places that we go outside of the house.

Two of her bottom teeth are about half of how big they used to be. I hadn't been checking on them like I guess I should. We have an appointment to see her metabolic dentist next week. I am dreading the meeting because I am worried he is going to suggest we consider capping her teeth. From what I have heard this is a $10-$20k process and isn't covered by dental or medical insurance.

We also received a letter from our insurance company yesterday telling us that they consider her Pamidronate infusions to be experimental and will no longer be paying for the treatments. This makes my blood absolutely BOIL! This was after having no problems with 9 infusions that were costing them about 10 times as much as the at-home infusion. We have asked so little of them and I am infuriated that they can do something as cavalier as to send an impersonal form letter stating that the treatment your child so desperately needs will no longer be paid for. We are already working on collecting documentation to provide them with to show that Pamidronate is an accepted and necessary treatment for OI. The nurse in Omaha assured me that she has never encountered an insurance company that refused to pay for PAM treatments, which has given me at least a little peace of mind.

So it is definitely a mixed bag at our house, but I am happy that Molly is doing so well and developing so quickly.

We are trying to arrange an OI gathering here at our house the weekend after next and are happy to have had a better response than we expected. I didn't know how many families I knew, or at least knew of, until I started working on this. I think we will have somewhere around 9 families here - hope for good weather or it will be a little tight!! Most of the families seem really excited about the prospect, which is what I had hoped for. It should be a great time for everyone. :)

A Very Busy Little Girl!

Molly learned a new "game" tonight while crawling around on the floor. She was experimenting on the hardwood floors pushing herself around and then started wiggling around while on her back. Here is a video of her wiggling CLICK HERE

We have applied for a state program called CAP-C, which is for medically fragile children, and a nurse came on Friday for a home visit and to fill out paperwork. The program would provide us with a nurses aid 3 hours a day as well as 20-30 hours of respite care per month. It would also give her Medicaid as a secondary insurance. I am extremely excited about the possibility of this working out, but we are trying not to get our hopes up.

Molly has gotten extremely mobile and active in the past week and it is making for an exhausting day for both Jim and I. We can no longer turn our back or walk out of the room for even an instant. She was sitting on the floor playing while I was going over a typical day with the nurse and she flopped forward and began crying with a terrible cry. I rushed over and picked her up and tried to comfort her and tried not to freak out too much myself. We have learned that she responds to our reaction and if we get emotional it is hard to tell if she is hurt or not. It seems that in this case she was in a bad position, which either scared her, hurt her, or both. It was a frightening minute or two, but thankfully was OK, but made me aware of all of the risks that come with her being so active. It also demonstrated all too well to the nurse what makes taking care of Molly so different than a "normal" child. She promptly made some notes for our application that will hopefully help us to be approved. It is a long shot, but definitely worth applying for.

Life has become much more challenging as a result of her new activity level. She is WAY too young for us to be able to set any sort of limits or to try and plead with her to please not pull up to her knees using a ball or a wicker basket etc. I now have to put her into her high chair to do something as simple as go to the bathroom. I don't feel comfortable even going 20 feet away to the kitchen to get her a drink. I am not enjoying this new phase and I hope that we come up with some solutions to make life a little more manageable.

She is working hard on her verbal and signing communication and has added "please" to her sign repertoire and is making new sounds and "words" every day. She is extremely happy and fun and we are enjoying immensely despite our new found challenges. She absolutely loves music and will often dance to it unprompted.

Molly Standing (with some of her weight on my hand) and checking herself out in the mirror:


Molly at the new water therapy pool we found:


We have been working on having her "stand" on her knees for short periods with good success:

Mobile and Doing Well

Jim has been gone since last Monday and we are ready for him to be home! If all goes well he will be home just before Molly goes to bed tomorrow night.

My Mom and I had a good week with Molly and kept very busy. I came down with a cold that I seem to have passed on to Molly as well, which has made the week feel a bit longer. My Mom flew home Sunday morning and I am flying solo with Molly for the first time! I can't believe she is almost 17 months old and this was my first time going it alone - I've been lucky!

Molly has been getting stronger and more mobile by the day. She is now back to regular crawling (as opposed to her one-leg crawling) and has learned to transition from her belly to sitting and also out of sitting back to crawling. This was a big milestone and one I wasn't sure she would be able to do given her short arms. With the help of her physical therapist we put her into a "tall kneeling position" where her hands were up on a bench and she was on her knees. I was nervous the first time, but she tolerated it just fine. She can't kneel for more than 30 seconds or so, but I'm sure that will improve with time. She has scars on her knees, so this might be part of the discomfort in addition to using muscles she hasn't before.

On Friday we had Molly's first at-home infusion and it went very well. What a difference from an overnight stay in the hospital! Molly was able to be in her own house and even able to crawl a bit while hooked up to the IV. Her port worked well again and didn't seem to bother her a bit during the treatment. The nurse is very nice and seems to know her stuff, which makes me feel comfortable with the new situation. She became a bit hyper towards the end of the infusion, which is common with the medication. Kids often say that an hour or so into the treatment they begin to feel a lot better. I never would have guessed it could have such an immediate impact.

Dr. Plotkin had his last OI clinic this past week and is now officially finished seeing patients. I am so sad that he is making a change. This is a huge loss for such a small community. It sounds like there is an endocrinologist at the Children's Hospital that is going to take over Dr. Plotkin's position, but that is only a rumor at the moment. I am hoping that they will find a doctor to assume the position so that the clinic can continue. Time will tell.
We have been swimming A LOT. I think we were in the pool with or without a therapist almost every day last week. We have found a therapy pool that I can take her to for just over $5 a visit, so we have started doing that twice a week in addition to meeting with a therapist once a week.

I am exhausted by all of the therapy appointments we have been having and feeling a little down about how much time they take up. We have been meeting with her PT once a week, two different water therapy appointments (some weeks) and now we have a developmental therapist coming to the house once a week. I am hoping that the further we get out from her surgery the fewer of these appointments we will require on a weekly basis.

I am so happy with how well she is doing after the surgery. She seems to be feeling much better than she was even a couple of weeks ago. It is nice to see her mobile again.

She is also saying a few more words and trying to mimic new ones all the time. Most of her words sound nothing like what I'm saying, but I'm sure we will get there :) She now says: Purple, Pool, Woo Woo (for the dog), book, Teddy, Bye-Bye, Mama, Dada, Cah (car), Papa (papaya), Cacker (cracker), and the list is growing by the day.

Molly has been a bit crankier today, I think because of the cold, and bit me for the first time when I was cleaning her up after lunch. She bit so hard that I screamed out and then told her "No" at which point she burst into tears. As I explained to her that it wasn't nice and not to hurt me she grabbed at my face with her nails. She settled down soon after this, but one of my friends said... "welcome to toddlerhood". Uh oh, I didn't think it would start so soon.

All in all she is doing very well and doing more than I thought might ever be possible. I will post pictures and videos soon.

New Tricks and Toys

Molly is just bursting with personality and has been showing it off all week. We borrowed our neighbor's little push car to see if it would be good for Molly. It is PERFECT for her and she loves it. We walked in the neighborhood and each time we would stop she would sign "more" to get us moving again. She also wiggled and bounced in her seat with pure delight - very cute! We rushed out to the store today and bought her a pink one :)

We also had some fun with her little toy radio that has a microphone. Here is a video of her with my Mom CLICK HERE

My parent's are both here for today and are thoroughly enjoying our little girl. We went to the driving range this morning and they took turns driving her around in the little car, which I think both the "pusher" and the "pushee" enjoyed immensely.

My Dad heads back to Maine in the morning and Jim is heading to CA for a week on Monday. My Mom will be here until next Sunday, so I'll only have a couple of days on my own before Jim is back.

Molly is scheduled to get her infusion on Friday, so assuming they do in fact have the orders right this time she will receive her first at-home infusion. This would be a big step in the right direction for us, so we are very hopeful that it will be a success.

Some Ups and Some Downs

Molly is doing very well and seems to be getting better with each day. Today for the first time she transitioned from sitting to crawling on her belly without any assistance - a big milestone for us! She also started trying to put some weight onto her left leg (her good leg) while on all fours. She has been crawling with her left leg and dragging her right to get herself a few feet at a time, but has been getting rather frustrated by her difficulty moving. She seems to be doing better and better and I'm sure will be back to crawling in no time.

They came to do her infusion here at the house on Sunday, but the orders weren't right, so we had to postpone. They came and flushed her port on Tuesday for the first time and that also went well. She has to have her port (an IV access that is a "button" under the skin) flushed every four weeks to prevent a clot from blocking it off. We somehow lost track of time and it had been 6 weeks by the time the nurse came. I was anxious to see how it went and was relieved when it went so well. The nurse said it was well placed and easy to access :). In the next several months she will train me on how to flush it and then I will be able to do this part on my own.

I emailed Dr. Plotkin, the endocrinologist in Omaha, to clarify Molly's Pamidronate orders since they weren't correct. He wrote back with the information we needed and also shared that he is moving to the east coast and will no longer be seeing OI patients. We are CRUSHED to say the least. It has been an emotional few days trying to think about who we will turn to now when questions and complications arise. He is an AMAZING and very bright doctor. He is wonderful to work with and clearly has his patients best interest in mind. We had been searching for a doctor that we respected and could count on for good advice regarding Molly's overall care and finally found that in Dr. Plotkin. The protocol he has designed seems to be a perfect fit for Molly and now we are not sure how to proceed. He is the only one in the country that uses this protocol and we are not sure if someone else is going to adopt it or not.

There are only 3 centers of excellence for OI care in all of North America: Omaha, Maryland (Kennedy Krieger), and Montreal Shriner's. We have already gone to KKI (Kennedy Krieger Institute in Maryland) and did not feel it was a good match for us. We hhttp://www.blogger.com/img/gl.link.gifave started the application process for Montreal, but put it on hold once we found we were happy with the care in Omaha. I think we will now have to reapply to Montreal, but they require that you see a local Shriner's Hospital first and do not accept all OI applicants. As of March we finally felt like we had someone to turn to when issues came up. I am overwhelmed to be losing this short-lived peace of mind.

The clinic in Omaha is going to continue to run, so we will at least still have Dr. Esposito (the surgeon) for that aspect of Molly's care. Thank goodness for that! I can't imagine having a better experience with any doctor than we had with Dr. Esposito before, during and after Molly's surgery.

The Home Infusion company says that they have new and corrected orders for Molly's Pamidronate, so we have tentatively scheduled Molly's infusion for next Friday. I am hopeful that things will go smoothly and that this will be a much better option for all of us than going to the hospital over night every 8 weeks.

New Videos:
Molly uses Maracas for the first time CLICK HERE
Molly draws a picture CLICK HERE

A Good Report From Dr. Esposito

Dr. Esposito called last night to discuss Molly's X-Rays. He thought that everything looked like it was healing nicely and seemed happy with her progress.

She is starting to crawl with her left leg, but not her right, so she is doing a combination of dragging herself and crawling. She has only moved a few feet up to this point, but I think she is going to begin to be more and more mobile in the coming days.

We are supposed to let her do things at her own pace as far as position and mobility at this point. He felt that she would be feeling a lot better closer to the 8 week point.

Her right leg isn't able to completely straighten at this point, so we are going to talk to the PT and OT about making a straight splint to put her leg in to help stretch her muscles and ligaments.

There are 3 new videos that Jim took while I was away.

Here is a video of Molly wanting to be tickled CLICK HERE

Video 2 is of Molly talking CLICK HERE

The last video is of Molly getting the hang of her Star Car CLICK HERE

A Wonderful Husband and Father

Molly is doing very well.

I drove to CT on Saturday and left Molly for the first time. I headed out before she woke up and I thought I would fall apart when I left, but I guess I was ready because I felt fine heading out on the road.

Molly and Jim had a great 4 days of bonding and she didn't seem to notice or care that I wasn't there, which was good. It is nice to know that I can go somewhere again and she will adjust to the situation without any problems. Jim did a wonderful job and took care of all of the aspects of Molly's care like a pro. I am so lucky to have such a wonderful husband that can take care of both Molly and I so well. I think they both had some great bonding time and I know I benefited greatly from my time away.

I had a great time in CT with my whole family to celebrate my Grandparent's 60th wedding anniversary. It was good to see everyone and it was nice not having to worry about anyone but myself for a little while. I also visited my friend Bobbi and got to meet their new little boy, Logan, who is 7 weeks old as well as visit with their 3 year old Sam.

I drove back yesterday and was worried about how Molly would respond when she saw me. I have heard that sometimes kids will give you the cold shoulder after you have been gone for a while, but fortunately Molly was happy to see me and let me pick her right up.

Molly is still not crawling. We are waiting for Dr. Esposito, her surgeon, to receive her recent X-Rays so that we can talk about how she is doing. We're not sure if she isn't crawling because something is bothering her, or whether it is just going to take her some time to become mobile again. Her right leg still seems to be her weaker leg at this point. Last night she tried to crawl forward a few inches, but would only get up on to her left leg. We will wait to talk to Dr. Esposito to figure out what is going on there. Jim and I are still trying to prepare ourselves that there is a chance that Molly simply won't be able to stand. Her right leg is a bit shorter and still has some bowing, so we will just have to see how things go as she continues to heal and gets stronger.

There is a new video of Molly on the microphone toy




Amanda (our 10 year old neighbor with Type III OI) came over while I was away to play with Molly and they seemed to have a blast together. Amanda is wearing a "Wee Walker" because of 2 Tibia fractures. She and Molly seem to have a special bond and we are fortunate to have them so close by.

Splint Free and Loving It!!

We went to see our local orthopedist yesterday and they took some x-rays. He said that what Dr. Esposito accomplished was no easy task and thought that she was healing nicely. He didn't think the splints were necessary any longer and we were very happy to hear that! She hasn't had the splints on since yesterday afternoon and seems to be doing quite well.

We went and saw her PT this morning and she also thought that she is doing remarkably well for all that her legs have been through. We need to work on straightening her right knee and start encouraging her to reach over her legs and work towards crawling again!!

I put her in the "Star Car" (by Tash for those that might need one) today and she moved herself about 3 feet, which I thought was a big accomplishment. She doesn't love using it and would prefer that I bring her whatever it is she wants, but we will be working on getting her to start moving and getting things for herself as much as we can.

She has been trying to copy words that we say and we have been having a fun back and forth with different words. They don't sound exactly like the word we say, but she is getting there. Here is a video of her trying to say"Hi There" CLICK HERE I am hoping we will have more of these videos with better accuracy on her part in the coming days.

I am going to go on my first overnight trip away from Molly this weekend. It is my grandparent's 60th wedding anniversary and the family is having a big celebration in CT on Sunday. I am excited to have a break, but nervous to be so far away. I am sure that she will be fine and she and Jim will have a great time together, but I am terrified nonetheless. I am planning on driving up on Saturday (a 9 hour drive) and then driving home on Tuesday. YIKES!!

I am looking forward to a few days away. I know that usually the parent's worry and the kids do fine, I'm just hoping that will be the case for Molly. I haven't ever been away from her for more than 12 hours and this will be a big jump.

I feel so fortunate to have Jim not only willing to take on this big responsibility, but also encouraging me to go and even convinced me to return on Tuesday instead of Monday! Molly and I are very lucky girls to have such a great Dad/husband.

3 New Videos...

Molly Laughing CLICK HERE

Molly Babbling CLICK HERE

Molly in her "Star Car" CLICK HERE

Lots of Good Stuff

I am very excited... we went to our PT today for the first time in months and had a great visit. She was happy with Molly's current range of motion, which is a relief. She also found a stander (a big piece of equipment) that is small enough for her. We have to wait for the x-rays to give it a try, but it looks like it will work well. It will be nice to be able to borrow this big and expensive piece of equipment rather than having to fight with our insurance to get her this $1200+ thing that we won't need for that long of a period.

They also had a pre-wheelchair called a "Star Car" that we had tried her in months ago and was laughably too big for her. We put her in it today and she was pushing herself forward (only a few inches) within a few minutes. This was a huge accomplishment in my eyes!! She hasn't been mobile in almost 2 months, so this could be a great tool for her at the moment - hooray! They are letting us borrow it and we now have it at the house!! I can't wait to get her into it tomorrow. We will be sure to take picture and videos to share with you.

I also noticed a new "trick" of hers while we were there... The phone kept ringing in the room and I noticed that she kept putting her hand up to her ear. After about the 3rd time I was sure she was pretending to answer the phone - too funny!! Who knows if she has been doing this at home without me noticing, but I definitely noticed it there today :).

This has been a GREAT day with big steps forward for Molly - HOORAY!

Our Little Houdini

Look Ma, no splint!


Jim went in to get Molly this morning to find her "snuggling" with one of her splints. She managed to get it off completely in tact. We have no idea how she managed this feat, but she seemed quite proud of herself!

She seems to be feeling better than ever with or without her splints on. We will be going in for X-Rays next week to look for callous formation at all of the fracture sites. If things look good we might be going to smaller splints, or no splints at all!!

Miss Personality...

Molly's X-Rays

Here are copies of Molly's X-Rays before and after surgery. Quite a difference! Sorry if this is too much info for some of you out there, but we thought many of you would appreciate seeing the transformation.

Here is the before X-Ray (you can click on the picture to make it bigger):


Here is an X-Ray with the rods (you can click on the picture to make it bigger):


Dr. Esposito, the surgeon, broke her right femur (pictured on your left) in 3 places and the Tibia in one. He broke her left femur in two places and broke both the Tibia in two places and Fibula in one (shin bones). In hindsight, Dr. Esposito wishes that he had broken the Fibula on the right leg as well. You can see that it is bowing and will pull on the rod a bit. He said it was not worth going back in to correct. The rods in her Tibias will probably only last 12-18 months, so whatever he didn't correct this time he will the next go around. It is certainly worlds better than it was before surgery.

We will be going on for follow-up X-Rays locally in less than 2 weeks to see how she is healing.

The Process Continues

Molly is doing better each and every day. She is now moving both legs well. She can lift them all the way to a perpendicular while on her back. She is rolling (some), but still isn't mobile in anyway. I am hoping that she will begin to work on crawling, but that might take a bit more healing time. We shall see.

She has a small pressure sore forming on her right leg. It doesn't look like much right now, but I'm hoping to minimize it as best I can and hopefully prevent it from getting worse.

I gave her a bath yesterday that went well until I picked her up. I don't know whether the towel was the problem or something else, but it was difficult to hear her cry in pain. I know that all we can do is try and minimize her pain to the best of our ability, but it is still difficult to hear her cry in pain, especially while I am the one doing something with her. I know that some of her crying is just because she is a normal kid and that she gets fussy like all kids do, but it is hard to separate when she is being fussy from when she is hurting. There are certainly times when I know it is one or the other, but there are lots of other times that I just don't know what the problem is.

She is getting more and more "talkative" by the minute babbling at her toys etc. It is absolutely adorable! She is gushing with personality. She is a fun little kid and I am enjoying this new means of interaction.

We have less than 2 weeks until her X-Rays and hopefully it will be soon after that that we will be able to take off the splints - HOORAY!! I take them off a couple of times a day to work a little on moving her knee and foot around and that has been going well with not a lot of complaint. She also doesn't complain when I put them back on, so my guess is that she still is liking having them on. She is quite good at letting us know what she does and doesn't like (in her own way), so I'm sure she will let me know when she doesn't want the splints on anymore :).

On another note, a family that adopted a little boy with severe OI has been nominated for an Extreme Home Makeover with ABC. If you have a moment to sign the petition I know that the family would greatly appreciate it. We met this little boy and his family at the conference. He is 7 and has at least as much personality as Molly. He is happy most of the time and has been through a lot. He fractures every month still and has a lot of deformity. He has been nominated by Easter Seals to transform their home so that Jake has some independence. The adoptive family has had him since he was less than a month old and already had 6 grown children of their own. Here is the link CLICK HERE to sign the petition It really is an easy form to complete (30-60 seconds).

Healing and Happy

Molly has been happy and seems to be doing quite well. She has started moving her right leg all around and can lift it all the way up while on her back. She still isn't moving her left leg, but we're hoping that this will improve with time. We got to remove her bandages on Friday and all of her incisions look good. There are a lot of them (around 12 on her legs).

We got to give her first bath since before surgery yesterday and she seemed to enjoy it. She was a little uncomfortable when I took her out (without her splints on), but for the most part it went better than expected.

Jim's Mom was with us for over 2 weeks and left on Saturday. It was nice having an extra pair of hands this past week and it is an adjustment today being home with her by myself for the first time since before her surgery.

Videos Worth Watching

Here is a new video of Molly spoon feeding herself for the first time CLICK HERE

CLICK HERE to see a video of a 5th grader with OI (Type III) that is going to the National Spelling Bee. It is a great interview. I don't know this little boy, but really enjoyed seeing the video and hearing what a positive outlook he has on his life.

Making New Developmental Strides

I had a meeting with Early Intervention today to discuss Molly's developmental goals and successes. As I was telling them that Molly hasn't been doing a lot of babbling she started babbling up a storm. She has continued to babble all day, hooray!

The OT had me working on a bunch of milestones with Molly, with very little success. I tried working on some of them today and she got it on the first try. It is nice to have these small successes. I was feeding her yogurt and she started having a tantrum, I couldn't figure out what she was upset about and finally determined that she wanted the spoon. She started feeding herself with a surprisingly high success rate. After a little while she decided that it was easier to just stick her hands in the yogurt and eat it off her hands, so she is obviously not quite ready to spoon feed herself, but we are one step closer.

It was hard meeting with the OT week after week and having them set goals that involved me working on skills that Molly had no interest in like stacking blocks, putting things into a container, etc. It is nice to finally have some success without a lot of tedious drilling.

I am not sure if these new found successes can be attributed to her just being older, or whether the pain medication is allowing her to progress and do the things most kids are doing at her age.

I am hoping that her progress will continue after we stop the pain medication.

Today was a great day in Molly-Land.

Happy pictures of Our Little Girl

Hooray! She fit in the swing with her splints on...
Here she is hamming it up for the camera. A bean bag chair has been a great thing for sitting post-surgery:

Here's a picture of her with the splints off and talking on the phone... Can you tell how much straighter her legs are?

All are Feeling Better

Molly has been napping better the past two days and she slept through the night. We spoke with another OI Mom (with 2 kids with OI) and she suggested that we needed to have Molly on more pain medication. That seemed to help her last night, so we will be scheduling medication throughout the day for the next several days. I am feeling terribly that we should have been continuing with her medication the past several days.

I know it is a learning process, but I wish that Molly wasn't impacted by our mistakes.

Jim finally seems to be feeling a little bit better. This is the sickest I have ever seen him. Terrible timing and awful for him. We are just hoping that none of the rest of us, especially Molly, come down with it.

Slow, but steady progress :)

Restless, but Healing Well

Molly's legs are doing well and she has even started moving her right leg, splint and all.

She was up crying every 45-60 minutes all night long. This restless night made for a a somewhat irritable girl today. Tonight has been a similar night with her up crying every 30 minutes or so. We are exhausted. To add more stress to our lives Jim seems to have come down with a horrible stomach bug and has been getting sick since coming home from work.

I am SO tired. I am hopeful that Molly will settle in for the rest of the night and I can get a few hours of uninterrupted sleep.

I am so happy that her leg is healing so well, I just hope we can get her to get some sleep. I am also hoping that she won't get whatever Jim has.

I'm sure this is just a small bump in the road, but I sure hope it is behind us soon.

On a good note... she fit in her swing with her splints on and had a blast out swinging today - HOORAY!

Good Night :)

Home Again, Home Again :)

Hooray! We are home after a long day of travel and are looking forward to a good night's sleep.

Molly was up off and on all night last night, so the 3 of us got very little sleep. I think she is starting to feel better and is not liking having the splints on that are limiting her movement.

She went to bed early tonight, but has already woken up half a dozen times crying, so it might be another long night. We are hoping she just needs to get back into a regular routine and then things will be smoother during the night.

We can't say enough good things about our experience at Children's Hospital in Omaha. The staff was amazing. Dr. Esposito is such wonderful man and did a phenomenal job on Molly's surgery. I feel so fortunate to have someone like Dr. Esposito as a part of Molly's care. He is very good at what he does and clearly cares a great deal about his patients. He really seemed to enjoy spending time with Molly and even wanted us to send a picture of her to him. What a difference a good doctor makes.

If you have a child with OI and are reading this blog, I would like to encourage you to make a trip to Omaha if you can find a way for your insurance to pay for it. I assure you that it is worth the battle. We have been to a lot of doctors in the past year and hands-down, Dr. Plotkin and Dr. Esposito are two of the most amazing doctors we have had the privilege of meeting.

We briefly met with Dr. Plotkin yesterday morning to touch base about Molly's infusions and are going to work on doing them at home. This would be a huge improvement over spending the night in the hospital!

I'm not sure I have documented exactly what they did in surgery and thought it would be good to jot down while it is still fresh...

He started with her right femur (the more bowed of her femurs). He used an F-D rod, which is a telescoping (or growing) rod. He had to make 3 osteotomies (breaks) in her femur in order to insert the rod properly.

He then went on to her Tibia and inserted a "wire" (thin rod) in through the top of her Tibia made 2 osteotomies (breaks) and removed a portion of the most bowed part of the bone.

He then did the same to her left leg, but with fewer osteotomies in the femur.

She has bandages on the incision sites and will have those on for another 9 days. She has splints that go up the side of her leg and are held on with Ace bandages. She will need to keep these on for another 4 weeks. We will take the splints off a couple of times a day and do very small movement of her leg and foot to keep things from getting too tight. We have been told that as the kids start to feel better they will start to move around with the splints still on.

I'm sure that it will be a matter of days before Molly is trying to get around on her own. We are going to try putting her on her belly with the splints on in the next couple of days, it will be interesting to see how that goes, I don't know what to expect.

Out of the Hospital and Heading Home

We checked out of the hospital yesterday afternoon and all is going relatively well. It has been VERY nice to sleep in a real bed and to be out of the hospital environment.

We are still trying to figure out Molly's pain medication dosing, but she is doing phenomenally well. We have snagged her splints a few times on her car seat and stroller straps, which has been upsetting for Jim and I and painful for Molly. We are working on getting better at getting her in and out of things to minimize this problem, but it is so upsetting when we are trying our best and cause her pain.

She is down to 1-2 doses of pain medication (mostly Motrin) at this point, which is remarkable for so soon after such a big surgery.

She is more and more interested in communicating and is using new signs and accurately answering questions with yes and no. She has had a few complete meltdowns, which is new and is very upsetting because we are not sure if it is just normal baby frustration or if she is in pain. PLEASE start talking soon!

We are heading home tomorrow and are SO excited to be back in our own place. I have been doing dishes in the hotel sink and I am looking forward to the comforts of home. Keep your fingers crossed that we make it home without incident.

We have been even more anxious than usual with Molly in her even more fragile state. Her feet stick out beyond her stroller and we are constantly on the defensive as people go about their day and get too close for comfort to Molly and her healing legs.

We will be sure and get more pictures and video up once we get home and settle in.

Thank you to everyone for keeping in touch and wishing Molly well.

Remarkable Progress :)

I got to hold Molly for the first time since she went in for surgery:

This is Molly signing that she would like to swing :)

Here is our happy little girl:

The PT came up and encouraged us to get her in a sitting position... I can't believe she's sitting less than 48 hours after surgery!!


We are 48 hours out from surgery and Molly is doing REMARKABLY well!! We have had to give a lot less pain medication and she seems to be feeling better by the hour. When she has gotten fussy it is hard to know if it is just because she's fussy or if she is in pain. We have tried to err on the side of medicating rather than allowing her to possibly be in pain.

I think that we will be able to dial down her pain medication more and more in the coming days and it will be easier to know if she is in pain or just fussy.

The surgeon has come in to check on us each day, which has helped to put my mind at ease.

Her left foot is rotated in slightly and we are hoping that in time it will get better than it is presently. Dr. Esposito said that he could do some manipulation to help that, but he said he didn't think we wanted to hear her cry. I think we will ask him to advise us about what is better in the long run. He thinks she will need to have her Tibias re-rodded in 12-18 months, so we can always aim to correct and improve things at that point. They are already remarkably better than before surgery and it is hard to complain about that.

She is starting to babble a little bit more, so we're hoping we are progressing closer to more words. She is now more consistently saying "mama" and "dada" appropriately as well as saying "woof, woof, woof" and "teddy", so her vocabulary is definitely expanding.

Pictures and video after surgery

Molly sleeping in our room right after the surgery.

















Molly showing first signs of being herself on Saturday afternoon
















Molly reading a book Sunday morning, feeling a lot better
















Look ma, no wires!

Video of Molly saying Mama yesterday: CLICK HERE

A Few Hours Sleep

We upped Molly's pain medication yesterday afternoon and that seemed to make a huge difference for her. She started to look and act more like the Molly we know. She started exploring her tubes and monitors and started pulling at her arterial line. I noticed some blood around the bandaging and called the nurses in. We were not aware of the risks involved with this line. We were told that had she pulled it out she would have started gushing blood like you see in the movies. She could have lost a lot of blood rather quickly. I did not need more reasons to worry, but we now had something new to watch.

The nurses were able to tape up the line more effectively and it has been much more stable since.

We all slept from 12:30 - 5:00 a.m. without waking up! I feel so much better!! Molly also got a solid block of sleep during that period, which I think has served her well.

Dr. Esposito came in this morning to check on us and saw a much more animated patient, which was a nice change. She is reading her books and playing with her toys and seems to be doing so much better.

We just had the nurse come in and removed almost all of her sensors and tubes - HOORAY! She can now hold her toys and books etc. This is going to help reduce her frustration and also reduce our anxiety as she gets more inquisitive about the tubes and bandages.

We're now down to her leg splints and bandage over her new port. they have also reduced her monitoring, so that must mean Dr. Esposito is feeling better about things as well.

Thanks for checking in on her and we will continue to keep you posted.

Sarah, Jim and Molly

A Long Night, but All is Well

We finally got to see Molly last night just before 7. She was so puffy from all of the fluids that I almost didn't recognize her. They had just given her some Morphine, so she was quite sedated, but didn't appear to be uncomfortable.

She was doing well enough that we didn't have to go to the PICU (Pediatric ICU), which was a nice surprise.

She was comfortable for the first couple of hours and then her heart rate increased and her breathing was more labored. It has been a roller-coaster ride with her pain medication. When we hit it right things are going fine, but when we are late or haven't given enough she was rather uncomfortable and cried out this quiet little cry (after being intubated during surgery). Around 3 or so this morning she came to and looked at me and seemed to register who I was for the first time. She looked and simply said "Da" (for Dad), so I woke up Jim and she was very happy to see him. He seems to have the magic touch when it comes to soothing Molly. It is so hard not being able to pick her up, but we know that will come.

She looks a lot longer with her "new" legs. It will be interesting to see how different she looks when we get to look at what is under the bandages.

Her temperature has been between 98 and 102.3, which is normal for post-surgery. Her breathing continues to be labored, which is an indication that she is still in pain, but seems to be doing much better than last night. We have stopped giving her Morphine for the time being and that seems to have made her feel better. Apparently Morphine can make you feel just dreadful. We're happy we had it for those first few hours, but we are now hoping to graduate on to different medication.

She has had some Jello today and a little bit of pears, but thus far has not been all that interested in eating or drinking. We're hoping that this will improve by tomorrow. She came to enough earlier today to actually play with a toy or two, which was a great sign.

I'm sure that tonight will be another rough one, but we are hoping that things will be going better by tomorrow.

Dr. Esposito, the Orthopaedic Surgeon, checked in with us today and showed us the films of her legs. Both femurs seem to be looking good and he is pleased with the outcome. Her left Tibia (shin bone) looks nice and straight, but her right Tibia has a little bit of a bow in it. He thinks that the bow he sees in the films shouldn't be too big of a problem and things are certainly worlds better than they were before. He did say that her bone was soft, but didn't give us any predictions for when to expect a need for new rods. For some kids they need rods within a year and other times kids can go several years without a problem. Most likely the Tibia rods will need to be replaced before the femurs, so at least the surgery won't be quite as extensive in the future.

Thank you again for all of your messages, thoughts, and prayers for Molly.

We will be working on posting pictures when we can.

Out of the Operating Room

Molly is out of the operating room and currently in the recovery room. It will be at least another hour before we will get to see her, but the surgeon has assured us that things went well and that she is doing OK.

He was able to rod all four leg bones, which was the outcome we were hoping for in an ideal world. We are anxious to see her, but can breathe a little easier knowing that she is in recovery.

According to the surgeon we have a rough couple of nights ahead of us, but by the 3rd day she should be doing better.

I can't wait to go and see her, but I am also quite apprehensive to see her in pain with lots of tubes and bandages. I know that in the long run this was the best thing we could do for her and we will have to keep that in mind as we go through a few difficult days.

Thank you to everyone for your emails, thoughts and phone calls. They have made today a lot easier for us and I know that Molly has benefited from everyone's thoughts and prayers.

We will continue to keep you posted as things progress.

Molly is in currently in surgery

Molly went in for surgery at around 10:45am central time. She is having a port installed first, and then she will have the rodding surgery next.

So far we are all in good spirits, and Sarah has a good feeling about everything.

Jim

[UPDATE: 12:10pm] The port surgery was successful with no complications, and Dr. Esposito has started the rodding surgery.

[UPDATE: 2:45pm] The right leg is finished, and went well. He is moving on to the left leg now.

[UPDATE: 6:00pm] The surgery is finally over. The surgery went well. Molly now has F-D rods in her femurs, and wires in her tibias. Molly is recovering now, and Sarah will be able to go in to see her in an hour or so.

We've Made it to the Big Day

Well, as someone reminded me. My goal was to make it to her surgery without a big femur fracture and we did it.

Molly and Jim both had a relatively good night's sleep. I didn't do quite as well, but still managed to sleep a little.

Molly is happy this morning and we are trying to enjoy every last minute with her.

We're trying to stay positive and think good thoughts.

Here's to a successful surgery and a good outcome for Molly.

Thanks to all for your messages. Thanks in advance for keeping Molly in your thoughts today.

As my Dad would say... "Stay Tuned" we will try and keep you in the loop via this blog.

Sarah, Jim and Molly

We made it to Omaha

(Jim - filling in for Sarah)

After a LONG day traveling on Wednesday, we have finally made it to Omaha. Snow in the midwest caused our flight to Chicago to be delayed by several hours. Our luggage managed to take a different flight from Chicago to Omaha, but we did recover it all eventually.

Just the anticipation alone for what is coming tomorrow is very stressful, but we're managing pretty well so far. Sarah is very happy that we came a day early so we could have a day here to prepare ourselves. My parents will be driving in from St. Louis to help provide relief later tonight.

The next update will probably be Sarah's Mom to keep everyone in the loop about the surgery.

Jim

Molly's Last Bath Before Surgery:

Packing Up and Heading Out

Ugh, we are EXHAUSTED!! We have had some long nights with her this past week or so. Jim worked until 12:30 last night. We are so very tired.

We are in the midst of organizing and packing up our things for our big trip. We have one suitcase and Molly has 3. There is just SO much STUFF to bring for an 8 day trip.

We will be flying to Omaha tomorrow, settling in on Thursday and then heading to surgery on Friday. I have been so busy getting ready I really haven't taken the time to stop and think about what I am getting ready for. I know I will have hours and hours to think about what we are doing while she is in surgery. There is no question that she needs the surgery, and there is no question that Dr. Esposito is one of the best, so that should help while we sit and wait for somewhere between 10 and 12 hours. The surgery itself takes somewhere between 6-8 hours, assuming that he is able to do both legs in one surgery.

We also got a call yesterday from the hospital. They were able to find a surgeon to do the port surgery, so she will also be getting a port on Friday. I think that this is going to be a good thing for Molly.

My Mom will be keeping the blog up to date while we are in Omaha.

We are about to undertake the scariest thing we have ever had to go through in our lives. Any emails would be welcome and encouraged. It is nice to read well-wishes when you are in such a stressful situation. I probably won't write back, but I assure you they will all be read and appreciated.

You can email us at: sksullivan8 ( at yahoo.com). Sorry for the funny way of writing the address, but otherwise we will get lots of SPAM for products and services we do not want.

Thanks in advance for keeping Molly in your thoughts this Friday.

Happy Easter!

We have had a rough few days here, but today was a good one!

She has been up crying off and on all night. This started on Wednesday night, so we're not quite sure what is the cause. It is hard to imagine what could be bothering her that is so much worse than her fractured leg. She was sleeping fine until Wednesday. We got very little sleep on Wednesday and Thursday night. She was up and crying every 20 minutes or so throughout the night. I gave her pain medication through the night, but it didn't help. She has been happy during the day, so it is hard to pinpoint the problem. We took her in to the pediatrician to make sure that it wasn't an ear infection or some other "normal" baby problem, but everything looked good. He did notice that she has several teeth coming in, so we're thinking this might be the cause of the crying. It is so hard to try and guess what is causing her discomfort. I am SO looking forward to her being able to communicate with us.

We did an Easter Egg Hunt for her today. We hid 3 Elmo eggs in her playroom and asked her to find Elmo. She was not particularly interested, but Jim and I enjoyed ourselves. We also "hid" food around the hall in corners for a Howie (our Pug) to have his own Easter Hunt - very funny!

Molly seems to be getting more interested in trying to communicate. She often signs "more" when we are doing something and she wants us to do it again. She does a lot of nodding and shaking her head (often, but not always accurate), which is adorable. She has started signing for "light" and "drink" (which look the same when she does them). Most of her signing looks similar so you have to guess based on the circumstances what she means.

We are working on getting ready for our trip later this week. We will be flying out on Wednesday. Her surgery is on Friday. We'll be checking in around 10 (Central Time) for surgery at 12. We are waiting to hear whether there is a surgeon that can add a port (a vein access "button" that is under the skin). That would be helpful to have for IV treatments and is a quick access point in the event of an emergency.

Last night I didn't wake up until 6:15, I am hoping that I will be able to sleep through the night tonight and more importantly, I hope Molly is able to sleep without crying out.

Happy Easter Everyone!

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