Teeth!!!

We have some exciting news... Molly has her first two teeth coming through (her bottom front two)!! They are coming through at the same time and we are quite excited. There are some challenges that come along with these teeth... they are brown, which means that she has Dentinogenesis Imperfecta (DI). DI often impacts the baby teeth more than the adult teeth, but it does mean that she will have brittle teeth and wear down easily. We will have more research to do to figure out what this will mean for us in terms of what she can eat and how we will treat it. We were told when she was born that there was a chance that she wouldn't have teeth at all, so we are thrilled that she has teeth at all!

My Mom has been in town this week and my Dad arrived on Friday for a visit. We had a wonderful time visiting. I dropped them off at the airport this morning (5 a.m.).

Molly is doing quite well and seems to have recovered from whatever was bothering her earlier this week. Who knows, it could have been these teeth that had her so upset! I can't wait until she can talk so I will know what is going on, I hate these guessing games!

Infusion #5

We are home from Molly's infusion. We are all exhausted, but glad that it is behind us. Molly was a model patient and was voted "cutest baby ever" by one of the nurses :). Her neck still seems to be bothering her a little bit, but she is almost back to her old self - hooray!

She is now weighing in at 13 lbs. 12 oz, which is huge in our book!

No Beds Available

It is not looking like we will be heading to the hospital today. There are more patients than there are beds at the moment, so we will have to wait. There is a small chance that something will become available, but it doesn't seem very likely. We have been advised that there may not be anything until the end of the week and even that is tentative. This is quite disappointing, especially because Molly is so uncomfortable. Simply moving her from her crib down to the couch is complicated and generally causes quite a bit of crying. We are going to have to start using codeine again and hope that it will give her some more relief.

The hospital beds are presently filled with kids who are sicker than Molly, which is an important reminder for us. I really hope that a bed becomes available soon so that Molly can start to feel better.

Thanks for checking in!

Fracture Today... Infusion Tomorrow

Molly seems to have a fracture of some kind in her neck. She woke up cranky and we noticed that she wasn't moving her head from side to side. She hasn't nursed well all day, but has still eaten her solid food. She has been quite unhappy and seems to be quite uncomfortable. It is hard to see her unhappy and not to be able to help more. I think we are going to have to go on codeine this evening, but hopefully it will only be for a short while. She is on the floor now playing with her toys and while she is a bit fussy, she still seems to be enjoying herself to some extent.

We head in tomorrow for her infusion - hopefully it will all go smoothly. We are beginning to get the hang of the routine. It has been 8 weeks since her last infusion and it seems that that is a bit too long. She generally gets them every 6 weeks, so I think we'll try for 7 next time and see how that goes. We have noticed that she has been quite fussy over the last 5 days or so, but we blamed that on teething. I think it is clear now that it is bone related and not her teeth.

Thank goodness for pain medicine and THANK GOODNESS for Pamidronate (her infusion drug). We have such a fun, happy, and active baby thanks to the help of PAM (as we have come to call it). Here's to a good night sleep for Molly (and the rest of us).

Molly the Bookworm

Molly continues to love her books and is now interested in holding and "reading" them herself. We had her eyes checked yesterday to make sure that all was well. The doctor was wonderful and was impressed with how attentive she was :). She has a stigmatism, which I also had, which should get better with age. She also is going to be near sighted. She will probably need glasses for the stigmatism (I did), but will hopefully grow out of them by the time she is a teenager. Fortunately, all is well for the moment - I can't imagine trying to keep glasses on a baby!

Molly continues to be doing well and seems to be working on her first two teeth (on the bottom), which is quite exciting. She has also started showing more interest in her meals and less interest in breastfeeding...seems like she is ready for a bunch of changes all at once. She is consistently rolling over and you can see a video of molly rolling by CLICKING HERE.

She has also been loving her new toy and has been kicking it like crazy. We have a video of this... CLICK HERE to see it!

Enjoy your weekend!

Adorable as Ever

What a cutie. She has been so happy she doesn't know what to do with herself. She has been squealing with joy!

Molly has now mastered rolling to one side. It is becoming difficult to figure out how to do "tummy time" now that she can so easily get on her back. A nice challenge for us!

We got out a new toy that moves and plays music when she kicks it. She is LOVING it!! I am nervous because she is SMACKING her feet against it over and over (and over) again, but she is having a ball. I have taken a video of it and will do my best to get it posted online soon.

Yesterday was my birthday and Molly was on her best behavior all day - a perfect present! We went out to lunch with Jim and bought some children's books for Molly as well. A good day! She is just so much fun these days, I feel so lucky to have such a fun and happy little girl.

Molly the Milestone Master

Molly is at it again. Molly has been working hard on "tummy time" and yesterday she learned how to roll from her stomach to her back all on her own. She has rolled a few times from her back to her stomach, but these seem to be more of a fluke than an accomplishment. She seems to have figured out the roll from stomach to back though. She rolled several times. We are quite proud! She is so strong and it is fun to see her so active.

We had a nice day with her yesterday including going to Jim's Company's picnic. It was actually cool enough to be outside for a little while, which was quite refreshing. I am looking forward to the weather finally settling down again so that we can go for walks and just enjoy the outdoors for more than a minute at a time.

Back to Plan A

We still have more to look into, but it seems we will be staying on the present treatment course. We spoke with Molly's current UNC doctor today and discussed switching to the lower dose. She contacted one of the doctors in Montreal about the lower dose and the stop study and after talking with him feels that we should stick with the Montreal dose for the present time. She has assured us that once the lower (Omaha) dose is published that we can reevaluate Molly's treatment and discuss what is best for her. After listening to what she had to say I think that it is in Molly's best interest to stick with the same dosing that she has had up to this point. So, we will be going in to the hospital on the 22nd for Molly's infusion.

Molly continues to be her adorable self and is getting to be a strong little girl. We have been working on tummy time and with my help she is now able to roll from her stomach to her back with minimal assistance!

The vendor came today to measure her for the new seat. I don't think we will have it here for several weeks, but I am looking forward to having a place for her to sit and observe things around her.

I am overwhelmed by the weight of this big decision, but I hope that we will continue to learn more and can make a more educated decision in time.

Infusion Plans

Well, we had a fun weekend with a very cute little girl. She is learning to make raspberry sounds, which is adorable. We went swimming this weekend and she cried when I took her out, so maybe she is just mad that we are getting out of the water. It is so hard trying to guess. Whatever happened last week seems to be water under the bridge, thankfully!

I have had an exhausting day today trying to figure out how to get the infusions done at home. I have been on the phone and the computer most of the day. Poor Molly hasn't gotten her usual amount of attention.

They cannot access a vein in the head in a home environment, and this is the only way we have had success with infusions. They suggested that we get a port, which involves surgery. I am nervous to have her put under for this. There is risk with any anesthesia and even more so for a baby like Molly. I would consider it, but only after exhausting all other options. I found a few places that can do infusions as an outpatient, but we would need a Dr. associated with a particular hospital in order to work. I'm sure it will all work out in the end, but it is a frustrating process for the moment.

We may just have to do one more at UNC and then get everything in place for the next one in October.

I am just so happy that she is doing as well as she is. She is getting stronger by the minute and is happy most of the time. She is tolerating "tummy time" and we do two 15-minute "sessions" everyday. She is getting better and better at pushing up and looking around and can do it for a good little while (30+ seconds) at a time. Gotta love little victories.

We met with Early Intervention today to discuss her progress. Our case worker was very impressed :). We have a vendor coming on Wednesday to measure Molly for a special, soft chair. We haven't had a place for her to safely sit, so it will be nice for her to observe her world in a more upright fashion. We will of course post pictures when it finally arrives.

"Be Prepared"

I was caught off-guard on Wednesday. Molly and I went swimming and had a wonderful time. The water was 92 and Molly LOVED it. At the end of our "swim session" she started crying. I got her out of the pool and she really started letting me know that something was not right. I was dripping wet and by myself and felt helpless. I dried off as quickly as I could so that I could pick her up and comfort her. She seemed fussy, but I wasn't sure that it was a fracture. I rushed home to assess what was going on. She started crying hysterically and I was pretty sure this meant a new fracture. I panicked and realized that I was not prepared and scrambled to call Jim and my Mom. I gave her some Motrin and just held her. If I moved at all she screamed. In the past, screaming with a change of position was further confirmation of a fracture. After 45 minutes of holding her and soothing her, mixed with her crying, she seemed to be better. I wasn't sure if this was because the Motrin had kicked in, or what, but I was happy to see her more comfortable.

It is hard to know what happened, but it seems that whatever it was she has recovered from it. I am happy that she is doing so well, but it heightens my anxiety for the next fracture.

Molly has been quite vocal these past few days and seems to be a little squealer :). I think that she is going to be talking up a storm in no time - she has A LOT to say!

The weekend is just about here and I am looking forward to time as a family.

Miss Adorable...

Molly "reading"



Uncle Tripp and Molly

Just the 3 of Us

I dropped Tripp off at the airport early this morning, so it's just the three of us again (and Howie). We had a nice visit and Tripp had a good time getting to know Molly.

Molly came down with a fever of 101 yesterday, so we went in today to make sure it wasn't an ear infection. Her ears look good, so we will just wait and see if the fever subsides. She is a little trooper. She's been a bit fussy, but not overly so.

We have more photos to post I will work on getting them up soon.

Back in the Groove

We are slowly getting back into the sleep routine and Molly seems to be back in the groove. My Mom arrived on Wednesday morning to give us a break and help give me some time to make all of the insurance/medical phone calls that seem to arise and pile up. My brother, Tripp, arrived on Friday night for his first glimpse at his niece.

We had a PT visit on Friday and she was impressed with her progress. It is always fun to show off Molly's newest "tricks"/accomplishments. She has a new "trick" that she did tonight for the first time that made us all cringe. People with OI have very loose joints, which allows them to contort their bodies in ways that only a contortionist can. She was able to bring her foot up to her mouth and even managed to get her toe INTO her mouth - it looked so odd, but she seemed quite happy with the accomplishment!

We ventured out for burritos for lunch and Molly was a trooper :). Tripp got to feed Molly her dinner tonight, which they both seemed to enjoy. We enjoyed dinner out on the deck this evening and had a nice BBQ.

We are beginning to evaluate if this house is going to stay our home, or whether we are going to need to build a handicap accessible home. It is an overwhelming prospect, but I'm sure some good things will come out of this process. We are just in the beginning stages, so we have a lot of research left to do to make this big decision.

My Mom leaves tomorrow (6:30 am). We're planning on taking Tripp to see Jordan Lake in the morning and possibly go for a quick swim. Life continues to be happy here in Mollyland... Yippee-Kai-Yay! Hope life is as good for all of you and your weekend was full of sunshine.

OI Conference - a few pictures

Here are a few of the pictures from the conference. Please go to Molly's Google Page CLICK HERE to see the rest.

Molly with her new "twin" Angel (9 months mild OI)

Dottie and Nicholas, from St. Louis, with us at the Zoo.

"Dr. Melanie" with Molly.

Laura, on the left, is 4 and from NC. She has the coolest purple wheelchair.

Liz loves babies and visited with Molly every chance she got. I really enjoyed meeting her.

OI Conference...Pictures to Follow

Photos have been posted on Molly's Google Page CLICK HERE

Wow, what a long few days we have had. We arrived in Omaha on Wednesday. Our flights here went well. Jim’s Dad was kind enough to use frequent flier miles so that the 3 of us could fly FIRST CLASS – what a luxury! Molly was happy the first leg and just a little fussy for the second flight, but overall she tolerated the trip quite well. We dropped our bags off at the front of the hotel and continued in the cab to Children’s Hospital for a tour of the facilities and a meeting with Dr. Plotkin. Wow is all I can say. The facility was very nice, but the people were phenomenal. The nurse gave us a tour and was so personable and helpful. She answered all of our questions and showed us all around to give us an idea of what treatment at the facility was like and what they had to offer.

Next we met with Dr. Plotkin. I cannot begin to say enough good things about him. He was friendly, informative and very down to earth. He has a great sense of humor and made sure that he answered all of our questions. I left having a better understanding about his philosophy for treatment. He spent a lot of time with us and didn’t charge us a penny for the visit – what a guy! We left the appointment and headed back to the hotel. We went straight to a consult we had set up with Dr. Cintas, a physical therapist that specializes in OI and wrote a PT book specifically for OI. She gave us some great ideas and techniques and helped us to understand what we should be working on in the coming months.

After all of this we finally had time to check into the hotel (around 3;30). My Mom was there for the consult with Dr. Cintas and Jim’s parents arrived soon after.

The next several days all seem to blend together. We met some wonderful people and learned a great deal both from them as well as from the different lectures that we attended. We met a wonderful doctor who has OI and spent a lot of time talking with her. One of the first people I spoke with was in a wheel chair and had a more severe form of OI. She welcomed us to the conference and told me not to be too overwhelmed by everything. Somehow I was able to take comfort from this. She was so happy and approachable. I spoke with a couple of teenagers in wheelchairs, one of whom I have read about in the online forum I belong to, and got a great sense of how happy they were despite some physical challenges. They were both so comfortable with themselves that I felt at ease talking with them and felt comfortable asking them about their wheelchairs and surgeries etc.

Coming here has given me a new level of comfort with talking with people with physical disabilities. I see them in a very different way. I am learning that you can be just as happy, and often happier, than those without physical limitations. I am loving this new perspective. It was so nice to see everyone completely at ease and blending in with the crowd, something that does not happen outside of this environment. There were a lot of first time attendees that were seeing others with this disability for the first time. What a wonderful opportunity this is for everyone.

I was prepared to be emotional throughout this experience, mostly filled with sadness and fear, but I really haven’t had that experience. I became emotional seeing how amazing some of the parents are. I also loved seeing how happy the kids are . There was one extremely severe boy tonight on the dance floor with his mom holding him. It was beautiful to see how much she loved this boy and to see how happy they both were with life. It is always nice to get a glimpse of people, who go through such tough times, in a happy place. I think having such big challenges helps you to appreciate the good times that much more.

I am SO glad that we made the trip here. I know that Molly, and the rest of us, are going to benefit so much both from the information we have absorbed and the connections we have made. The friendships that we have made here are lifted to an accelerated level due to the commonality of our children’s diagnosis. There is so much that we all understand without explaining. There is nothing like having that feeling that you are not alone. I have gotten that sense to a certain extent through the online community, but meeting people in person has a much more profound effect.

I have had moments of fear on this trip as I look at the most severe individuals and worry that that might be our future. I also had some moments of hope as parents told me that their child looked just like Molly and now walks. It is overwhelming not knowing what our future holds, but I am happy that we only have to take things one day at a time. It would be more overwhelming to know what the coming weeks, months and years have in store for us.

I am so grateful that we had the opportunity to make this trip. I am going to make it a priority to help make this privilege more accessible to those that are not has fortunate as we are. I want others to be able to benefit from the sense of community as well as the wealth of information that comes with attending this conference.

There was a dinner and dance this evening. I found this to be the most emotional time of the whole conference. Seeing all of the children and adults with varying degrees of severity all together on the dance floor enjoying life and enjoying just being one of the crowd was wonderful.

They announced that the next conference, in 2008, will be in Washington D.C. I am so happy that it will be driving distance. I am already looking forward to attending the next one, especially because Molly will be old enough to participate and interact.

We are home now and SO happy to be back. It was a long 5 days. Molly did exceptionally well under the circumstances. She rarely got to nap for more than 15 minutes, but stayed in good spirits. She got a lot of attention from both grandmothers as well as the people at the conference. She seemed to enjoy the attention and soaked it all in.

Yippee!

Hooray! I just got off the phone with someone at Omaha Children's. We have an appointment on Wednesday to see one of the doctor's who pioneered treatment for OI. This is great news. I am so happy. Hopefully we will learn some new things while we are there.

Last Minute Rush

We are leaving on Wednesday morning (Flight is at 6:30 am) and we have a lot left to get together for our big adventure. I thought I was getting organized, but we have less than 2 days left and I am feeling the crunch.

Molly is continuing to enjoy each new food that we have introduced. I gave her papaya and peas this weekend and both seem to be a hit. It is so fun feeding her and watching her reaction to new foods.

We won't be traveling with the swing, so we are all a bit nervous as to how nap-time will go while we are away...keep your fingers crossed!

Not much else in the way of news for the moment. Things continue to be wonderful in Mollyland :).

Bigger, Older, Stronger, Cuter

Molly had her 6 month birthday yesterday - WooHoo! She is getting to be quite the big girl :). She had her 6 month Dr. visit yesterday and is now weighing in at 12.5 lb. (which Jim guessed on the nose). She has been staying on the 3rd percentile growth curve, which is fine by us - hooray for growth. Her head is in the 50th percentile, so I guess it is rather large for her body - more space for a big brain :).

She has been absolutely adorable. She is happy playing by herself and is responding to us with a wiggle/shudder of joy. When she wakes up she can be happily left alone for minutes and sometimes as long as an hour plus. This is especially good when she wakes up at 4 am, which has been happening lately.

This blog has gone from a place for me to vent/process to a place to for me to brag :)

We had a great day today. I was able to go out to lunch with a friend and Molly was a champ in her stroller. We went swimming and were in there for 30 minutes and she loved it! She was the most active that she has been. Hopefully we will see some of this activity transfer to her out of water time as well. We have realized that we need to start strapping her into her stroller/high chair because it won't be long before she can wiggle her way out. I love this great progress.

We are getting ready for the conference - we leave on Wednesday. We have started getting into a good sleep routine, hopefully we will be able to reestablish this when we return. I am looking forward to getting a better handle on OI and what else we can be doing to improve Molly's life. I am also apprehensive about seeing the broad range of severity of the kids at the conference. I know we are going to learn a tremendous amount and I am looking forward to connecting with the families.

We have a lot left to do to prepare for our big trip, I can't believe it's next week! I feel so fortunate that we are able to go. I am also really grateful that our parents are all taking the time to go as well. One of my friends reminded me just how unique it is to have such overwhelming support from them. Molly is fortunate to have 4 grandparents who care so much for her. Nothing but the best for this little girl :).

Happy, Happy Joy, Joy!

Rollin', Rollin', Rollin'...

We are continuing to have fun with our cute little girl. She has now "found" her hands and can't stop looking at them. She seems to be interested in looking at things in more detail as well. She pulls things to within an inch or two from her face and just stares - very cute :). She continues to be happy and seems to be enjoying life.

As I went to bed last night I thought back to that first letter I had to write explaining (what little we knew) about Molly. Boy those were a tough few months. Going through such difficulties definitely gives us great appreciation for happy times.

We went swimming today and I think she really enjoyed it for the first time. I have become more comfortable with it as well, which I'm sure helps. I have now reached the point that I will let her float and only support her head. She seems to enjoy the feeling of floating. She even did a little kicking, I hope that this trend continues.

We have had a tough day in the pooping department. She cried each time she pooped today and produced little pellets. Sorry for the "poop talk", but I think it is a requirement for parents to discuss BM on a regular basis. She has now had a jar of prunes as well as some medication. Here's to a happier day for Molly's digestive system.

And the BIG news of the night... Molly was on her side and rolled on to her stomach. She has done this a few times, but this is the first time I have left her like that - a very scary thing. She managed to reposition herself so that she wasn't pinning her arm down. She stayed on her stomach for several minutes and was quite happy. We have an adorable video on her google webpage and some new photos at Yahoo Photos.

Food, Food, Molly Loves Food

I hope this trend continues, but for the moment Molly seems to enjoy mealtime. Rice cereal was first, followed by sweet potatoes. Both were a big hit. I tried avocado next, I'm not sure this one was her favorite. She took the first two bites no problem, but after that she just kept spitting most of it out. She let me give her spoonful after spoonful, but not much actually went down. I haven't tried it again, maybe tonight. I made butternut squash yesterday and she had that this morning. I think it might be her new favorite! She ate more than she has ever eaten :).

We seem to be getting into a better rhythm with her sleeping - hooray! She is now taking 3 naps a day and they last anywhere from 45 minutes to over 2 hours!! WOW! I have actually had time to get things done around the house. Bedtime seems to be getting better as well. She still cries, but after about 20 minutes she is out for the night. Most mornings she has been getting up at 7, but that seems to be getting earlier and earlier. Yesterday was 6, and today she started to stir at 4 (ugh), but didn't get up until 5:45. It is nice to finally feel like we have some clue what we are doing.

Molly continues to be a happy, and adorable, little baby. She is still trying to "talk" and the sounds keep changing, which I think is a good sign. I can't wait until she starts "talking" and saying mama, dada, lulu... whatever, just "talking".

Hooray for happy times in the Sullivan house.