Monday, July 31, 2006

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.

Saturday, July 29, 2006

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.

Tuesday, July 25, 2006

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.

Monday, July 24, 2006

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.

Monday, July 17, 2006


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 :).

Friday, July 14, 2006

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!

Wednesday, July 12, 2006

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.

Monday, July 10, 2006

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.

Wednesday, July 05, 2006

Oh That Hair!

There are two new videos on Molly's Webpage

Molly's first 4th

This was another good weekend for the Sullivan Crew :). Molly has been quite a cutie. She has now found her feet and finds it interesting to grab them over and over and over again. I made sweet potatoes this weekend and yesterday she tried them for the first time. We got a funny face for the first taste and then she dove right in. It seems we have a good eater on our hands.

The sleep battle continues, but Jim's patience is paying off now and again. Molly seems to prefer going to sleep for him. This is definitely one area of parenting that he is WAY better at than me!! It is frustrating that more often than not she will refuse to nap for me at all and then when Jim swoops in she turns into a sleeping champ. Night time is a battle of the wills and typically ends when she has finally exhausted herself! We are working on building a night-time routine and then we will try the letting her cry thing again - ugh.

She is getting stronger and stronger and seems to be feeling well - oh how we love being off of that codeine.

I hope you all had a nice 4th. It is so ridiculously hot here that we just watched from our window through the trees - not much to see, but at least we weren't outside melting.