'Twas the Night Before Christmas

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

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

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

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

Merry Christmas to All!

Dada!

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

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

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

Happy Times at the Sullivans

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

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

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

Wrestlemania Here We Come!

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

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

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

Sitting and Playing

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

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

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

There is also a video of her sitting CLICK HERE.

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

She continues to be happy and full of spunk!

Infusion #7 - Mission Accomplished

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

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

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

Photos Galore

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

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

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

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

Temper Tantrums Already?!?

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

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

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

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

Home Sweet Home!!

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

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

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

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

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

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

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

HAPPY THANKSGIVING!!!

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

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

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

The Grand Tour

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

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

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

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

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

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

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

Videos Galore....

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

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

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

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

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

Video #1 - Dee Dee Dee CLICK HERE

Video #2 - Molly Playing with her tray CLICK HERE

Video #3 - Molly Learns to Nod CLICK HERE

Ah-choo!

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

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

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

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

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

Molly Through The "Years" Photo Collection

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

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

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

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

Splish Splash

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

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

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

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

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

Swimming and Talking

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

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

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

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

Kisses for Mom

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

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

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

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

Pumpkin Party and A New Video

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

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

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

A cool new chair

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

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

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

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

Home again, Home Again... Jiggity Jig

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

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

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

Infusion #6

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

Everything is OK

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

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

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

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

New Video

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

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

Caught on Film

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

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

Smart, Happy, and Strong :)

It's been a while since I have written, but things have been going well. Molly is getting stronger by the day and is starting to have new tricks. She is rolling from her back to her stomach by kicking herself over, mostly in an attempt to get a toy out of reach. Yesterday, she learned to open and close her hand in a waving motion, so it probably won't be long before she will be waving hello and good-bye. She has started shaking all of her toys and seems quite proud of herself. Books seem to be her new favorite toy. She is definitely cutting teeth up top, but nothing has broken through yet.

Jim's parents were here this past weekend for a visit and we all had a nice time. Molly was on her best behavior. Jan, Jim's Mom, got the chance to hold Molly for the first time and it was a special moment for everyone.

Jim compiled a DVD of all of the videos we have taken over the past 8 months. It was emotional to look back at the video from the first few months. It was such a difficult time back then. I am so appreciative that Molly is doing so well right now. She has far exceeded what we had envisioned and I hope that she continues to do better than we expected. As my Dad would say... "stay tuned".

I am continuing to house hunt, but we aren't planning on putting our house on the market unless we find the perfect house. We will reevaluate in the Spring.

Sorry for the delay in postings. I will try and be more consistent.

Hanz or Franz?

She is here to Pump You Up! (from SNL)

Molly is getting quite strong! Yesterday she repeatedly rolled from her back to her stomach in both directions. She is also putting a little bit of pressure on her feet and "bouncing", which is quite scary, but also great for her development.

She is babbling up a storm and has been quite happy lately. I think she is cutting teeth up top, which has given her trouble now and again. She has also learned that if she reaches out for something we will take her over to touch it - a very fun game :).

Jim is away for the weekend racing his car. My Mom is here to keep me sane and make sure I have someone to help out if something happens.

Welcome to Separation Anxiety...

Molly has entered the world of separation anxiety today. It came on all of a sudden and from what I've heard it's here for the next few months - ugh! It is strange to think that up until this point she has not realized that she and I are not the same person! She will be 8 months tomorrow and I think this has hit when the book predicted.

No other big news for now...

Two Spoons or More

Good morning. Things are still up in the air as far as what to do regarding our house. There are too many things to take into consideration. Will Molly be in a wheel chair all of the time, or will she be able to walk some? How handicap accessible does her bathroom need to be? Does our garage need to be handicap ready? Could we adapt our home? and on and on...

We went driving this weekend and came across a new neighborhood that we could build in. It is the same builder that built our present house, which we love. They have a floor plan option is quite open and would work well for Molly. We could include a full bathroom on the first floor as well as a bedroom. The downside is that it is another 5 miles away from Jim's work and would add at least another 10 minutes to his commute. It is a newer area with neighborhoods going up all over the place. I have liked being in a somewhat established part of town. We are relatively confident that we need to move, but we do have time. The issue is, that if we want to build our own house, that if we wait we will be MILES away from everything and even farther from Jim's work. It is so much to think about. We could also hold out and wait for a house with a first floor full bath to come on the market, but then we are in the situation of owning two homes at once. I love finding the "right" answer and it is extremely stressful for me when there are pros and cons to every option. The house that was for sale in our neighborhood seemed like a winning option, hopefully something else like that will come along again. We have a long list of "must haves" for Molly and then some "nice to haves" for us (like being close to Jim's work) that make our wish list rather long and specific.

On the Molly front...Jim has been having a challenge feeding Molly lately. She wants to grab the spoon and gets quite upset if he doesn't let her have it. I was not having the experience when I fed her, but today she decided that I was no different! She was VERY insistent that she "feed herself" and then refused to release the spoon. It is adorable and also quite messy. Our best "work around" that we have found thus far is to introduce a new spoon with food while she is holding the other. This works for a bite or two and then she catches on and puts an end to it. Man oh man are we in for trouble with this little munchkin. She has a VERY strong will and seems to already know what she does and does not want! She is a character and, thankfully, is a VERY happy little girl.

My mom went to an OI gathering in the Chicago area last weekend (while she was there for work). She saw a lot of the families from the conference and met up with "Dr. Melanie" (a doctor with OI that we met and connected with at the conference). It was good to hear what she learned. It was also hard, because yet again Molly was put into the severe category. We know that there are children who are more severe, but we got to see what a more severe case looks like 10 and 20 years from now and it is hard to envision the path that will lead to that. We have been having such a good stretch with Molly and she has been getting so strong and has been so active. It is hard to think about the future and all of the challenges that will come her way. She is a happy little girl, and I don't envision that changing even with all of the difficulties she will have to face, but it is hard to know that she has so much pain ahead of her. I know that there is research being done and I hope hope hope that they will develop some new treatments in time to help our little cutie.

UNCLE MIKE "THE ROCKER" meets Molly for the first time:

Here's some proof...

Molly is completely camera shy, so it has taken us until today to capture her "mamama" on camera. CLICK HERE to see the video

She has been enjoying her new purple chair a lot. It has been so nice to have a place to put her so that we can "play" together. It was hard when she was flat on her back for all of our interaction. She has started "slapping" her hands against her legs when she is excited. There is no question that this little girl has A LOT of personality - she is so FUN and happy!

We still haven't figured out the whole house thing, but fortunately we have some time to mull it over. Jim is hopeful that we can add a bedroom and bathroom to the first floor, but I am concerned that this will cost us too much - we shall see! It is nice to have options.

Under Contract

We have been busting our behinds this weekend trying to clean up our house and box things up to get ready to put it on the market. We had an appointment today to meet with the selling agent and before we had the opportunity to talk about putting in an offer (contingent on the sale of our house) they received two offers and have now accepted one. I am quite disappointed, but I guess it just wasn't the right place for us.

We are still thinking about preparing to sell, if the right house comes along, but it may be a year or so before everything falls into place. Thankfully, we have time and can wait for the right thing to reveal itself. We will of course keep you posted.

Molly has been getting stronger and stronger. She is now twisting herself all around and is getting close to rolling from her back to her stomach. We are going to have to be on our toes from now on!

She has continued to be a chatty cathy and is now making "m" and "b" sounds. What a little cutie!

Mamamama

Molly has learned to say mamama and is having a ball doing so. She had said it a few months ago, but it was only a few times and then it was gone. It seems like it is here to stay this time. She has been "talking" all day long! It's adorable!

We have been busy today trying to get our house into shape, which is quite the task. We haven't figured out if we will be buying the house we saw, but we want to be ready in case we do so we can get our house on the market.

If any of you out there have ever bought a house before putting yours on the market, please email me with suggestions!

Movin' Right Along...

Ugh, more big decisions are hitting us at the moment. We went for a walk yesterday morning and noticed a house in our neighborhood is for sale. We came home and looked at it online and noticed that it has an above ground pool, a hot tub, and a first-floor master bedroom. These are all of the things that we had hoped to find in a house for Molly. Along with a flat driveway, flat lot and a cul-de-sac for her to play in. We made an appointment and went to see it during Jim's lunch. We like the feel of our house more, but this house is perfect for Molly.

I already had an appointment with an adaptability person lined up, so we had her look at both houses. She confirmed what I had thought. Our present house won't work for us once Molly is mobile. We could of course make this house work, but the amount of money we would have to put into it just wouldn't make sense. On the other hand, she gave this other house a thumbs up. Even if Molly is exclusively in a wheel chair we could make it work with some minor modifications. This is a tough decision and it has hit us all at once. I spoke with her physical therapist on Wednesday and she made me aware that we will be looking at ordering a wheel chair for Molly when she turns 2! That gives us 18 months to be in a house that Molly can move around in. YIKES!!

It is nice to have the option of a house in our neighborhood with most of the things that we will need for Molly, but it is also extremely overwhelming. The house is bigger than ours and comes with a bigger price tag. It is scary to take on a bigger mortgage, but is also very tempting.

I think we will be making a decision in the next few days, so I will keep you posted. It's SO much to think about.

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