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