Infusion #8

We are home from Molly's infusion and happy to have it behind us. Her IV has been in her head up to this point, but we decided to try a foot this time and had success. It was scary having them touching her legs to get the IV in, but it worked out in the end. Her medication was misordered and it was tense for a little while, but we spoke with our doctor who confirmed that things were correct.

Removing the IV was a snap (compared to when it was in the head and her hair was ripped out) and we were home by 10:30. Thankfully we have an 8 week break before we have to go through this again.

Molly was a champ and didn't even cry when they removed the IV :).

A Big Week

We had a lot going on last week. My Mom arrived on Monday for a week FULL of appointments. We met with a new orthopedist on Tuesday and think that the 4th will hopefully be the charm. He admits that he is not an OI expert, he seemed interested in learning more about the new treatments for OI, and seemed to respect that we were going to go to a specialty center for her surgery. We've only met with him twice, so it's hard to have complete confidence, but hopefully we have found a good fit for us.

We met with a new PT on Thursday and are considering changing to her as well. It is hard for me to leave our current PT after being with her for a year, but I think that Molly will benefit from the change.

Jim and I also had the opportunity to get out of the house at night with some friends while my Mom was here and that was so nice.

I am feeling anxious about the fact that we don't have things in place yet for Molly's surgery. There is a chance that she won't have the surgery for another 6 months, but there is also the chance that she could have it next week. If she fractures her femur, then we will go ahead and have her femurs and tibias rodded at that point. We don't have a relationship with the surgeon we think we're going to use, so until we have done that there is a chance that he won't operate if she fractured now. We have put a call in to Omaha (where we're planning to go for her surgery), but are waiting to make arrangements. It seems that we will be making two trips to Omaha in the next 6 months or so.

I'm not looking forward to the surgery, but I am looking forward to her having rods in place. The rods will help her so much. They will strengthen and straighten her legs and they will stabilize any fracture, which will help to minimize the pain. Lots of benefits.

We bought Molly an exersaucer on Thursday. I had one, but didn't think she'd ever be able to use it, so I returned it. We also got her a little seat for the floor. And the most exciting purchase, according to Molly, is a swing for outside. She LOVES it!! There is a video CLICK HERE to see her swinging

She was able to put some pressure on her feet in the exersaucer, which is exciting and scary all at the same time. She is getting stronger and more mobile by the minute - very exciting!

She Crawled!!!

First off, here are two videos of her:

CLICK HERE for a video of her playing her piano

CLICK HERE for a video of her sliding on the floor

She was on her belly this evening and REALLY wanted the TV remote and pushed herself forward (just a few inches) to get it. A first and very exciting. We weren't sure that she would ever be able to put enough pressure on her legs to accomplish this. We are also nervous because this is how most of the kids fracture their femurs. For now we will enjoy her new big milestone!

On the Move

Molly is getting more mobile by the minute. She is getting up on her knees in a crawling position, which has us all scared. This is how most of the kids have fractured their femurs. I don't want to stop her from progressing, it's good she is getting so strong, but it is scary to watch and wait.

She is still only able to move backwards, but she can spin on her belly, which allows her to cover a good amount of the familyroom.

We went swimming yesterday and had a ball. We were able to stay in for almost an hour.

She loves music and will "dance" by moving her arms around "Saturday Night Fever Style" - ADORABLE!

There are a few videos from her birthday to view:

CLICK HERE to see her at the computer

CLICK HERE to see some birthday footage

CLICK HERE to see some more birthday footage

CLICK HERE (for big fans only) to see a LONG video of Molly with her cake

Happy Birthday Molly!

Wow - Molly is 1!!

We have been reliving last years events at this time, mostly with fondness. It is hard to believe it's already her first birthday. It certainly has been a rollercoaster ride this past year, but we are in a much better place today than we ever would have predicted a year ago.

We have had such a good year with this little cutie. She is one fun little girl.

We had around 20 people here to celebrate the big day. I felt very lucky to have so many people here to sing and celebrate with us.

It is hard to think back to those first few months and how stressful and scary they were. We spent the first month thinking that she was deaf, which was an added stress that we certainly didn't need. I think I will always remember sending out the email with the subject of "She Can Hear". We had celebratory cake that night!!

There have been lots of adjustments to make and certainly our share of difficult times, but for the most part I feel very fortunate for the year that we have had with her. There are lots of families that have been far less fortunate that we have and that is not lost on me for a moment.

Our toughest times are ahead and it is hard to have that looming, but I am trying to appreciate the way things are now as best I can. Her biggest challenges are the slow changes that will occur to her spine and the issues that come along with that.

We are lucky to have such overwhelming support from our friends and family. I hope you all know how much we appreciate everything you have done for us this year. I don't know what we would have done without the help and support you have all given us.

I wasn't sure if today would be a happy or sad day for us and I am happy to report that it was 100% happy :). We feel so fortunate to have such a wonderful baby and such supportive friends and family to help us with the bumps we hit along the way.

There more photos from her birthday CLICK HERE

Lots to Report

I have been meaning to record all of Molly's happenings, but haven't found the time until now.

Things are going well here in NC. Molly has been so happy and fun lately.

She is sitting up in her bath now. We have transitioned to the big bath tub, which she seems to enjoy.

She says Dada, Doggie (or something like it), she is signing more when she wants to eat or wants more of something. She signs milk, pick me up and lays back if she wants me to pick her up. She is looking more intently at the pictures in books and gets particularly excited to see pictures of ducks (yellow ones), bunnies (she makes her hand hop) and teddy bears (she has one she sleeps with now). Her level of comprehension seems quite good. I am looking forward to her being able to communicate more, but I know that will come in time.

We had an appointment with her OT this week and they did a test (Bailey test I think) to see where she was in her development. She did pretty well. They scored her and she is in the 10 month level with the things they tested her for. She did some things at a 13 month level, but still has some catching up to do in other areas. Obviously she is delayed in her gross motor skills, but that is to be expected. We're doing what we can for now and I know she will be advancing at lightning speed in the coming months. She is already changing so much from day to day and certainly from week to week.

We went to the pool today and she did some standing on my legs, which was fun but scary. She still keeps some of the weight on my hand, but puts more than she does out of the water on her legs.

The past few days have been our best ever. I'm not sure what has made them so good, I guess it's a combination of things. She is interacting with the world so much more than she was even last week. She has been really happy and has enjoyed playing games and just looking at things around the house.

She got a Fisher Price Farm set and school bus (with Little People) for Christmas and they have been a big hit. She opens and closes the doors and takes the animals/people out and seems quite proud of herself.

She clapped her hands (no sound) for the first time yesterday, which was a big deal for us. She seems to be entering a stage where copying us is becoming more commonplace.

It is hard to believe that she is going to be 1 next week! It is exciting to be moving into a new phase with her.

On a different note. My friend's 22 month old son with OI fractured his femur two nights ago and has his first cast. This has certainly made my growing anxiety more real. There is the stress of figuring out how to get them home with a Spica cast on (that is a cast that goes from the ankle to the armpit). You also have to figure out how to do everything else: diaper changing, feeding, playing, bathing etc. We were hours before it happened, brainstorming what we will do when the dreaded fracture happens. I know you can never be prepared for something like that, but I feel especially unprepared right now. Hopefully I can get my act together and get more of this stuff figured out in time.

There are several new pictures since Christmas. Click HERE to see the latest picture (at the bottom of the page).

There are also a couple of new videos:
1. Molly at her Highchair CLICK HERE
2. Molly sitting in the tub CLICK HERE