Molly was born on 1/13/06 with Type III Osteogenesis Imperfecta (Brittle Bone Disorder). I have created this blog to share our ups and downs with friends, family, and others in a similar situation.
Sunday, July 22, 2007
Exhausted, but doing well
Molly has been keeping us very busy these last two weeks. She is crawling all over the place and is into everything! We are at a very challenging phase. She is very active, and way to young to be told to be careful. We have had a lot of close calls. She is pulling up on her knees on everything.
She has had 2 new, minor, fractures in the past couple of weeks. She was playing at her plastic kitchen and fell into it and fractured something on her sternum and possibly her left arm. A week later she pulled to her knees in the kiddie pool and fractured something in her left Tibia. She has not wanted to stand for more than a few seconds at a time since hurting her leg, but it has not slowed her down with her crawling at all.
There has been so much going on . We have been continuing with our water therapy twice a week on our own and then once a week with a therapist. We met with a wheelchair rep recently and talked about what will be best for Molly and got some new ideas to research.
In the past few days Molly has started singing along to "Row, Row, Row Your Boat" and the "ABC's" and it is adorable! Molly now has her first pair of shoes, which is also a big step. We are so hopeful that her leg will heal soon and she will be able to stand for longer periods again.
We think our insurance woes have been fixed, but I won't feel confident until she has her next treatment and the bill goes through. All we had to do was have the home health agency resubmit it with a different code - we'll see if that was really all we needed!
She continues to be absolutely adorable and a ton of fun. She is also changing and learning more and more by the hour.
We went to Gatlinburg, TN a couple of weeks ago and met 3 other OI families there and had a really wonderful experience. There was a little girl who was 5 and only learned to walk last year. She was doing remarkably well and it was great to see all of the things she was able to do. She went go-carting and down a raft on a water slide and was able to play with the other kids quite well. It was so nice to be around families that know what we are going through. We learned a lot from them and now will have other families to get together with for a lifetime. It will be wonderful for Molly to have other kids to get together with to feel "normal" for a weekend.
My brother came to visit a couple of weeks ago and had a great visit. There are some pictures of him and Molly laughing up a storm. He really loves being an uncle and it was fun to see the two of them together.
I am having a hard time finding time to accomplish much of anything at the moment (including blogging), but I am hoping we will come up with some ways to make life a bit more manageable. My friend came over for the day today and it made a BIG difference having another set of hands available to get things like mealtime and bath time done. I'm not sure what our long-term solution will be. We have received a denial letter for the state program we applied and now have to appeal the decision in person at a hearing. The case-worker that came for the evaluation strongly suggested that we move forward with the appeal, which gives me at least a little bit of hope.
There are lots of new pictures and a few videos for you...
Here is a link to photos for ages 18-21 months: CLICK HERE
Videos:
Molly Dancing (a few weeks old)
Molly saying most of her words
Foot to mouth
Molly saying More and Noodle
Monday, July 09, 2007
Standing for the First Time!!
We weren't sure she would ever be able to stand, so we are SO excited that she has met this milestone! She has come so far since her surgery and we are so happy. She stood for the first time on Monday and has slowly been standing more and more since. I can only move my hands away for a few seconds, but she is getting better and better at it. I think it is only a matter of time before she begins pulling up to a stand on her own - YIKES!! Things are about to be very different in our world!
We are just so happy.
This is another little boy's walker that we tried Molly out on...
The computer is a BIG motivator right now (Sesame Street games :) so we use that to try and get her to stand for longer, which works pretty well...
We are just so happy.
This is another little boy's walker that we tried Molly out on...
The computer is a BIG motivator right now (Sesame Street games :) so we use that to try and get her to stand for longer, which works pretty well...
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