Wednesday, October 31, 2007

Happy Halloween!!

Molly and Amanda at their church "Trunk or Treat" (people dress up their trunks in the parking lot and give out candy)

Molly dressed up as a "Meow"

Molly having some fun in her purple loaner chair:

We have been having a great week. Our pumpkin carving party was a great success. We all had a great time and Molly had a BALL! My mom (Mimi) flew out yesterday and we had a great visit.

We got a different power chair to demo on Monday and she really seems to like it. I had them make it a bit faster, which might be the difference. This chair can lower to the floor so that she could get in and out by herself as she gets older. She drove it a couple hundred feet yesterday, which was a huge accomplishment! I was getting her out of the car today and she said "chair, please"!! Wow! What an exciting moment! I think she is really ready to have this independent mobility. It is hard because it will be 6-8 months from now before she will have a chair of her own. I hope that it is on the shorter end.

Today was Halloween and we dressed Molly up as a cat. We went to a neighbors house for a pre-trick-or-treating get together and we drove her chair thinking we would be heading right back to the house. We went to look at the decorations at one of the houses and then all of the kids were out to trick-or-treat. She latched on to this one little boy (Zack) and we followed them around for about 20 houses!! I never anticipated her having the stamina to be out for that long. She even said "Trick-Treat" when prompted :). We didn't actually go up to the door at many houses, but she had a ball following the big kids around. We came home and Jim greeted us with the bowl of candy and Molly said "Trick-Treat" (unprompted) - adorable!

What a fun little girl she is! It was so fun being out with her in her chair, especially with other little kids. She didn't drive much once it was dark, but now and again she would drive herself 2-12 feet and that is a whole new world for all of us. Keep your fingers crossed that we don't have to wait too long for her to get her own!

Wednesday, October 24, 2007

Pictures and a long overdue update

Sorry for the delay, but we have been busy and it has been hard to make the time to write.

On Saturday the 13th, we went to an LPA (Little People) event. It was nice to meet some other families and their kids. I am hoping that this will be a good community for Molly to be a part of as she gets older. We went with them to a pumpkin patch that also had some farm animals and Molly had a ball! She got to see some goats, chickens, pigs and sheep and was quite happy until they got too close to her by the fence - at which time she started firmly saying "No, No".

On Monday (the 14th) the wheelchair vendor dropped off a power wheelchair for Molly to demo for the next two weeks. She got the concept of stop and go almost immediately. We got her to drive all around the yard. It was so fun to have her independently mobile. It was the first time she had gone to the backyard on her own.

On Wednesday (the 17th) we went to the State Fair with our neighbor Lori, and had a blast. Unfortunately, I forget the camera, so there are no pictures :(. She got to hold a baby chick, which I think was a highlight, as were the cows and miniature horse. There were some performers singing and dancing with fiddles and banjos and Molly had us dancing the whole time and grinning from ear to ear.

I headed to the coast for the weekend with a bunch of ladies and Jim and Molly spent some quality time together. I had a wonderful time getting away. It was warm enough that we went swimming and got to take some nice walks along the beach. These ladies meet twice a year to make scrap books and I put together my first scrap book (an entire book of Molly photos). Jim and Molly had fun together, but while they were out Molly's chair rolled away (the brakes on her chair failed) and she tipped forward and smacked her face against the front of the van. She has a slight black eye and cheek, but thankfully came out with only minor bruising. Every kid gets their bumps and bruises, but it was more than a minor scare given Molly's fragile nature.

My Mom arrived today and will be here until Tuesday. It is so nice to have an extra set of hands and eyes to deal with all of the evaluation and work that goes along with caring for Molly.

I have been having trouble getting Molly to drive her chair anywhere and it seems to be getting worse each day. I'm not quite sure what her hang-up is, I am guessing she is simply enjoying the fact that she is in control. She is one stubborn little girl, but as people keep reminding me, it is her stubbornness that will allow her to be successful.

We are having our annual pumpkin carving party on Saturday and I am really looking forward to it. I will try and get some pictures up soon after the party :).

Here is a picture of Molly in her SUPER COOL power-chair (on loan)...
Molly doing some great standing at the dishwasher...

Molly enjoying her swing and her new glasses. She LOVES her new glasses and wears them even in the house :)...

Here is Molly with her good friend "Livie" (Olivia). You can kind of see Molly's "shiner" (her left eye)

Here are Molly and Livie playing at Olivia's house. They have been getting silly lately and squealing in a very shrill girly voice and laughing hysterically. It is so nice for Molly to have a friend to play with. Olivia is a year older than Molly, which has been great. Olivia told us this last visit that Molly is her best friend :)

Tuesday, October 09, 2007

Our Little Artist

Here are a few pictures of Molly doing some art projects during her infusion on Saturday...

Molly's infusion went very well on Saturday. It has been so nice doing her infusions at home. I love having the same nurse and having it over so quickly.

We had a great day today. We went to our local PT and went to a huge gymnastics space and she had a ball! There were foam mats and ramps and she went all over the place. Next we went to play with her new friend "Livie" (Olivia). Olivia came out to the car to greet us and Molly started babbling and then the two girls were giggling and squealing with delight - adorable!

I noticed that Molly's teeth are really starting to wear down and it reminded me that we will probably have to prepare to have all of her baby teeth capped in order to protect her baby teeth. This will be costly and will be another surgery under general anesthesia.

We also found out that the state funding we were hoping to utilize to help pay for Molly's power chair will no longer exist for us as of January 1st. So now we need to scramble and try and submit for her wheelchair now in hopes of having a chance to access the funds while they are still available. I was disappointed to learn about this change in funding because it was our back up plan for when our insurance company gave us a hard time about a piece of equipment for Molly. We were hoping that if our insurance company refused a manual (after getting her a power chair) that we would be able to rely on this state program to help get her a chair (once she outgrows the manual she has now). It is so frustrating that all of this equipment is so expensive and generally requires a fair amount of fighting with the insurance company in order to acquire.

I'm sure it will all fall into place and we will make due with whatever happens, but some days are more difficult when several things come into light on the same day.

Friday, October 05, 2007

Mobile Progress

Molly is doing well and making progress everyday. She is really entertaining us these days with her playful personality. She has enjoyed reading a particular book this week that asks you to do things like "turn your head", "shrug your shoulders", "pound your chest", etc. She wants to read it many times a day - too funny. We now have a video monitor and she was up there making a funny noise during her nap time and when I went over to see she was lifting up her shirt and "pounding on her chest" - adorable!

She is also very particular about the music I have on in the car. When she doesn't like the song she says No louder and louder until I change the song and when she likes the song she shouts "more" when the song is over. It is amazing how sure she is about what she does and does not like at such a young age.

She also has definitely decided that (for now) purple is her favorite color followed closely by blue and pink. I had no idea that a 20 month old could have a favorite color.

She has been making some good progress with her walking and tonight for the first time since the fracture she walked almost 30 feet (it took us about 15 minutes to get that far, but she was either walking or standing that whole time).

We also found a wonderful family in Michigan that donated a tiny little manual wheelchair to Molly. The mother has Type III OI (and stands 2' 10") and has twins (a boy and a girl) that both have OI. The kids are 9 and the daughter outgrew this chair quite a while ago. We received it a couple of days ago and we are now working on getting Molly to use it with some success. Here is a video of her using it on the first day CLICK HERE.

She is talking more and repeating words, which is promising. My new favorites that she says are "armadillo" and "everywhere". Here is a video of her talking CLICK HERE.

She is getting her infusion tomorrow and hopefully everything will go smoothly.

Here's a picture of Max, Amanda, and Molly outside. Molly has now sat on Amanda's lap a few times...