Monday, November 24, 2008

Our Sweet Girl

We have tried to pack as many fun events into the past few days and we've had a ball. We went to the mall yesterday and played with all of the princess toys at the Disney store (currently Sleeping Beauty is her favorite).

Santa is already at the Mall and Molly wanted to meet him. She was terrified last year and yelled "no Santa" when we would walk through that part of the mall. This time she was interested in shaking his hand. She wanted to give him a present and find out what he wanted for Christmas, which was so sweet. He wants homemade chocolate chip cookies, which Molly said she would make for him - too cute. She has gotten so good at sharing.

Happy Thanksgiving!

Sunday, November 16, 2008

Healing Nicely, but Surgery is Scheduled

It is amazing what a difference a week makes. She is feeling a lot better and needing a lot less medication with each day. The X-Ray shows that it is slightly displaced and it appears that it will not heal straight. We spoke with Dr. Esposito and decided that surgery made the most sense to help insure we aren't in the same place in another 6 months.

She will have a rod placed in her right Humerus (upper arm) on December 1st. We are going to see our local ortho on Tuesday and will take x-rays of the left arm to make sure that it does not also need a rod. This will be Molly's 3rd surgery in 2008, which is an overwhelming reality.

It has been an emotional week. It has been difficult keeping her comfortable and also keeping her safe. She has started standing and cruising around the furniture, but with only one arm for support the risk of a fall is much higher. I find myself envisioning her falling every few hours and going through the thought process of what would be involved.

Her spirits have been good throughout this week. She has not complained once (other than about the pain) and has not said "I can't do it" about anything, even with just one functioning arm. It is wonderful to see her take this in stride and just continue with life. She has been doing a remarkably good job at doing everything with her left hand, which will be a good skill to have.

It has been overwhelming, but we are grateful that she is doing as well as she is. Please think of her on Dec. 1st during her surgery.

Some Molly quotes and a singing video

Molly has been surprising us with some really funny lines in the past month or so.

Molly has a new game in her play house, where we "read the menu" and order food from each other. One night she ordered a soup and a grilled cheese. When I gave her an empty plate and told her it was her grilled cheese, she responded: "I asked for this on whole wheat please."

When Mimi was in town babysitting, Molly said: "could you please stop talking for a minute, I'm on the phone."

A couple other recent gems:
"It was already out here, I didn't recognize it"
"I've started the process"
"I can't get by that section"

In other news, we have FINALLY caught Molly singing on camera. She has been singing most of the time for a couple months now, but we have not had any luck recording it.

Check out the video of her singing HERE

- Jim

Sunday, November 09, 2008

Fracture #36 (or so)

We have been applying for preschool services, so we currently have an unusually accurate fracture count. We were out to dinner Saturday night and Molly fell and broke her right Humerus (upper arm). This is the same arm she fractured back in March just a few days before her 2nd rodding surgery.

Molly and I were in the bathroom and she was using her walker. Her wheel bumped into my foot and she fell forward face first. I knew right away and then it was a matter of getting out of the restaurant to figure out how bad it was and where. While we were trying to calm her down Jim asked her if she wanted to get ice cream - assuming she would say "no" if it was honestly a fracture. I already knew it was a fracture and was extremely surprised when she said that she did want the ice cream first! This didn't last long as the pain increased, but it shows how tough these little kids really are. We got her home and pulled out the splints we had from March and she was insistent that we use the arm cuff rather than the shoulder to wrist splint. I was prepared for a long night, but she slept through the night. Today, Sunday, she was complaining a bit more about her arm and so we switched to the shoulder to wrist splint and then ace wrapped her arm to her body, which seems to be working a lot better.

Her spirits have been amazingly good and I am so impressed. She only has one arm to work with, which makes lots of things more challenging, but she has not complained or gotten frustrated at all. She will not be able to walk until the arm is healed since she needs the use of her walker. We were able to switch her wheelchair joystick to her left side and we went for a walk today, which went relatively well. She will remind us when we go to pick her up or put on a jacket... "nice and gentle" and "don't move my arm - it still hurts". She has been a model patient!

We have not gotten an X-Ray yet, but will try and do so on Monday. We need to see how straight the arm is, if it is not relatively straight we will be discussing rodding the arm with Dr. Esposito - I sure hope we don't have to do that right now.

We will be contacting Preschool Services this week to notify them of her fracture, we are going to try and use this as an "opportunity" to enlighten and educate them about the challenges that we face.

Sunday, November 02, 2008

Our LIttle Skunk

Molly with her best friend "Livi" holding out her hand to hold...

All of us with Molly's "Potato Head Pirate Pumpkin" and two we carved as a family...

Molly with all of her "Loot"...

Molly is doing remarkably well at the moment and we have had a good weekend. Molly was a skunk for Halloween and had a wonderful time. We went to a friends for a party before trick-or-treating and then went out with a group of kids from the neighborhood. Molly drove her chair around and was literally humming she was so happy. It was adorable! Jim and I took turns carrying her up to the door and she said "trick-or-treat" and was very excited to pick out her own candy, searching for purple packages whenever possible.

Here is a video of Molly walking without her walker better than she ever has!! (CLICK HERE)

We had a pumpkin carving party last weekend and Molly had a blast having so many kids here at the house.

We are going through some further frustrations with the process of getting Molly the services she needs for preschool. They called last week and want to arrange a social setting to see what my specific concerns are. They told me that I would be in the doorway and able to see her the whole time - I don't know WHAT they were thinking. I then told them that I would be right at her side the whole time and would like the other children (2 others) to have their parents right there with them as well. She said - what if the OT was there to watch her? I explained that there would not be enough time to train the OT to be an appropriate aide to Molly. They have agreed to "allow" me to be at her side for the observation. I am feeling so frustrated and alone going through this process. We are now going to bring up the possibility of getting a lawyer to help advocate for us, but really hope it does not get to that point. Most of the other OI children we know throughout the country have been given the appropriate services (a 1 on 1 aide) without even having to ask for it, including children here in North Carolina.