Tuesday, September 25, 2007

A Good Check Up

Molly has had a good week and has been healing quickly. She has been standing here and there for a moment or two at a time, but no more. We haven't been encouraging any standing and put her walker away for the week. We went to see the Orthopedist today and took some X-Rays to check on things. There is new bone forming and he has given us the go ahead to bring the walker out and encourage her to do whatever she is comfortable with. She already took a spin around the playroom and walked for almost a dozen steps. What a relief! I was worried it might be a month or more before we would be able to work on this again.

I am including a video of Molly trying out a power chair at the PT's office. It was SO fun to see her mobile on her own. It was also terrifying, but I think it is going to be great for her.
CLICK HERE for the video.

I found Molly a wheelchair accessible playhouse this weekend at a yard sale and we have put it in the playroom and she LOVES it! One whole side of the house opens up so that you can wheel yourself in - it is perfect for her! Here is a video of her seeing the house for the first time CLICK HERE.

Molly's new pull out couch:

Molly exploring her new play house:

Wednesday, September 19, 2007

Healing Quickly

I am happy to report that Molly is doing extremely well and is almost back to her old self. We haven't even needed to give her pain medication throughout the day today. She amazes me with her ability to bounce back so quickly. She is crawling everywhere and is even standing for seconds at a time. We went and saw her orthopedist yesterday and told us not to encourage any standing quite yet. We're going back in a week to take new X-Rays to make sure things are healing well and then we should be able to begin working on standing and walking again.

Thank goodness things improved after our long night on Saturday.

We think we have officially decided that a power wheelchair is the right choice for Molly. We met with her PT and a wheelchair vendor yesterday and she tried out a couple of the chairs. I wasn't sure what to expect Molly to be capable of doing, but she blew me away. It took her a little while and she couldn't maneuver or anything elaborate, but she definitely got the idea that if she pushed the joystick forward the chair went forward. I wheeled around in a manual chair and made a game of it for her to chase after me, which worked very well. It is so exciting to think that she could be independently mobile out in public! Yikes!! Very exciting stuff.

We took some brief videos and will upload them when we get a chance. They will be dropping off a chair for us to demo for two weeks in October. We will have to work on building her skills so that we can demonstrate to the insurance company that a power chair is appropriate and she is capable of operating it herself.

Saturday, September 15, 2007

A fracture and a long night

We took Molly to the ortho yesterday morning and they took x-rays of her right lower leg. It looks like the fracture is at the very bottom of her tibia (close to the ankle). He made a splint and told us to come back on Tuesday to meet with her ortho. She was in good spirits on Saturday and we even got out of the house for a little while for lunch.

We tried to put her down for bed and things fell apart from there. We would rock her until she fell asleep, but as soon as we put her to bed she would wake up and cry until we picked her up. This went on for hours. Finally, we decided to let her stay up and read and play for a while. She was happy until we tried putting her to sleep again. I checked her for rashes, etc. and made sure we had given her as much pain medication as we could and I couldn't think of what else could be causing all of this trouble. I brought her downstairs at 6 and tried driving her around to fall asleep, but this also did not work.

Finally, I realized I needed to check her leg and took the splint off. She had big sores on the front of her ankle and her heal was all red and swollen. I had no idea that pressure sores could form so quickly. I felt terribly that I didn't figure this out earlier. We have had the splint off all day and she has been happy and crawling all around. She slept for an hour and a half in her crib for a nap and then came down and napped on me for another hour and half. The sores look better, but still look irritated. Hopefully a tonight will be better for Molly and will allow her sores time to heal.

She tried putting pressure on the sore leg, so we will have to see what the ortho says as far as how to protect the leg while it heals. My instinct says that she is good at self limiting and she probably doesn't need anything on it, but I would hate to be wrong and let her do things that injure it further and cause complications down the road.

Here's to a good night's sleep at the Sullivan's!

Tibia Fracture?

Yesterday morning we went to see Molly's PT and she was AMAZED by Molly's progress. Molly walked all over the PT room with her walker and it was so fun to show off her new wonderful skill.

Around 4:00 we were in the playroom and Molly was pushing on the side of one of her plastic bins of toys and it dumped over and she fell over her legs. I was hoping that she was just scared, but it was clear that she was in a lot of pain. The good news was this was the first time she was able to show me where it hurt. The bad news is we think she has fractured her right tibia (shin bone). This bone is the most bowed and will need to have the rod replaced sooner than later. The orthopedist in Omaha (Dr. Esposito) thought the rods would last about a year - hopefully he is right.

We have her leg in one of her splints from her surgery and we are going to see her orthopedist today to have him take a look and decide if we need an x-ray. Once we gave her medication last night she ate a good dinner and even did some laughing, so hopefully this is a minor fracture and she will recover quickly.

We are just devastated that she will now not be able to walk with this new fracture. It may only be days before she begins to stand on it again, but we will have to wait and see. Thankfully, she slept through the night (we gave her some Motrin in the middle of the night to keep her comfortable).

She is starting to wake up now, we will see how things go...

Thursday, September 06, 2007


Molly has already made tremendous progress with her walking. She is now taking many steps at a time (with a lot of encouragement from us). She did it with me yesterday and did it several times today.

Here is a video of her walking CLICK HERE to her friend Amanda, an 11 year old who also has OI and happens to live only a couple of miles away. She had fun walking up to Amanda and tickling her hand and allowed me to move her back to repeat few times before she had had enough.

There is also a video of her at her play kitchen cooking CLICK HERE.

Here are a couple of pictures of Molly and Amanda. Amanda just had surgery yesterday morning to replace a rod in her Tibia (lower leg) and was home within a few hours of the surgery!! She is doing amazingly well. The two girls already have a special bond and we are lucky to have them so close by.

Tuesday, September 04, 2007

Steady Progress

Molly is doing well and keeping us busy. I left Molly and Jim on their own for the weekend and headed up to Pennsylvania for a wedding reception. It was nice to get away and I think they had a great time together.

She has started taking a few steps along the couch, which is great progress. She also took a few steps with a walker we have borrowed and we are excited to continue to work on that. She is such a good crawler that it is hard to entice her to want to use her "Star Car" (pre-wheelchair) or the walker, but she will tolerate it for brief stints.

She is getting more and more interested in pretend play and now offers us imaginary food to try, which is adorable. She has started trying to make car noises and likes to play with little figurines in doll houses etc. This is such a fun age.