Monday, January 28, 2008

More Mobile and Talkative Than Ever

Molly in her first "big girl" bathing suit:
Molly starts off with small intentional strokes with her brush...

But shortly realizes it is much more effective to smear it all around with her hands...

Molly climbed right into her toy basket and proceeded to call it her car

Molly has been walking a lot the past few days all around the house. She has been using our hands for support and walking from room to room, which is very different than in the past. Up to now in the house it has been a planned activity and generally she chose to crawl or be carried rather than walk. I don't know what has made the difference, but she seems to be doing well.

She has been a bit crabbier lately and complaining of pain in her legs, arms/hands and her cheeks (I think the cheek pain is her 2 year molars coming in). It is hard to figure out how much pain she is actually in. I am on edge again like I was before her last surgery. It is difficult knowing that she has a partially healed fracture in her left tibia and progressive bowing in both tibias, especially her right. She woke up crying several times in the night on Saturday night, so we gave her ibuprofen before bed last night, which seemed to help and she slept through the night. It is difficult knowing that she is in pain and also trying to determine what level this pain is at. I think as long as she is eating and sleeping we can assume it is under control for now.

We had water therapy today and she took several steps in the water without holding on to anything, which was a HUGE milestone. I think it was similar to when a parent sees their child take their first steps on land, but maybe even more special. She wore a new bathing suit with inflatable pillows on the front and back, which seemed to give her the ability to "swim" by herself by just holding on to a pool noodle. I noticed today that she has definitely grown quite a bit in the last month or two. She stood on the bench at the therapy pool and the water hit her quit a bit lower on her body. She is now wearing some 18-24 month shirts and 12-18 month pants! It is amazing to think she was in 3-6 month clothing this past summer!

We also got a new walker today (a hand-me-down from another patient of Molly's PT) and she said she liked her new walker and called it pretty and said it was fun! The front wheels swivel, which allows her to navigate around much more effectively. It is a lot riskier than the other walker, but also allows her to get where she wants to go.

My brother, Tripp, drove down from outside of Pittsburgh this weekend and Molly (and the rest of us) had a great visit. She was excited for him to play with her toys and showed him all around the house.

She is getting older by the minute and now really enjoys playing games. We often play "hide-n-seek", where we "hide" around the corner etc. She also likes "I Spy" and is now even trying to come up with her own things to spy. We came up with a new game this weekend where we hide a few toys and ask her to find them, she seems to think this is a lot of fun.

Now that Molly is 2 her infusions are pushed out to 3 months apart. Up until now they have been 2 months (6 weeks when she was quite young) apart. I am hoping that she does well with a longer period of time between treatments. The kids complain of bone pain, fatigue and increased fractures when they are getting close to their next treatment. We are hopeful that she will tolerate another month. She will have her port flushed on Friday and then her next infusion a month from then.

There is an OI conference this summer (August 1-3) held by the OIF in Washington and we are getting really excited to learn more and connect with families again. We had such a positive experience at the last conference in Omaha (2006). I hope get to see all of the same families again and hopefully meet some new ones. It will be interested to see how Molly reacts, but I'm sure she will LOVE seeing all of the kids.

Here is a video of Molly walking with her old walker.

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