On Guard!

We are back from infusion #4 - Hooray! Things went relatively smoothly, but it is always nice to be back home.

Apparently Molly has gotten big enough to have the infusion over a 12 hour (as opposed to 18 hour) period of time, gotta love those small "victories". They put the IV in her head and got it in one stick :).

She missed most of her naps yesterday, which made her a little on the grumpy side - who could blame her? The infusion finished up around 1:00 a.m. and they had to wake her up to do the heel stick. She recovered quickly and went right back to bed. The hardest part was getting the IV and all of the tape out of Molly's hair without pulling it all out - ouch!

I am very sleep deprived after last night and am looking forward to sleeping tonight. We had a minor "incident" when the evening nurse came on shift. While examining Molly she lifted her leg to look at what was written on the bottom of her sock. I panicked and told her that we do not move her limbs for fear of fracture. She didn't really acknowledge what I said, which left me feeling anxious for the night ahead. I later told her that I wanted to be woken up if anything needed to be done. This made for a very restless night. Each time the door opened I popped out of bed and was at Molly's side. It all worked out and Molly is home no worse for the wear :).

It is hard having to explain to every nurse and resident just how fragile Molly is and just how little they can do to examine her. I am hoping that with time we will become familiar with all of the nurses and can be a little bit more relaxed. We are definitely getting accustomed to the infusion process and it is nice to be in familiar territory.

There was a family there with a 2 month old that was just diagnosed with a milder type of OI and they live in the next town. For such a rare disorder we have a lot (meaning 3) of kids in the area. They were in for their son's first infusion, which was a reminder to me about how far we have come. Those first few weeks were like living on another planet compared to where we are now. It has happened rather gradually, but thinking back allows me to see how much better things are now. Hooray for improvement.

Molly seems more determined than ever to talk. She has been so cute. I will be talking to her and she will look right at me and try to make a sound...I'm sure her first word is not far off :) We will try and post a video of it soon.