The story

Eden was born with a congenital birth defect - her left thigh bone does not grow properly. This summer, she is undergoing a limb lengthening procedure at Sinai Hospital in Baltimore, MD through the Rubin Institute. It is an approx 6 month process. Chris and I are grateful for everyone's well wishes, and want to do our best to keep you all informed, so we decided to create this blog. It will also be a way for us to document this process and one day we will show it to Eden and she will know, she can conquer anything.

Sunday, August 1, 2010

Lengthening - Day 14

We are home, hopefully for good. We start PT here in NJ tomorrow. We will do it all week thru Th, then on Fri go to MD for a session. If all looks good we will stick with PT here. If the therapist is not able to do the PT properly, then I may need to go back with Eden. Fingers crossed.

Chris returns to work On Tuesday, right back to the grind. In NY on Tues then an offsite Wed and Th that will keep him late. He will come with us all on Fri to MD to see how things are going. It shoul dbe interesting entertainimng the 4 kids and making sure Eden is comforatbale. For th emost part she is easy during the day. Pool therapy is great for her. We went both days this weekend and she walks in the water, does stairs, kicks, all great things for her leg. The kids love the water so the pool will be a daily destination for us. We are lucky to have the JCC so close by.

It is only three weeks, and we will find ways to pass the time together. It will be sad to not have Chris with us, but some one has to make money!! I get to have fun with the kids spending it.

Eden is still not walking much, a few steps here and there and standing for some time, but she says she is scared. We hope she will get more comfortable and confident and just take off one day soon. She had a nice dinner with us tonight, that was new. She sat the entire meal and was a pleasure.

Nights are still an adventure, Eden struggles to fall asleep and does not sleep thru the night. We used to be pretty tough about bedtime routines but I am finding it hard right now. I mean, the girls has a metal apparatus attached to her leg, I have to feel some pity for her. But eventually we will have to create a routine and get her back to it. She is playing musical beds and waking up and watching TV in the middle of the night to soothe the pain., Not great habits, I know. But we feel for her so will give her a few more weeks. But school starts in 2 month, and the routine will have to return for all of us.

I am thankful to not have to worry about work right now, she really does need all my attention and what ever is left I want to try and make a normal life for the other kids. Ayla starts soccer on Wed, back to school shopping and preparations, etc...life goes on for all of us. We want to do our best to make this process part of our lives, not all consuming.

Each day continues to get easier, one day at a time is our favorite expression. Eden made it all day with out pain meds, that includes doing the exercises in the pool. She just took some now as she is trying to settle to sleep. We will give her int he am before PT though. She also has not complained much about her foot, so I guess slowing done a few days and using the foot plate has made a difference. We plan to start 4 turns again tomorrow. I must admit, it is pretty cool watching her turn it herself. I may take a video and post it for everyone to see. It is 10 pm, kids are settled, Ayla has a friend sleeping here, lets hope for a quiet night.

More after PT tomorrow....

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