Hope 4 Delaney

Hope 4 Delaney

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How Time Flies

Posted by hope4delaney on May 31, 2009 at 9:55 PM

Well, here we are. One year later. May 9th, our little bean crested the one year mark as strong as ever! Hopefully, this is a sign of wonderful things to come.

We celebrated the day at the Philadelphia Zoo for the Great Strides Campaign for CF. It was a gorgeous day and we had the support of a large group of friends and family. We are so blessed to have such an amazing support system. We were able to enjoy the animals and the sunshine before heading back to Bma and Bpa's house for the celebration!!

Lots of smiles and laughter filled the air that gorgeous afternoon. Swimming, bubbles and cake consumed our day as we cherished one of many birthday's with our bean.

She remains at her baseline after a bit of a cold in the beginning of summer. She has transitioned off formula and is drinking whole milk. Bean loves to eat nutri-grain bars, mac n cheese, pancakes (with extra butter), chicken nuggets, french fries, cheddar goldfish and jello pudding. Each day we try to introduce new things to Delaney's diet so we can continue to maintain the 50% or better on her growth chart. So far, we have done well. Bean weighs 20 1/2 lbs and is following a steady curve on her growth chart.  (right around 49%)

Laney now faces forward in the car which is more enjoyable for her and mommy and daddy.  Now we can see what she is laughing about. Her cheery face and silly giggles make all car rides enjoyable. She really has taken interest in the DVD movies that her big sister Riley likes watching.  Whenever we aren't watching a Barbie DVD, we'll watch Blues Clues. That seems to have her interest right now. She hold her own bottle when eating and enjoys drinking juice out of a sippy cup too.  Drinking from the sippy makes supplementing her salt and other meds easier for us. Instead of everything going into bottles, we can spread things out a little more as she continues to drink and snack  throughout the day.  Enzymes are still the same (4) with each "meal". Sometimes we'll have one enzymes if its a heavier snack.

She continues to babble. Sometimes we wonder who she is talking too. She points to things and says "whats that" and says dada all the time. Even when I say mama, she says dada......i guess we all know what that means.  She is learning sign language also. She has mastered "please" and "more".  We are working on "thank you" and "play". She blows kisses and waves bye bye, puts her hands up in the air and says "all done" when she's had enough to eat.

Riley now has a shadow. We warned her that the day would come. For her it was around 10 months. Laney has been mobile for a few months now and is even pretty quick for having such short chubby legs. (thats the mommy in her.) Everywhere Riley goes, Delaney wants to go. Everything Riley has, Delaney wants. And so the drama begins...though we were hoping to have a little more of a break before it started...again, we dont have that type of luck

After typing everything, i realize how far we've come. There is still so much more i could go into detail about but would rather save some for my next post.  It has been a learning year. We are understanding the disease, the progression of it, medications and environmental influences and so on. Most of all though, I think we have learned to love more. Love each other more. Be thankful for today and look forward to tomorrow. Everyday presents a new adventure for us, and we are now looking to take it in stride....one breath at a time.

 

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