This is an old picture of Cecily. I loved that she could finally sit up and despite the feeding pump tucked just to the side of her - I dreamt of the day she would be free to crawl, walk, run and jump without it! I remember willing her to play with her doll. We would bring it everywhere in hopes she would play with it. I am pretty sure that Grammy and I were the only ones to really play with it for at least two years... but we brought her along everywhere in hopes Cecily would engage.
Dare to dream... as of today, Cecily is not only walking, running, sort of jumping, dancing and playing with her dolls... but she no longer requires the use of her feeding pump. This is a true miracle! In September of 2012 she was diagnosed with hypoglycemia and dumping syndrome - it was about her 9th diagnoses (without an umbrella diagnosis for everything) and it set her development back. We were told once again she would require the use of the feeding pump and that bolus feeds were simply out of the question. No matter what we did it seemed Cecily couldn't tolerate her feeds and she would end up vomiting, retching or just sweating so profusely that it appeared we had dunked her in the bath after every feed.
Dare to dream... as of today Cecily is fed via g-tube, bolus feeds and her diet consists of the most healthy food you can imagine - kale, spinach, proteins like chicken and beef, a variety of fruits, milks, whole grains and more. She is thriving on her home care blended diet under the supervision of her nutritionist and the wonderful GI team at Radys and CHOC hospital. (yes, we've got 2 because 1 just never seems like enough or little Cecily!)
And after 4 years of intensive Occupational Therapy Cecily is now asking for food by mouth. Asking! Oh my goodness this was a dream that we prayed for, wished for, and worked very, very hard for. In a few weeks Cecily will be admitted to CHOC's intensive feeding clinic where for three weeks she will be monitored by their feeding team in the hopes that she will one day no longer need her g-tube. We said goodbye to her j-tube in May 2013 - and we eagerly await the day we will say goodbye to her g-tube. It feels like Cecily is coming full circle. She received her g-tube initially at just 9 months of age on Christmas Eve. It wasn't the holiday we dreamt of - but it was a gift because it set Cecily on the path towards her growth and development. We've had a love/hate relationship with the tube... but without it she would not be here today. So we are grateful!
And dare to dream - 90% of the children admitted into this intensive program are able to take most (if not all) of their calories by mouth. For the first time in Cecily's life she is sitting down with the family and is MORE than just a social participant. She is taking 2-4 ounces of food during a sitting and she is happily drinking her water or milk through a straw. It is a gift to see her eat and to see her so very happy!
And dare to dream - her words are coming! The majority of her sounds are very hard to understand but she is making them! And there are times when she busts out with 3 syllable words with perfect pitch: animal, vegetable, Dracula... the words she chooses are deliberate and have purpose. She is realizing the power of her words and she is trying so hard to communicate with more than just her eyes, touch and signs. We are so proud of this little monkey! She is truly an inspiration and we only share her private story to say that anything is possible. We always believed in our little angel but there were many, many days when those beliefs were tested. We are just so very luckily that we have Team Cecily to cheer Cecily on, and her Mom and Dad, when the going gets tough. As we embark on our next hospital stay we will look to Team Cecily for the same strength and courage to ensure we have a happy stay and that we are able to ensure all three of our children are thriving on their own path.
We always dared to dream - AND believe! Miracles are everywhere!
Onwards and upwards!
Dare to dream... as of today, Cecily is not only walking, running, sort of jumping, dancing and playing with her dolls... but she no longer requires the use of her feeding pump. This is a true miracle! In September of 2012 she was diagnosed with hypoglycemia and dumping syndrome - it was about her 9th diagnoses (without an umbrella diagnosis for everything) and it set her development back. We were told once again she would require the use of the feeding pump and that bolus feeds were simply out of the question. No matter what we did it seemed Cecily couldn't tolerate her feeds and she would end up vomiting, retching or just sweating so profusely that it appeared we had dunked her in the bath after every feed.
Dare to dream... as of today Cecily is fed via g-tube, bolus feeds and her diet consists of the most healthy food you can imagine - kale, spinach, proteins like chicken and beef, a variety of fruits, milks, whole grains and more. She is thriving on her home care blended diet under the supervision of her nutritionist and the wonderful GI team at Radys and CHOC hospital. (yes, we've got 2 because 1 just never seems like enough or little Cecily!)
And after 4 years of intensive Occupational Therapy Cecily is now asking for food by mouth. Asking! Oh my goodness this was a dream that we prayed for, wished for, and worked very, very hard for. In a few weeks Cecily will be admitted to CHOC's intensive feeding clinic where for three weeks she will be monitored by their feeding team in the hopes that she will one day no longer need her g-tube. We said goodbye to her j-tube in May 2013 - and we eagerly await the day we will say goodbye to her g-tube. It feels like Cecily is coming full circle. She received her g-tube initially at just 9 months of age on Christmas Eve. It wasn't the holiday we dreamt of - but it was a gift because it set Cecily on the path towards her growth and development. We've had a love/hate relationship with the tube... but without it she would not be here today. So we are grateful!
And dare to dream - 90% of the children admitted into this intensive program are able to take most (if not all) of their calories by mouth. For the first time in Cecily's life she is sitting down with the family and is MORE than just a social participant. She is taking 2-4 ounces of food during a sitting and she is happily drinking her water or milk through a straw. It is a gift to see her eat and to see her so very happy!
And dare to dream - her words are coming! The majority of her sounds are very hard to understand but she is making them! And there are times when she busts out with 3 syllable words with perfect pitch: animal, vegetable, Dracula... the words she chooses are deliberate and have purpose. She is realizing the power of her words and she is trying so hard to communicate with more than just her eyes, touch and signs. We are so proud of this little monkey! She is truly an inspiration and we only share her private story to say that anything is possible. We always believed in our little angel but there were many, many days when those beliefs were tested. We are just so very luckily that we have Team Cecily to cheer Cecily on, and her Mom and Dad, when the going gets tough. As we embark on our next hospital stay we will look to Team Cecily for the same strength and courage to ensure we have a happy stay and that we are able to ensure all three of our children are thriving on their own path.
We always dared to dream - AND believe! Miracles are everywhere!
Onwards and upwards!
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