Last week we had a procedure to replace her g/j tube... not a big deal in comparison to what she has already been through in her short life, but still I can't say that repetition makes it any easier to cope with. She is still poked, pricked, pinned down to the bed, and her face fills with panic and real tears. Six short days later (these tubes should last for at least 4 months for the record...) the tube decided to pop out from Cecily's adorable belly. Luckily our nurse was at home with Cecily and me because I wouldn't say I was very calm...
Cecily weathered the storm, another procedure, and all that comes with it like a champ - but not without her fair share of pain, hiccups and sleepless nights. The vomitting returned and it seems as if we've taken a giant leap backwards. We hate to see Cecily struggle and we hate to think we're helpless in this battle. Instead, we're choosing to hope and pray that things get better and we're continuing our search for answers. There have definitely been days over the last two weeks where I thought I was going to lose "it" - whatever "it" might be.
I fell into a funk and lost my happy place for a few days... but alas there was no time for this! Cecily was through the woods so we decided to go forth with our scheduled room makeover. We had a team of wonderful volunteers helping us and Grammy and Grampy wanted some time with the grandbabies. Since we now have a nurse helping us they don't see the kiddos as much as they would like! I threw myself into this project for a loveable and sweet boy and the clouds started to part. (We completed the room on Sunday and you can check out Eric's story to learn more about his battle with autism, his amazing family and pictures of the beautiful room - if I do say so myself!)
But because we are committed to finding the silver lining in a week with more ups than downs - we'll focus on the progress we're seeing with Cecily's therapy. I'm looking forward to telling Karla, Cecily's fantastic PT, that she is taking more weight on her feet! She is pressing to a stand (with assistance) and she is bouncing the way Noah used to bounce in her exersaucer. She is sitting in Noah's pool (unassisted) and her agility on the floor amazes us. She is so fast that now it feels like we are constantly chasing her and her tubes - and untangling her over and over again. In addition, Cecily started to nod "yes" and she continues to parrot our talking and movements. We are very happy with this progress because if she can do this while she is having pain - imagine what she could do without it!
I think that this small, tiny charity fuels me on days when my tank may be on empty. We want to share the positive spirit that Cecily breathes into us with other families. She fuels us to fight. We hope when our lives slow down that we can devote more time and energy to Cecily's Closet to bring more awareness to the various challenges children with special needs face. Our first priority is and always will be our own kids. But we know when we have more time we can do so much more!
It's a new week! And I've already had some small but wonderful victories. Noah drew the letter "A" today all by himself, Cecily pushed up on her legs and arms and moved an inch forward in the crawl position, and both kids are napping at the same time! Now that is something to celebrate! Onwards and upwards!
Cecily weathered the storm, another procedure, and all that comes with it like a champ - but not without her fair share of pain, hiccups and sleepless nights. The vomitting returned and it seems as if we've taken a giant leap backwards. We hate to see Cecily struggle and we hate to think we're helpless in this battle. Instead, we're choosing to hope and pray that things get better and we're continuing our search for answers. There have definitely been days over the last two weeks where I thought I was going to lose "it" - whatever "it" might be.
I fell into a funk and lost my happy place for a few days... but alas there was no time for this! Cecily was through the woods so we decided to go forth with our scheduled room makeover. We had a team of wonderful volunteers helping us and Grammy and Grampy wanted some time with the grandbabies. Since we now have a nurse helping us they don't see the kiddos as much as they would like! I threw myself into this project for a loveable and sweet boy and the clouds started to part. (We completed the room on Sunday and you can check out Eric's story to learn more about his battle with autism, his amazing family and pictures of the beautiful room - if I do say so myself!)
But because we are committed to finding the silver lining in a week with more ups than downs - we'll focus on the progress we're seeing with Cecily's therapy. I'm looking forward to telling Karla, Cecily's fantastic PT, that she is taking more weight on her feet! She is pressing to a stand (with assistance) and she is bouncing the way Noah used to bounce in her exersaucer. She is sitting in Noah's pool (unassisted) and her agility on the floor amazes us. She is so fast that now it feels like we are constantly chasing her and her tubes - and untangling her over and over again. In addition, Cecily started to nod "yes" and she continues to parrot our talking and movements. We are very happy with this progress because if she can do this while she is having pain - imagine what she could do without it!
I think that this small, tiny charity fuels me on days when my tank may be on empty. We want to share the positive spirit that Cecily breathes into us with other families. She fuels us to fight. We hope when our lives slow down that we can devote more time and energy to Cecily's Closet to bring more awareness to the various challenges children with special needs face. Our first priority is and always will be our own kids. But we know when we have more time we can do so much more!
It's a new week! And I've already had some small but wonderful victories. Noah drew the letter "A" today all by himself, Cecily pushed up on her legs and arms and moved an inch forward in the crawl position, and both kids are napping at the same time! Now that is something to celebrate! Onwards and upwards!
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