Yesterday was Noah's day. We played every game we own in the house from Hungry Hippos to Trouble, Go Fish to Lightening McQueen, and built puzzle, after puzzle, after puzzle. He soaked in all the attention and then while sitting across from me, out of the blue, he aks, "Mommy, will Cecily always have her tube?"
If I wasn't sitting I would have fallen over. Noah used to think everyone had a tube. We were in no hurry to correct him because we like that he treats Cecily just like he treats everyone else. He always sees what she IS doing versus perhaps what she is not doing. I LOVE that! He is always an optimist and he always tells me that Cecily will do this and that when she gets bigger. She will. He knows it! (And while I pray for it there are days when I am not sure that I KNOW it). I believe in Cecily and I am amazed by Cecily but I try to live in the every day versus worrying about what may be. So when Noah asked me this question I just decided to say, "We don't know. But... we do know that Cecily is getting big and strong and she'll eat when she is ready." Then in typical Noah fashion he was on to his next topic... what was for lunch - and by lunch I mean his fourth meal of the day...
So this morning when we piled into the mini-van this morning for a very early appointment at Childrens I kept thinking about Noah's question. Would she have the tube? Was I doing enough to help her transition from the tube? Should I be pushing oral eating more? Is her reflux ever going to go away? The haunting questions of wondering if I was doing enough just played over and over in my head.
The rain was coming down and Cecily was crying just to see the all-to familiar Radys Hospital building. She has a new awareness that comes with age and the tears form before she even sees the white coats. I kept saying, "no ouchies today" but she just looked at me with those big blue eyes. The tears continued as she was weighed and measured and I wondered how the morning would continue.
I flashed back to how the day started... Up at 5am, broken coffee maker, subsequent coffee flooding along the kitchen floor, a lost lunchbox for Noah, and our lovely nurse Kim called out sick. Add Cecily's double poop resulting in a double change of clothes (all before 7:30am... and I was ready to pile everyone back into bed.) It was going to be one of those days.... but it wasn't!
Miss Nancy, our favorite GI Nurse, greeted us with her smiling and gentle face. Cecily beamed. We chatted about her amazing progress and Cecily doled out the smiles and looked quite proud. Despite the two hour wait between check-in and Doctor arrival the visit was great. Cecily's growth chart was something I had dreamed about... the dots were plotted with a very big upward curve, she is perfectly proportionate, and she weighed in at a beautiful 24 pounds! We have spent a lot of time in the GI clinic and I am not going to say it was all just peachy. It was definitely not. But today the sun shined down through the rain and we checked off our goal sheet and gave Cecily some new stretch goals which will hopefully reduce the amount of time she spends attached to her feeding pump. All good things ahead!
We may not have an answer to Noah's question. But we do know that Cecily is doing great. She is saying Noah now - with conviction! She is waving hi and bye and she can point to her nose and her head and her toes. She is standing for fifteen minutes (her personal record) and with assistance she can finger walk. These are all amazing accomplishments and she is working very hard. She is an inspiration. She will do whatever she sets her mind to - when she is ready! Onwards and upwards!
If I wasn't sitting I would have fallen over. Noah used to think everyone had a tube. We were in no hurry to correct him because we like that he treats Cecily just like he treats everyone else. He always sees what she IS doing versus perhaps what she is not doing. I LOVE that! He is always an optimist and he always tells me that Cecily will do this and that when she gets bigger. She will. He knows it! (And while I pray for it there are days when I am not sure that I KNOW it). I believe in Cecily and I am amazed by Cecily but I try to live in the every day versus worrying about what may be. So when Noah asked me this question I just decided to say, "We don't know. But... we do know that Cecily is getting big and strong and she'll eat when she is ready." Then in typical Noah fashion he was on to his next topic... what was for lunch - and by lunch I mean his fourth meal of the day...
So this morning when we piled into the mini-van this morning for a very early appointment at Childrens I kept thinking about Noah's question. Would she have the tube? Was I doing enough to help her transition from the tube? Should I be pushing oral eating more? Is her reflux ever going to go away? The haunting questions of wondering if I was doing enough just played over and over in my head.
The rain was coming down and Cecily was crying just to see the all-to familiar Radys Hospital building. She has a new awareness that comes with age and the tears form before she even sees the white coats. I kept saying, "no ouchies today" but she just looked at me with those big blue eyes. The tears continued as she was weighed and measured and I wondered how the morning would continue.
I flashed back to how the day started... Up at 5am, broken coffee maker, subsequent coffee flooding along the kitchen floor, a lost lunchbox for Noah, and our lovely nurse Kim called out sick. Add Cecily's double poop resulting in a double change of clothes (all before 7:30am... and I was ready to pile everyone back into bed.) It was going to be one of those days.... but it wasn't!
Miss Nancy, our favorite GI Nurse, greeted us with her smiling and gentle face. Cecily beamed. We chatted about her amazing progress and Cecily doled out the smiles and looked quite proud. Despite the two hour wait between check-in and Doctor arrival the visit was great. Cecily's growth chart was something I had dreamed about... the dots were plotted with a very big upward curve, she is perfectly proportionate, and she weighed in at a beautiful 24 pounds! We have spent a lot of time in the GI clinic and I am not going to say it was all just peachy. It was definitely not. But today the sun shined down through the rain and we checked off our goal sheet and gave Cecily some new stretch goals which will hopefully reduce the amount of time she spends attached to her feeding pump. All good things ahead!
We may not have an answer to Noah's question. But we do know that Cecily is doing great. She is saying Noah now - with conviction! She is waving hi and bye and she can point to her nose and her head and her toes. She is standing for fifteen minutes (her personal record) and with assistance she can finger walk. These are all amazing accomplishments and she is working very hard. She is an inspiration. She will do whatever she sets her mind to - when she is ready! Onwards and upwards!
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