Friday, January 6, 2012
Wednesday, October 5, 2011
Monday, April 11, 2011
Did you take your enzymes?
Does this phrase haunt you? I don't even have the disorder and goes through my head about 457 times a day.
Just last week I was preparing her breakfast, going through the regiment, lining up the meds in the proper order for her to packman through. She was eating her cereal with whipping cream when I shouted the infamous phrase:
Taking enzymes has become a reflex for Ella and despite my anxiety about making sure she gets them, it has become a natural thing for me, too. We were laughing so hard at ourselves because we realized: of course she took them and how could we forget? It's not like we just left our keys somewhere. I had to pry off the child(adult) proof cap and she had to swallow 3 big honking pills. It was cute seeing her laugh at herself.
Did you take your enzymes? Did she take her enzymes?
Wait! Did she have her enzymes?I can't imagine actually having CF and hearing everyone chant this at me all day long. As if I would need a reminder. Ella has been taking enzymes since she was days old, every single day, many many times per day. Will she forget to take them when she gets older and is managing her care on her own? I highly doubt it. I do fear she will have resentment issues for the constant reminders I will probably be giving her. At times, I annoy myself while asking her.
Just last week I was preparing her breakfast, going through the regiment, lining up the meds in the proper order for her to packman through. She was eating her cereal with whipping cream when I shouted the infamous phrase:
"Wait! Did you take your Enzymes?"We both looked at each other confused, because neither of us remembered what we just did 60 seconds prior. Ella's eyes were glancing at the parade of medicine lined up across the table in front of her, trying to visualize the enzymes leading the bunch. I was frantically trying to retrace my steps. Did I put them on the table? Finally, we looked towards each other for an answer and we both started smiling until it would a full blown outburst of laughter.
Taking enzymes has become a reflex for Ella and despite my anxiety about making sure she gets them, it has become a natural thing for me, too. We were laughing so hard at ourselves because we realized: of course she took them and how could we forget? It's not like we just left our keys somewhere. I had to pry off the child(adult) proof cap and she had to swallow 3 big honking pills. It was cute seeing her laugh at herself.
Monday, November 29, 2010
Wednesday, August 18, 2010
I got into a fight with CF today
Kate: Hi CF how ya doing today? Just stop picking on my kid and we won't have a problem here.
CF: oooooh another CF Internet mom, whatta you gonna do, try shoving a pill down my throat? or blog me to death Ha!
Kate: Very funny, No. I'm going to follow Ella's care plan to the T. I'm not going to forget one treatment and I'm going to laugh and play and grow stronger and stronger with her so she will fight you herself.
CF: LMAO, yeah sure you are! I see it 30,000 times a day. You get tired and sad, you stop smiling and laughing... makes it so easy for me to win.
Kate: Oh yeah? $50 to the CFF says me and my kid aren't going to let CF stand in our way. We're going to the beach next week, we went to Cape Cod last week, we sing and dance and laugh and play. We hike and bike and watch movies all with a grin.
CF: I know, I know. Don't remind me. But that day you forget to pack snacks, I was the one laughing. lol . That night you didn't do Ella's neb, I was in my glory.... I knew I would gain control again. With all that laughing and fun crap you forget that I'm lingering in the background, waiting for you to mess up.
Kate: I did forget to pack snacks, so. I'm not perfect! That's why they invented Mcdonalds.... duhhhhh. jeez. We didn't neb that night we had a sleepover bc I planned ahead and we nebbed in the CAAAR so the other kids wouldn't think Ella was a weirdo. Your not going to win CF.
CF: What about that time in the hospital... I was winning then!
Kate: You weren't winnging. Ella and I were still laughing and smiling and making a better plan which wouldn't allow you to get the advantage again. We love eachother too much and together we will laugh in your face.
CF: oooooh another CF Internet mom, whatta you gonna do, try shoving a pill down my throat? or blog me to death Ha!
Kate: Very funny, No. I'm going to follow Ella's care plan to the T. I'm not going to forget one treatment and I'm going to laugh and play and grow stronger and stronger with her so she will fight you herself.
CF: LMAO, yeah sure you are! I see it 30,000 times a day. You get tired and sad, you stop smiling and laughing... makes it so easy for me to win.
Kate: Oh yeah? $50 to the CFF says me and my kid aren't going to let CF stand in our way. We're going to the beach next week, we went to Cape Cod last week, we sing and dance and laugh and play. We hike and bike and watch movies all with a grin.
CF: I know, I know. Don't remind me. But that day you forget to pack snacks, I was the one laughing. lol . That night you didn't do Ella's neb, I was in my glory.... I knew I would gain control again. With all that laughing and fun crap you forget that I'm lingering in the background, waiting for you to mess up.
Kate: I did forget to pack snacks, so. I'm not perfect! That's why they invented Mcdonalds.... duhhhhh. jeez. We didn't neb that night we had a sleepover bc I planned ahead and we nebbed in the CAAAR so the other kids wouldn't think Ella was a weirdo. Your not going to win CF.
CF: What about that time in the hospital... I was winning then!
Kate: You weren't winnging. Ella and I were still laughing and smiling and making a better plan which wouldn't allow you to get the advantage again. We love eachother too much and together we will laugh in your face.
Tuesday, August 17, 2010
What up G-Tube?
NO! I don't want to think about a G-Tube for Ella! I know, I know everyone who has one says "its been so great" and "I'm so healthy NOW because of it"...bla bla bla. I just don't want her to go through that..... Although, I also hate that she spends hours and hours a day just trying to consume enough calories to stop the constant hunger. Arrrrrrrg. Yes, I'm being a cranky pirate.
You know how everyone always says "you didn't do anything to cause this" "you did everything right". Well, I never believe them. HA! I knew for a while Ella's enzymes needed to be increased, I saw her everyday loosing BMI! I didn't push the doctors to do something. I usually do, and they listen. If you know what to look out for, which I do, then all I have to do is convey those signs to the doctors and they are pretty good at taking me seriously. Why I didn't push for them to up her enzymes 6 months ago, I don't know..... who am I fooling, yes I do. I just wanted a good visit-- no blood work, no disturbing news, everything to be just great and no need to change a thing because she is just wonderful. I am allowed to live in a fantasy world sometimes aren't I?
Well, now if she doesn't gain in the next two months we have the G-tube discussion. Which is fine, because I really think she will gain. Just watch, she will. She is 12.2 kg right now. We'll see.
You know how everyone always says "you didn't do anything to cause this" "you did everything right". Well, I never believe them. HA! I knew for a while Ella's enzymes needed to be increased, I saw her everyday loosing BMI! I didn't push the doctors to do something. I usually do, and they listen. If you know what to look out for, which I do, then all I have to do is convey those signs to the doctors and they are pretty good at taking me seriously. Why I didn't push for them to up her enzymes 6 months ago, I don't know..... who am I fooling, yes I do. I just wanted a good visit-- no blood work, no disturbing news, everything to be just great and no need to change a thing because she is just wonderful. I am allowed to live in a fantasy world sometimes aren't I?
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