Thursday, June 11, 2009
Resorted to a poop gallery...
Okay so I have resorted to taking pics of poop.... Seems to be a much simpler solutions, then for me to continue to describe it all the time... Lane takes his enzymes really well, it fact he in only five and swallows two pills at a time... I just cant seem to get the poop right... He seems to be stuck somewhere in between.... It seemed to work at first, but then it just slowly started not working so well... He has not gained any weight and needs too, so now I am wondering if this is where part of the problem is.... So I have resorted to my poop gallery and paying really really really close attention to the amount of food vs the enzymes... whew, my teenagers are just glad i am not taking pics of their poop....lol..
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Hi Marcy,
ReplyDeleteThanks for visiting my blog! It was great reading yours...just spent at least a half an hour reading..should have been on my treadmill...:) I know this is a hard time for you....being newly diagnosed is tough. I cried all the time the first year Zoe was diagnosed. I still cry, just not as often!:) We are all in this crappy CF boat together, we all understand. Vent to us mom's, ask questions, etc...you will get ahold of it...as much as anyone can anyways with CF.
Also, about DF508 being the most severe, it actually is the most common, but is a class 2 gene. There are 5 classes of genes. 1 being the most severe, down to class 5 being asymptomatic. So....when you find out your sons other gene....you might have a better understanding.Zoe has a class 1 and the class DF508.How they work together and if/which one overrides the other....I don't know...there isn't much info out there on that part.
I see you have cysticfibrosi.com on your sidebar...what is your user name there? I am Zoe4life.
Take care, give yourself and Lane a big hug!!
Jada
Thanks for reading my blog! It's great to have many different CF mommy's all over the place! I hear ya about the poop watch! Lucy's is very loose and very often but still manages to keep weight on. I don't know how she does it!! One thing is for sure...I can't wait until I don't have to change diapers anymore!
ReplyDeleteGreat idea, I think I might start taking photographs of Nathan's poop. How on earth are we supposed to describe the poop? Nathan is my first child, so CF poop is all I know, I have nothing to compare it to.
ReplyDeleteI will pray for your family and Lane especially and am going to add you to my blog list if you don't mind.
ReplyDeleteHello! Pics are a great idea! Is it not crazy to think where we were before kids, and now we carry on poop conversations!! Can't wait to read more!
ReplyDeleteI think it is fabulous that we can carry a semi-serious conversation about poop AND photograph it! When Lucy was still in the NICU, we were waiting for almost 2 weeks for her to poop because of her surgery. I have a pic of her first poop in her baby book!! The nurses thought I was a crazy mom but I just wanted her 'pipes' to work! Now she can clear a room with just a fart! Yikes!
ReplyDeleteI know with Olivia we have to have her enzymes just right, but she also gets a teaspoon of Miralax in with every meal (it is tasteless and clear so she doesn't notice it). Ever since we started the Miralax, her bowel issues (constipation, extreme gas, prolapse rectum)have been tremendeously better - almost non-existent. Miralx is over-the-counter and helps decrease the risk of your little CF'er getting DIOS.
ReplyDeleteSorry, if you already knew all that and I was rambling. I just try to pass on anything that has worked with Olivia.
Lil Chris mom said to tell you she passed you onto us...lol.....about the poop - it dont just come right - it takes patience, adjusting food and meds and enzymes etc but you will find a happy medium - whether it stays like that ...I dont know. My daughter (she is 28 this year) still battles with her tummy - so I reckon its an on going thing....chin up - you still will live with the stinky poop for yonks to come lol.....ps..when they let it go - it clears miles *giggle* My girl is Delta F508 and G60X - heaven only knows what that means...sorry getting carried away here...hugs to you and all the family especially Lane. Charm xxx
ReplyDeleteHey there, got to your blog through Lil Chris' link. Just know that you are never alone! There are great CF mommas out there that are always supportive and willing to lend a hand. My four month old son Gavin was diagnosed at 5 days through the newborn screening test, he was diagnosed in mid February like your son (I think?) so we are both new to this CF world. Please feel free to visit our blog and I am going to add you to mine :) Much love!
ReplyDelete-Jen
Hi Marcy!
ReplyDeleteThanks for commenting on my blog! To answer your question about any reason to find out Lane's other gene....the biggest reason I can see is for the studies/and or new drugs coming out. Take for instance, VX770, geared for the G551D gene.
Hope you guys are having a great weekend! By the way, great idea taking pics of the poop, we laugh that our whole family can literally have an entire 'poop' discussion at the dinner table now! :)
Take care,
Jada