Wednesday, May 7, 2008

GI update

Monday was our 4 month appt (since the last one) with Dr.Kobak in GI. We saw him in mid-January before our trip to Cincy. I went into the whole drama from our visit with Dr.Kuhn in December (when she wanted to do the redo, AGAIN and stick in a colostomy) on why we went to Cincy, blah blah blah and how I will never ever regret doing what I did. He could tell I was still pretty bitter about how things went down and said you have to do what YOU think is best for your child, no matter what a doctor tells you. And once I showed him her new butt, he was really impressed-he said it was night and day compared to what it was before. I think is silently grateful that he really doesn't have to manage this end. And I told him about the amount of LT she is on (2.5ml) and he said if you have to go up, don't be surprised and since it's plant-based, don't worry about getting "dependent" on it. Pretty much he told me that if Cincy is following up with her, whatever they say goes 'cause they are the butt Gods as we know them. He is happy she is off the Miralax and said don't stress about potty training-it'll happen when it happens.

Now on the GI front. We have been off the Prevacid since December of 2006 (she was 6 months old) and our past upper GI studies have shown no sign of reflux. The last study done in January of 2008 showed no narrowing in her esophagus and no reflux. I was thinking we were off the hook for awhile. WRONGO. He wants another upper GI done early next month to check for reflux and to make sure the esophagus is growing with her body and not stricturing down. She has grown 3 inches and gained 3 lbs since we saw him in January and b/c of this growth sprut, he wants to check. And then we will do another upper GI in December to end the year. If this one looks good and the one in December looks good, we should only have to have this done 2x in 2009 and once in 2010. After that, she'll be 5 and that will pretty much be the end of that test unless she starts gagging/refluxing. We have been having the UGI done 3x a year since birth so you figure Emma would be a pro at this by now......

Can I tell you all how much I HATE HATE this test? It's really quite horrible having to strap you down on a table, in a dark room, with 2 huge machines and making you drink a nasty white liquid while they turn you sideways on a table. The one in January was the worst yet-the nurse should have been shot (I should have stashed a gun in the diaper bag LOL) so this time around, I am having child life there and if I get the same nurse, I am going to politely ask for a new one. The nurse shall be 1-giving out stickers before the test 2-not shoving the bottle/cup in her mouth when I have two good hands to do that 3-not bitch about how tired she is and how she is so far behind ect. Not too much to ask for right?

We go Monday June 2nd at 7:30am, the first one of the day. Lovely start to the week. If there is some narrowing at the site of her inital repair, he might leave it alone and see how the December UGI looks. However, when we were in the same boat last year (UGI 12/06 and then 5/07) there was MAJOR stricturing and they did the dilation under GA in June. It's not a bad procedure but it still an all morning affair with Same Day Surgery and the whole sedation/recovery thing. Blah! I will only think happy thoughts for this :) In retrospect, Dr.Kuhn did an amazing job with the TE/EA repair-we honestly have not had the problems other kids have had (no reflux/tearing/dilations monthly) and her scar is hardly noticable. She did great with that, not so great with the butt thing.

Off to watch the American Idol boot-off! Toodles!

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