Yesterday I took Odette in for her GI check up with Dr. Pohl. We have been doing check-ups with him about monthly, but we are always inpatient when we see him. This time it was at the new Riverton Hospital-Primary Childrens Outpatient Clinic. That is a very nice hospital. It was fun just like Primary Childrens, but it seemed so big, roomy and amazingly clean for all the traffic I am sure it gets. I forgot my camera, but Odette was in love with these really tall cylinders that were full of balls, beads and bubbles. The stuff just floated around as the water changed colors.
For the most part, we got excellent news. Odette has gained 0.2 kg, which means she is up to 18 pounds! (We can almost turn her around in the car seat!) This could be because she has finally quit puking. For about two weeks now I haven't had to clean up a barf mess. She is also on really high calorie formula to help her gain weight, so between the two, I think it is working. I was promised she would quit puking someday, but I had a hard time believing it would ever come. Prayers are answered, sometimes you just need to be more patient than what I have been.
Since she is growing and looking well, we get to stop two medicines! Hurray, I think that this should only help her feel more "normal". We are hoping that stopping the prevacid(helps with reflux) and reglan(helps your stomach empty faster) won't make her start to puke again. If she does, we just start these up again. I have to admit, I am really stressing about stopping the drugs cuz I love our puke-free home now, but stopping them also will save big bucks every month and her feeding tube won't be getting easily clogged with the prevacid.
Our last item of business was that Odette needs to have one more scope to make sure that the allergic cells they found in her intestines the previous scope are gone. Then we will be able to quit the singulair and all her GI issues should be resolved! We are trying to get it so that she only has to be put out once and do the scope when she goes in for her last lumbar puncture on June 1st. If this doesn't work out, because GI is such a busy group (it is like a two month waiting period to be seen), we will plan it for July and have it done in Riverton. I can't believe it...the end really is coming! I am soon to have just a regular, busy body, moody, non-puking, almost two year old daughter that doesn't have cancer!
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Oh my goodness, Stephanie! This makes me want to stand up and dance around! I'm so glad things are going so well. I'll keep my fingers and toes crossed that taking her off the prevacid and regland will not make her start puking again. We need to come see you again soon!
ReplyDeleteP.S. Aaron just came over to the computer, saw Odette's picture and said "Owie, Mom?" (Referring to her feeding tube). Then he proceeded to kiss her better over and over. :) We're all pulling for her!
ReplyDeleteAWESOME! Awesome! Awesome! Sounds like she's making great progress! It's so good to read your positive thoughts because it helps me to remember I need to be more positive in my struggles!
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