I've been meaning to post this for several days now...but this week has been busy, confusing, and fun...all at the same time. So here's to catching up!!
On Wednesday morning, I brought Elise to her "liver clinic" appointment at Texas Children's Hospital. That's where the confusion set in. After the initial weight check and examination, the doctor said, "Well, she looks great!" Then I started asking questions... a lot of them. I concentrated the doctor's attention on her abdomen, which has been distended for months now. He ordered an ultrasound, which is exactly what I wanted, and it was not long before the results were in. As we discussed the report, I was happy to hear that there appears to be just "a trace" amount of fluid...not enough to treat; however, the next issue was the scarring on Elise's liver, which was apparently visible on this ultrasound. My initial reaction was that this is not really new information, since Elise's surgeon already informed us that some of her liver tissue was found to be cirrhotic. But then, the doctor told me that the ultrasound seems to indicate that Elise's liver may be a little more sick then we've been thinking. He said that he will give her 2-3 more months to "declare herself," meaning that her condition over the next couple of months will basically dictate our next steps...either we will "stay the course" or "take more aggresive measures." OMG...enough with beating around the bush, right? I asked, "Are you talking about listing her for transplant?" Her doctor then told me that he's just not certain whether she will actually need a transplant within the next year, or even 2 years, but he feels very confortable saying that she will require a transplant before age 5. Can you sense my frustration? I mean, what exactly am I supposed to take from this? I suppose the bottom line is that only God knows what the future holds.
Anyway, the good news is that Elise does not currently have Ascites (fluid in and around her tissue), and she is currently meeting her weight gain goal of 24-30 grams per day. She weighed 12 lb 1.5 oz and was 23 inches long at clinic on Wednesday!
On Wednesday evening, I enjoyed a night out with several of my fellow "liver moms." We went to "Painting with a Twist" in Friendswood. SO much fun!! And to make it even better, they made it a fundraiser for us, with 50% of the night's profits benefiting the American Liver Foundation and Liver Walk Houston 2012. So, it was "Painting with a Purpose" for us.
On Wednesday morning, I brought Elise to her "liver clinic" appointment at Texas Children's Hospital. That's where the confusion set in. After the initial weight check and examination, the doctor said, "Well, she looks great!" Then I started asking questions... a lot of them. I concentrated the doctor's attention on her abdomen, which has been distended for months now. He ordered an ultrasound, which is exactly what I wanted, and it was not long before the results were in. As we discussed the report, I was happy to hear that there appears to be just "a trace" amount of fluid...not enough to treat; however, the next issue was the scarring on Elise's liver, which was apparently visible on this ultrasound. My initial reaction was that this is not really new information, since Elise's surgeon already informed us that some of her liver tissue was found to be cirrhotic. But then, the doctor told me that the ultrasound seems to indicate that Elise's liver may be a little more sick then we've been thinking. He said that he will give her 2-3 more months to "declare herself," meaning that her condition over the next couple of months will basically dictate our next steps...either we will "stay the course" or "take more aggresive measures." OMG...enough with beating around the bush, right? I asked, "Are you talking about listing her for transplant?" Her doctor then told me that he's just not certain whether she will actually need a transplant within the next year, or even 2 years, but he feels very confortable saying that she will require a transplant before age 5. Can you sense my frustration? I mean, what exactly am I supposed to take from this? I suppose the bottom line is that only God knows what the future holds.
Time for an Ultrasound!
All done! Going home now!!
On Wednesday evening, I enjoyed a night out with several of my fellow "liver moms." We went to "Painting with a Twist" in Friendswood. SO much fun!! And to make it even better, they made it a fundraiser for us, with 50% of the night's profits benefiting the American Liver Foundation and Liver Walk Houston 2012. So, it was "Painting with a Purpose" for us.
Painting with a Twist 3/21/12
Fellow "Liver Moms"with our works of art..."Painting with a Twist" night...
Tara, Erin (me), Harriet, Jennifer, Andria, and Kelly
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