So today, I found myself in a bit of a bidding war on E-bay...for Enfamil Pregestimil! It ended tragically with me being outbid by $1 on a case of 6 cans. I can only hope that it's a fellow "Liver Mom" who took my advice a this week and resorted to E-bay for purchasing this specialized formula. Meanwhile, I have decided to donate the many cans of Similac Neosure formula that I purchased just days before Elise was diagnosed with BA and switched to Pregestimil....these cans of Neosure are going to expire in a few months, and I know there are families with premature babies who could use it!!
Anyway, Elise's liver doctor still has not called me to discuss her last liver panel; however, he did have his nurse call me and relay the message that he wants another liver panel drawn sometime within the next week. I agreed to bring her to the lab on Wednesday, since I will be at Texas Childrens Hospital anyway on that day to meet with the liver clinic dietician and to get a weight check. I don't like this "message" thing though. I feel that the doctor needs to call me himself regarding results of lab work, especially when he is asking for another liver panel before our next liver clinic appointment. I mean, I have questions now....like, "why do you want another panel so soon?" I thought her last results, which I posted yesterday, looked good....Is there something I'm missing?? WHY can't these doctors understand that this is MY BABY!!! We're not talking about just a fax or some meaningless sheet of paper with random numbers....this is my child's life...and MY life!!
On a happier note, my parents are here now to visit...Grammie and Paw!! Ethan could not be more thrilled!! He has been grinning, ear to ear, since they walked in the door! Elise is fascinated with them and is enjoying the extra loving. We all went out to eat tonight at Outback...we had steaks, and I enjoyed a glass of Merlot, which was wonderful!
Of course, if we're talking about wine, I must say I may or may not have enjoyed a glass of wine or so at home over the last couple of weeks. Ahhhh....a nice bubble bath and a glass of wine is about the only "me time" I can get these days....and I'll TAKE it!! But since I've decided that I'm due for some additional "me time" this week, I've scheduled a facial and pedicure at the Lavish Salon & Spa for Saturday. My mom will be partaking in the spa treatment as well. She deserves it....she's been "my rock" not only now but throughout my entire life.
Wine, bubble bath, spa treatments....just what this "Liver Mom" needs right now...the perfect package... worthy of a bidding war, except I've already won. I've reserved these things--this special time- for myself...and that, my friends, is one of the best lessons I've learned throughout this experience thus far: You must take time out for yourself.
Wow - I feel like I haven't heard the word "Neosure" in decades.....and yet it was just 2 years ago that we were buying that stuff like it was water. Claire had to use that formula for a while, but Grace had GI issues and needed Elecare (sp?). That stuff was $50 A CAN! Suffice it to say that we ate ramen noodles while our girls sipped on what could only be presumed to be the "filet mignon" of formula.
ReplyDeleteI'm so fascinated with all of this medical stuff - even though it terrifies me to my very core. I can honestly say that following you through this epic struggle for your child's life has made me remember what it was like to do the same thing. My girls were never in grave danger as Elise has been, but there were scares of awful things. I pray for you all daily. Thanks for keeping us informed.