So yesterday, I bought a HealthOMeter infant/ toddler scale to have at home so that I can monitor Elise's weight gain a littler closer. Now I'm asking myself, "Why did I even "weight" this long??" It's a great purchase, well worth the money, as far as I'm concerned. Today, Elise weighs 11 lb 4 oz, which is just a 3 oz gain in the past week. I called Elise's dietician to review everything this morning...and she said that she's okay with the slow gain for now...at least she's gaining! She said that it is normal for babies to slow down with the weight gain at Elise's age. That makes me feel a little bit better.
Also, Elise's doctor says her Pre-Albumin level is GREAT, which is a good indicator of nutritional status.
Anyway...now that I have an infant scale at home, I can stop bringing her in to the office every week for weight checks. I'm going back to work in two weeks, so this will be a HUGE help! She has clinic appointments often enough as it is...it will be so nice to eliminate the additional "weight check" appts in between.
Speaking of appointments, I was not able to get an appointment for Elise with the pediatric Urologist until the end of April! I was hoping for something a little sooner....like this week...but no luck. I HATE waiting for answers. I don't even like waiting one day, so having to wait two months is really pushing it... lol!
The best part though is this...I called Elise's doctor to tell him that the earliest appt I could get is April 24, and I asked if he or his nurse could call and try to get in a bit sooner. He told me, "You don't need to worry about it...April should be fine." Well, maybe he shouldn't have ordered a VCUG test and made a referral to a Urologist if he didn't mean for me to worry about it. That train has now left the station! Seriously, I will try not to worry so much about the urinary reflux....but it's very difficult.
Anyway, Elise is still generally doing very, very well!! Her labs are terrific, she's eating well, slowly gaining weight, smiling, laughing, playing....and LIVING!!! Two months ago, I swore that I would not let Biliary Atresia hold Elise back in any way...and let me tell you... it is not.
This blog is to document and share my experiences as a "Liver Mom," as I have affectionately begun calling myself. My daughter, Elise, was diagnosed with a rare pediatric liver disease "Biliary Atresia" (BA) shortly after birth and has now undergone a liver transplant. Although this has changed our life and daily routine, it is my mission to ensure that BA and transplant does not hold Elise back; I am devoted to creating as normal a life as possible for her.
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