Wednesday, January 30, 2008

Hedgehog Day

Tonight, while my family enjoyed a night out at one of our local restaurants, Meghan provided us with some comedy.

"Mommy, guess what! Guess what!"

"What?" I responded.

"Miss Amy says it is almost Hedgehog Day." As she said her profoundly exciting news, she gestured in an overly animated way. As a three-year old diva fashionista, she has been carefully studying my gestures and has decided that a gesture is apropos with every word she says. Honestly, it makes me giggle a bit, but she doesn't seem to care or notice. She even cocks her head to the side as if to emphasize her point even more.

"Meghan, do you think she meant Groundhog Day?" I inquired with a straight face, yet sly grin.

"Uh huh." She responded without skipping a beat. "If the sun comes out and he sees his shadow, he will go back to sleep. If it is cloudy, winter will go 'way soon."

While she didn't have the Groundhog Day details quite straight, it was so cute to see her professing her newfound knowledge courtesy of preschool.

Tuesday, January 29, 2008

Boston Marathon, ALF Run for Research

I feel so blessed and honored that Gracie and Meghan have been matched again with Jen Davis, a runner in the Boston Marathon. Jen will train and run in the marathon while wearing Grace & Meghan's names on her back.

Last year, the American Liver Foundation raised over 1.2 million dollars in the Run for Research. I'm just so excited and honored that she is running for my girls. It makes me feel so good to know that an almost stranger can care so much, and do so much good for herself and others.

Jen, we will be cheering for you on April 21st. Thank you so much for your dedication to raising money for liver research. We appreciate it more than you'll ever know.

Please consider contributing to Jen's goal of raising funds for research, here is her online donation page:

Sunday, January 27, 2008

Preeclampsia/HELLP Claims Another Life

This news just makes me sick. As one of my fellow preeclampsia survivors said, there are no words for when baby twins and their daddy have to go on living their lives without their mommy/wife. Awful...simply awful.

Preeclampsia/HELLP claim another beautiful soul

Friday, January 25, 2008

Longitudinal Study of Alpha-1


Today, I was notified that the Cholestatic Liver Disease Research Consortium (CLiC) has begun the longitudinal study of the causes of intrahepatic cholestasis. Last fall, I interviewed the chief investigator, Dr. Ron Sokol, who explained how the study works. See this post to read that article.

As much as I'm excited and will be enrolling my daughters in this study, I'm equally upset that it will require me to add yet another set of tests for both Grace & Meghan. They are easily traumatized by blood tests, and while this research may help them down the road, it means that they must sacrifice some of their DNA. This is the part of their Alpha-1 that I don't like. Making them participate in research gives me some pause, but I know that this study is being conducted to try to figure out why some people with Alpha-1 never develop significant liver disease and others develop it at birth like Grace did. Understanding that may lead to a cure.

In any case, I hope that parents of Alpha-1 children sign their kiddos up for this study. It is a way for us to contribute to a possible cure. I know they need over 250 Alphas to make this study work. Here is the email I received. Please consider enrolling your Alpha-1 child:

This is an update from the Cholestatic Liver Disease Consortium. The following study is currently recruiting participants. This update provides information such as a study summary, eligibility criteria, and a list of participating center locations. If you are interested in participating in this study or you have more questions, please contact the center nearest to you.

Study Name: 6001 - Longitudinal Study of Genetic Causes of Intrahepatic Cholestasis
Study Status: Recruiting
Participating Centers and Contact Information

Children's Memorial Hospital (Chicago) (CLIC) < i>(New)
Chicago, Illinois
Principal Investigator: Peter Whitington, MD
Contact Person: Krista Tuzinkiewicz
Office: 773-975-8523

Cincinnati's Children's Hospital Medical Center (CLIC) (New)
Cincinnati, Ohio
Principal Investigator: James Heubi
Contact Person: Jan Dietz, RN
Office: 513-636-7266

Mount Sinai Medical Center (CLIC) (New)
New York, New York
Principal Investigator: Frederick Suchy, MD
C ontact Person: Sanobar Parkar, MD
Office: 212-659-8046

St. Louis University (CLIC) (New)
St. Louis, Missouri
Principal Investigator: Jeffrey Teckman, MD
Associate Professor of Pediatrics and Biochemistry and Molecular Biology
Director, Pediatric Gastroenterology and Hepatology
Saint Louis University School of Medicine
Cardinal Glennon Children's Medical Center
1465 South Grand Blvd.
Saint Louis, MO 63104
Office 314-577-5647
research coordinator for CLiC, Vikki Kociela, e-mail:

The Children's Hospital (Denver) (CLIC) (New)
Denver, Colorado
Principal Investigator: Ronald Sokol, MD
Contact Person: Elizabeth Esterl, RN,MS
Office: 720-777-8430

Washington University School of Medicine (CLIC) (New)
St. Louis, Missouri
Contact Person: Rosemary Nagy, MBA
Office: 314-454-2295

Monday, January 21, 2008


I've been stacking them up for over five years. They were not in piles of any organization. They were not organized by size. They were not organized by age. They were falling down and tipping over under their own weight. They were neglected. They were hidden away. Many of them I could not see. They were avoided until today.

Today, they helped me to face my past and acknowledge my present.

They are a symbol of what I feel could have been. They are shadows of my past. They hit me in the pit of my heart. They get to the core of my being. They evoke my deepest regrets and failures.

They run the gamut of smallest to large. They were supposed to represent a time of joy and pride. Simply put, they make me cry.

They are my daughters' baby clothes. Each one I touched evoked a different memory.

The tiny purple knit hat which Gracie wore the first time I held her. I was so scared that I'd pull her central line out of her scalp. I couldn't really see her just that large hat on her tiny 3 pound body. I remember thinking it looked like a Smurf hat. That hat I kept. I couldn't part with it.

Preemie socks which remind me of the smallest feet I've ever seen. On Meghan's legs, those socks went all the way up to her thighs. I kept those too.

Onesies which had spit up stains. Little pink sleepers and the cutest little dresses. All of these memories remind me of what I can no longer have. My body can't be pregnant anymore...not without endangering my own life and the life of any unborn baby. Preeclampsia took that opportunity away.

Those tiny little clothes are now packed away into a large shopping bag and are destined for my local Goodwill donation center.

I only hope that they bring someone else joy, pride, happiness, and good memories.

Hailey Needs Continued Prayers

Tante's little peanut is still not doing well in the NICU. I don't have permission to post the details, but please know that Hailey needs your prayers/positive thoughts. Thanks!

Sunday, January 20, 2008

Go Pack Go!

Today, the Green Bay Packers meet up with the New York Giants for the NFC Division championship. It is a very green and gold day on the frozen tundra, where we currently have a temperature of -6 degrees. Burr!

Saturday, January 19, 2008

NSAIDs and Alpha-1 Antitrypsin Deficiency

Hmmm! I guess the children's ibuprofen in use at my house should be discontinued. Interesting, and I'm amazed this isn't more well known within the Alpha-1 community. Obviously, this hasn't been tested on humans, but animal models are really quite interesting and can show causal relationships.

Non-Steroidal Anti-Inflammatory Drug Increases Liver Damage In Mice Carrying Mutant Human Gene

Alpha-1-antitrypsin deficiency isn't a term that rolls right off the tongue. But people diagnosed with this genetic disorder learn its potential effects well. They know they shouldn't smoke or be around smokers because they are at increased risk for developing emphysema at a young age. In addition, some patients with alpha-1-antitrypsin (AT) deficiency can develop serious liver disease. But predicting which of them are at risk for liver disease is not yet possible.

Now research performed at Washington University School of Medicine in St. Louis sheds light on the mechanisms that contribute to liver disease in alpha-1-AT deficiency patients. Using an experimental mouse model of the disorder, the researchers investigated the effects of a non-steroidal anti-inflammatory drug (NSAID) on liver injury. An estimated 15 to 20 million people in the United States take NSAIDs like ibuprofen and naproxen on a long-term basis. Read the rest at:

Friday, January 18, 2008

Shiny Teeth

A recent trip to the dentist, which went amazingly well and completely uneventful. Imagine that!

Grace getting ready to begin with "Meow Meow" her Fur Real Friend

Grace's cleaning in progress

Meghan's first cleaning. She did great!

Don't ya love those shades? :)

Thursday, January 17, 2008

Prayers for Hailey

Tante's little girl, Hailey, is having a very rough day in the NICU. Please send positive thoughts and prayers that she can fight off her circumstances.

Friday, January 11, 2008


Tip: If you are the least bit squeamish, you may want to stop reading at this point. You can't say that I didn't warn you.

"Moooooommmmmmmmmyyyyyyyyyyyy!" came out of the darkness of the girls' room. I had fallen asleep about 45 minutes before then and was startled awake by the sound of Meghan's voice.

Her voice awoke a primal force within me, the mommy reflex. Before I even knew why I was in motion, I had arrived next to Meghan's bed. I could see the shadowy outline of her head along with its curly mop of messed up bed head. What I smelled was too familiar, and made me want to wretch. I suppressed that urge to wretch.

"Mommy! I puked," wailed Meghan as she began to wretch again. I had no clue where the first location was of the offending vomit, but I figured that it was probably matted into her hair and pillow.

At this point, the mommy, who didn't want to wake up big sister, the sleeping giant of five year olds, who also didn't want to have to clean the mattress, who desperately wanted to keep said pukey puke essence away from her, scooped up the puker and ran at top speed about 10 feet into the solace of our upstairs 1946 vintage bathroom. While pointing Meghan's face away from my body in mid-run, Meghan vomited onto the goldenrod tile sprawling onto the floor of my bathroom. I was thankful she missed the carpet in the hallway, though.

I resisted the urge to acknowledge the squishy spaghetti noodles suddenly appearing at and under my toes. I slipped a bit as the liquid vomit squished in between my toes. As I veered right toward the toilet, I noticed that the toilet lid was actually closed. Why oh why hadn't Grace left the lid up on this day? Even though having the toilet seat lid down is the compromise in our house, I was cursing the lid inside my head. Meghan was about to blow again, and I knew it was futile to believe that I'd get the lid open in time.

As I predicted in that split second analysis, Meghan let loose on the wall next to the toilet and lacquered the Kandoo wipes box on the floor next to the commode. Spaghetti noodles along with Meghan's nightly strawberry-flavored pediatric drink painted my walls, and then began their gravity induced slide onto our tile floor. The word gross appeared in my thoughts.

At this point, my urge to vomit too became quite intense. I stuffed the urge down again just as Meghan began to cough, sputter, and choke a bit more. A long trail of saliva was running down her chin, and she coughed out, "I puked. I puked. I puked."

"I know Meghan. Try to take a breath honey. Calm down. You're almost done puking," I replied reassuringly. As quickly as I said those words, my karma, my bad luck, my stupid urge to be ever the optimist, or something to that effect came back to bite me square on the butt.

Meghan began to erupt again and again and again and again. Well, you get the picture. She eventually proceeded to vomit bile and then finished it off with some trips to the potty. All night long, Meghan vomited in about 12-14 minute intervals. She finally wrapped up the puking at 5:41 a.m. Yes, I was watching the clock because my mind kept lulling me into a false sense of this round of puking would be the final one, and I could actually get some much needed sleep. Dear husband, Charlie, was initially outside shoveling our sidewalks when my initiation into the festival of fun called a child puking all night long. He joined my fun and spent the night moving a "puke bowl" underneath Meghan's chin as we both decided we need to lie down even though sleep was no where in sight. Meghan, who Charlie dubbed as Kicky McPoker, squirmed throughout the night as her tummy would revolt. When we were not dealing with vomit, we were resting poorly as she kicked, whined, and begged for something to drink. "I'm thirsty. I'm thirsty." (Yes, we did fall into that trap twice. She asked for water. We felt it was finally over, and low and behold, that was not the case. Ugh.)

It was a sleepless night. It was one for our parenting record books, but still quite doesn't live up to the Norovirus episode of 2006. Meghan's perfect delivery of vomit into the Christmas gift bag I was opening still tops the list. I'm sure when our children have left the nest and Charlie and I want to reminisce we may recall this day. For now, I'd rather forget.

I just hope and pray that this particular stomach virus stays far away from me and anyone else who steps foot in this happy home.

Thursday, January 03, 2008

When I Grow Up...

Tonight, while the girls and I were gathered around the dinner table, Meghan shared some of her 3-year old logic.

"Mommy! When I grow up, I wanna to be a cheerleader."

"Oh really, Meghan?"

"Uh huh. And when I'm done, I wanna be a mommy like you."

(Insert sound of Mommy's heart melting just a bit.)

Grace chimed in, "I want to be a worker when I grow up."

I asked, "What kind of worker Grace?"

"A worker like you, Mommy! I want to work where you work Mommy."

(Insert sound of Jen's inner moan regarding her workplace.)

"Oh that is so nice Gracie, but I'd rather you work someplace where you'll love what you do."

Grace added, "I want to work with you Mommy."

"Mommy hopes that she won't work there when you grow up Gracie."

Meghan joined in again with, "I want you to be my baby Mommy."

"Well that would be nice Meghan, but I don't think I made a very nice baby when I was a baby. Ask Grandma Sherry. I cried and cried and cried for nearly a year."

Meghan asked, "Why?"

"I had an owie tummy. So, you want to be a cheerleader Meghan?"

"Uh huh, Kafaleen (Kathleen) wants to be a cheerleader too."