Thursday, September 21, 2006

Laura Needs Prayers Again...Ugh!

From Laura's caringbridge page:

Thursday, September 21, 2006 11:58 AM CDT

Laura's liver is not doing well. Her liver enzymes are very high (ALT and AST in the thousands), her kidneys aren't working as efficiently as we would like. Kidney doc's are working reviewing this and can hopefully stimulate her urine flow.

For reasons we don't know her liver does not appear to be functioning at this time. But also her doc's are hoping this tren will correct itself soon. For the time being her Dr.'s are keeping a very close eye on her and are waiting.

She is comfortable and sedated.

Please once again, say a prayer for the little red-head.

Tuesday, September 19, 2006

Hooray for Laura!

Laura got her second call for her gift of life this morning. She is currently in surgery receiving her new liver. I'll be praying for the medical staff, Laura, her family, and the donor's family.

Mom Jen

23 Weeker's Blog

Oh my goodness, take a look at this peanut baby. I know I'll be saying prayers for Teeny Tiny Truman.


Friday, September 15, 2006

GI Visit Today

First of all, happy 6th birthday to my beautiful goddaughter, Chloe! :)

Both my girls visited their GI today. At first, I hesitated to post this since our community seems to be on a roller coaster this week, but as a mom, I'm happy with our visit today. I do want add my prayers and love for all of our liver families.

Even though, we waited nearly 1 1/2 hours, Grace was the most cooperative she has ever been with our GI before. She climbed up on the exam table herself, and giggled her way through the exam of her liver and spleen. She even answered the doctor's questions herself. I was a pretty proud mama and filled in a few details as needed. She really is growing up so quickly.

The GI even had an intern along to learn about our girls since the intern had never seen Alpha-1 patients before. It was quite refreshing to have a newly minted doc do a complete patient history on my kiddos. So, both Grace and Meghan received their exams twice today.

We did have one episode of 4-year old "ness" though. Or, should I say Gracieness? Grace is severely frightened of blood tests and immunizations. She was due for labs so we headed down to the lab. They called her name, and she bolted for the door to the hallway. I had to catch up to her, and pick her up. When got into the room, and she kicked up a fuss. I put her on my lap so that I could help calm her down. Well, 5 minutes later she had whipped up her "meltdown magic" and the blood draw didn't look like it was going to happen. I let her go, and told her we needed a "do-over." I took her to the bathroom, and washed her face. She calmed down a bit so I took her back for the draw. This time, she cried, but was able to sit for the test. She even watched the blood flow into the container. Whew! I was mentally exhausted when it was done, but we got those labs. Hooray!

Meghan had her exam too, and was pretty cooperative as much as a 2 year old can be. No labs for her though. She has been visiting our GI quite a bit due to weight issues. Which leads me to our really great news...

Meghan is now up to 23 pounds, 7 ounces. Our GI actually clapped with those numbers. Grace weighed 40 lbs, 2 ounces. So all-in-all, it was a good visit. Livers appear to be good based on physical assesment alone, but I don't have any lab results yet. I'm expecting the status quo of mild elevations on AST and ALT.

Wednesday, September 13, 2006

Prayers Needed for Laura

Laura, our Alpha friend from MN, received a new liver at the end of August. Well, the liver is failing, and she has been relisted status 1, which means top priority.

Please pray for her and her family! She needs all the positive energy she can get right now.

Darn Alpha-1!

Just look at this smiling face. Doesn't she have the most beautiful red curly hair?

Thanks for praying!

Monday, September 11, 2006

A Glimer of Realization

A Glimer of Realization

(Authors Note: Alpha-1 Antitrypsin Deficiency is a genetic disorder of the liver, which over time can cause damage to the lungs. Each patient with Alpha-1 takes his/her own journey with Alpha-1, but severe emphysema is often an outcome in early adulthood.)

This morning, I shuffled Grace and Meghan out of the bathroom as I was about to use some hair spary on my perpetually unruly moptop of red and gray hair. She complied, but then turned around and said, "How come you can be around hair spray and me and Meghan can't?"

I paused for a second and thought about what to say but before I tell you what I said, I'd like to try to explain my inner panic. You see Grace has always believed that our entire family has Alpha-1 except for her big sister, Kesa. She knows that Kesa has a different mommy, but until today, she thought we all were Alphas...her mom, her dad, and her sister, Meghan.

If someone might have observed our conversation, he/she might not have understood the gravity of our conversation. We used our typical matter-of-fact tones and silly inclinations to talk about it, but there IT was again: Alpha-1. One of my worst fears coming alive...Grace coming to a realization about what Alpha-1 means.

To her, Alpha-1 is just like her lunch box, or her really cool Dora backpack. It is just a part of her life like putting on her socks before her shoes. Don't misunderstand me though. In Grace's short life, she has already experienced two of our Alpha friends who moved onto Heaven. It was confusing to her that Mr. Gary and Ms. Pat weren't going to be at our "Alpha friends" support group meetings anymore. We talked about how we believe that we'll see them again in Heaven when we are very old. (Hey, maybe if I say it enough? It can come true. Peter Pan is coming to mind right now.)

Since Grace is beginning to put 2 and 2 together now, I guess I'm going to have to explain things further. She seems like she is ready, but I just don't want to be the one who has to end her naivety. She is blissfully unaware, and sometimes, I need and want her to stay that way. Heck, I'd love to still be blissfully unaware. Ain't denial grand?

We finished our one minute conversation this way:

Mommy: "Do you remember how I told you that we are all Alphas in our family?"
Grace: "Uh huh, 'cept Kesa."
Mommy: "We'll honey, Mommy doesn't have the same kind of Alpha-1 that you have. Neither does Daddy. That is why I can be around hair spray, but just a little bit. I still need to take care of my lungs too. Meghan and you can't be around it since we need to be really careful with your lungs. Don't worry though. We'll take care of you."
Grace: "Okay, mommy. Meghan lets get away from the "icky" hair spray!"

I closed the bathroom door and opened the window for some fresh air. Having not taken a deep breath during our chat, I needed the air.

Mom Jen

Sunday, September 10, 2006

Ah, I don't feel so alone anymore...


Since Wednesday's meltdown, Grace has had so many more that I can't count them. A really big one happened at a birthday party yesterday. Of course, Grace decided that she was "queen" of the party and that the actual birthday girl wasn't even a runner up. I really wanted to just curl up and die right then and there. I took her outside for a half an hour to watch her spit, kick, and whirl up her meltdown "magic." Yuck!


Thursday, September 07, 2006

An Alpha's First Day of School

Tuesday, September 5th was Grace's first day of kindergarten at our local German immersion school. It was mostly an orientation day where she could explore the classroom and the parents could ask questions. I attended with her. She did pretty well, but became bored quickly since the kids were not allowed to play with the toys that day. She stuck very close to me, but did seem to like talking to her new teacher, Frau Savignac.

The next day, 9/6, was her first official day in kindergarten. When Grace woke up at 5 AM that day, I thought it might be hard on her. As the morning went on, she kept telling me that she didn't want to go to school. She didn't want to "be a big girl."

Anyway, I took her to the before school day care program called Learning Links. Coincidentally, the day care is run by Kristen, who we met in the NICU more than 2 years ago when Meghan was born. Kristen's son, Tanner, was born at 27 weeks (like Meghan) due to preeclampsia (like Meghan again). I feel really good about Grace being in Kristen's day care. When you're in NICU, you really learn a lot about the other parents there. I know Kristen is a caring parent.

I signed Grace into the day care, and we ran into Tante Shanna right away. Grace raced over to see her, and give a hug. Then, Kristen and I walked Grace down to the kindergarten area of the day care, which is in the gym. Gracie immediately withdrew from me upon entering the gym, and tried to leave. All the while, she is sticking her index finger in her mouth with quite a worried look on her face. (This, of course, immediately created a very large lump in my throat, and I had to remind myself not to cry, too.) I took her into the hall for a do-over, told her to get a drink of water, and informed her that this was not acceptable behavior since she was a big girl and I knew she could do it. I eventually coaxed her inside, and then was able to show her around a bit.

I introduced her to the teachers, Miss Rachel and Miss Shawna, who both seemed quite nice and willing to help. Grace began clinging to my leg so I suggested we sit down at the table and look at a book. We sat, and then we met another little K4 kiddo named Alexandria, who was quite shy.

Anyway, I stayed about 15 minutes total, but when I told Grace that I had to leave for work, it started...the scream heard 'round the world. Well, maybe I'm exagerating a bit, but I can testify that the entire school could hear her. "No, no, no, no, no, noooooooooooooooooooooooooo!!!!" She then got up, clung to my leg, and actual tears began to fall from the corners of MY eyes. The teachers came over to help, and I told them that Grace is very strong and in, they would need to hold her, but I never said the words.

I quickly turned around, and left while trying to remain composed. I met Shanna in the hallway again. She knew I was about to lose it, and as ever, Shanna, my very good friend, helped me to be distracted somewhat.

I wasn't crying because she was in kindergarten. It upsets me to the core that Grace has NEVER been able to soothe herself in any situation. From the time we brought her home from NICU, Grace's emotions have ruled her. She really has no control over them at all. I makes me sad to know that Grace was so upset. It was really a traumatic experience for me to see her pushed beyond her limits. I cried all the way to work, and it was of no comfort when most people I saw that day thought it was about her growing up and going to kindergarten. Nope, I know Grace is ready for a learning challenge. I'm afraid that my precious daughter is never going to grow past her emotional reactions. She will have a difficult existence if this doesn't change. I don't know how to help her any more than I already do. I let her talk it out, and give lots of hugs, but really, I'm not doing much more than that. I suppose that is all I can do for her.

Tomorrow, I'm taking her back to Learning Links in the morning. We've been talking about how crying is okay, but screaming like "we're being hurt" is not okay at school. I'm saying a prayer that tomorrow will be a better day.

Monday, September 04, 2006

Really My Life???

Ever have one of those days where you feel like you are looking "in" at your life. I picked up our local Alpha-1 support group's new 2007 calendar, and was admiring an absolutely gorgeous picture of Grace. I was looking at her with the eyes that only a mother has. To me, it seems she has a glow around her. It is like her life force is bigger than the boundaries of her body.

All of a sudden, it hit me.

Grace is in the calendar because she has Alpha-1. She has a life threatening genetic disorder, and no matter how much I love her and take care of her needs, I can't take Alpha-1 away. It hurts me to the bone sometimes. I'm sure you are wondering where the hell I've been.

I've been with Grace all along. I don't see Alpha-1 in her. She is my daughter first. Her ability to make my heart swell with love is immense. I think it is so immense that I can actually disconnect myself from her Alpha-1. Yes, my brain knows it is reality, but my heart, a mother's heart, doesn't accept it. It can be summed up in one word: denial.

In case you are wondering, I can do this with my Meghan, too. Her former micropreemie status distracts me enough to keep the nasty A word at bay.

So, I guess I got a face full of reality again. I suppose I'll go back to rebuilding that denial again. It is the only thing that gets me through most days.

Tomorrow is Grace's first day of kindergarten. I get to describe Grace's Alpha-1 to yet another adult who is about to influence Grace's life. I remember my kindergarten teacher like it was yesterday.