History

Tuesday, June 5, 2007 5:52 PM CDT

Hello Friends and Family,

It is time for the Wisconsin Liver Walk on Saturday June 16th at Frame Park in Waukesha, WI.

Charlie and I are captains of Team Alpha-1. We walk in honor of our very special daughters, Gracie and Meghan, who have Alpha-1 Antitrypsin Deficiency, a genetic disorder that damages the liver, but also one that causes irreversible lung damage over time. I walk in memory of my cousins, Amy, Beth, and Pam, who became Alpha Angels too early in life and also walk for all Alphas courageously battling their disease on a daily basis. Long live the Alphas!

We know a cure will eventually be found, and it is through efforts like this that you can easily contribute to the cause. This year, we decided to raise funds for 3 very worthy Alpha-1/liver organizations. If you would like to sponsor us in our fundraising efforts, please make a tax-deductible donation to one of the following organizations:

Alpha-1 Foundation: The Alpha-1 Foundation is dedicated to providing the leadership and resources that will result in increased research, improved health, worldwide detection, and a cure for Alpha-1 Antitrypsin Deficiency. Our Team Alpha-1 fundraising page for the Alpha-1 Foundation is:
http://www.firstgiving.com/teamalphaWI2007

American Liver Foundation - Wisconsin Chapter: The nation's leading nonprofit organization promoting liver health and disease prevention. ALF provides research, education, and advocacy for those affected by liver-related diseases. Our Team Alpha-1 fundraising page for ALF-WI is:
http://www.active.com/donate/wiliverwalk2007/teamalpha1

If you'd like to join us for the walk, please let us know. We'd love to have you on Team Alpha-1. The walk is a leisurely 1.5 mile stroll along the Fox River. It isn't a race. Join us afterward for a picnic in the park. You can register for the walk by going to: http://www.active.com/donate/wiliverwalk2007 The registration fee is $15.00 per person over the age of 13.

Thanks so much for supporting this very important cause. It means a great deal to us!

PS:

For up-to-date information, please go to my blog:

Unique But Not Alone

I will post updates on the girls' Alpha-1 here from time to time, too.

Thanks!
Mom Jen

Friday, May 18, 2007 6:12 PM CDT

The girls are doing great right now in terms of their Alpha-1. They both recently had their birthdays. Gracie is 5, and Meghan is 3.

For up-to-date information, please go to my blog:

Unique But Not Alone

I will post updates on the girls' Alpha-1 here from time to time, too.

Thanks!
Mom Jen

Friday, April 6, 2007 10:52 PM CDT

I haven't done an update in quite a while. Well, the Alpha Girls are doing quite well right now. Some of our liver friends aren't doing well though. We send special prayers for Sweet Antonio and his mom Sheri. They've been in patient due to PTLD, a form of cancer that happens in post transplant patients. HUGS Antonio!

Meghan had a GI visit on 3/16. Everything checked out well. She weighed 25 pounds, 10 ounces and is 2 feet, 10 inches tall. She is stil on the small side, but is finally on the bottom of the normal, non-preemie adjusted growth chart. WOOHOO! Both girls go back to see Dr. Blank in August and will need blood work...aka owie, owie, owie, and no, no, no, nooooooo! I'm not looking forward to it. Last time, Grace tried to bite the lab tech. Ut oh!

Gracie is nearing her birthday and will be 5. She has invited her school friends over for a girl-only birthday party. It should be fun to have 10 girls running around for 2 hours or so. We're having a hello kitty theme, but Grace opted for a Little Pony birthday cake. She is sooooo girly! It makes me laugh.

Tomorrow, Grace will be getting a hair cut at the "beauty shop." Grace's sensory issues have prevented me from coaxing her to get it cut in over 2 years. Her hair is very long, and I hope she'll cooperate tomorrow. We're bringing big sister, Kesa, along so I think that might do the trick. While I was discussing the hair cut with her yesterday, Grace asked me this: "Mommy, why can't I decide when I get a hair cut?" She said it in a serious tone and without the sassy factor. She was dead pan serious, and I suddenly realized that we've entered a new phase with Grace. She understands some abstract concepts such as decisions now. WOW! She is growing up so quickly, and is fast turning into a girl...not a little girl. Sniff Sniff...my baby............. :(

Meghan has been working hard in physical therapy lately. She is quickly approaching the age of 3 when her early intervention program will stop. We've decided to keep her in PT since she still is working on strengthening her left side and core. She surprized me on Wednesday when we were walking down the stairs in her day care. Every day, I stand close by as Meghan carefully and slowly takes one step at a time going down the stairs. It can take up to a minute to go down 10 stairs. Well on Wednesday, she suddenly just walked left-right, left-right, left-right down the stairs in like 10 seconds. I was amazed! WOOHOO!

Another milestone for Meghan is that she continues to be potty trained, and has learned how to spell her name, M-E-G. Preschool is paying off for Meghan. I recently learned that neonatologists/developmental specialists now recommend that all former micropreemies get into some sort of prechool before the age of 3. Check! We did that, and yes, it is paying off. :) I hope the interventions she is receiving both physically and mentally will have positive results.

Finally, on Grace's birthday, we are honored that a member of the American Liver Foundation's Run for Research Team in the Boston Marathon will be running in honor of Grace & Meghan. The girls were matched with our runner, Jen. This is her 4th year running. WOW! I can't even run 4 blocks.

Please consider donating to Jen's fundraising effort:

http://www.active.com/donate/liverteam07/JDavis297

We're proud that Jen runs to help cure liver disease and Alpha-1 is one of those diseases.

Jen: Gracie and Meghan are very proud of you.

Sunday, February 4, 2007 9:24 AM CST

Discharged from NICU Follow-Up Clinic

On January 16th, Meghan had her 30 month adjusted check up at our NICU's follow-up clinic. I was so happy because Meghan's chief neonatologist, Dr. Ragatz, was on the follow-up clinic rotation today. It was nice to see him again, and he said it is so rewarding to see his former micros succeed.

We received the best news today. They feel that Meghan has come so far that they no longer are talking to us about cerebral palsy (CP) anymore. Her asymmetry (left-sided weakness) is virtually gone with just a tad in her left arm, which they feel should continue to fade to none with some more time and physical therapy.

WOOHOO!!!! This is such a relief. I can't tell you how many times I mulled over and cried about her possible CP over the last year. This is seriously the best news for Meghan. I'm so happy that I feel like I'm floating on air. Can ya tell I'm happy? :)

Today, Megs received an OT consultation using the Bailey scale. Her assessment came out to be a 34 month old. Another WOOHOO moment.

Finally, they gave us her height and weight. DRUM ROLL please!!!!!!!!!

25 pounds 1 ounce
33 inches

She is in the 29 1/2 percentile for height, and in the 25th percentile for weight. WOOHOO

I can barely believe this. Way to grow Meghan! Gotta love cyproheptadine.

They discharged Meghan from follow-up clinic, and asked us to submit our story to our hospital's Little Angels foundation for both Meghan and Grace. We've been visiting the Follow-Up clinic since Grace was born so they've gotten to know us pretty well.

Thanks for "listening" to my glowing report. I promise I'll be more humble next time.

Proud Mama Jen

Monday, November 13, 2006 9:02 PM CST

The Alpha Girls are still doing well, and we're thankful for that.

My really great friend, Amy, had a baby boy on 10/27. Unfortunately, his little body wasn't strong enough to hold his spirit so he went to heaven. His name is Jack, and Amy and Chris are so proud of their first born son. Our liver community has also had some tough days recently. Little baby Dillon in Illinois was called home to Heaven on 11/3, and baby Jackson Riley flew to be with the angels on 11/11. We're all very sad about it. Please say some prayers for their families.

Grace had a first when she took her first trip to the Apple Holler pumpkin farm with her K4 class. It was also her first trip on a school bus. When I asked her how it was to ride on a bus, she replied, "It was wobbly, and there was a crazy bus driver." Cute. She's been having some difficulties with little girls in her class that don't want to play with her. It makes me a bit sad that this is happening at the very young age of 4. (I posted about that on my blog.) For Halloween, Gracie was a Hello Kitty princess. She just adores her costume, and has worn it several times to "dress up."

Gracie is also proving herself to be quite an emotional roller coaster of a little girl. She can go from laughing to crying in .2 seconds to set new land-speed records. We've been reinforcing proper behavior with time outs, but she has had less of them. I'm happy about that. Her favorite thing to play is baby dolls or Shell Lake so Meghan is having a ball playing pretend with her. It is very cute to watch. :)

Meghan is growing up so fast, and I can barely keep track of her. She moves quickly now and has had another language explosion. I'm amazed by her ability to string together her thoughts in sequence and then reply to my questions afterward. She is barely 2 1/2! On 10/27, Charlie took down the crib and put together Meghan's first "big girl bed." Megs was a bit confused about it, but proud at the same time. She woke up 2 different times the first night, but overall has adjusted quite nicely. She does need a boost to get up on the bed though since she is so little yet. :)

Megs is also learning how to use the potty now, but isn't at all consistent yet. We're just encouraged that she is interested. Megs also went trick or treating for the first time on 10/27. She chose to wear her lady bug costume, and had great fun with Grace, Tante, Grandma Kathy, and Connor. Finally, Meghan has discovered the world of imaginative play. The other day, she was walking down our stairs and was placing her wrist up toward her mouth like she was pretend licking her wrist over and over again. This confused me so I asked her what she was doing. This is her answer: "I'm a cat!" LOL (In case my description isn't fitting enough. It looked like Meghan was cleaning her arm like a cat would. Get it?)

All-in-all, the girls are doing great. Thanks for checking in on us.

Mom Jen

Saturday, September 16, 2006 10:27 PM CDT

First of all, please pray for our Alpha friend, Laura. Her recently transplanted new liver is now failing. She has been relisted for transplant as status 1 for her age group in the US. http://www.caringbridge.org/mn/laurasliver

Second, happy 6th birthday to my goddaughter, Chloe.

Both my girls visited their GI today. 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.

Mom Jen

PS: I've decided to journal my thoughts on Alpha-1 and other issues. I tend to post more often there, but I will also continue to post updates on Grace & Meghan's milestones and funny stories. http://www.alphagirls.blogspot.com

Saturday, July 15, 2006 11:10 PM CDT

The Alpha Girls are healthy again. They both had rounds of bronchitis in early June that required antibiotics. Meghan also ended up with a double ear infection again. Sheesh! Livers are good right now. Yay! I could get used to this normalcy.

GRACIE
Gracie is becoming quite the little girl now. She talks and talks and talks some more. I also have to remember that she hears EVERYTHING I say now and actually comprehends it. (Note to self: shut mouth!) I finally broke down and took Grace's bed railing off. She does mostly well, but did fall out of bed the other night by using up too much bed real estate. Whoops!

Grace is also preparing to go to Kindergarten on 9/5. Yesterday, we were shopping together and figuring out what kind of backpack "we" want for school. There are 4-year old requirements, you know. These include: Dora the Explorer, in pink or purple motif, wheels and a handle for pulling, plus a lunch box and water bottle.

Gracie is also trying to learn our phone number and address before she goes to school. I've put our phone number on the fridge with those magnet numbers, but the only problem is that Meghan keeps obsconding with them...fun with 2 year olds. ;)

Anyway, Grace is still giving us a run for our money with her tantrums. They are fewer and far between, but sheesh, when they occur, the whole world knows. Loud doesn't begin to describe it. She gets so mad that her face turns beet red and she sweats like crazy. Gosh, I bet she'll be proud I documented all of this for her when she is older. NOT! We're doing 4 minute time outs in the bathroom now. Before, we'd put her in a time out, and then she'd protest that she had to go potty. Problem solved...time outs still last 4 minutes and peeing can happen at the same time. Yay!

Grace is also learning how to write her first name now. She has mastered the letter G, and is now working on the other letters. She also has learned how to draw a rudamentary face with eyes and a mouth. It is rather cute to see her progress with her drawing. I taught her how to draw flowers, rainbows, the sun, clouds, and balloons. I'm glad to see that she doesn't just scribble anymore. I know that each kid learns in his/her own time, but Gracie was the only one in her preschool class that couldn't draw. All she ever did was scribble. Grace is advanced in lots of areas, but the one she is most advanced in is her musical ability. She can sing on key without prompting and knows all the words to her favorite songs. We joke that she got the B family music gene.

Finally, Grace's favorite phrase of the moment is "because I don't want to!" If I had a dollar for every time I heard that, I'd be rich! Fun with 4 year olds...

MEGHAN
I'll include an update on Megs soon. She is 21 pounds, 6 ounces...still tiny and still in physical therapy. I'm too tired to stay awake now. Charlie has mono, and I fear that I'm coming down with it too. To quote Gracie when she was 2, "I no feel dood."

Mom Jen

PS: I'm blogging too now: http://www.alphagirls.blogspot.com

Monday, July 3, 2006 11:48 AM CDT

On Friday 6/30, Grace had her first official dental check up. Charlie and Kesa also went along as they had appointments too.

Well, Charlie got put into a different room from the girls so Grace and Kesa ended up together. Kesa had her teeth cleaned first, and the Grace followed. From what Kesa said, Grace did great. She picked grape as her flavor for the cleaning. Kesa said that she didn't like the floss since it tasted like mint. Overall, she wasn't too squirmy.

Anyway, the funniest part was when I saw her later that day. I asked her how the dentist went.

Mommy: Did you go to the dentist today?
Grace: Uh huh, I went to the dentist. I got a new whale tooth brush that's purple and green.
Mommy: Really, a new toothbrush, that is great. Who cleaned your teeth?
Grace: A grandma, but not my grandma.
Mommy: Huh? A grandma?
Grace: Yep a grandma.

I'm was still confused until I remembered that the hygenist's name is Sherri. My mom's (and Grace's grandma's name) is Sherry.

Too funny ... LOL! :)

Jen

Monday, May 8, 2006 12:33 AM CDT

My first mental picture of Meghan was shortly after delivery by c-section and the neonatologist carried her over so I could "see" her for 10 seconds. Her head poked out of his hand, but her entire body fit inside his hand. She was wrinkled, had blond hair all over her, was already intubated, her eyes were sealed shut, and sort of peachy in color. I asked to see her body, so the neo opened his hand a bit. I touched her tiny hand, and then the neo whisked her away to hook up to the ventilator. I remember crying out, "My baby! My baby! My baby!" as tears streamed down my cheeks.

Now flash forward...yesterday, my beautiful miracle said her own name. She said "Meggie get in! Meggie get in!" as she was trying to climb in our bike trailer.

WOW! I'm floating on air.

Mom Jen

Wednesday, May 3, 2006 12:35 AM CDT

Happy 2nd Birthday Meghan Rose! We love you very much!

Love,
Mom, Dad, Kesa, and Grace

Saturday, April 29, 2006 11:18 PM CDT

Grace & Meghan have a new cousin!

Aunt Kristen and Uncle Bob welcomed Robert Hugh III today at 2:31pm CST. They will call him Trey since he is the 3rd Robert in the family.

He is a big, beautiful healthy boy! He weighed 8 pounds, 3 ounces and was 19 1/2 inches long. His apgar scores were 9 and 9. Good boy!

Proud Aunt Jen witnessed his birth along with Grandma Sherry. Super hero (aka Mom Kristen) pushed Trey out in about 5 minutes. WOW!

Welcome to the world Trey! Happy Birthday!

We already know that you will be loved and quite spoiled as the first grandson in the family. LOL

Proud Auntie Jen

PS: Grace & Meghan continue to do well overall. I'll post a better update soon.

Tuesday, January 24, 2006 6:22 PM CST

Today is the anniversary of the day I lost my Grandpa Childress. I miss him greatly. The amount of love he showed me lives forever though. I love you Gramps!

The Alpha Girls are doing great. Livers are calm. Viruses are staying away right now.

Before I give our report, I wanted to welcome little Gavin (SZ) from Wyoming to the Alpha-1 community. I�m sorry his diagnosis is what brings him here though. We hope his Alpha-1 journey is not too bumpy.

1/26 Updates: Gavin's 2 year old sister, Taylin, was discovered to be a ZZ Alpha too. She is doing well though. Plus, one of Gavin's parents has been determined to be a SZ Alpha, too. We pray for them during this difficult initial diagnosis time frame.

MEGHAN
Today, we just returned from Meghan�s 18 months (adjusted age) check up in prematurity follow-up clinic. Overall, the visit went well. She weighed in at 19 pounds, 2 ounces, but was fully clothed and had a wet diaper. I think she is really about 18 � pounds. Her length was measured at 29 inches. Her head circumference was in the 95th percentile�big. ;) Meghan was assessed by a physical therapist, occupational therapist, perinatal nurse, and a neonatologist.

Meghan�s gross motor skills are still behind but are getting better. She was assessed at the ability of the 15 month old. The PT noticed that she is definitely a hypotonic (low tone) child overall. She also noticed that Meghan exhibits a definite preference to using her right arm and right leg.

Meg�s occupational therapy assessment was right on for her adjusted age of 18 months. Yay! The OT said that she is concerned that the preference to using her right hand may inhibit some of her skills as she gets older, unless the right hand dominance goes away. She said that she�ll be looking to see (as she gets older) that Meghan can put her jacket on, use zippers, button things since those are typically things that require 2 hands working together. If at 30 months, Meghan can�t do this then OT will make a recommendation to have additional therapy because Meg is not currently receiving OT.

The neonatologist and perinatal nurse sort of hemmed and hawed around the left side muscle weakness issue. I finally just said, �You are referring to possible CP (cerebral palsy).� She said yes, but that they would wait until her 30 month check up to really pursue the diagnosis, and reminded me that the later the diagnosis, the milder it typically is. She also said that Meghan is cognitively all there and this likely would be a muscular issue for Meghan only. Either way, I don�t really care if we get a diagnosis or not. I just want to do what is best for Megs so that she can succeed no matter what, kwim (know what I mean)?

So all in all, it was a good visit. I must be getting used to all of this medical stuff now. The CP word didn�t faze me. Last year, it would have freaked me out. Let�s see�I�ve now learned about PE, HELLP, NICU, IUGR, PT, OT, SLT, LFTs, Alpha-1, and now yet another acronym, CP.

Meghan also had a visit to the GI clinic on Friday, January 13th. Most of her lab values were normal so that was quite a relief. The GI doc had speculated that Meghan�s body was anorexic (depleted of important vitamins/minerals for growth). Everything turned out okay there. Yay! She is still small though. Her weight was 18 pounds, 2 ounces, and at that visit she was measured at 30 � inches long. They told us she is on the 3rd percentile for height, and is still below the zero percentile for weight. I�ll post the lab values another time. I don�t have them hand right now. So, Meghan�s weight issues are not Alpha-1 related and are more likely the result of her former micropreemie status�I wonder how CP factors in here? Inquiring minds want to know� LOL (laugh out loud)

Megs is also popping more teeth. Another bottom right tooth came in on 12/23. More are set to erupt soon. Also, Meghan is primarily walking now. When she does a lot of walking, her left leg lags/drags behind her a bit. Overall, she is pretty darn cute while walking, though.

GRACE
Today, we also had our first parent-teacher conference for Grace�s preschool. It was so cute. We went in while the kids were napping and we had to whisper so we wouldn�t wake the kids. All in all, according to their assessment, Grace is ready for K5. She knows all of the required information to enroll in kindergarten. Her teacher did note that Grace can be really shy in class and that they are working on getting her to speak louder. We noticed the quiet voice at home, but the shyness is not a factor at home at all! LOL

We�ve also been shopping around for kindergarten schools for Grace. We just went through the 3 choice enrollment process for the Milwaukee Public Schools. Our first choice is Milwaukee German Immersion School, followed by 81st Street School, and then French Immersion. We�ll find out in March in which school Grace was accepted. We toured the schools and Grace seemed nervous and stuck close to us. I think she thought that she�d be left there in an unfamiliar setting.

Grace is still challenging authority and having some temper tantrum episodes�all normal 3 year old stuff. She is growing taller and taller so I�m wondering how tall she is now. I�ll have to measure her. Her weight is about 38 pounds.

All is quiet on the Alpha-1 front for Grace, too.

JEN
I�m getting ready to go to Miami for a BOD meeting for the Alpha-1 Association. I�m also kicking off the local liver walk preparations here in WI. In addition, the president of the Alpha-1 Association asked that I be on the conference planning committee for the national convention in June. Finally, I�m gearing up to meet up with some of my Internet pals who also suffered from preeclampsia. We�re meeting in Madison on Feb. 11th. ;)

Thanks for all of your support and kindness. Please say prayers for all of the Alphas as well as those individual fighting liver disease of any kind.

Mom Jen

Wednesday, December 21, 2005 4:34 PM CST

Wow! I just did journal entry not too long ago. Well, here is the big news:

WE HAVE LIFT OFF at 1 year, 7 months, 2 weeks, and 4 days old!!!!!!!!!!!!!!!!!!!!!!!1

Meghan took her first steps today for Daddy Charlie. When he entered her room at day care, she was using a walking toy. Well, she saw Charlie said "Dada!", and walked 5 steps right to him.

Charlie described Meghan as being so proud and smiling from ear to ear at her accomplishment. Yay! Yippee! Hurrah!

Mommy, Daddy, Kesa, and Gracie are so proud of you, Megs!

Keep up the good work!

Proud Mom Jen

Sunday, December 11, 2005 7:19 PM CST

First of all, please say prayers for our liver friends: Havalah and Annika. They will both be inpatient during the holidays due to critical liver complications.

Yikes! I'm at work on a Sunday and well, I need a break from this mind numbing project. I'm missing my girls so much right now. They stayed over night at Grandma and Grandpa's house last night because we were going to Char's work party. So, I haven't seen them all day, and now, they are on their way to bed without having seen Mommy today.

Well, we've had some new milestones achieved in our house lately.

MEGHAN

Megs acheived the ability to stand on her own without holding onto something on 11/25. She is so proud that she can stand. It is so cute! She is still "this close" to taking her first steps.

The next milestone was that Meghan finally learned how to drink out of a sippy cup on 11/30. Finally! Yay Boo Boo! She seems so happy to have her cuppy like a big girl.

Another cute thing she learned how to do is blow kisses (12/08) when someone leaves. She even has the accompanying "mmmmaaa" sound down pat.

Anyway, Meghan had another RSV shot on 12/2. She was weighed and had only gained 6 ounces in a month. Her pedi just shook his head. Sigh... We've been doing our best to get extra calories into her. She has learned to drink the pediasure pretty well, and that is 30 calories per ounce (10 more calorie per ounce than her formula was). It seems that no matter what we do, she just gains 4-6 ounces a month. At that rate, she'll be facing backward in her car seat for a very long time. Oh well, she doesn't know any better. We've got another appointment in the GI clinic on January 13th so we'll see what the specialist and dietician say.

Meggie also is learning new words. She now says "what dis?" and "what dat?" She also learned how to say me and mine. Watch out Gracie! We went to another edition of a research study Meghan is enrolled in from being born premature. At that appointment, it was determined that Megs has a 35-40 word vocabulary already. Wow!

GRACE

Gracie is having such a blast talking about Santa coming. I must admit that I use Santa coming to my advantage when she is acting up. LOL! She keeps telling me that she is a good girl.

At preschool, Grace is working on opposites again...big/little. I was surprised that she is learning to identify lower case letters now. She does pretty well with, but gets some letters mixed up like b and d. She is learning how to hold a pen/pencil the right way, and is finally starting to draw things that actually look like what she says it is...cute. She wants so badly to know how to read so we've been checking out word books from the library. She has discovered Richard Scarry's books are on her book shelf. They were mine when I was a kid. (I get nasty flashbacks to those books since I had to read them over the summer after second grade. I had a reading learning disablity. I'm glad that Gracie doesn't seem to have that problem. I wouldn't wish that on any child.)

Gracie is also doing her best to be a 3 year old...also known as "you're not in charge of me, mommy!" Ugh! I love how independent she is but sometimes, I just feel like I'm fighting a losing battle. I know that this too shall pass, but in the thick of it, I'm having trouble dealing with the 'tude.

Other than the 'tude, Gracie is doing quite well. She learned how to dress and undress herself. She even gets her shoes on the correct feet here and there. It is so nice to just say, "Go, get dressed Gracie." Wow! Of course, it probably takes her 15 minutes to do that. I allow a lot of lead time so we can actually get her to school at a decent hour.

Oh and I almost forgot, Gracie went sledding today with Grandpa John. She loves plowing around in the snow with her (and I quote) "gorgeous snow pants" and light up Dora snow boots.

MOM JEN

I went to Saint Louis for Alpha-1 Association board meeting. It was very nice to meet everyone in person. I also was appointed to be on the board of the new Alpha-1 Kids board of directors. I'm super excited about that organization. They just got a $45,000 donation. Wow! I'm helping with web content and the brochure. Check out their initial web site: http://www.alpha1kids.org

In February, I have to go to another board meeting for the Alpha-1 Association in Miami. Charlie is coming with me. It should be nice for the 2 of us to get away together. I can't remember the last time that happened...maybe our honey moon?

That is the report. Thanks so much for your thoughts and prayers. The Alpha Girls are doing pretty well.

Mom Jen

Monday, November 14, 2005 11:29 AM CST

Let�s see. Who am I today? A concerned parent? A proud parent? A worried parent? A tired parent? I guess I am all of these things today, and am feeling overwhelmed by it all.

Meghan visited her pediatric GI specialist on Friday, 11/11. We were returning to get a check up on her weight issues since her last visit on 9/9. In September, she was 15 pounds, 4 ounces. Now, she is only 16 pounds, 15 ounces�a pretty pathetic weight gain. Needless to say, Meghan�s GI specialist is even more concerned since she has fallen off the growth chart for an extremely low birth weight child.

So, where are we going from here? Well, we are now working with a dietician to learn how to increase Meg�s caloric intake with butter, oils, etc. We�ve been given special instructions on how to make super high calorie puddings. We�re converting Meghan off of baby formula and moving her onto Pediasure which has 30 calories per ounce. We�re also supposed to keep including dark karo syrup in her drinks to ensure that her GI track keeps moving�a. k a. having BMs.

The good news about Meghan is that she began crawling on September 8th�unlike her former army man crawling. She started pulling up and cruising on the furniture in mid-October, and she cut some more teeth. Her upper right tooth came in on 10/8, and her upper left tooth came in on 10/22. Now, she has a total of 4 teeth, which doesn�t exactly help with chewing food. She is way behind on teeth�oh well, that isn�t alarming me anyway. She is still learning how to drink from a cup, but is definitely having trouble regulating how much liquid she takes into her mouth�lots of coughing and sputtering, but it is getting slowly better. She also is learning how to drink from a straw.

Her vocabulary is expanding each day too. She added boy, gir (girl), eyes, coogie (cookie), wow, bed, yum (food), hi, baby, etc. Meghan�s speech therapist said that she tests out at 18 months on her vocabulary, which is great since that is her chronological age. Plus, she is pleased to see that Meg is using some sign language.

I was happy to hear that Meghan�s insurance company approved her for second season of the Synagis vaccinations for RSV. She had her first immunization on 9/23, and weighed 15 pounds, 14 ounces at that check up. Gracie and Meghan also got their flu shots on 11/2. Gracie fought the nurses every step of the way, and has a huge bruise on her bumper to prove it. That is my Gracie! ;)

Gracie is still doing phenomenally well otherwise. She is loving preschool, and just had her first class trip to sing in front of everyone in church. It was very cute but she was rather uncooperative, but so was the rest of the class. ;) LOL Overall, Gracie is asserting her independence and is letting us know that she is a big girl.

Meghan and Grace had a great Halloween. Meghan was a Badger cheerleader/bumble bee, and Gracie was Tinkerbelle. Gracie was so excited to get candy from all of her neighbors, but still liked to sit on our porch and hand it out to the other children. We also had a lot of fun playing in a very large leaf pile that we raked up. Gracie thought this was probably the most fun she had ever had. It was so great to see her reaction to it all. Meghan wasn�t as pleased with the leaves, but she did have a great time trying to eat the leaves. Hey Meghan, what is the deal with wanting to eat leaves but not your delicious food???? Inquiring minds want to know�.

As for me, I just turned 33 at the end of October, and I am going to my first in-person board meeting for the Alpha-1 Association. We�re gathering in Saint Louis to attend a regional Alpha-1 education day and get to know each other better as board members. I�m looking forward to my trip, but I�ll miss Char and the girls a lot. I�ve also kicked off the 2006 Liver Walk which will take place on June 17th at Frame Park in Waukesha, and I�ve agreed to be on the local chapter�s ALF board of directors. Call me busy�but please call me involved�I want a cure for Grace and Meghan�s Alpha-1 in my lifetime.

Mom Jen

Friday, October 7, 2005 0:09 AM CDT

This journal entry is dedicated to the memory of Haley Vincent, an 11-year old girl who lost her battle with autoimmune hepatitis and lupus. We'll miss you forever Haley! Many prayers and thoughts go out to her parents and siblings.

http://www2.caringbridge.org/ga/haley/

Your "Dirty Rotten Liver Blues" and "Billy Rubin" tunes will keep you close to us forever. No more tests! No more procedures! No more feeling bad! No more blues! Sail freely with the angels Haley honey.

Mom Jen

PS: Grace & Meghan are doing well. Grace's checkup with her liver specialist went great. Meghan is crawling everywhere, going up and down stairs, and is cruising the furniture. Watch out world! Here comes our preemie miracle Meghan. ;)

Here is the obit for Haley:
Haley Christine Vincent, 11, Kingsport

KINGSPORT - Haley Christine Vincent, 11, at Holston Valley Medical Center on Saturday (Oct. 1, 2005) at approximately 11 p.m., Heaven's gates opened wide, and the newest sweetest singing angel stepped through.

Throughout a brutal combination of illnesses, Haley never lost her faith, nor her love for her Lord, Jesus Christ. She fought a brave 5-year battle, and endured on this Earth, far more than any child should. Instead of becoming bitter, Haley became compassionate towards other children fighting illness.

She composed, sang, and performed her original music, chronicling her illness. She made other children fighting these diseases feel better, and she raised money for the ALF and the CHOA. Besides being a talented singer, Haley was an accomplished writer and artist. Words cannot express how she will be missed by her parents, Dr. Bruce Vincent and Cheryl Weston Vincent; her two brothers, Nick and Logan Vincent; and her sister, Kendall Vincent, all of the home. There will be a "Haley Sized" hole in our hearts that lives forever.

Monday, August 15, 2005 5:43 PM CDT

Happy Birthday to Tante Shanna!

The girls are doing pretty well right now. They have actually begun fighing over toys now. It is so strange to see one get jealous of the other. I knew it would happen but I just didn't know when. Now the fun begins!

GRACIE
Gracie is doing great. She is having a blast this summer playing with her toys, watching Dora (Oh mannn!!!), going to the library and zoo, and day care. She seems to be getting taller on a daily basis, too. She is a sweetie, but also likes to show her "claws" sometimes. We've had a few heated exchanges with her recently, but overall she having less temper tantrums now. Yay!

She is very demonstrative now, too. She loves to give big hugs and kisses on the lips to her mom and dad and sisters. We needed to give a little instruction on not using the tongue! LOL Anyway, she sometimes crys when her mommy or daddy leave to go somewhere, but only if nothing better is going on...like a Dora video. Gracie also says some funny things here and there. The other day she walked in the kitchen and announced, while holding her head like she had a headache, that "Meghan is makin' me crazy Mom!" Such a drama queen!

Grace is set to have her annual visit to the pediatric GI on September 9th. Mom Jen is not looking forward to the requisite blood work. Can I bribe my way through this set of tests again???? Stay tuned!

MEGS
Meghan is making some very slow progress with her PT. She was able to stand next to the couch, holding on, unsupported for the first time on July 15th. Next, I witnessed her finally get up on her hands and knees (for 1/2 a second) on July 20th. Overall, Megs has learned how to get around very well by army man crawling everywhere with just her arms doing all of the work. Her PT Joann says that Meghan is very adaptive which shows her smarts but doesn't help her to learn to use her legs in the way they should be used. So, Megs is progressing but ever so slowly, which goes hand in hand with her weight gains. At a recent visit for an ear infection, she weighed 15 pounds, 7 ounces.

Meghan has really started to take off with her eating though. This has us doing the happy dance! She is really starting to eat a variety of finger foods without choking or gagging. Yay! She added her bottom left tooth on 7/17 so I'm sure that helps with the finger foods, too.

Megs is also progressing nicely with her speech/understanding of language. She recently (7/20) was playing with a yellow duck. I said, "Quack. Quack." She responded by saying, "Kak! Kak!" So cute. Overall, Meghan has learned how to say no, all da (done), woof woof, meow, hi, bye, mama, dada, key key (kitty), and more that I can't recall off the top of my head. Yes, she does say Mama finally. I know I had complained about that in my last report. It showed up on July 11th. ;)

I've been working with her teach her the parts of her face like nose, eyes, mouth, and ears. If you ask her where her nose is, she points to her mouth. Very funny! She does know where her eyes are though. She blinks to show you.

Finally, Meghan has been suffering from some very severe constipation for about the last 6 weeks. We are trying just about everything to "get her going" again, but to no avail. She is so backed up that she is miserable...poor thing. I think I'm going to ask our ped for some help.

So, the Alpha girls continue with their health streak!

Please say prayers for some of our liver friends who had recent liver transplants: Hailey, Havalah, and Janna. I hope their donor families can find some peace with their very generous decisions to donate life!

Mom Jen

Tuesday, July 5, 2005 2:11 PM CDT

Wow! It has been quite a while since my last update.

Grace and Meghan are still doing well with Alpha-1. Yay! Gracie has learned to hug Meghan, and Megs just eats it up. She absolutely loves her big sister, Gracie, and her even bigger sister, Kesa (who is now taller than stepmom Jen BTW).

GRACE
Gracie is enjoying being 3 going on 30. Her favorite thing to say is "I'm a big girl now." She also likes to claim her possessions by saying "That is mines." But, the most familiar thing we hear from Grace is "Why?" She wants to know why there are clouds in the sky, why the ball is red, why Daddy didn't go in a box (incubator) when he was born, why, why, why, why... LOL

She is also really getting into wearing dresses, putting on clip-on earings, in addition to wearing necklaces, bracelets, and watches. She just loves to be girly, which is fun for mom Jen. At Grace's 3 year old checkup on 6/24, she weighed in at 33 1/2 pounds and was 37 inches tall. I think that means she has gained almost 30 pounds since she was born. Wow! Grow Gracie grow! She loves Little Ponys and Care Bears. In fact, she just got her first "big girl" tricycle, which is Care Bear themed. It plays the most annoying music ever..."Care Bears are coming to your town. They'll lift you up when you're feeling down..." It gets stuck in your head! Anyway, Gracie is now learning how to push the pedals and wears her bike helmet proudly. She calls it her big girl bike.

Gracie had a bad time at day care last month. We had an incident report because Grace bit her best friend Zoe on the cheek. Thankfully, she didn't break the skin, but it definitely left a mark. Poor Zoe! Now, Grace comes home from day care every day and announces, "I didn't bite today." We always respond with, "You'll never do that again, right?"

Gracie is now staying dry at nap time for the most part. She has also had 2 nights where she stayed completely dry. We made a huge deal out of that. Eventually, she'll get it. Gracie has also learned to drink from a cup without a lid! Yay! We have to remind her to use 2 hands, but she is quite proud. Grace has finally learned how to say "May I be excused please?" when she wants to leave the table. Yay!

Oh and, another first for Grace is that she went sailing for the first time with Dad Charlie. She and he went on a 45 minute sail on Shell Lake on June 22nd. She loved it. Unfortunately for Charlie, she grabed some line (I'm not a sailor.) and it made the boom come across and hit him square in the head. It left a mark. ;(

Finally, Grace has learned how to take her clothes off and put them on. Some go on backwards or sideways, but she is quite proud of that too. She also puts her own shoes on. She is now working on putting on her socks.

MEGHAN
Meghan is really coming along now. On 6/24 for her checkup, she weighed in at 15 pounds, 3 ounces and was 28 1/2 inches long. She is making great strides with her physical therapy and speech therapy for eating. She now gets up on 2 hands and one knee and rocks and rocks and rocks. Her other leg gets stuck underneath her. Here and there, she'll pull herself around with just her arms like an Army man on the ground. This weekend, she started to actually do some weight bearing on her legs, which is nice to see. She likes to stand (with help, of course) and jump up and down. She giggles and giggles and giggles. So cute!

As for the eating, Meghan is doing great. She learned how to eat finger foods, and just loves to feed herself. We've got her up to 2 meals a day, but those are mostly baby food still. In a few weeks, she may be ready for some table foods. We just need to watch her because she has a super sensitive gag reflex. Megs has also been working on drinking water from a sippy cup. She seems to like it, but is also surprised when the water goes in her mouth. Cute!

On June 18th, Meghan said "hi" for the first time. She still says it off and on, but not on a consistent basis. I think that we can call that her first non-babbling word. I'm still itching to hear the words mama come out of her mouth, though. She said mama for 3 days in a row and then never said it again. Dada is ever present!

On Father's Day, 6/19, Charlie swears that Meghan's first tooth started to emerge, but I kept putting my finger in her mouth and I didn't feel anything sharp. He claims otherwise, but I did finally feel her first tooth on June 21st. It is her bottom right tooth. She was quite fussy before it finally broke through. Poor kid! Grace didn't seem to have as much pain when her 1st tooth came through.

On 7/1, Meghan woke up with a very chunky cough. It alarmed me a bit from a respiratory distress and Alpha-1 perspective, so Charlie took Meghan to the doctor. It turned out that she had a double-ear infection that we didn't know about. Poor Meggie! She is now on Augmentin to try to clear it up.

On 6/26, we attended the Saint Joe's 101st first birthday party for all the kids who were born in 2004. I was so excited to run into Kristen Brost. Her son Tanner was in NICU with Meghan. Tanner was Meg's roomie. Anyway, he is getting big. He is 19 pounds and is close to walking. She said he is working on learning to say some words. Anyway, we're so glad to have seen them.

Well, that is the report on the girls.

One last thing, on June 25th, Team Alpha walked in the Liver Walk. I'm proud to say that we raised about $3900 dollars! Yay! Yippee! I also attended the national Alpha-1 Conference in Dallas the 2nd weeked in June. It was a lot of fun to meet more parents of Alphas there.

Mom Jen

PS: Happy Birthday Charlie on 7/7!

Wednesday, June 1, 2005 4:26 PM CDT

Well the Alpha girls are doing pretty well right now. Both are currently not sick. Yay! I love it when it gets warm. The viruses are less plentiful.

Gracie is having a ball going to school (aka day care). She seems to be suffering from some bullying from a girl named Jackie, though. I think she was being excluded from the "cool club" for awhile, but things seem better now. In fact, she just referred to Jackie as her best friend the other day. She also tells me that it was good day at school if Jackie didn't push her. (This makes me sad that it is happening at just barely 3, but you can't protect kids from this kind of stuff. It is almost a rite of passage.)

Otherwise, Gracie is now 32 pounds, and has officially entered the size 4T. She now trying out staying dry at nap times, but still needs a diaper for night time. She is already talking about when she goes to the German Immersion School next year for kindergarten. "I'm a gonna go German school. They have a bell that rings there." She also has entered the world of imaginative play. She loves to play kitchen and dolls. She also has learned how to play with other kids/people so now she asks that we play with her.

Finally, Grace went with Char to Shell Lake for her first real experience at the B family cabin over Memorial Day weekend. She pretty much loved it like crazy. On the way home, she and Charlie ate at Applebees. Well, Grace got a red balloon, but on the ride home, the balloon escaped from the car. She was devastated. Charlie told her that the balloon went up to Bubbys (our cat, Eeyore, in heaven). Poor Gracie got huge tears in her eyes about it.

Meghan is doing great too. I forgot to note in my last report that Meghan finally slept through the night on 5/14. We are still in hit or miss mode, but occassionally, she sleeps through, which I must say is pure bliss.

She has also finally started to gain weight. She is now 14 pounds, 10 ounces as of 5/26 (her last RSV shot). Yay! Meghan has also been working hard in physical therapy and speech therapy. In PT, they did another check in on her progress. She tests out perfectly for her adjusted age on being able to sit up. She is still 2 months behind on her locomotion abilities, but she has still greatly improved. Now, we are working on her being on her hands and knees to prepare for crawling. You can really tell that she wants to move so badly. When you put her on her tummy, she actually scoots backwards, but unfortunately for her, that is away from the toys she wants to get. ;(

On May 20th, Meghan had another visit with Dr. Blank. We got another good report. Her liver/spleen continue to be of a normal size. Yay! In fact, we didn't even have to get blood work done. Dr. Blank was happy to see that Meghan had gained weight since she saw her last time. Megs is actually at the 25th percentile on her growth chart now. She has never been above 15% before! Yay! We need to take her back to Dr. Blank in 6 months.

Over Memorial Day weekend, I decided to really force the feeding issue with Meghan. I'm happy to report that if you let her get to absolutely starving that she'll actually allow food in her mouth. What a concept! ;) She is up to 2 meals a day, and my plan is to increase the amount she eats at each feeding. She loves rice cereal and will eat about 1 ounce worth of that. The other foods she likes less, but will eat about 1/2 a jar of the first foods.

Finally, Meghan is now suffering from some stranger anxiety. I took her to Tante Shanna's house and she didn't want to have much to do with Tante, which was very unlike Meghan. She actually burst into tears when I left the room to get a bottle. Anyway, I think that means she has achieved object permanence and she likes her mommy very much. Right back at you kiddo! Meghan also has learned how to play the so big game and is learning to wave hi and goodbye now. Her brain development is really coming along now. I'm glad to see it considering where we started from.

One last thing, I was nominated to be on the Board of Directors for the Alpha-1 Association in Annapolis, Maryland. The next step is to be elected by the membership to the board of directors. We'll see if I get elected. I'm hoping to bring more of an awareness of childhood Alpha-1 to the entire association. Kids aren't often as recognized.

Finally, we are all walking in the 2005 WI Liver Walk as part of Team Alpha-1. Please consider sponsoring us. Thanks very much. So far, we've raised $600 for research and education. Team Alpha

Mom Jen

Tuesday, May 17, 2005 5:08 PM CDT

Happy Birthday to Grandpa Sandy (Mom Jen's dad)!

Grace and Meghan are doing pretty well. They both seem to enjoy each others company.

Gracie is really becoming the independent 3-year old. Her favorite thing to say is, "No!" This doesn't please dear old Mom and Dad too much, but we accept that this is life with a 3-year independent child. She has learned how to open the refrigerator by herself as well as open the pantry. We're encouraging her to ask first, but she feels otherwise. Gotta love 3-year olds! ;) She just got her first big-girl tricycle. It is blue and pink and has care bear stickers all over it. She just loves putting on her helmet and riding it all over the house.

Meghan did a lot since my last posting. She sat up for the first time by herself on Friday, April 22nd. Charlie and the PT, Mary, witnessed this wonderous feat! Yay Meghan. On Wednesday, April 20th, Meghan had her last breast feeding session before bed. I let her take the lead on weaning, and well, she told me that she was done. I'm a little sad about it since she is my last baby. Sniff. Sniff. I'm okay with being done breast feeding, though. That really is a lot of work, but I did my mommy duty and gave her extra Alpha-1 proteins in my breast milk. Meghan doesn't seem to miss the BF anyway.

On Tuesday, May 3rd, Meghan turned one year old. Happy Birthday to our miracle baby! She went to the doctor that day to receive her last RSV shot, but we found out that she had her very 1st ear infection in her right ear, which meant she couldn't get her immunization. I felt so bad for her being sick on her birthday. I stayed home with her that day and did a lot of reminising about how little she was at birth: 1 pound, 9.5 ounces. Her eyes were still sealed shut, and she mewed like a kitten. We've come a long way since then. At the doctor that day, she was weighed. She now is 13 pounds, 8 ounces. She has gained almost 12 full pounds in one year.

Otherwise, Meghan is progressing very well with her physical therapy. We are now teaching her how to hold herself up on all fours so she can learn how to crawl. This will probably take awhile, but it is worth the wait. Meghan also saw her speech therapist, Liz, on 5/13. We learned that Meghan has a sensory problem with new textures in her mouth, which is why she is having some difficulty eating right now. Liz asked us to use a type of brush on her mouth and gums about 3-4 times per day. She said this might help with her sensory problem. Overall, the problem is that Meghan has a super strong gag reflex and also just plain old slams her mouth shut when offered food. I wish I had that problem! ;)

On May 4th, Jen and the director of the American Liver Foundation, WI chapter, were on the WISC Channel 3 morning show in Madison, WI, to promote the Liver Walk. Gracie and Meghan were both supposed to come on, too, but Gracie revolted at that idea. Meghan was the hit of the show! The newscaster said that Meghan made her ovaries hurt. Funny.

Finally, today, both of the girls saw Dr. Costakas for their annual eye appointments. Gracie did pretty well for the exam and showed off her knowledge of her letters. Grace's vision is 20/20. The doctor wants to see her again in 2 years. Meghan also had an eye exam. Meg has an eye that wanders occassionally, but it moves in a jerking motion not in a fluid motion. Dr. Costakas said this is better than a fluid motion. The doctor also told us that Meghan is farsighted so she'll need reading glasses as she gets closer to school age. Her farsightedness is most likely from being born so early and small. If this is the only side effect from being a micropreemie, we are doing quite well. Dr. Costakas wants to see Meghan again in one year to check the progress of her wandering eye and farsightedness.

Well, that was the very long report. Please consider sponsoring us in the 2005 WI Liver Walk on June 25th. We'd love to have your support! Go to Team Alpha's fundraising page.

Please say prayers for those facing liver/lung disease from Alpha-1.

Mom Jen

Thursday, April 21, 2005 10:11 AM CDT

It has been a while since I last did an update. Both Gracie and Meghan are doing fairly well. We had an invasion of the Rotavirus, though. It really "upset the apple cart" in our house. Everyone got sick including Grandma Kathy. Sorry!

On April 1st, Meghan saw Dr. Blank, our pediatric gastroenterologist. The good news is that Meghan's liver and spleen are no longer enlarged. Yay! Yippee! Her blood work was pretty good, too. Her AST was still a little high, but all other values were in normal ranges. The not so good news is that Meghan has fallen completely off the growth chart even when you adjust for her very low birth weight and prematurity. She weighed in at 12 pounds, 5 ounces. Dr. Blank was concerned so she has asked us to fortify Meg's formula to make it 24 calorie. This is what we did when Meghan was in NICU...shades of the past. Anyway, Meghan seems to be tolerating this okay, but not great. She spits up/vomits a lot more on 24 cal. If it gets worse, I'm going to call Dr. Blank's nurse, Judy.

On April 8th, Charlie and I spoke at the American Liver Foundation's fundraising event called Flavors. Both Gracie and Meghan were supposed to attend since we were the honorary family of the night. Poor Gracie caught Meg's rotavirus so she stayed home. I wasn't doing too well either. Meghan was the hit of the event, though. I suppose it doesn't hurt to put a smiling face on liver disease. :) I'll post some pictures of her. Cutie!

Gracie turned 3 on Saturday except she doesn't want to be 3. She keeps telling me that she is 2. Oh well...she has also decided that she doesn't like the "big kids" room at day care anymore. She has informed us of that everyday since she made the transition almost a month ago. Grace doesn't like change. Gee, I wonder where she gets that from? He! He! Otherwise, Gracie is doing well. She is really turning into quite a beautiful little girl. It is quite clear that she isn't our baby anymore. Sniff, sniff...

Meghan is actively participating in her physical therapy and we are now seeing some progress. She can easily roll from her tummy to her back, but we have to entice her to go from her back to her tummy. It is kind of funny to watch her since her head is obviously the biggest/heaviest part of her. It is the last thing to move in the rolling over process and then it lands with a thud. ;) Meghan also had her speech therapy evaluation on 4/14. She will now get speech therapy to help with eating solids. She is about 3 months behind on solids even with her adjusted age. We were also told that Meg's facial muscles are weak, which may be contributing. We can do exercises to help strengthen them. Lastly, Meghan is really beginning to hold herself up while sitting. We've had to give her less and less support with sitting. I guess I'd estimate that she'll be doing it within a month. Yay! She certainly loves the new perspective.

Kesa, our Alpha-1 free daughter, just celebrated her 13th birthday yesterday. Happy Birthday Kesa! Dad Charlie gets tears in his eyes just thinking about it. Kesa just rolls her eyes at him. Ah, a full fledged teenager now...here were go! We are off to Eau Claire this weekend to help Kesa celebrate.

Well, that is the very long report. Please consider making a donation to Team Alpha. We are walking in the Liver Walk on June 25th. To make a donation or register for the walk, please go to: Team Alpha's fundraising page.

Thanks again for all of your support and please say prayers for those people facing liver disease and Alpha-1.

Mom Jen

Monday, March 28, 2005 5:26 PM CST

Happy Spring!

The girls are still doing fairly well. Grace has a minor cold, again! Meghan had a fever of 100.2 and also has cold symptoms. Of course, this happened on the day she was supposed to receive her RSV shot so that didn't happen. Oh well...I can't wait for warmer weather.

Grace is having fun talking about her upcoming birthday in April. She is even learning how to hold her fingers to say she is 3. We're having a bit of a harder time with her not listening and being quite defiant, but I know this is normal stuff. It is just annoying to have to give her so many time outs. I'm hoping she'll learn eventually. ;) Otherwise, she is really learning how to dress herself even pulling on shirts now. She is so independent! Her favorite saying is, "I'm a big girl now. Ima do it!"

Meghan is vocalizing a lot of sounds now like ma ma, da da, ga ga, goo, a da, a goo, etc... She really likes the sound of her own voice. It is really rather cute. She is the happiest smiliest baby! She was evaluated by the Birth to 3 program, too. She'll now be having physical therapy once a week in our home. Yay! She has a speech evaluation on 4/14, too. We also take her to our GI specialist, Dr. Blank, on April 1st. I hope her labs are better!

Both the girls enjoyed their Easter at Uncle John and Aunt Patti's house. Gracie just loved the egg hunt and searching for her basket, but then she wanted to eat all the candy right away. Well needless to say, that didn't go over very well with old Ma and Pa! ;) Meghan just wanted to stick all the good stuff in her mouth. So cute!

Milestones:
* Meg approved for PT in Birth to 3 program!
* Grace is thriving in her new room at daycare for 3-5 year olds.

Next steps:
* Meg sees Dr. Blank on 4/1.
* Meg has PT on 4/1.

Please say prayers for all children/people facing liver/lung conditions.

Mom Jen

Tuesday, March 15, 2005 4:20 PM CST

Well, the Alpha girls have been battling virus after virus. Gracie finally seems to be coming to the end of yet another cold, but Meghan is now dealing with a very yucky intestinal virus. It has been going on 4 days now so that won't be helping her to gain any weight. I can't wait for the warmer weather to come to alleviate some of these darn viruses.

Meghan was supposed to see Dr. Blank, her GI, on 3/11 but the clinic canceled our appointment. We've got another scheduled for April 1st now. I suppose that is better since she has been so sick for awhile. I'd rather see liver labs done when she is well. Viruses make the lab results worse than normal.

Milestones:
* Gracie is fully potty trained now except at night.
* Gracie is moving to a new room at day care.
* Meghan said da da for the first time on 3/7.
* Meghan learned how to put her toes in her mouth on 3/13.
* Jen's brain CT (for migraines) came back normal. Yay!
* Jen & Charlie married 4 years on 3/17.

Next Steps:
* See the social worker for Meghan's PT in the Birth to 3 program this Friday.
* Get last RSV shot for Meghan on 3/25. Hopefully, she'll have gained more weight.
* See Dr. Blank on 4/1.
* Jen and Charlie to give presentation on our experience with liver disease at the ALF Flavors Event on 4/8.

Please keep the families of children with liver disease in your thoughts and prayers. Plus, remember all of the Alphas. Their daily fight to breathe is literally exhausting. I don't know how they do it! My heros!

Mom Jen

Wednesday, March 2, 2005 5:38 PM CST

Grace and Meghan seem to have finally gotten over a nasty round of various viruses. Yay!

Last weekend, the girls got to visit with their big sister, Kesa, at Grandma Bertelle's funeral. They just adore her and the feeling is mutual. Unfortunately, Kesa caught their sore throat virus, which frustrated her since she sings in the choir.

Gracie is doing her almost 3-year old best to whine her way through life right now. Charlie and I are doing our best to reinforce the need to use a big girl voice and words. I suppose this is just normal kid stuff but it can weigh on you after a while. ;) Otherwise, she is doing great. She has learned her days of the week and recites them in order. She also uses words like yesterday or tomorrow, but incorrectly. Her sense of time is not quite right, but it is cute anyway. Her teachers also report that Grace is very pleasant at school and is completely potty trained there. We still get a few accidents at home, but this is only her 2nd month of being a big girl. We're very proud of her work.

Meggie is her usual fabulous self, too. She is becoming more and more interactive each day. On Friday, February 25th, she started saying ma ma, which reduced me to tears. I was so happy to hear it. It was interesting that she didn't use da da first. She still has to say that. Oh well, it is just different from Gracie. Meghan has also mastered the fine art of laying on her tummy and pushing herself up with both arms. Yay! She can hold that position for close to a minute now before her head comes crashing down to the ground. It is so cute! She is also starting to wiggle around on her activity gym, meaning she doesn't stay in one spot for very long. Our Meghan is really starting to emerge. Finally, Meghan had her RSV/2nd dose of flu shot on the 25th too. She was weighed and only gained 1 ounce since her last weigh in. She is now 11 pounds, 10 ounces, which is a gain of 10 pounds since birth. Wow! (And, here I am struggling to lose weight.)

So, next steps:
* Meghan goes to see Dr. Blank on 3/11.
* Meghan still needs to be enrolled in the birth to 3 program.
* Next month, birthday parties for Grace (3) and Kesa (13)
* In May, 1st birthday party for Meghan

Please keep those facing liver and Alpha-1 issues in your prayers.

Mom Jen

PS: WI Liver Walk is June 25th at Frame Park in Waukesha
Please join us...
www.active.com/donate/wiliverwalk/teamalpha

Tuesday, February 22, 2005 5:15 PM CST

Well, first off, I want to send my deepest sympathies to the B family. Charlie lost his Grandma Bertelle on Saturday, February 19th, to Parkinson's Disease. We'll be traveling to Hudson, WI for the funeral tomorrow. We're sad but she left a long legacy of love.

Also, I want send my deepest condolances to the Martin family in Texas. They lost their precious 1-year old daughter, Grace Emmalea Martin, to complications of liver transplant and biliary atresia on February 18th. Southern Gracie will be missed by all the C.L.A.S.S kids community members. Her loss is felt by many of us in the liver community. I guess I get especially choked up about it because I can't imagine losing my Gracie (or my Meggie for that matter). It was a reminder of how fragile our girls' health really is. Darn Alpha-1 genes.

OK...enough sad news.

Grace is sick once again. I'm not sure what she has but she is spiking a high fever again. Meghan seems to be getting over her cold now, which is good.

Last week, we got news that our insurance doesn't cover Meghan's physical therapy. So, now we must enroll in the county's birth to 3 program. So, her PT is delayed, which has mama and papa bear up in arms. Darn insurance companies! Let's see. They can either pay for it now or pay for it later. C'mon!

So Meghan and Gracie are doing pretty well even with the illnesses. In closing, I'll share a cute Gracie story with you. Last night we were looking at a coloring book and pointing the objects on the page. We got to a letter H page, and saw a picture of a hamburger. I asked Gracie what it was, and she said, "Hamich." I giggled and giggled and giggled. Is that a cross between a hamburger and a sandwich?

Please keep the families facing childhood liver disease in your thoughts and prayers. Also, pray for all the members of the Alpha-1 community. A fellow Alpha, Henry, just received a double-lung transplant at UW-Madison. Please keep his donor family in your prayers, too.

Mom Jen

PS: Congrats to Miss Smarty Pants Chloe on such great work on her kindergarten early enrollment testing!

Monday, February 14, 2005 3:25 PM CST

Happy Valentines Day!

Congrats to our pal, Jodi. She delivered Dylan Patrick yesterday by c-section. He weighed in at 7 pounds, 11.5 ounces and was 20 inches long.

The Alpha Girls are sick again, but this time it seems to be run of the mill cold viruses. We'll get through it.

Gracie is one happy camper today. She was so proud to wear her pretty, Balentines Day party dress with her new Easter shoes (aka dress shoes). She happily marched off to school toting her peanut butter cookies and "balentines" for "the friends."

Meghan is doing quite well, too. Her PT is helping greatly. In fact, drum roll please...Meghan turned over for the first time from her tummy to back on Thursday, February 10th, at day care. Miss Sally witnessed the event during tummy time. Mom Jen (me) has yet to see this wonderful accomplishment, though. She has showed off for Charlie and Grace, but not her dear old mom. I just keep missing it. Oh well, it will happen again soon.

Meghan also had a checkup at the pediatrician's office. She weighed in at 11 pounds, 9 ounces and is 25 inches long. Her head measured 44 centimeters. Poor dear had her final hepatitis shot. Charlie said she cried like a big girl this time, which always tugs at your heart strings.

Next steps for Meghan are:
* PT session on 2/18 and every week after
* Visit to Dr Blank, GI specialist, on 3/11

Grace will see Dr. Blank sometime in September again. Let's hope their Alpha isn't acting up.

Finally, the WI Liver Walk is on Saturday, June 25th at Frame Park in Waukesha, WI. Charlie and I are heading up Team Alpha. Please, please, please consider sponsoring us or joining our walk team. This important event helps fund liver research and education, and is a cause near and dear to our hearts.

Mom Jen

Wednesday, February 9, 2005 4:23 PM CST

Well, we've had quite an eventful week. In my last report, Gracie had just woken up sick. Well, she went on to run a fever of 103.5-104 for four straight days. She was quite miserable, and I'm sure so was her liver. Nasty viruses! Anyway, Grace is just now back to her self, but she is much thinner and now has a post-viral rash all over her body. Thankfully, the rash isn't bothering her at all. It just looks bad. It makes my heart feel good to know that Gracie is better now. I was getting so worried about her.

Meghan had her first PT session on 2/3. It went well and we've been working with her at home. She gets quite tired out from it all, but she really needs it. I guess I didn't really realize how truly far behind she was with her gross motor skills and that her lungs can be so easily taxed by the exercises. I did a little reading about her delays. They are actually "par for the course" for a 26-27 weeker so that made me understand a little more. The good news is that it can be corrected unlike, say, her Alpha-1. We just need to work with her. Otherwise, Meghan is the happiest, most pleasant baby that I've known in a long, long while. What a cutie!

The big story for me is that I went to my physician since I had been having lots of migraines and general head aches/pains like when I had preeclampsia. Well, I now have hypertension (BP=132/94). I just started taking a BETA blocker called Inderal LA, which is currently making me feel extremely nauseous. Yuck! I hope it starts to work and that the side effects subside.

Well, that is the report. I'm happy to say that most of the kids I mentioned in my last entry are now getting better. Please say prayers for all of the families who deal with childhood liver disease on a daily basis.

Mom Jen

PS: The WI LIVER WALK will be at Frame Park in Waukesha, WI on June 25th, 2005. Please join us on Team Alpha. If you want more information, please contact me at my email address: jenchar@uwalumni.com.

Wednesday, February 2, 2005 10:13 AM CST

Both the Alpha girls have been sick. I bet if we pulled liver labs right now that their values would be high/abnormal. Viruses do that to the liver.

Meghan had her RSV immunization on 1/25. She weighed in at 11 pounds even. Meghan caught an intestinal virus last week that lasted about 3 days. She had yucky diapers and would eat just a little bit of her formula. I took her to the pediatrician on 1/28. She had lost 3 ounces, which is quite a bit for her. She seems to have returned to her normal self now, which is good. I hope she can easily regain that lost weight. Tomorrow, she starts her first PT session. Otherwise, she is doing well. She is happy and has begun saying different sounds. Her favorites are goo, baa, and boo. I'm glad to see her language skills are emerging.

Oh, I almost forgot, Meghan had her first taste of rice cereal on Saturday, January 22nd. Charlie dished it out to her, but Megs struggled with it. Most of it went down her chin. It seems like she isn't ready yet so we are holding off a bit to see if a little more time might help.

Gracie was doing fabulously well until this morning. When I woke her up, I discovered that she had puked all over her pillow. I had heard her coughing in the night, but she never complained. Poor thing had it in her hair and down her chin and neck. It was quite a mess. Daddy Charlie stayed home with her today. Otherwise, Gracie is doing really well with her potty training. She can hold it for quite a long while and will tell us when she has to go now. Sometimes, she'll go #2 on the potty.

So, a nasty bug has entered our home and hopefully will leave soon. Please keep the families of children with liver issues in your prayers. Please say a special prayer for Haley, Roger, Gracie, Savannah, Carson, Marcus, Tanner, and Marisa. They have had tough weeks in the hospital.

Mom Jen

Thursday, January 20, 2005 4:57 PM CST

Well, today the Alpha girls are healthy...knock on wood! Gracie is progressing nicely with potty training, and Meghan is still sleeping through the night. Yippee!

Meghan visited the prematurity follow-up clinic today. Well, she was weighed, and is now up to 10 pounds, 15.1 ounces, and she is 24 inches long. That is 5th percentile for her corrected age, 20th on length, and 80th on her head size (big nugget). She is growing but at her own special Meghan/Alpha-1/preemie rate.

She was happy, cooing, and giggling through the entire session, but at the end was quite tired out from all of the activity. The physical therapist determined that Megs is way behind on her motor skills/development. She only has the ability of a 3 month old, which is 3 months behind. So now, she has to go to physical therapy, which was not unexpected considering her very early birth. The good news is that Meghan is not showing any signs of cerebral palsy or other cognitive delays.

We'll be working with her at home too, and we may need to ask day care to do some of the activities with her there. I guess it works out that I'm off on Fridays now so I can take her to PT.

The PT also told us that the therapy may challenge Meghan's respiratory system intitially so she may be sick a little more often because of it. She'll grow stronger over time, though.

So, overall it was still a fairly good report even with the recommended PT.

Please keep the families of children facing liver challenges in your thoughts and prayers.

Mom Jen

Tuesday, January 18, 2005 10:09 AM CST

Well, we've been riding a roller coaster ride in the B household lately. The fortunate news is that both of the girls' livers are holding their own right now.

First off, we took the Pull Ups off of Grace and she has done fabulously well with her potty training. She has occassional accidents, but overall is progressing quite well. She has even gone #2 two times for us, which shocked me. So, overall...yippee!

I thought we would be introducing rice cereal to Megs, but alas, the potty training challenge kept us busy so we'll try food this week. Meghan seems to be progressing pretty well with weight gains now. She'll be weighed next week, but we can tell that she is bigger. Megs also is scheduled for her first visit to prematurity follow-up clinic this week. We know that she is delayed in some of her motor skills, but hope the clinic's assessment will give us some exercises to try with her. Finally, Meghan slept through the night now for 2 straight days in a row! Wow! Yippee! We feel so refreshed. It had been since July 23rd since we had seen more than 5 hours in a row.

So, the big news in our house is that "when it rains, it pours." Literally! Our basement flooded after several inches of rain couldn't be soaked up by the frozen tundra here in WI. Unfortunately, our sewer also backed up into our office and rec room, too. It is quite a large, smelly mess, and of course, is not covered by insurance. We are still cleaning up and ripping out carpet.

Lastly this weekend, the B family made a lengthy road trip down to Saint Louis to attend my Uncle Marc's funeral, who died of lung cancer. It was a very sad occassion. My sincerest condolances go to his wife, Joyce, and his kids, Carol, Alex, and Diane.

Well, that is the report. Our thoughts and prayers go to all the families who deal with liver disease on a daily basis.

Mom Jen

Friday, January 7, 2005 5:03 PM CST

Happy New Year!

The girls are doing quite well right now...no illnesses.

Meghan is officially starting to grow at least taller. On Wednesday this week, I went to put her pajamas on and they didn't fit anymore. She is now moving out of 0-3 clothes finally! Wow, that took quite a while. Meghan is still progressing pretty well with some small delays in her motor skills. Tomorrow, we are starting rice cereal. I hope it goes well. Sometimes, it doesn't seem like her tongue knows what to do. ;)

Grace's vocabulary is ever expanding! She has learned to say the word, either. But, she doesn't use it correctly. It is actually very cute. Just today, she said, "I don't want to go to school either." There wasn't a comparison that she was making. ;) I love watching kids learn the English language. Tomorrow, we are putting big girl panties on Grace and letting her have the "full" potty training experience. This ought to be interesting. I'll update the site again next week.

So, the Alpha girls are doing pretty well right now. Our prayers go out to all of the "liver" families that are dealing with liver challenges.

Mom Jen

Tuesday, December 28, 2004 12:52 AM CST

Well, it is almost the new year. We had quite the "ride" this year, but we survived.

Grace and Meghan had a very nice Christmas. Santa brought Little People toys to Gracie and Peek-a-Blocks to Meghan. Gracie was very cute. She wanted to open all the presents right away. It was so wonderful to see the Christmas magic in her eyes. She even left a Nutty Bar for Santa to eat. Cute!

The girls are doing pretty well right now. Knock on wood! No one is sick either. Wow...we had a holiday without illnesses visiting our home.

Kesa is visiting right now so both Grace and Meghan are enjoying their big sister. I'm working, and Charlie is off with the girls. My vacation was all used up with NICU and family leave time this year. I can't wait for January since I get vacation time again.

That is the report for now. Happy New Year!

Mom Jen

Thursday, December 23, 2004 12:04 AM CST

Merry Christmas and Happy Holidays!

It will be a fun Christmas for both of the Alpha girls this year. Gracie can't wait for Santa to arrive, and Meghan just loves the lights on the tree.

Our biggest news is that Meghan was weighed today for her RSV immunization. She is now officially 10 pounds. She managed to gain more than 1/2 a pound since her last doctor appointment so she won't need to have liver labs drawn. Yay! Yippee! We'll be starting solids in January with her. She has just started to show signs of interest in eating now, which I'm happy to see.

Otherwise, Gracie is still doing quite well with her Alpha. She is becoming quite a smart girl, which has us realizing that she isn't our "baby" anymore. A few nights ago, I was tucking Grace into bed and told her that I'd come back in 10 minutes to turn off her moons and stars nightlights. I told her that the lights would get tired and tell me that they need to go to sleep. Well, she looked up at me and said, "Mommy, they don't have mouths." Whoa! I guess I can't pull the wool over her eyes anymore. Wow! Her expression was what was so funny. She looked at me like I was the stupidest person on the planet.

Anyway, we're having good times and enjoying our girls continued health with Alpha-1.

Mom Jen

Tuesday, December 14, 2004 12:29 AM CST

Welcome to Alpha Girls!

This is Grace and Meghan's web site detailing their journey with Alpha-1 Antitrypsin Deficiency and other growing up events.

Grace is so far doing well with her Alpha-1. Her liver is slightly enlarged, but her liver function tests reveal only mildly elevated numbers. The big news in Grace's life is that she is now sleeping in her first official big girl bed as of 12/4. She absolutely loves it and actually refuses to leave it in the morning. ;)

Meghan is still holding her own with her Alpha-1. Her liver and spleen are no longer enlarged, which is wonderful. Her lab values are still mildly elevated, too. Her big issue is that her growth has slowed way down. She only gained 2 ounces in over 3 weeks. Her pediatrician is now watching her carefully. If she doesn't gain at least 1/2 a pound by 12/23, then he wants to pull her liver labs again to see if something is up.

Well, that is the report for now. I'll update again soon.

Mom Jen

Friday, November 5, 2004 11:51 AM CST

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