He's not so little anymore.



After several rough weeks, he came home from the NICU. We snuck in a chance to see him before he goes into lockdown mode during RSV season. Because of his preemieness, he'll be locked down like Tanner & Morgan were their first year. But, in the meantime, we all got some lovin' in. Here's a very proud Grandma:



The kids got to play with their cousin, Katelynn,



and Morgan got to ride her first horse ---errr, mule. We stopped in and visited one of my high school best friends. She also has a daughter who is about 6 months older than Tanner & Morgan. Morgan rode the mule, but Tanner didn't want to participate.



The trip to Iowa also meant that Grandma Crazy Woman could fix Morgan's Prayer Bears. Morgan now knows that she has three of them...so, it was a rare opportunity to have them all together.




Phew - it's been a busy summer! We're looking forward to a quieter fall. The kids are starting back-up in the actual "school" part of their daycare. We don't have any trips planned, but we do have some exciting stuff happening. Stay tuned for more information.

---

Sunday, June 24, 2007 5:54 PM CDT

Greetings, Family & Friends.

I thought I'd sneak in for a quick update on the kids.

Tanner continues to do well. He had labs 3 weeks ago, and his liver was very happy, and his Prograf level was right on track. We'll repeat liver labs in a couple of weeks.

We also had his allergy levels tested at the last lab draw. The downside is that the lab company we are currently using is not one that has run Tanner's allergy labs before. We knew going in that it could skew the results some. However, we were really surprised when we got his numbers back. He was very allergic to both Egg Yolk and Egg White (High Class 3 allergen). Tanner's never been that allergic to Egg Whties before, and he's NEVER been allergic to egg yolks before. His Total IgE (which measures how reactive your system is at the time) was at it's lowest level ever. This all doesn't make sense to me (it could be denial, too) - so sometime in the next month, we'll repeat Tanner's allergy labs at the Children's Hospital.

Otherwise, Tanner is doing well. He's in the early stages of a growth spurt (feet have grown a size, he's eating us out of house and home) - which sometimes makes him a bit more klutzy. However, his Physical Therapist thinks that he may be able to discontinue therapy this summer (HOORAY!). We have our last therapy session with Ms. Kathy on July 18th. Tanner is officially under the school district care, so he'll have at least another evaluation with the school district once school starts up.

To assist with the physical therapy effort, we've had Tanner & Morgan enrolled in gymnastics this summer. They've gone 2 of the 9 times already - and they absolutely love it. They get to play on all the gym equipment - and it's all the stuff that Tanner would normally do in therapy. It's really been good for him (and Morgan, too).

In speech therapy, Tanner still has a ways to go. Speaking is no longer the problem for him (he talks all the time), it's really being able to understand him. We're working particularly hard on the /s/, /f/, and /sh/ sounds. He's making progress, but he is not the best student in this area.

Otherwise, we are cruising along this summer. We have no real vacation plans because we took our vacation back in April. So, we're just plugging along. I had a spell for work where I traveled for 3 weeks in a row - Randy was a trooper and handled the kids by himself all three weeks. No travel plans on the calendar, but I'm guessing there will be a trip to Denver sometime in July.

They are both pretty much daytime potty-trained with the occasional accident. Morgan is dry about 90% of the nights, and Tanner about 40% of the nights. We are making good progress.

Tanner & Morgan are doing very well in preschool this summer. Instead of having a letter of the alphabet each week, they are doing science & art projects this summer. It's been a huge hit with them - they've learned about scrapbooking, money, stories, and plants. One day, I made a comment to Morgan about "there's a pretty plant", and she said "no, it's not mommy, plants have a stem and dirt". We've even planted our very own pots of flowers & a tomato plant that the kids water each night.

We have very few other plans for the summer. Randy has a cousin getting married in August in Hays, and we are planning on going up to see Cousin Brayan after he gets home sometime in July. We also hope to finally get to make a trip down to Wichita (everytime we plan the darn trip to Wichita, something happens!).

Have a safe & healthy summer!
Stacy, Randy, Tanner, & Morgan

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Sunday, May 27, 2007 10:42 AM CDT

My nephew has taken a turn for the worse. Please say a prayer for him, his mommy, and his daddy. Specifically, he needs healing of his lungs...and quickly.

Here's a link to his site:
Brayan's Website

Thanks -
Stacy

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Friday, May 18, 2007 11:56 AM CDT

Well, I guesst this is when you should never say you're going to stop updating...

Please say a prayer for my "little" brother, Barry, and his wife, Alisha. She is about 29 weeks pregnant with my first nephew. Her water broke this morning and she has started to dilate. She's had a perfect pregnancy up to now, so this was very much unexpected.

From the very small bit of information I got, they are going to try to stop her labor (oh, I feel so sorry for her just thinking about the mag sulfate that they put me on...I'm sure Randy feels sorry for Barry as Randy had to endure me while on that wicked drug). This will enable them to administer the Betamethasone shots to help develop the baby's lungs.

Tanner, Morgan, and I were headed to Iowa for the weekend for her baby shower. We aren't sure if we are still going or not, but I'll try to update here.

8:00 p.m. update

Brayan Donald entered the world this evening at a whopping 2 lb 7 oz (a bit of sarcasm here). They will probably have to intubate him as he is really struggling to breathe on his own (this is fully expected for a 29 weeker). Hopefully they will be able to get him stabilized in the next few hours.

We know this path all too well. Tanner and Morgan were 2 lb 3 oz at 27 weeks. So, they were very similar in size. However, Tanner & Morgan had steroid shots on board for over a week prior to their delivery.

All prayers are greatly appreciated - this little guy has a fight ahead of him.


*****************

Brayan now has his own Caringbridge page - it's a newer version than our "Classic" edition. So, the website is slightly different.

Hopefully, this will work:

Brayan's Website

***********************************

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Friday, May 11, 2007 11:20 PM CDT

Well, here's a quick update.

Thank you to everyone who contributed to our March of Dimes fundraising. We raised over $500 - which is more than we had even hoped. I would love to tell you about the walk and what a wonderful experience it always is for us, but it got cancelled due to severe thunderstorms and torrential downpours in our area. I actually went to the walksite that morning, turned in our money, and planned to participate (even in the rain!). I chickened out when I heard event coordinators talking about evacuation plans and where to put people if a tornado hit. I left, and they cancelled the walk about 15 minutes after I left.

Tanner had labs this past week - his liver is very happy, but his Prograf level was extremely low (2.6). So, we were instructed to dispose of the outdated Prograf we had been giving him (yes, I know, we should have pitched it the entire time, but that medicine costs $220/bottle!!!). So, he is officially switched over to the pill form of Prograf. It doesn't get outdated for well over a year, so there shouldn't be any problem making sure it doesn't get outdated.

Our other big news is that we are making good strides on the pottytraining front. The day after their birthday, we sent Tanner & Morgan both to school in BIG KID underwear. We were shocked when Tanner only had one accident in the first 4 days. He's done really, really well so far - except for with the pooping part. But, he did finally poop on the potty tonight (on his own free will and he even told us he had to do this!). So, we are hopefully.

Morgan has really been mostly pottytrained for quite some time with only the occasional accident. Our struggle right now is when we go outside - they love it outside so much that they don't want to come inside to take care of business. But, they have made enough progress, that we cleared the house of diapers last week.

Otherwise, we're just trying to keep up with everything going on here. We've got the kids signed up for gymnastics this summer, and we are hoping to try swimming lessons in June. That combined with a few wedding and a pending cousin, and our summer is starting to look very full.

Since the kids are doing well, the updates will probably slow down from here on out. If something happens, we'll update the page, but otherwise we'll probably limit this site to quarterly updates with a few bonus updates around birthdays and anniversaries. Thanks so much to everyone for all of their support over the years!

Stacy & Randy
Tanner & Morgan

---

Monday, April 30, 2007

Dear Tanner & Morgan -

Happy Third Birthday! I can't believe that you are turning three already. It just doesn't seem like enough time has elapsed that my itsy bitsy babies have become full-fledged little kids.

Tonight, we weighed you - like we have every 3rd or 4th night since birth (some habits die hard). You weighed in at 27 lb 5 oz (Tanner) and 27 lb 7 oz (Morgan). This is over 12 times your birth weight. At first, this didn't seem such an extraordinary thing, but then I started considering that if a "normal" baby born at 7 lb had done the same thing - they'd be an 84 pound three year old. So, this is actually a pretty extraordinatry accomplshment. You've also both grown from around 13" to just under 36".

Do you remember where we started this year? I didn't - until I took a peak at this picture:



I saw that and I thought, was that really a year ago? Where did my babies go? You don't look like the toddlers in that picture. This past year, you have accomplished so many milestones. In June, you started preschool...and in October, we went one step further and put you in two separate classrooms. Morgan, you are now fully potty-trained, and Tanner, you are pretty close. You guys pretty much dress yourself each morning and are opininated enough now that you actually have to help assist me in deciding what you want to wear.

Morgan, you have grown into a sweet, beautiful child this last year. Oh, don't get me wrong, you still have your stubborness, but underneath that hard shell is a very sweet center. You watch after others around you - especially Tanner. Just this past weekend, you helped Tanner get up and then brushed him off afterwards. You love your brother so fiercely...it warms my heart. But, your love extends beyond your brother...you've been known to stop us in the middle of our day to tell us "I love you, Mommy" or "I love you, Daddy" and at Aunt Sherry's wedding this weekend, you turned to her and said "Aunt Sherry, you have the most beautiful dress."



Oh my, and you are smart as a whip. You are so determined to be in "Pre-K" that you keep telling us that you are going to be FOUR instead of three so that you can start pre-K. You know your entire alphabet and can count consistenly to about 20. On top of that, you've started to sound out letters and can identify starting letters for almost any word we can throw at you.

Your concentration is astanding for a child so small. You will sit and work on something for a VERY long time...until you figure it out. It doesn't matter if it's helping daddy with work...



Or helping him tie his shoes...



Or playing with Grandma....



You have the determination and will power to sit and work at things for over an hour...where most kids your age (well, at least Tanner) give up after only a few minutes.

You are very observant, and mommy and daddy have to constantly watch what we say around you. Earlier this year, you told your teacher that "my mommy has to go to jail". All because I told you it was the law for you to wear your seatbelt, and if you didn't wear it, mommy would get in trouble.



Just a few weeks ago, your daddy & I splurged and took the two of your to Disney World. We knew that we would have fun, but Morgan, I never knew how much fun it would be to see Disney through your eyes. You absolutely lit up when the characters came around, and the look on your face when Mickey Mouse brought your birthday cake out...well, it pretty much made the whole trip worth every single penny.








I know, Morgan, that we have many battles in front of us. How do I know this? Because, trust me, I put your Grandma Crazy Woman through the same battles (ever wonder what made her Crazy?) But, I just want you to know that I love you from the bottom of my heart, little girl. I promise to stick through the tough times...and help you grow into a beautiful, strong, smart woman. I'll be there for you in the hard times, and I hope that I'll be able to support your decisions as easily as your grandparents supported me. I love you, Morgan Olivia.

And you, Tanner Anton, you have developed into such a different child this past year. I'm not sure who gets the credit for all of that - but you are not the same little boy that you were a year ago.

Oh, don't get me wrong. You are still my sweet little boy who loves a good hug...every single morning when you get out of bed, you run towards me and throw yourself into my arms for a good morning hug. You wrap your little arms tight around my neck and give me a good squeeze, and some mornings for good measure, you'll even through in a kiss.

But you have blossomed so much...

A little over a year ago, we started you in speach therapy. At almost two years old, you barely had more than 15 words - well below the norm. We knew you had been delayed for awhile. Your speech has blossomed, you have so many words now. And, while they aren't all so clear, most of the time you do a pretty good job of getting your point across.

I think one of the biggest factors in your chnage has been preschool. We started preschool in a toddler room that you shared with Morgan. A funny thing happened one day, Morgan stayed home and you went to school by yourself. The teachers told us that they saw a whole new Tanner. A boy who came out of his shell and talked, laughed, and played with the other kids. Two months later, we put your and Morgan in different classrooms when you moved up to the "big kid room".

That was a big turning point for you and your sister. No longer did you give in to her requests...you got to make your own decisions. It didn't take you long to decide to apply that philosophy at home as well as school. You also started to initiate some of the fighting that happens occasionally between you two. (Ok, who am I kidding, regularly happens...)



I have to admit, your father and I have been secretly amused by your new found confidence. Morgan no longer bamboozles you by taking your toys...you have been known to outright take things from her hands. And, occasionally, we've caught you instigating the fights and trying to get your sister in trouble. We're actually a bit relieved to see this fiesty spirit.

And, you became all boy. Tractors and cars are a thing of passion for you. I think you are anxiously awaiting the day you get to help Daddy mow the yard. Whenever he mows while you are supposedly napping, I will go downstairs and find you sitting in the window waving to Daddy every time he drives by on the mower.



Like any good boy, you love getting into messes. There have been several times when we've found you head to toe in whatever strikes you...

Easter egg dye...



Cheesy Dipping Sauce...



Occasionally, we see glimmers of a class clown inside of you. Whenever you do something that you know explicitly you should not be doing, you try to avoid trouble by giving us your little grin and your infectious laugh. While it does work occasionally, mom and dad are starting to wisen up.

And recently, we've seen a glimpse of serious Tanner occasionally. Serious Tanner comes out whenever speech or phystical therapy is involved...or whenever any of the Disney characters tried to visit us at Disney land. It is strange to see my little boy who used to be so people happy, having stranger anxiety now.



And, at the ripe old age of three, I think your strongest asset is still your courage. You just don't give up...whether it be speech or physical therpay or learning to do something that your sister is doing...even when things aren't on your side, you don't give up. I know that life hasn't dealt you an even hand, Tanner, but I am so proud for the little person that you have become against these odds. I am so glad for your ability to love and laugh through it all. I am so glad for the light that you have brought to my life. I love you, Tanner Anton.



To both of my twins...I sometimes find it very hard to be the mother of twins. It's not an easy game. You're told not to compare the children...but you can't help but do that a little. It makes you worry sometimes...and it makes you ferociously proud other times. Sometimes it's hard to share my love and time, equally. I hope that is something that your father and I can work on this year...so that you can each have personal time with Mommy & Daddy. That's been kind of tough to do the last three years.



I love you both so much...you have taught me so much about being a mother and a better person...about what is really important in life. Thank you.



Happy Third Birthday, Tanner & Morgan.





A reminder, we are walking in the March of Dimes walk this upcoming Sunday, May 6th at the Shawnee Mission Park. We would love to have any family and friends come walk with us. All proceeds raised go to the March of Dimes which is helping wage a war against premature births.

If you can’t walk with us but would like to support this worthy cause, please consider making a donation in honor of Tanner and Morgan.

A link to our personal walk page is here: Our Family Walk Page.

---

Friday, April 20, 2007 9:29 PM CDT

************Check the Journal for other Disney-esque posts********

As today drew to a close, Morgan walked hand-in-hand with Daddy down the hallway singing “It’s a Small World After All…”

We finished today in good style. We started by taking an alternate route to the Magic Kingdom (via Epcot). We wanted to see what would be required when we went from Magic Kingdom to Epcot for dinner, and it also gave us the opportunity to ride in the front of the monorail. That was really neat, and the kids had a good time (although the driver could have been a bit more cheerful – guess he needed more coffee).

We started the morning off by heading to Toon Town inside of Disney – this is where Mickey’s & Minne’s houses are located. The kids got a kick out of touring the houses.





(Minnie’s refrigerator was stocked with cheese.)

We tried playing on Donald’s Boat – but Morgan right now has a phobia of getting wet. Of course, she got splashed as we entered the boat – and was D.O.N.E.

Then we hit the character area in toon town and met three princesses – Snow White, Cinderella, and Belle. Another replay of the other day – while Tanner won’t have anything to do with the full characters, the “face” characters he hugs and laughs and talks with it. It’s amazing how he transforms.










Then we went through the Mickey’s Philharmagic 3D show. This was just incredible, and probably one of my (and Tanner’s) favorite shows. They go through many of the favorite songs of their different animated flicks – all done with incredible 3D affects (they even pipe in the smell of apple pie at one time & splash you with water to add to the effect). It was really, really neat.

We hit It’s a Small World. If you couldn’t tell – it was one of Morgan’s favorite rides because “it wasn’t dark and scary”. She has sang that song off and on during our entire day of trip. She asked to go on it again, but was side-tracked by Cinderella’s Carousel. After that, we headed back to Toon Town and did a loop around the Magic Kingdom on the railroad before heading to Epcot.

At Epcot, we really only went for the meal. We’re still having a hard time convincing the kids that Chip and Dale are two Chipmunks, not just one Chipmunk named Chip and Dale. This was especially confusing when they both showed up at our table at the same time.








Oh, wait, you don’t see Tanner in those photos…yeah, that was because he was glued to his seat.



He did smile, wave, and blow them all kisses. He even played Peek-A-Boo with Mickey. We had a late reservation, and we got a lot of character interaction out of it. Pluto tried to eat Morgan’s ice cream for dessert, Mickey played with both her and Tanner, and the chipmunks were probably by our table a half a dozen times. Each time, Morgan had to hop out of her seat and give them hugs. When asked tonight who her best friend was, she replied “Chip and Dale”.

Then we made our 16th bus ride of the week back to the hotel. The kids took a short nap, and I started packing us up. We came in 5 checked bags, it looks like everything will fit in those same five bags to go home in.

We had dinner again at the cafeteria here in the hotel (I never dreamed we’d eat there 3 times this week). Then we walked around and viewed the animals, let the kids play on the playground, and then spent some time in the lobby while we figured out transportation for tomorrow morning.

While the kids played on the playground, it gave Randy & I a little time to reflect. We know the kids aren’t going to remember much about this trip – but we certainly are. This trip was a time for us to hopefully relax and find some peace with the last three years of our lifes. Our trip departing on Monday seemed appropriate – Monday was the day that I started having problems with my pregnancy. Just two short weeks before the kids were born – way too early.

We fought through the NICU – we’ve battled the liver transplant – subsequent egg allergy ~ and all of the emotional baggage that goes along with that. It has not been an easy road…and there are still days that it is very overwhelming.

During the parade on Thursday, as I stood there with Tanner on my shoulders, I couldn’t see his face. But I could hear him laughing, calling to the princesses, and waving – I could feel his smile. That’s what this trip was about – letting ourselves experience happiness. And while happiness to a three year old is seeing princesses, happiness to thrity-something year olds is having children healthy enough to enjoy it all. Thank you, Walt Disney World, for letting us experience that.

We head back home tomorrow mid-day. The kids are already asking when we’ll be back…after all, this is the Happiest Place on Earth.

---

Thursday, April 19, 2007 9:39 PM CDT

Yes, indeed, we got a late start today. The kids didn’t get up until around 9 a.m. – and it was after 10 o’clock before we left the hotel room. But, the kids were well rested and in better moods.

We started the day at the Magic Kingdom, and since we got there much later than we originally hoped (10:45) – all we could do was a bit of shopping before our lunch reservations at the Crystal Palace. The Crystal Palace features a nice buffet with Pooh, Eeyore, Piglet, and Tigger.

We’ve been really impressed with how much character interaction we’ve gotten at these meals. We saw each of the characters twice today except Eeyore. Once again, Morgan was our character groupie and Tanner was our chicken.





He would jump & shout whenever he would see the characters, calling out their names, pointing – but whenever they would get within 10 feet, he would retreat behind our legs, backs, or any available structure.

He did better today, however, and we did manage to catch a few pictures of him with the characters…usually as long as mommy or daddy were nearby.

This one caught early in the meal….



This interaction caught at the end of our meal….





He got better towards the end…we managed to sneak in pictures with Pooh & Piglet





We then went and hit a few rides that Randy & I wanted to see – even if we knew they might not be to the kid’s liking. We hit the Pirates of the Caribbean, Jungle Cruise (dorky, but a Disney classic), and the Haunted Mansion. We finished the day up with the daytime parade.





They both loved the parades – especially the princesses. But, really, that has turned out to be both of their favorite part of this entire trip.

Then we packed up & headed back to the hotel. We stopped by at the gift shop & purchased the kids a Mickey animal (Tanner) and Minnie (Morgan). For the kids, it was love at first site.





You know it must be serious if Minnie sleeping with Prayer Bear and Morgan.

After nap, we watched the animals for a while. We had two giraffe, three zebra, a couple of wild boars, and a bongo. The giraffe were about 100 feet from our window while the bongo was literally 18 feet below our balcony. It’s neat to watch them.




(this is a Bongo – kind of like an antelope, called the “Shadow of the Forest”)

We then headed out for a quick dinner at the hotel café (the Mara). And, let the kids play in the wading pool. They literally cried and threw a fit while putting on their swimsuits, but had a ball once they started splashing water.



I can’t believe that we only have one full day left. We hope to get to the park earlier tomorrow – we’re trying to get the kids to go to sleep now. We now have late lunch reservations in Epcot with Chip & Dale, Mickey, & Pluto. Tomorrow we plan to spend in Fantasyland (Small World, Mickey’s Philharmagic, etc) and Toon Town (Minnie & Mickey’s Houses, Goofy’s Boat, and Meet & Greet with the characters ~ hopefully the Princesses).

Tomorrow evening / night, we plan on hanging out at the lodge. We’ll have to leave in good time on Saturday morning (9:30 or so), so we want to make sure bags are packed before we leave. We may try swimming again, playing on the camp equipment, or checking out the animals again.

---

Thursday, April 19, 2007 7:11 AM CDT

*************Please check the Journal tab for additional Disney entries***************

This was a big planned evening for us. I had managed to order an egg-free birthday cake for the kid’s at Chef Mickey’s. Now, I know that their birthday isn’t for another 1.5 weeks, but we wanted to celebrate it while we were down here. And, in the spirit that Disney can do nearly anything, they were able to make Tanner & Morgan an egg-free cake.

So, off on the monorail to Chef Mickey’s. The kids loved the monorail and it was a very convenient form of transportation. The characters were in full force. This was much to Morgan’s great delight. And, Tanner would squeal everytime a character came near, jumping in his seat, shouting their name, but when they got close….



“Tanner, do you want to meet (insert character’s name here)?”

“NO!”

Morgan LOVED meeting the characters.









And, of course, the highlight was when the birthday cake came our. They play a birthday song about every 30 minutes. Our waiter delivered it to the table:



And, then the characters come around to wish the kid’s happy birthday. In this photo, Tanner did not know Goofy was behind him.



When he found out, he hightailed it to the other side…you can see the empty seat in this picture:



He wanted nothing to do with it when Mickey came over to help blow out the candles. Thank goodness Morgan loved the help.




After dinner, we headed back on the monorail to the Magic Kingdom. We had considered skipping it, but we had promised Morgan the night before that she could ride on a carousel “tomorrow”. Of course, she had not forgotten.



This was Morgan’s first sighting of the castle…



We walked down main street towards the castle (we’ll do some shopping over the next few days), and made our way to the carousel. We actually walked right onto the carousel with no waiting.

While on the carousel, Morgan spotted the Dumbo ride and said “I want to ride that!”. Now, Dumbo is known for little kids loving it, and incredibly long wait times. When we got the line, there was a lady there, so I asked her how long the line was.

She said “Well, as chance would have it, I need a co-pilot for Dumbo, would one of your kids be willing?” This lady was part of the “Year of a Million Dreams” – and the “dream” she granted was a co-pilot for Dumbo’s ride – front of the line, no waiting, with a pilot’s license to prove it.



While it wasn’t a night in Cinderella’s castle, I was excited, and Randy was pretty amazed when he figured out what was going on.

Then, we rode the Winnie the Pooh ride. It was deemed to be very kid friendly, it still scared Morgan.

And, then, Randy & I decided that we would try to stay for the parade. We actually got excellent seating, and then waited the hour for the parade to start. Amazingly the kids were pretty good for the entire hour, and I think they (and we) were rewarded. They were very intent on the parade:





It really is a gorgeous parade with the nights on all of the characters and floats. We considered sticking around for the fireworks, but it started to rain just as the parade ended, and we really weren’t prepared for that. So, we took our four weary selves back to the hotel.

It’s nearly 8 a..m., and the kids are still out. So, it will be a late start today. We’re headed back to the Magic Kingdom for lunch with Pooh & friends (any wagers on whether or not Tanner will warm up to these guys?).


In other news…we’re starting to get really worried about Tanner. He has been doing wonderful with potty training down here. He’s had no accidents, even when we haven’t been able to get to the potty for 20 minutes after he’s asked (bus ride). However, he hasn’t pooped since we left Kansas (Sunday night). He’s tooting, so I’m more worried about whether or not I’ll have to change him when he does finally explode.

---

Wednesday, April 18, 2007 2:00 PM CDT

**************I've been adding Disney updates 1 - 2 times each day this week, to see older posts, please go to the "Journal" section*******************

Disney - Day 3: Animal Kingdom Revisited

I think Vacation Mode finally kicked in today. Instead of setting the alarm and hustling out of the room, we let the kids sleep in (until 7:30 ET). They slept much better last night, and were well rested this morning.

Today, we conquered a few things in



I really only had two things I wanted to do while I was there – the Kilamajaro Safari & the Nemo musical. We headed to the Safari first, and even though we were in a mob of people, we basically walked right on the ride. We were in the front row of the “bus” and Tanner & Morgan enjoyed it. But, they always love all of the animals.

We spent some time hanging out in the “Africa” portion of the Animal Kingdom, which included some lively music demonstration.



Tanner is our music lover, and I think he really enjoyed this.

We then ate lunch at the Tusker House in Animal Kingdom. I have to say, for anyone heading out to Disney soon & on the dining plan, this was one of the best meals that we had as a “counter service” the entire time we’ve been here. We purchased the kids Mac & Cheese, Randy had Salmon, and I had a ˝ Roasted Chicken. What I had of the chicken was good – Morgan polished off more of it than I did, and Tanner had a crack at it, too. The vegetables were great (fresh green beans and carrots). We felt this was one of the best bang for our bucks.

Then we headed out to the Nemo Musical. As we headed in that direction, we noticed that Pooh, Eeyore, and Tigger were available for meet-n-greet, so we decided to stop by and say hello. Based on the kids normal personalities, we were expecting Morgan to be very shy during this whole thing. Boy, did we get it wrong.

Morgan LOVED the characters this time…



Tanner did not.



After that, we headed to the Nemo musical. To find that we’d missed the showing by about 20 minutes. The next showing wasn’t until 1 p.m., and with our scheduled outing tonight, we didn’t think that would work (of all of the “rules” we have here, naps are the most set in stone).

So, I took a deep breath and reminded myself that we can’t do it all while we are here and still have an enjoyable time. So, we skipped the Nemo musical and hit a few of the shops on our way out of the Animal Kingdom.


Now, I’m going to take a few minutes to comment on why people return over & over & over again to Disney. We have had exceptional service & accommodation so far during our stay. We have never encountered a place that did not take Tanner’s egg allergy seriously – or without concern for what he could eat (and to make sure that he did have something to eat). We’ve worked with the head chef at every sit-down meal that we have had. This has just been a huge burden lifted from our shoulders.

It’s also the people that help you every single day. Yesterday, I decided to change our Friday night reservations. Instead of Downtown Disney for Wolfgang Puck’s, we decided to stay closer to one of the parks. The lady who helped us was so patient checking the different restaurants until she found us reservations at Liberty Tree Tavern. The lady in the store today talked to Morgan – one on one. Yesterday at Downtown Disney, the checker let Tanner help scan our purchases.



The maid made a “crown” to put all of our toothbrushes in. It’s really been top-notch exceptional service. The wait staff has been knowledgeable, helpful, and friendly. I haven’t had a single even slightly negative encounter yet. It is truly amazing to me.

Oh, and the view doesn’t hurt either…(this was taken on our walk to our hotel room from the lobby).



And, lastly, gratuitous picture of my favorite little boy enjoying his “Mickey” ice cream sandwich:

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Tuesday, April 17, 2007 9:39 PM CDT

**********I've been posting daily updates from Disney - sometimes 2x/day - check out the Journal for older posts**********

Day Two - Take Two (Afternoon)


It was a late afternoon start. We didn’t heat down to the bus to our next destination until almost four o’clock. We still would have gotten to our destination quickly if it weren’t for the world’s most careful bus driver…if careful means driving 15 – 20 mph LOWER than the posted limit, and only driving on side streets so as to avoid mutli-lane traffic. Our trip to downtown Disney which only took 13 minutes to get home, took about 30 minutes this afternoon.

We decided to mix our trip up a bit. We decided to hit Downtown Disney tonight instead of waiting until the last night. I think this turned out to be a great plan. We found a lot of things in Downtown Disney, but amazingly, no t-shirts we liked for the kids. So, now we can still shop for those without feeling like we have no time to get something else.

When we first entered the park, we found the Pooh store, and beside it was a quiet bench. Tanner & Morgan were more than happy to take pictures with these characters.





Then, we hit the Lego store and Wide World of Disney store. I don’t know what I was expecting, but something different. So, we got a few things, but not as much as I had planned (my wallet and my husband are grateful). We did let the kids pick out “something” – I think they were overwhelmed with their choices, so it was kind of funny when Tanner settled on his ears. What one has, the other usually wants.





We’ve got ears, say cheers! (Any mom of toddlers who watches the Mickey Mouse Club will appreciate that…)

By the time we ate supper (Earl of Sandwich – very yummy sandwiches), rode the bus back home, gave baths, and got the kids to actually fall asleep, it was nearly 10 p.m. My guess is we’ll get a late start tomorrow.

On tomorrow’s agenda, a final tour of Animal Kingdom. Supper at Chef Mickey’s. This is our “big” affair. We’ve arranged to have an early birthday there for Tanner & Morgan. I was just so pleased when they were able to make an egg-free birthday cake for the kids. Afterwards, we’ll probably ride the monorail around the resort and possibly see the evening parade & nighttime fireworks at Magic Kingdom. It all depends on naps and level of grumpiness.

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Tuesday, April 17, 2007 2:23 PM CDT

You know the day is starting out right when your almost-three year old jolts you out of bed at 5:50 a.m….

Thankfully, it did actually get better when we peaked out the window and saw these guys peaking back….



So, we gathered up the herd. Tanner really would have preferred to sleep awhile longer, but Morgan was excited to FINALLY! SEE! THE! PRINCESSES! So, off we went to Epcot:



Since we got there early (8 a.m.), we used the opportunity to ride the Spaceship Earth ride. It scared Morgan to death (you’ll notice a reoccurring theme here). After that, we decided to check out the all new Nemo ride. Unfortunately, we got there a bit early & had to wait awhile. Which, in mommy’s world, means photo opp.



It was a fairly short ride, and cute. It scared Morgan. I would have said it was hardly worth the wait…until I saw the animation in the water. I’m not sure how they did it, but they actually make an animated, 3D Nemo “swim” with the real fishes. That was incredible.

On the exit of the Nemo ride, we encountered a bunch of aquarium displays. Morgan & Tanner loved watching the dolphins swim in the tank, and then we let them count Nemo.



Now, for those of you who know Randy & his background, you’ll understand how much he enjoyed finding the following item:



Yup, that is a Walt Disney World survey marker. We spotted a few different ones around the park, and to say the least, Randy was very tickled by this.

We then did a ride through The Land, which talks about how plants have been grown in the past, and what Disney is doing to grow things in the future. I remembered this ride from long ago, and it was still really enjoyable. And, yes, even this ride scared Morgan (pretty much any dark ride is going to scare her). We were tickled by the 9 pound lemons (they can each produce a gallon of lemonade!) and the Mickey Mouse shaped pumpkins.

Finally, off to see the Princesses. We had originally booked the Princess lunch for Morgan – boy, did we underestimate Tanner. He totally & completely fell in love with the Princesses. Where yesterday, they wouldn’t go near the cast of characters, today, they did not hesitate to see the princesses.

We got to start by greeting Sleeping Beauty (thankfully my kids know which princess is which)…



Tanner literally ran up to her to give her a hug and about knocked Morgan out of the way. We should have read this as an early indicator of what was to come.

And then, the other princesses came out:

Ariel



Belle



Jasmine (probably Tanner’s favorite)





and finally, Cinderella…



Each princess stopped at our table and took time to ask the kid’s name & age (and usually if they were twins). The kids ate it up. That smile that Morgan has on with Jasmine above – she had that on almost the entire time that the Princesses were near.

When lunch was finished, we went to leave and had to literally carry Tanner screaming & kicking out of the restaurant. He kept pointing at the door where all the Princesses had entered from – he really wanted to see them again.

We then left Epcot & headed back to the Animal Kingdom. Thankfully, it’s a short bus ride. This time, there were only three families on the bus and we learned that Disney is 40+ square miles and employs over 57,000 people (that doesn’t count some of the food vendors or bus drivers which are subcontractors). Truly amazing when you think about it.

And that, that was all done before 1 p.m. The kids and Randy are napping now. Take Two coming soon.

---

Monday, April 16, 2007 9:46 PM CDT

Traveling with two (almost) three year olds can be taxing. But, the good news is that all of us and all of our luggage made it to the hotel. What more can you ask for?

Tanner absolutely LOVED the airplane flight. Morgan was a tad bit more anxious, and held onto Mommy's hand during the landing. She doesn't like it when the plane "squishes" her into the seat. We tried to convince the kids to take a nap on the plane, but that wasn't happening.

During the bus ride from the airport to the Magical Kingdom, they did decide to nap - even though they probably only got about 20 minute nap in.



We're staying at the Animal Kingdom Lodge this week - and it's truly gorgeous. We booked a "standard" view room, which means that we would overlook the parking lot. However, we agreed to overlook construction of the new Disney Vacation Club villas... Sounds bad? Not if you consider that it is still a Savannah view room. So, even though we do see a new building be constructed, we've spotted an impala, some kind of oxen, ostrich, and a giraffe from our room already. It was a good way to start the trip out. The rooms are a bit small, but we probably won't be spending much time here anyways.

We ate a quick lunch of fried shrimp (for Randy) and pizza for the kids & I. Since Tanner & Morgan are under 3, we did not have to buy a meal plan for them. So, they eat off of our plates. And, for desert, these marvelous little things called Zebra Domes. Oh my goodness - so good with some kind of liquor in them. I think I've found my dessert of choice.

Then we hit the Animal Kingdom. We got there at the tail end of the parade - so we had to fight the masses of people that were leaving the park. The good news is that the park was probably much less crowded than what it was earlier in the day.

We also hit the Lion King Stage Show right as it was getting to start. We got great seats - second row. We hadn't heard much about this show, but it was really incredible. About 1/2 way through, Tanner turned to me and said "do it again!". He loved the singing & dancing that was performed.

The show starts with four people coming out and introducing the show...they were quite funny.



And then these large garage doors open on 2 sides of the show, and they roll out these huge stages. It was incredible. Four of them were safari animals that sat between the four sections of people. Then they also rolled out a stage that was in the middle of the arena. When it came out, it was a trampoline and the "monkeys" preformed amazing acrobatics.

Then, there was a bird who came out and "flew" threw the air. It was beautiful and Morgan was really in awe of that one.

Finally, they performed The Lion Sleeps Tonight...which you'll remember is one of Tanner's favorite songs. In the middle of the song, one of the monkeys stopped by & posed for a picture. It was tough to get a clear picture with the stage lighting.



We then went to see Mickey Mouse. This would have been a great photo opportunity, except the kids freaked out on us and wouldn't go anywhere near him. The Disneyphotopass people got a picture of all of us with him - we'll have to settle for that. We headed back to leave, and ended up seeing Mickey, Minnie, Donald, & Goofy on our way out. Tanner specifically asked to see each one of them, but wouldn't go close to them after we got to the front of the line. He did blow them each a kiss. Hopefully they'll warm up before it's too late!

Finally, we came back to find our luggage had been delivered. We then headed down to dinner at the Boma restaraunt which is an all-you-can eat buffet (worked well for sharing meals with the kids). We learned that Tanner & Morgan loved Prime Rib. They also got to enjoy a special Soy Cream ice cream since all of the desserts have egg in them.

We've only been to two restaraunts here in the hotel so far, but have been impressed with both. This afternoon, they offered to make us Chicken Strips without egg... and tonight the head chef showed me around to point out "safe" foods. He checked in with us 3 times, and personally delivered the special ice cream topped with whipped cream and cherries. If our other dining experiences go this well, it will be a huge relief for us!

Check back for more updates soon….

*****************************************************

Many of you have followed the stories of some of our other liver friends over the last two years, so the name Aiden will be very familiar to you. Lisa has been one of my strongest supporters the last few years.

Aiden has an adorable little brother, Mason who is about 19 months old. Mason has had some developmental delays which prompted some testing last week. The doctors told them on Thursday of last week that Mason has a brain tumor. Additional testing is required before they will know if it is malignant or benign and whether or not it is operable.

Please join me in praying for this family. This family believes in the power of prayer, and now more than ever they could use it. Please pray for Mason's tumor to be benign, operable, and leave no permanent damage.

Also, drop by and leave them some enocouraging words in their guestbook - while it may seem like such a little thing, this family feels the love and warmth from those messages.

Thanks!

---

Sunday, April 15, 2007 7:04 PM CDT

We'll get the medical stuff out of the way first. Tanner had labs last week to make sure that switching him to the pill form of Prograf was going ok. Good news is that his levels are perfect and we have a very happy liver.

Tanner, Morgan, & I are all still suffering from the cold that we had last week. Tanner has been on an antibiotic this week to prevent an ear infection that was brewing and to knock out a small wheeze he had. Tanner's also on breathing treatments & Mucinex with cough. We're hoping some Florida sunshine will make us all feel better.

We are packed & ready for the land of the Mouse...or at least as much as we ever could be. Thankfully, I'm one of those people who like to prepare early, so this weekend wasn't nearly as stressful as it could have been. And, even with all of that, I feel like we're just finishing stuff under the wire. Thankfully, though, we won't be packing at 1 a.m.

We spent this weekend doing some fun things on top of the packing & shopping that had to be done. We managed to enjoy the finally spring-like weather...including a first outing on our tricycles and some good ol' fashioned sliding.





Now, other important aspects of getting ready for the trip including reading through our planning books:



And, discussing what we wanted to see in the Magic Kingdom:



We even managed to try on the sunglasses that Grandma Red & Aunt Sherry picked up for us over a year ago in Disneyland.





Of course, Mommy & Daddy had the hardest work of all - packing up all of our stuff (isn't it amazing how much STUFF we need for 6 days).



We're really excited about the Magical Express Option from Disney. This means that all of our luggage will go from check-in at the KCI airport directly to our hotel room. How excellent is that? And, we should come home with less than what we went with - there are diapers & egg-free snacks packed in there.

It's still yet to be determined if everything will fit in the car - this is the car without us and the carry-on bags (Tanner & Morgan's backpacks, diaper bag, and one roll-on with medicines and such).



The kids are in bed, we're finishing last minute cleaning & packing - and all seems on target for launch tomorrow morning.

Wish us luck...




*****************************************************

Many of you have followed the stories of some of our other liver friends over the last two years, so the name Aiden will be very familiar to you. Lisa has been one of my strongest supporters the last few years.

Aiden has an adorable little brother, Mason who is about 19 months old. Mason has had some developmental delays which prompted some testing last week. The doctors told them on Thursday of last week that Mason has a brain tumor. Additional testing is required before they will know if it is malignant or benign and whether or not it is operable.

Please join me in praying for this family. This family believes in the power of prayer, and now more than ever they could use it. Please pray for Mason's tumor to be benign, operable, and leave no permanent damage.

Also, drop by and leave them some enocouraging words in their guestbook - while it may seem like such a little thing, this family feels the love and warmth from those messages.

Thanks!

---

Sunday, April 8, 2007 11:29 AM CDT

Happy Easter - well, at least I think it's Easter. It feels a bit like Christmas right now - it was 22 F when we left for church this morning. I'm not sure, but I think Christmas morning was warmer than that.

The day did not start good. With the recent dip in temperatures, Tanner & Morgan have both picked up a runny nose / cough combination. It's infurtiating, especially given the fact that we are headed to Disney in 8 days (not that I'm counting). The last thing I want is to schlep two sick kids through Disney World. My biggest fear is Morgan - one of these coughs on her can last anywhere from 2 - 3 weeks.

On top of that, Tanner appears to be really tired & irritable - and doesn't have his listening ears on. By the time we got home from church, Tanner had lost his Easter basket and had to earn it back. He didn't take that very well.



Especially since Morgan was already enjoying her Easter basket:





He finally "earned" back the Easter basket by posing for Easter pictures with his sister. As you can see, he wasn't the most excited, but at least I was able to get a few smiles out of him. I'm not sure which of these two pictures I like better:





He was then finally able to dig into his Easter basket.







The Easter Bunny is one smart cookie, he she brought the kids stuff that will help on the upcoming Disney trip. Including a Mr. Potato Head (in Downtown Disney, they have an area where you can buy special Potato Head parts...in bulk...I have to admit, this is probably one of the things that excites me most, and will definitely be one of our purchases), Carz & Princess Sunglasses, and Disney wash mitts. Morgan especially liked her sunglasses...



Happy Easter!

***********************************************************


Don’t forget, we are participating in the March of Dimes walk on May 6th in Shawnee Mission Park. If you're local - we'd love you to come walk with us. For anyone who ever asks me what to get the twins for their upcoming birthday - please don't get them anything - donate in their honor. I attribute much of the success that my children had in the NICU & these subsequent years to March of Dimes research. A link to our family team for the March of Dimes is here: You can sign up to walk - or donate at this link.

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Thursday, March 29, 2007 7:45 AM CDT

We are back from St. Louis - it was a good trip as long as you don't actually consider the actual "getting to" & "getting from" portion of the trip. Remember that Tanner & Morgan are pottytraining? Yes, they still are, which meant we probably stopped 5 -6 times in each direction. What should be a 4 hour drive is more like 6 to 6-1/2 hours with them. Pure MISERY (for mom & dad that is).

Tanner had his kidney function test, and his results were great. Anything over 100 is what a person with 2 functioning kidneys would have - Tanner's was 156! Hooray! So, that is one less thing to worry about. Otherwise, we're kind of on cruise mode. His liver was very happy, and his other lab values were just dandy.

We did stop & ride the Faust Park Carousel on our way out. We also visited the Forest Park playground, and the Zoo on Saturday. Tanner & Morgan had an up close & personal interaction with the giraffe and a good time. We left by 11 a.m. - and good thing as the zoo got packed and HOT.

We've got a few extremely busy weeks before we get ready to go to Disney World. American Liver Foundation Fashion Show (Tanner, Morgan, & Randy are all models), haircuts, taxes, house cleaning, shopping, & packing. It seems like we should have plenty of time, but we're also trying to have everything ready for Aunt Sherry's wedding before we leave.

We're quickly approaching the kid's third birthday. It is a hard date for me to approach. I don't know a NICU mom who doesn't wonder what they could have done differently to prevent their pre-term labor. After we had the Disney trip scheduled, I realized that the day we leave, is also the day that I first started having problems in the pregnancy. It seems somewhat appropriate to be embarking on a vacation that day with my now nearly three-year-old, "healthy" kids.

When we get back, we'll do something that is very important to us...we'll be participating in the March of Dimes walk on May 6th in Shawnee Mission Park. If you're local - we'd love you to come walk with us. For anyone who ever asks me what to get the twins for their upcoming birthday - please don't get them anything - donate in their honor. I attribute much of the success that my children had in the NICU & these subsequent years to March of Dimes research. A link to our family team for the March of Dimes is here: . You can sign up to walk - or donate at this link.

Stacy

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Wednesday, March 21, 2007 12:32 AM CDT

We spent the past weekend at my parent's house. Unfortunately, we are rarely there for more than 36 hours. So, it's relatively a quick trip. But, since my parent's live in nowhere Iowa, we like to find things that we can do with the kids. This weekend's project was coloring Easter Eggs - and a birthday party (my sister-in-law is getting married their birthday weekend, so we won't be able to celebrate then & this was our only weekend to either go to Iowa or have Grandma & Grandpa come here).

I didn't realize that Easter Eggs would be so much fun with the kids this year. Here is a picture of us getting all set up - please note the clean work surfaces.



The kids dug right in. Tanner loved scooping the eggs out of the dye and making all different colored eggs.



Morgan, on the other hand, would only make PINK eggs.



Both grandma & I were surprised at how quickly the eggs disappeared. But, it was somewhat exabberated by the fact that once Morgan realized our supply was limited, she would dunk the eggs and put them in her pile as quickly as could be.

Thankfully, we figured out Tanner could redye the pink eggs and make a cool purple. Morgan even agreed to share some of her eggs in this endeavor.



And then, it was time to clean up. The kids were very good about helping wipe up the tables - notice how messy Tanner got in this process.



That night, we had the twins' and cousin Katelynn's belated birthday parties. I don't think that any of the three of them minded celebrating early (or late in Katelynn's case). Here they are with their (egg-free) cupcakes.






And, enjoying the goods...







In medical news, Tanner's viral studies for the EBV & CMV were negative (thank goodness!). We are headed to St. Louis this week for his kidney study that was post-poned in February and his annual check-up. While it does require a 5 hour medical test, we view it as a good time. We hope to stop at the zoo & several parks (weather permitting).

Morgan is still suffering with a cold that has caused her to have quite an asthmatic episode. We had to start her on steroids on Monday to help whip it into shape.

The weather is warming up - and we are really getting excited for spring. The kids have gotten to play outside a few times, get longer recesses at school, and we had to buy jackets to replace our winter coats. We're looking forward to an action packed spring including our trip to St. Louis, a few Easter egg hunts, Disney!, and Aunt Sherry's wedding, followed by birthdays. We've got 5 busy weeks coming up.

Stacy

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Thursday, March 8, 2007 2:42 PM CST

It's been a crazy few days.

Tanner started having some funky drainage out of his eyes last Saturday. I figured this was remnants of his ear infection (during the rotovirus incident) that hadn't been cleared up with Amoxicillin. We called our pediatrician who agreed, and gave us a prescription for an antibiotic over the phone.

This continues, but I'm still convinced it's just the ear infection. So much so, that we go meet up with another transplant family & our neighbors. Neither of whom I would ever expose had I thought it was anything else. Sunday night, Tanner has a fever. It's around 38.8 C - and we're supposed to call transplant at 38.5 C. But, I really hate to call them on the weekend, I'm SURE this is the ear infection, and so we tough it out. Fever breaks overnight.

Monday is about the same, and another return nighttime fever. We've got an appointment on Tuesday with the pediatrician for follow-up, so I don't think too much about it. But, I call St. Louis "just in case".

When we get to the pediatrician's office, she finds swollen lymph nodes in the next and enlarged tonsils. And those ears, yeah, they're fine. Just in case it is bacterial instead of virus, she changes his antibiotic. t. Louis requests to have some virus studies run. I think ok - we'll check it off. We get blod drawn. Cyclic fever is returning before we leave the pediatirican's office.

I'm pretty good with things at this point. But, then our transplant coordinator Penny calls. Dr. Shepherd is very concerned that this might be EBV. It's that time of year, and Tanner has all of the classical symptons. We're anxiously awaiting the lab results. If the fevers continue (prior to getting the lab results back), we'll do a chest x-ray to look for more swollen lymph nodes. And, if it is EBV - they will stop his rejection medicines.

Needless to say, Randy & I are nervous and worried. EBV (Epstein Barr Virus) is a pretty common bug - but for transplant patients, it can really wreck havoc on their systems. If left alone and not aggressively treated, it can cause PTLD (a type of cancer). It is possible to have Tanner's symptons and not be EBV positive - and it is possible to be EBV positve and not gt PTLD. But, either way, it's not in a fun position to be in.

So, please say a little prayer for us. We're pretty edgy and worried, and we're told that the results *might* be back on Friday, but more than likely it will be Monday.

And, while you are saying prayers, please pray for Tanner & Morgan's teacher, Ms. Keighley. Keighly lost her husband in a freak boating accident on the Kansas River Tuesday afternoon. He leaves behind Keighley, as well as a 3 month old & 2-1/2 year old son - and Keighley's three step children.

Will update when we get more news!
Stacy

PS - You might want to stop over & wish Anthony a very happy liver anniversary! Anthony celebrates 3 years with a chunk of his daddy's liver tomorrow (Friday, March 9th).

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Wednesday, February 28, 2007

Today marks the two year anniversary of the day that my son received 24% of his paternal grandmother's liver. It's hard to believe that two years ago, we had a very sick, very yellow little boy. This was taken on 02/14 of that year - 2 weeks prior to his transplant. He was so yellow, puny looking, and had the biggest ol' belly.



On February 23rd, our transplant coordinator called and said "Stacy, if Grandma's a match, we'll do the transplant on Monday the 28th". Well, please remember, February has 28 days - so March dates coincide perfectly with February. So, I calmly replied, "Oh Penny, that's great - March 28th will be perfect. It still gives us about a month to wait, and it will give us time to get ready if we do have to do living donor."

I'm not sure how many times she had to tell me, no, it was February 28th she was referring to - only 5 days away! I remember calling Randy, who called his parents. They were already headed to Kansas City so that we could travel on Thursday to St. Louis for Grandma's donor evaluation.

The next few days are a blur - I remember getting a call on Friday night at 5 p.m. saying "Grandma's a match!". We spent the weekend locating an apartment to rent for a month, getting food, and getting everyone settled in. My dad, Grandpa Elmer, our nanny, Ashley, and Morgan all drove over on Sunday. Aunt Sherry flew in - and Great Uncle Alfred and Aunt Mary Lou traveled in as well.

The transplant itself went well with very few complications. Tanner was inpatient for 10 days - Grandma for 5 days. And, the amazing thing was how much better Tanner felt after the transplant. When we came "home" to the rented apartment, it was Grandma and I. But, Grandma was post-op, too. I was exhausted feeding the little boy who's food intake more than doubled and who wanted to play ALL DAY LONG.



We were blessed by beautiful March weather. Tanner, Grandma, and I would venture to the little downtown of Kirkwood on days that we didn't have appointments at clinic. The little downtown area was full of stores that we would browse and enjoy for a few hours at a time.

It seemed like forever before we were "released" to go home to Kansas City, but in reality, it was only a little over 3-1/2 weeks after his transplant. It was Good Friday, and I couldn't think of a better holiday to be sent home considering Tanner's recent "rebirth".




Last year at this time, we held a huge Mardi Gras party to say thank you to everyone and to celebrate a year of wonderful health.



This year, we are celebrating quietly. Grandma was here last week to celebrate and watch the kids while mommy was away. Tomorrow, Tanner & Morgan are taking Oreo cookies to daycare (egg free - God Bless the Oreo Cookie Man) & we'll go out to dinner.



And, the neatest part about it all - is that when we go out tomorrow, it's our secret why. When Tanner was so sick, it was painfully obvious that the boy needed help. Today, I have a "healthy" little boy. No one can tell by looking at him how sick he is - and for that, we are truly grateful.

Thank you, Grandma.

---

Sunday, February 25, 2007 2:37 PM CST

Well, Tanner is feeling SO much better. In fact, last night, he felt so good we couldn't get him to sleep. We put them down around their normal bed time of 7:30. At 11:00, he was still talking & singing to himself! I think he stayed awake longer than most of the adults in the household.

Grandma & Grandpa Z headed back to Colby after a week at our house. The kids have been very sad with them gone. It's always difficult when they stay for a long time because the kids just don't understand why they can't be around longer.

I did end up making my business trip to Baltimore. It was a good trip, and we got a lot of stuff done. Thankfully, I felt much better on Monday. We're still hoping that Morgan doesn't come down with it (incubation is up to 14 days). She's been acting a little funny, so we are crossing our fingers for now.

Wednesday is the 2 year anniversary of Tanner & Grandma's liver transplant. We really haven't done anything special this year. We had dinner at Red Robin with Grandma & Grandpa on Thursday night. Tanner & Morgan will take cookies to daycare on Wednesday to celebrate, and we'll probably go out for a special dinner (which to the twins means McDonalds).

It's hard to imagine that two years ago, Tanner was so sick and had so little energy, when we couldn't get the whipper snapper to sleep last night. Oh, but more to come on that later in the week.

Tanner had a repeat set of labs on Friday of last week. His liver labs looked wonderful, as did his White Blood Cell counts. His electrolytes were back within normal limits. Overall, things looked much better. We're still waiting on the Prograf level. Hopefully, no more labs until mid-March when we go back for our rescheduled trip to St. Louis.

Check back on Wednesday for a new update!
Stacy

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Sunday, February 18, 2007 8:35 PM CST

************NEW PHOTOS ON THE PHOTO PAGE****************

Well, Tanner has managed to stay home for about 24 hours now. We are really pushing him to keep going. He really appears to be feeling much better (he had time-out 3x in 30 minutes tonight!), the diaherra is slowly resolving, and he's looking better every day.

I really think the hospital staff were reluctant to send us home on Saturday night. Randy & I were somewhat questionable, but they had kids with C-Diff, RSV, and Roto all on the same floor (and those are only the ones that we knew off!). We really didn't want to risk exposing him to something worse than he already had.

Our real struggle right now is getting him to drink fluids. He's supposed to drink a bare minimum of about 24 ounces/day (they'd prefer if he drank 30 - 34 ounces/day), and quite honestly, we got about 16 down him in the last 24 hours. He's still urinating and having wet diapers every 4 - 6 hours, so we'll continue to push the fluids.

And, we are pulling out all the tricks on this one, too. I've bought popsicles, freezer pops, juice boxes, 13 flavors of juice (not quite, but it sure seems like it), offered him his choice of pop (he doesnt' seem to like carbonation), salty snacks, and plain out bribery. And, for all of that, we got 16 ounces today. Hopefully as he feels better, he'll up his fluid intake.

Our hospital stay had it's goods and bads. We were chastised multiple times for bringing a "medically challenging child" to a satellite hospital. On Thursday night, they kept saying they were going to transfer us to the main Children's Hospital downtown where they would have others available for consult (GI).

There are tnree reasons I didn't like this. One - Tanner's care is not overseen by the GI/transplant team at Children's. I didn't want them trying to override anything that St. Louis said or wanted. Two - they wanted to transport him by ambulance. Why would the insurance pay to transport him in an ambulance? I thought that would have been irresponsible consumerism on my part. So, I told them if they wanted to transfer him, it would be done by my car. Strangely, they "found" a bed for him in the South hospital. Three (and maybe this is totally my denial) - this was the case of a child with a medical history who happened to have Rotovirus. His liver was fine the entire time (we had labs to prove it!) - they were not treating his liver, they were treating his dehydration (and an ear infection).

St. Louis handled all of Tanner's concern. Basically, his Prograf level was high. When Tanner gets diaherra, his Prograf level goes up, and a high level of Prograf gives you diaherra. Viscious circle, huh? Tanner's Prograf on Thursday was at 14.6 - they want it between 5 - 7. So, until his stools go back to normal, he'll be on 1/2 doses. We'll probably have to repeat labs next week sometime.

Otherwise, the floor doctors were great. They communciated well with St. Louis (at least from our perspective), and they listened to us and respected our wishes as a parent. The nurses were good, too. Our other main problem - FOOD.

This was the first time we have been inpatient since the diagnosis of Tanner's egg allergy. I have a whole new respect for Lisa, Aiden's mom; Tammy, Janna's mom; Angie, Emma's mom; and all of our other allergy friends. With his egg allergy and the fact that he was under 3 (which meant that about 50f the foods were choking hazards and he wasn't eligible to get them), Tanner could have: Applesauce, Banana, Cheese or Pepperoni Pizza, Oreos, or a hamburger patty. Fruit cocktail - choking hazard. White bread - egg allergy. Chicken nuggets and fish sticks - Egg allergy.

Ok, so all of my egg allergy friends are going - what? bread doesn't have egg in it. No, it doesn't. Usually, chicken nuggets, and fish sticks don't either. They even called the main campus and confirmed that the bread was egg free. Yet, the south campus would not feed it to him for allergy reasons. It took 2 hours and a dietician to get food for Tanner on Friday night, and we finally had a nurse go down and get Tanner's food on Saturday because it was so difficult to deal with. Next time we will either NOT list his food allergies, or we will bring all of his food from home. It was truly one of the most frustrating hospital experiences I have ever had. And, after 90 days inpatient with Tanner & Morgan in 2004/2005 - that says a lot!

But, we are home. We have one full night of sleep under our belts, and our son is diving off the stairs and leaping between pieces of furniture. So, we are feeling hopefully that he is fully on the road to recovery.

The bad news is that I came down with the stomach bug this afternoon. I'm pumping my body full of Pepto, and hope to be able to leave for my work trip sometime tomorrow. Only time will tell on this one.

We are really trying to be cautious in our house right now and keep everyone else free of this virus. The good news is that for adults, it's usually an upset stomach with some diaherra. For kids - it's vomitting and multiple days of diaherra. We really do not want Morgan to get this.

That's our poopy update. Please keep us in your prayers for health the next few days, and no more hospitilizations for awhile. It was a good, enjoyable run out of the hospital.

Stacy

---

Friday, February 16, 2007 9:43 AM CST

Tanner went inpatient last night due to dehyrdation. They think he may have rotovirus. They have been pumping him with fluids and potassium for the last 14 hours, ane he is starting to feel better. As soon as he starts to eat & drink more, they thought he could come home.

His Prograf level is also very high (14.6 compared to the 5- 7 they want it to run). We'll probably have to tinker with that dose as well the next few days.

We were told that if it is rotovirus, anyone exposed to Tanner could come down with it in the next 7 - 14 days. So, we're hoping the rest will avoid it - but we just won't know for awhile.

Please keep Tanner in your thoughts & prayers.

---

Tuesday, February 13, 2007 12:35 AM CST

Change of plans...

Well, the best laid plans...and then it all went downhill. Tanner started throwing up yesterday morning. He does that sometimes when he coughs too much, so that's what we thought it was. Then, daycare called around 10 a.m. When I got there, they say "yeah, it's been going around". Well, geesh, think you could have warned us!?!?

He continued to throw up and have diaherra all day. By 5 p.m., he was dry heaving and hadn't been able to keep down water or any food all day long. By 7:30, we were seriously worried. So, we ended up taking him to urgent care at 8 p.m. and getting him tanked up on fluids and some Zofran for the nausea. He's a little better today - although he's still throwing up some. The poor little guy is just out of gas, and only wants to lay around and cuddle. Hopefully he'll do better today and we won't have a repeat of last night's trip (which would probably earn us a hospital stay).

However, the diaherra and dehyrdation would throw off the kidney test that is scheduled for Friday. No sense in doing it if it would skew the numbers, and Randy & I are pretty sure that one of the other family members will inevitably end up with the bug (who's guessig Mommy right before - or after - she leaves for her business trip to Baltimore?). We really don't want to drive the 5 hours across state with one (or two or three) sick people. We'll reschedule for sometime in March / April.

Please keep our little guy in your prayers that he starts feeling better soon (and that the rest of us manage to avoid this bug).

Stacy

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Sunday, February 4, 2007 10:54 AM CST

My husband informs me that we need an update...I'll do my best.

Whenever I have to travel - life seems to accelerate full speed and very little seems to get done in our household. To say the least, we've focused on the bare minimums the last few weeks. I'm finishing the laundry now, as I fly out again tomorrow morning for a 2 day stay in Denver. This is after 4 days in Dallas last week, and an upcoming 4-1/2 day trip to Baltimore at the end of the month. To say the least, I'm anxious for February to be over.

And, in between all the traveling for work - we'll head to St. Louis in about a week and a half for Tanner's annual check-up. He will have about a 5 hour test run the one day - and during that time, we'll also have his clinic appointment. This will monitor his kidney function. Yep - transplant gives you a whole new set of worries. His liver is doing well - but the Prograf which keeps him from rejecting his liver, is toxic to the kidneys. Therefore it's very important to monitor kidney function.

Our best news saved for last - we're going to Disney! I had a chance to go to Disney for work - so Randy & I explored the idea of going as a family & spending a couple of days at the end for a mini vacation. That was quickly nixed when we realized my work trip was during the middle of peak tourist season - and if we waited until mid-April, we could go for a full week for the price of a few days. So, we booked a trip in mid-April. We're staying at Animal Kingdom Lodge - and we're looking forward to the trip. The kids are under 3 - so we don't have to pay for their tickets - another reason we chose to go ahead and do the trip now vs. waiting for this fall.

In medical news...well, really, we don't have any. Morgan has been on her Extendryl to relive her upper nasal congestion - and with that under control, she hasn't needed any breathing treatments for about 4 weeks now. Tanner has a cold right now, but it seems to be getting better. Next set of labs will be when we visit St. Louis next week.

We're experiencing really cold weather. This means the kids haven't gotten outside to run and play for over 10 days now. It's really showing in their attitude & energy level (and mom & daddy's patience level).

That's about it for now - since I've been gone, we haven't taken too many pictures. So, I've only updated the main picture. Ironically, about 5 minutes after this picture was taken, they were wrestling and fighting on the floor.

Stay warm!
Stacy

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Sunday, January 21, 2007 9:39 PM CST

Well, hopefully a quiet week.

I've had the flu bug for the last few days, and I've tried to be very careful about not exposing the kids. So far, they seem ok - but I know we aren't out of the woods yet.

Tanner's liver labs came back pretty good - a little higher than a month ago, but only a few points, and still well within normal limits. His Prograf level was a tad high at 8.7 - but we didn't get a call to lower it. Next set of labs won't be until his annual check-up on 02/16.

I meet this week with the school district to talk about future therapy. It will be the first of several meetings. I'm anxious to see what our options are...

We got some more snow this week - and the kids enjoyed going outside to play in the snow. They made their first snow angels - and a miniature snowman. Tanner got especially tickled when he knocked the snowman over (see top picture).

I fly out Sunday for Dalls for the AHR convention. I'll be gone for 4 full days - but ever faithful Grandpa Three Hairs will make the trip down to cover while I'm out. We hate making him come down so close to his last trip - but the help is appreciated, and the kids get such a kick out of having Grandpa here.

And, finally, for you viewing pleasure - here is a video of Tanner dancing this past week. We picked up a link to a video of a Hippo singing "The Lion Sleeps Tonight" - and it has a dog that dances through it, too. In the middle of the video, you'll hear Tanner say "Look - A Dog! Right There!" - and the continue with his "white boy can't dance" routine. Randy & I got a good laugh out of this - and hope you will, too.



Have a great week!
Stacy

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Monday, January 15, 2007 9:50 PM CST

Well, we made it through the weekend without Daddy. The kids were even spoiled when Grandpa 3 Hairs came down to visit. And, to top it all off, we had a small spell of nasty, icy roads - so they stayed home from school on Friday with Mommy & Grandpa. What a treat! I think the kids enjoyed the chance to play at home and go absolutely nowhere for 2 days. We don't do that very often.

Daddy came home on Saturday night - and by Sunday morning, it was back to our usual pace. We had errands to run - so we hit the town and make a quick trip before the yucky weather set in again.

Morgan had her asthma appointment last week. All seems to have gone well. Her new meds are helping, and we haven't done as many breathing treatments. In fact, since she's gotten over her latest cold, we haven't done a breathing treatment in almost 10 days. The doctor also switched us to a metered dose inhaler (the little cans) instead of the large nebulizer machine. Much more convenient, but I'm not sure how much Morgan will freak when we have to use it. We will see.

Tanner had labs this morning. No news to report on them yet - which I hope means everything was fine. If all is well, his next set of labs will be in St. Louis for his 2 Year Anniversary Check-Up in mid-February. He will have an IV placed, so they will draw labs when they do that.

I did finally get a copy of the egg white labs that we had run shortly after his egg challenge in November. I asked our pediatrician to re-run the RAST to see if the exposure had caused his numbers to spike. He was non-reactive twice (in September & October - being less the 0.35) - and after the food challenge his level was 2.5 in November. Not as high as last February when we initially ran the test (3.52), but still high enough to realize that the egg thing is here to stay for awhile longer. And, it shows up in the weirdest places - my mom sent suckers down with Grandpa last weekend - they had eggs in them! Who would have guessed?

This week is hopefully a calm week. Randy & I are both playing catch-up at work (me out with the snow & Randy out with the conference).

This month, Tanner is finishing up some testing by the Infant Toddler program here. He will still be under their services until his birthday, but we will start a transition period over to the School District soon. We don't know how this will affect him - or the preschool setup, but I am somewhat anxious about it. I'm pretty sure that Tanner will qualify on speech (he understands what you are saying - and he talks alot, he just isn't understandable), and I'm not sure on the physical / occupational therapy. He still has strength issues which will need to be assessed (can't step up a curb without help, jump unassisted, etc).

Will update when we get labs. Stay warm & safe!
Stacy

******************************************************

Each year, the American Liver Foundation benefits from the "Run for Research". In conjunction with the Boston Marathon, runners train for the marathon and are matched with a person who's live is affected by liver disease.

This year, Tanner has been matched with not one, but two runners - Rebecca Sargent (http://www.active.com/donate/liverteam07/RSargen1) and Briane Meade (http://www.active.com/donate/liverteam07/BMEADE1). This couple is training together - as they not only prepare for the race - but for their wedding this fall. Their goal is to raise $6000 for liver research.

Randy & I's goal in supporting the ALF is that one day the cause - and then the cure of Biliary Atresia is found. Our family is participating in a Biliary Atresia study that is funded by the ALF. We hope that one day - other families will not have to go through what we have been through these last 2-1/2 years.

*********************************************************

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Sunday, January 7, 2007 5:04 PM CST

I was just going back through some of our photo archives and I'm shocked at how much the kids have changed in a year.

Morgan - One year ago & then today










Tanner - 1 year ago & today








It amazes me where they are today vs. where they were a year ago. We have hair now! I couldn't have imagined a year ago that our daily routine would include picking out which barettes Morgan wants to wear - but it's the biggest obstacle in getting dressed each day.

The growth chart shows that they are both around the 36" mark. Tanner has had a recent growth spurt and is nearly the same height has Morgan. Weight wise, they are yo-yoing around the 26 pound mark. They'll get sick and drop down to 25 (Tanner hit 24#10 oz a week ago with his bad congestion) - and then bounce quickly back up to the 26 pound mark. This puts Tanner at 10or weight & 25or height - for his REAL age. (May not sound like much - but he's just recently hit the growth chart - my preemie friends will understand). Morgan is at about 15or weight & 40or height.

Tanner is finally outgrowing our 18 - 24 month clothes. Yes, the kids are almost 3, and they can still wear some of the 18 - 24 month pants, but for the most part, they are in 2T or even 3T tops. This will be the last wearing for Tanner's "Safari" outfit (he dearly loves it because of the animals) as it's become flood-water wear.

Developmentally - I think the kids are doing ok. Tanner is still delayed some on fine motor & gross motor skills (has a hard time walking up stairs or curbs and can't catch a ball yet), but definitely progressing. He's making big progress in speech. Morgan seems to be caught up in all areas. They are getting full developmental assessments at preschool this month - and we should have a full report at the end of the month.

Tanner still currently has PT/OT & Speech Therapy through the Infant-Toddler program. That will move over to the school district at Age 3 - and we'll begin that transfer process in mid-February. I had hoped by that time he'd be caught up, but I really doubt it. I'm anxious to see what the school district will do - and how that will interact with his current preschool. It is possible that he may have to go to the school district's "preschool"/therapy program.

Overall - it has been a good year. Neither child has been hospitalized, and Tanner's liver continues to do well. He'll have a full-blown follow-up appointment in mid-February. Ironically, we really aren't anxious about the appointment, but excited to go to St. Louis, see all of the doctors and nurses, and enjoy a mini-vacation. I hope all of our future appointments are so anticipated.

We are hoping for an uneventul 2007. We like to keep it simple in our household.

Coming up this week:
01/10 - Tanner has speech therapy
01/11 - Morgan has a follow-up astham appointment
01/11 - 01/13 - Mommy has the kids alone - Daddy is out of town (PARTY!)

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Friday, December 29, 2006 10:20 PM CST

While Randy & I have spent the majority of this week accomplishing projects around the house, we wanted to make sure we took time to do something special with the kids, too. We don't get a lot of time off, and it's difficult to make the time to do that "something special" during the regular week when errands like grocery shopping and cleaning up fill all of the hours not occupied by work, sleeping, and meal times.

So, this afternoon, we took the kids out of school after their nap time and headed to downtown Kansas City. We went to Crown Center to see somethings that we had missed out in our previous trips.

Our trip actually started with a very unique run-in. We ran into a couple (and their twins) that we were in a mutliples birthing class with - about 3 years ago. We haven't seen them since, and it was so neat to be able to see their kids and catch up.

We started out by touring the Hallmark Visitor's Center. This was really cool - and the kids enjoyed it some, but it would be a great thing to do without 2-1/2 year olds tugging at your pant legs. We made a whirlwind trip of it - and they were rewarded with a new (free) book at the end.

We were disappointed that Kaleidescope was already closed - here they help you do art projects with your kids and leftover items from the Hallmark manufacturing process. How cool is that? We'll put it on the list for next time.

Then, we headed back inside for our real mission - to see Santa's Crayola land. Yes, Santa was gone, but it didn't seem to deter our kids one bit. In fact, the big guy in the red suit probably would have only terrified them. And, when we tried to go the last two weekends, the wait was HOURS long.

So, while Santa is gone, the elves will slide....



Crawl through tunnels...



Play in your Crayola House...







And do silly things in the funny mirrors...




I'm not kidding when I say we drug them out of there kicking & screaming. But, it was all for a good cause, because we went to eat at Fritz's. Now, I've heard of this place before and that it was a great place to eat at with kids. And now I know, Fritz's is made for kids.

At Fritz's, you order your food by telephone, and then this little train



hauls your food from the kitchen out to your table. When it reaches your table, there is a little arm that drops down and holds that white tray of food onto a little lift:



The lift then lowers the white tray of food down to your table. Causing little children's faces to light up like this:



And this:



The food - well, it pretty much stunk. But, really, a place like this doesn't rely on good food for repeat customers. On our way out, we checked out the Gingerbread House / train set, too.





We had a near repeat of the McDonald's incident, but Mommy bribed the girl with some candy, so no accidents to report this time around. We ended our stay at Crown Center with a ride up two sets of escalators.

Finally, on the way home, we made a small detour. If you'll remember our visit to the see Santa's train a few weeks ago



- we always thought it would look neat all lit up, but had no idea it would be this neat. This is just the engine - there were five other cars, too!



These are the days we enjoy ~ and I guess they are so enjoyable because they are exactly that ~ something special.

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Sunday, December 24, 2006 1:40 PM CST

Merry Christmas, everyone!

We've had a busy few weekends. Last weekend we went down to Union Station here in Kansas City, and let the kids see Santa's train. Tanner & Morgan both LOVE trains, so they had so much fun seeing Santa's train. We were really excited when we got inside and found a huge miniature train set. Randy says it is about 30' x 50' - and it had 22 miniature trains on it. The kids loved it so much (see pictures on pictures page).

Watching the kids down there was just so much fun. Their faces were so animated as the trains made their way around the track - they'd jump with joy - Tanner stretching out his arms as they trains went by. This is experiencing Christmas through the eyes of a child.

And, we may officially be ready for Christmas. Randy & I delivered goodie plates to all of our neighbors this afternoon, the gifts are wrapped, and we picked up dinner from Boston Market, Honey-Baked Ham, and the Cheesecake Factory.

Yes, I'll admit it - I go the easy route and pick up meals at the local restaraunts. Why? The year the kids were first born, I cooked a huge elaborate meal. Between making shopping lists, shopping, prepping all day on the 24th, and spending almost all of the morning in the kitchen - I didn't enjoy the hoiday much at all. I want to sit down and play with my kids when they open their presents - not slave in the kitchen. And, trust, me - it'll be a great meal.

This afternoon, we're going to a live nativity on a nearby historical farmstead, then we'll go to mass this evening, and finally come home and open up two gifts - a new book & new pajamas (which I'm hoping will be a new family tradition). I explained this to Morgan today, but told her that she'd get to open two gifts if she was really good at church. She looked at me and said, "no, Mommy, FIVE!"

May you all have a wonderful Christmas & a safe & happy New Year.

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Tuesday, December 19, 2006 7:22 PM CST

In case you weren't in the holiday spirit yet, this should do the trick:





And, to top it all off, Tanner had labs this week. They are his best set of labs to date. For our liver friends - the numbers are:

AST - 36
ALT - 18
GGT - 10
Alk Phos - 277
Total Bili - 0.7 (a little high, but he has a virus)
Tacro - 4.2

I'll take that as a Christmas gift any day.

On the down side, both kids have a nasty virus. They are coughing, hacking, running low grade fevers (it peaks around 102), and not feeling very good. Morgan was home all day - we were called to pick Tanner up around 3 p.m. They'll get a quick check at the pediatirican's tomorrow morning.

What are the odds that Randy & I will come down with it in the next 3 days - right before we begin our 10 days off for Christmas?

Yeah...I thought so, too...

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Friday, December 15, 2006 9:04 PM CST

Possibly the best Christmas gift this year

We went to Sam's Club tonight to pick up supplies for a cookie-fest bake-a-thon that we have every year. One unique thing about Sam's Club is that they have room in their cart for two kids to sit side-by-side.

At check-out, Tanner & Morgan were tickling each other - hugging and being fairly good. The cashier and nearby shoppers were laughing and commenting on them, and Randy & I were giving our usual "rhetorical":

"you want, you can have them!"

"twice the trouble"

"a lot of work"

The cashier looked at us, and said, "well, look at the bright side, at least their healthy."

Yes, yes they are.

And, with that, I'm officially in the holiday spirit. Merry Christmas!

---

Sunday, December 10, 2006 9:09 PM CST

The cuteness is astounding, huh?

We're back from a quick trip to Iowa to make-up for the missed Thanksgiving trip. Traveling with a potty-training toddler - not fun!

On the way up, we picked the kids up from daycare right before nap time, and headed north. Our mistake - we gave them their sippy cups when we got in the car. Morgan downed most of the 10 ounces, and then fell asleep. She was asleep when we hit Cameron (our normal stopping place & about 1/2 way), so we decided to try to make it another 40 miles. 10 miles before that stop - she was awake & wet.

Ok - not a big deal, we knew this was a possibility, and we were prepared with a piddle pad (handy dandy little pad you put in their car seat to absorb the wet without having to change the whole car seat). We stopped at McDonald's, and I took Morgan to the Women's Bathroom.

Here is where I have to apologize to the poor soul that has to clean the bathrooms at the McDonald's in Bethany. You see, my daughter is MY child. She was terrified of this public bathroom, and besides writing in pain, she kept proclaiming "I don't have to go to the bathroom".

So, I took off her shoes, her pants, and her soggy underwear. I turn around to grab her dry clothes, and notice she is starting to dribble pee on the floor. So, I pick her up and swoop her onto the toilet.

She is screaming, and with each scream, comes a stream - at a 90 degree angle. I had no idea girls could pee at that angle - let's just say I still have some speed & agility left in my old age & I managed to avoid being pegged.

At this point, we have urine in the corner from the undressing, underneath the wet clothes that I dropped when she started dribbling on the floor, and in front of the toilet from the 90 degree stream. I assume she's all done. And, she says she is, so I find the last remaining dry corner in the stall, and I put her in it.

And, she starts peeing down her leg AGAIN. I swoop her again onto the potty, precariously balancing and doing Twister-like maneuvers to keep myself, my purse, and the diaper bag dry. Finally, success without a riot.

It then takes me 10 minutes to unroll toilet paper and swab what I can off of the floor. Of course, it's one of those locations where they don't have papertowels.

So, floor cleaner at the Bethany McDonald's - I'm very sorry for the mess we left behind. I now truly understand why public restrooms look the way they do sometimes.



After we got to Iowa, all went well. We had a good time - the kids played with Play-Doh, got to color with Grandma, make cookies & decorate them with Mommy & Grandma, and even were allowed to open one gift. They are now very excited for Christmas to get here. We also got to spend a brief few hours with Cousin Katelynn - I think she's a bit overwhelmed that the twins can now talk back and are a bit more aggressive.

Remind me to tell the bat story sometime....

The ride home was much more eventful. But, we still continue our potty training endeavors. Morgan has had a small problem with pooping since she's started potty training. She just isn't. The first time, she went 5 days, and now she is pooping, but she's extremely embarrassed by it. Tonight was the first time she pooped in the potty - and we had to cover her head with a towel to get her to do that. Strange, strange child.



Morgan's medicines do seem to be helping with the asthma. We've doing the breathing treatments less frequently, and she definitely feels better. Tanner is doing well - we'll get labs again next week.

Have a great week!

---

Sunday, December 3, 2006 8:50 PM CST

What a week!

As planned, I left for Las Vegas first thing on Tuesday morning. At least for me, the week went off as planned. The trade show went well, and I managed to avoid the winter storm.

And, I got to see my cousin and her beautiful baby boy, Isaac. It was so good to get to see her. And, I just can't believe how good Isaac is - she is defintely spoiled with a good baby (and cute, did I mention that?). I'm also gloating a little since I got to see him before many of our other family members did.

But, things didn't go so well here at home. Grandpa came down on Tuesday night, and when things got rolling on Wednesday morning, Morgan had a 104 F. This is the 4th 104 fever in about 10 days. One of Tanner's therapists had mentioned the possibilitiy of a bacterial pneumonia to me - so, we pressed to have her tested for that. Sure enough - she's had pneumonia this whole time - something that wasn't contagious (which is what kept us away from our family back at Thanksgiving).

Then, Randy took her to an asthma doctor the next day (through the blowing snow and all). The doctor feels that Morgan probably has mild to moderate astham - although an officially diagnosis can't be made until she's between ages 5 - 7. The doctor thinks that a lot of Morgan's problems start as upper respiratory and migrate into her chest. So, we've added an extra medication (Extendryl) to help dry her upper airways up. So far, it seems to be helping as we've only given her one breathing treatment since she started the new meds.

Now, Grandpa ended up on more Grandpa duty than we had originally intended. He stayed home with Morgan on Wednesday and rocked her most of the day. And, he had both of the kids most of the day on Thursday (due to the ice storm). Randy is convinced that he's lost at least one hair dealing with the both of them - so, we'll now have to refer to him as Grandpa Two Hairs.

Morgan finally made it to daycare on Friday. When I got there to pick them up, the daycare provider asked me to bring her in panties on Monday. Morgan made it to the potty all day on Friday - and would take off her diaper and throw it in the trash before they could catch her. So, she went through 8 diapers in one day!

We worked with her this weekend, and she seems to be doing well with the potty part - but we haven't had much success with #2. She'll go to daycare in panties tomorrow. We really hadn't intended on her potty training yet, but we're excited for her and our checkbook.

Next weekend, we'll head back to Iowa to make-up for missing Thanksgiving. We'll be decorating cookies for the kid's Christmas party and seeing cousin Katelynn. Hopefully, everyone remains healthy until then.

Stacy

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Sunday, November 26, 2006 9:21 PM CST

Well, the Thanksgiving Holiday has come and gone, and once again, the kids have foiled our plans.

Morgan has been sick the last week and a half - so sick that she only made one day of daycare in the last week & a half. It started with a mysterious fever, followed with pink eye, and then the mysterious fever returned for a 4 day stay. At one time, we were convinced it was a Urinary Tract Infection ("mommy, my back hurts" & "it hurts when I potty"), but a trip to urgent care cleared that one up.

Her fever broke late Tuesday night, so we headed to Iowa for T-giving on Wednesday. However, her fever returned late Wednesday, and it was 104 early Thursday a.m. We were told by the Urgent Care Staff that she was "highly" contagious, so we hurriedly packed and headed back to Kansas. My grandparents are very old & frail - and a virus like that probably would have landed one of them in the hospital if not worse.

Now, that meant a lot of sad things - we didn't get to enjoy a wonderful feast prepared by mom, see my cousin Seth & his kids (whom we haven't seen in a 1-1/2 years), any other extended family, or celebrate Christmas with my siblings. So, it was a bummer to say the least.

We did take the time to do a few family things. We finished up some of the Christmas decorations, made cookies with the egg replacer Grandma Crazy found for us (note these are Tanner's first chocolate chip cookies!):





And, we went to one of the local parks:





Tanner also had labs last week. We used our pediatirican's office since our favorite phlebotomist has moved to Texas. It went well, and his liver is very happy. So, no changes on that front. We're working on getting his big appointment set up in February.

This week, we have quite a bit in store. I'm headed to Las Vegas for work for the week. Grandpa 3 Hairs is coming into town to help Randy out while I am gone. Tanner has speech therapy, and Morgan has a doctor appointment. Since daycare, she has been getting 1 - 3 albuterol treatments each day. She is constantly congested. So, we are taking her to an asthma / allergy doctor to see if we should be doing something else. Unfortunately, the doctor's only appointment this year was this week - so, Randy is taking Morgan while I am gone.

And, finally, my belated Thanksgiving post:

Taking the lead from Lisa and Laurie, a photo essay on the things I'm thankful for:

My husband, Randy - who has stood with me through thick & thin (quite literally), a lot of really tough times, but some pretty incredible times, too...



For these two women who have let down their hair and embraced childhood...





For these two men who have shown my children more love, patience, and compassion than I ever thought they could...





For this...the fact that he is healthy enough that I have to discipline him like I'd discipline any other child.



For this attitude...which has taught me patience and an appreciation for the terror I must have put my parents through...



For this smile...



And this smile...



For the fact that they always will have each other to lean on...





And, the fact that they have a built in best friend...






To all of our family & friends - both real & "online" - I hope you had a wonderful Thanksgiving.

---

Monday, November 13, 2006 8:35 PM CST

Things are going well here...we're recovering from the egg challenege and adapting. The more research I've done, the more I think that Tanner may never outgrow this allergy. For those of our non-medical readers - skip down....

For our medical family and friends - all of the reading I've done says that Prograf increases the permeability of the intestinal tract. This means that when the food hits the digestion system, more allergens are allowed to cross that membrane, and trigger the higher allergic reaction. As long as he is on Prograf, this will continue to happen and I don't see it changing until Tanner is off Prograf (or it is at a very minimal dosing).

OKAY - NON MEDICAL READERS CAN PICK BACK UP HERE!

We're gearing up for the holiday season. We're going to spend the majority of the Thanksgiving break with my parents - and aren't going to be home. The following week, I'll be in Las Vegas for work. That means, I wouldn't be able to decorate for Christmas until the 2nd weekend of December.


That is completely unacceptable (I blame this trait on my mother, who also decorate for Christmas very ealy)! So, we're decorating for Christmas now. We put the outside lights a few weeks ago while Grandma Z was here. A few finishing touches, and those will be ready to go. We got a new Christmas tree for upstairs - a gorgeous 9' pre-lit tree. It is up & decorted - and I now have my "star" tree that I've always wanted.

The kids are LOVING the Christmas tree. Every morning, they come upstairs and say "oh, pretty Christmas tree" - they take turns turning on the lights and fight over who is going to get to sit by the tree. We put Candy Canes on the tree tonight, and they had so much fun.

This upcoming weekend we'll put up the downstairs "family" tree (without breakables) and the kids will have a much more active roll in decorating the tree.

The kid's pictures have been taken - although I have procrastinated on ordering our holiday cards yet. I keep thinking I'll catch a great picture of them together, but not quite yet. The one above wouldn't be too bad if it weren't for the stains all over Tanner's shirt.

My shopping is nearly done (yay!), and all I really need to do is wrap up the gifts and do some good cleaning. I'm anxious to have everything "finished up" so that I can sit back and enjoy all the fun things that December has to do with the kids. The kids are at such a perfect age for enjoying the holiday season.

More pictures and updates soon!
Stacy

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Saturday, November 11, 2006 11:29 PM CST

A quick addition to my last post (see Journal History) - I finally got the picture of Tanner's hives from the pediatrician's office this weekend. Here it is:



Keep in mind - by this time, things were looking pretty darn good - he had had Benadryl on board for about an hour.

You can see how red his ear is, his nose, & eyebrows - and the various hives over his belly. This picture doesn't portray that his belly was actually distended a bit, nor the hives on his back, diaper area, legs, or bottoms of his feet.


A prayer request - please keep the family of Jackson & Dillon in your prayers. Both of these little guys were about 7 - 8 months old and have passed away in the last week while waiting for a liver transplant. My heart aches for their families and the loss of these beautiful little boys.

---

Friday, November 3, 2006 8:54 PM CST

Yesterday was a big day for us, well, for Tanner.

The last two month's labs have shown that Tanner's egg allergy had resolved. We were so excited - we've been battling the egg allergy since the kids were about 15 months old.

Now, food allergies are an interesting thing. I think they may actually be worse than the Tanner having a liver transplant. Yes, there are day-to-day things that people around Tanner need to do to help ensure his health & safety with a transplant. But, Randy & I are in control of most of those (medications) - and there is little that a person can do that will pose immediate harm on him (as far as his liver is concerned).

But, food allergies are a whole different beast. Someone can walk up & offer your kid a cookie. Think of all the times you've gone to your local grocery store or warehouse club and they hand out food samples. You send them to school - and parents bring in "special treats". You have no control over it - and at this point, Tanner isn't old enough to understand or know what contains eggs. And, it isn't easy to judge - many adults don't even know what contains eggs and what doesn't.

Breads - not typically
Marshmallows - sometimes
Cookies - usually "soft" cookies do (like chocolate chip ones)
Salad Dressing & Dipping Sauces - oftentimes
Pizza Hut Pizza Sauce - yes (but the crust doesn't!)

So, when the blood test came back that Tanner was negative to eggs. I was so hopeful. We scheduled a food challenge for Thursday.

So, we went to the allergist yesterday - scrambled egg in hand. The first thing they did was inspect Tanner head to foot for any rashes prior to the test (interestingly enough - the only thing they found was a bite mark. I'm guessing from his sister...hmmm....) Then, it took about 20 minutes to get an IV started. This was the worst I've ever witnessed as far as IV starts for Tanner. He was screaming, tongue curling, tears streaking down his cheeks - all the while looking at me like "Mommy, aren't you going to help me?" As any of our other medical parents know - not being able to "save" your child is one of the worst feelings as a parent. And, then finally, they slowly started to feed him the egg.

And, he loved the egg. There was a little styrofoam bowl that they were giving him the egg in - and when it would be empty, he'd hold the bowl up to the nurse and ask "more please" (imagine an Oliver Twist scenario...except with the kid in a diaper only).

A crumb to begin with, then a nibble, a bite, a spoonful, until he had finally finished a whole egg. He had no reactions. After waiting another 2 hours in the office to see if there would be any delayed reaction, we headed out. Tanner to preschool, and mommy to work.

My hope escalated. I started making plans in my head to bake cookies with the kids this weekend. To make pancakes with eggs instead of applesauce. The opportunity to make Christmas Cookeis with grandmas. To be able to eat cake at Aunt Sherry's wedding - instead of having to take the kids out of the room when they serve cake. And my thoughts even turned to an extravagant birthday cake for next year.

Two hours later - daycare called. Tanner had hives from head to foot. Big, angry, red hives with blisters on the top of part of them. They came on within 5 minutes. Thankfully a dose of Benadryl helped to calm them until I could get there and take him to our pediatrician (thankfully within 3 minutes of daycare).

How much did I try to deny that it was the egg? I actually asked the doctor if it could be Hand Foot Mouth Disease - and it just *happened* to coincide with the allergy testing. We went away with a firm diagnosis of hives, a delayed reaction to egg, and a prescription for a hefty dose of Prednisone.

I wanted this burden to be lifted - I didn't want to have to check the label anymore or only go to restaraunts that I know are "safe" for allergic kids. I didn't want to have to worry about taking special food to school - or worrying about the list of birthdays on the wall. Would there be special treats in class? Would Tanner be happy with his oreos - and not whine when everyone else had cake?

I know it's "just an allergy" - and I am so lucky. Tanner's egg allergy is moderate - and he is not currently anaphylaxis to egg product. He is here, and he is really doing very well post-transplant. This is a minor thing to deal with - something that can be managed and dealt with. But, just for once, I wanted that normalcy. I wanted one less thing to differentiate Tanner from the rest of the kids. Something that would allow him to fully participate, and not exclude him.

---

Saturday, October 28, 2006 10:25 PM CDT

It's been a busy, busy week. I was in Denver for work last week - and before you ask, no the snow really wasn't that bad. Yes, there was about 8" of wet, wet snow that came down fast and furiously. But, for the most part, it came and it went, and the roads were fine for the afternoon drive to the airport.

In medical news, Tanner had labs on Friday. Early indication is that his liver is pretty happy with a steady ALT/AST. We're still waiting for his Prograf level. We also pulled some more allergy testing on Friday.

If the egg white allergen and total IgE come back the same or lower than where they were last time, we will do a food challenge with Tanner on Thursday. This requires an IV, and while I'm anxious to have this done, it's scary at the same time. So, please say a prayer for him.

Now, on to an update on my week away. It seems like the kids had a good time while I was gone...here's the story in pictures.

Grandma got here last Thursday. On Friday afternoon, Morgan learned to blow bubbles.



As I mentioned in a previous post, Grandma decided to try potty training. It was a valant effort, but not much success. However, Morgan did make a stinky in the potty late this afternoon - and she was very excited by the whole tube of M&Ms that she earned.



We've talked to the daycare, and they'll continue to work with both kids when they return to school next week.

While I was gone, they had plenty of fun doing the routine stuff with Grandma, including taking baths:




And, when Grandpa got here on Thursday, he was hauling Rufus with him. Rufus is a wooden horse that Aunt Sherry had started for them a LONG time ago. Grandma finished it up, and Grandpa transported him. The kids figured out a way to share the horse. (This is one of my new all time favorite pictures, too.)



I made it home just in time for the school halloween costume party. I'm judging these costumes a success since most people knew what they were supposed to be (especially when they were together).



And, today was really the FUN day for our family. Both sets of Grandparents were here. We started the day at the Deanna Rose Farmstead - a great old farmstead that a neighboring city has set up. It's FREE to the public and very wheelchair friendly. So, it made for a great early morning trip.

Then we came home, and the fun really began. This was Tanner & Morgan's FIRST pumpkin carving. Now, Grandma Crazy Woman (appropriately named) believes in doing things the fun way. And, if you are going to carve pumpkins, you have to get in the spirit. She did so by bringing funky hats for everyone - and a silly ghost that the kids danced with (to the song "I Want Candy").



Then, the fun began. Here is Morgan when she first sees the "guts" of the pumpkin.



Helping Grandma Crazy take out the guts:





All four participants:



Helping Grandma Z:





(Yes, we spent most of the afternoon only seeing Morgan's hat.)

Playing in the pumpkin guts:



Pleased with the results



Tanner & Morgan with their first Jack-O-Laterns:



Happy Halloween!

---

Wednesday, October 18, 2006 8:20 PM CDT

It's fall...and one of my favorite fall foods is caramel apples.

Now, Randy & I are pretty paranoid parents. We both work full time, and quite frankly, we have a hard time keeping up with work, the kids, and general household items - let alone take on some monumental task...like making caramel apples.

Never fear...that's where our neighbors come into play. On Saturday evening, they brought over homemade caramel apples for the kids. And, not just the kind where you buy the pre-made caramel in flat round disk and then wrap it around the apple. The real stuff where you heat up the carmel and then dip the apple into it.

Here are some pictures of the kids enjoying their treats.

Tanner, obviously very excited by the apples:



Tanner, trying to figure out how best to eat the apples.



Morgan, trying the apple



But then deciding, that really, isn't the point of all this just the caramel?



Now, the mistake that we made was giving them the carmel apples after supper. The sugar in these here apples kept the kids bouncing off the walls until after 9 p.m. (their bedtime is around 7 p.m.).

Also notice the new haircuts in these pictures...no more hippie babies.

Grandma Red is headed to Kansas City tonight to spend 11 days with us. We're actually pulling them out of daycare next week to let them spend the week with Grandma while I'm in Denver for work.

This weekend, we have both of our NICU reunions and a monsterous bon fire at the neighbors. It'll be a full Saturday, and that's without all the chores.

It also gives mommy & daddy an opportunity to get everything done that we need to get done that you just can't do when the kid are around. Tops on are list are putting up the outside Christmas lights (really, I'm not kidding), cleaning & waxing the cars, and cleaning out the garage.

The following weekend, all four of the grandparents will be in town. Grandma Crazy wanted to be around for the kid's first pumpkin carving adventer. Grandma Red will still be here - and the Grandpas are acting as chauffers. It should be an interesting day.

And, no, I still don't have the Halloween costumes done. The kids can wear them to one of the NICU reunions on Saturday, so it's high on my list of priorities....

---

Saturday, October 14, 2006 11:15 PM CDT

Well, no final verdict on the egg allergy.

0.36 is still trace positive...(less than 0.35 is considered negative, but apparently that 0.01 is a big difference). With much prodding on our part, we will repeat the labs at the end of the month on 10/27. If the level is similar (or lower), then we will do a food challenge on 11/02. This is a fairly involved thing that includes an IV access for Tanner & 4 hours in the clinic.

The unknown at this point is his Prograf level. At the time of the draw, it was 3.5. That's much lower than St. Louis wants it, so they upped his dose from 0.3 mg two times a day to 0.5 mg two times a day. Prograf is linked to allergies - but no one knows if the dose itself is linked to how strong the allergies are.

Why are we pushing? Mostly because we fed him a product that had egg in it - and he had absolutely no reaction. That, coupled with these lower lab results lead us to believe that it is negative. And, the holidays are around the corner - who doesn't want to bake cookies with their kids or grandkids?

The kids have developed some pretty serious runny noses & coughs this week. Tanner started oozing green stuff out of his nose on Thursday, so we started him on an antibiotic on Friday. We have a well child check-up on Monday. They'll check for an ear infection then. And, Morgan will get her flu shot.

We did get haircuts today (well, Tanner & Morgan did). So, the two hairy little kids you see in these pictures is no longer what they look like. I actually had them use clippers on Tanner's hair. I went in with a toddler & came out with a little boy. I'll try to get up new pictures next weekend.

Otherwise, it's a quiet week. I have one more week at home before I head out to Denver for a week long visit. During my absense, Grandma Red will come out and help Randy with the kids. We're actually pulling them out of daycare that week - and Grandma will be watching them here at the house. I'm sure she will be plenty tired at the end of the week!

We're getting ready for Halloween, too. Remember my oath to not sew Halloween outfits every again - I'm breaking it. But, the outfits this year are much simpler - Pebbles & Bam Bam. I think I can ship them both out in about 2 hours (minus the bone for Morgan's hair).

Have a great week!
Stacy

---

Friday, October 6, 2006 9:19 PM CDT

Ding Dong, the Egg Allergy is Gone!

Well, at least we hope so.

About 2 weeks ago, we stopped at Boston Market and picked up supper. We came home, and fed the "usual" safe (egg free) foods to the kid - turkey breast and macaroni & cheese. As I was cleaning up, I thought "that mac n cheese doesn't look the same as usual". I check the internet and the second ingredient was egg!

But, Tanner never reacted. We went ahead and gave him Benadryl but no reaction. So, we called his allergist and requested a new RAST test. They pulled that last week along with his regular liver labs.

We got the lab results back today...Tanner's total Ige (it measures how reactive his body is to allergens) was 23 (smack dab in the middle of normal range) and his Ige for Eggs was 0.36. Normal is 0.35 - so, I'm taking it that this is basically normal. Contrast this with Febraury when his levels were 87 (total Ige) and 3.52 for Egg.

So, we have an allergist appointment set up for November 2nd. You can have a negative RAST for food, and still be skin positive. So, my guess is that we'll probably due a skin test and a food challenge at that time. Until then, we'll maintain our egg free lifestyle.

I have to admit, I'm a wee bit hopeful, though. Cut-out sugar cookies are one of the things I've wanted to be able to do witih my kids for Christmas - and that just wasn't possible for a kid with an egg allergy. So, we'll keep our fingers crossed and hope for good news in November.

And his liver labs, they looked fine, too. It looks like he's fighting some kind of bug (we kind of knew that based on the snot pouring out of his nose), and we had to increase his Prograf level again. We don't go back for labs until end of October...we may even just stretch it out until his allergy appointment.

---

Sunday, October 1, 2006 10:00 PM CDT

This weekend, the family & I participated in the 1st Walkapooloza here in Kansas City for the American Liver Foundation. We (as a family) were also intereviewed by the local news station & Randy's mother (Tanner's living liver donor) was interviewed by the local talk radio station.

During my short 30 seconds of fame, the message that I wanted to get across to people is that liver disease isn't reserved for people who have drank or done drugs to abuse their body for a lifetime. Liver disease affects people who have lived a healthy life...and it affects innocent children.

This weekend, our team, Liver Families & Friends, walked for the children who are affected by liver disease. These are the faces of liver disease:



Our son, Tanner - Biliary Atresia, Transplanted 02/2005




Janna - Biliary Atresia, Transplant 08/2005



Alexander - Alpha One, Pre-Transplant




Tyler - Biliary Atresia, Transplant 06/2000



Ali - Alpha One, Transplant 04/1992 (Sorry Ali & Michelle, I realized when I got home that I hadn't gotten a new picture of Ali!)

None of these kids did anything to deserve the sentence they were given - and yet each of them is such a great example of how to take your licks and keep on going. I, for one, felt honored to walk for them.


It was a beautiful, sunshiny, great weather day. Our group totaled 19 people - and we weren't the largest group (I don't think the ALF counted children under age 15 - we had 6 of those). This was the first walk, so there were a few organizational things that were lacking (like a loudspeaker for opening ceremonies) and it was a smaller group than I would have thought.

Here is Ellen Shank, the lady who interviewed Grandma on Wednesday and kicked off the walk on Saturday:



The walk was along the rivers of Brush Creek, better known as Flush Creek here in KC. Pretty, yes. But, when we get a lot of rain, the sewers overflow into the creek, and it ends up being a stinky mess. That combined with the geese droppings everywhere, and well, it really probably wasn't the most sanitary of places for liver transplant patients. But, pretty, yes, it was pretty!



Along the route, they had up different liver disease facts. Some of them hit a little too close to home:



At the finish line, they had pizza & pop ready to go, a great little band from St. Louis, a quiz on the liver disease facts, and a bounce house for the kids. It was really a good time. Here's a picture of part of our group eating pizza & listening to the band (minus about 6 of our walkers).



We knew it was time to go home, when we found this in our stroller.



Special thanks to everyone who walked with our group. Tammy & Janna drove all the way up from Wichita to walk with us. My friends, Bob & Lori brought their kids, Andy & Zoey and walked with us as well. And, our neighbors Sandy & Sidney joined us, too. It means so much to Randy & I that our friends took the time out of their busy schedules to come support our cause. Thank you from the bottom of our hearts.

---------------------------------------------------------------------------------------

I posted over the weekend, but please continue to keep Aiden in your prayers. He was just recently diagnosed with some blood pressure and kidney issues this past week. Unfortunately, it can be a side effect of the medicines that our kids take. Please pray that the doctors can get this under control.

And, for Haley's family. Today is the one year annivesary of Haley's passing. It's a hard day for me, and I was only part of her "liver" family. In Haley's short 11 years, she gave so much back to all of the kids affected by liver disease. She wrote songs about the disease as well as for the kids who suffer. She sang for fundraisers across the country. She was scheduled to sing at a benefit in St. Louis the night before Tanner's transplant, but was prevented from that due to illness.

Her family has continued her passion, helping other kids after her passing. They've established The Haley Vincent Foundation. This groups sends Miracle Mail packages to children in the hospital, and bereavement packages to parents who have lost their child. Please hold this wonderful family close in prayers during this most difficult time.

---

Saturday, September 30, 2006 2:43 PM CDT

We had a wonderful walk - great weather, wonderful friends. A small group of people - but even our 19 walkers wasn't the largest team (darn, we'll have to up the ante next year!)

A few prayer requests today, and a longer update (with pictures!) tomorrow.

First up is my boy, Aiden. Aiden's mommy, Lisa, was one of my co-conspirators in our trip to Florida back in August. He's having a tough time - just got diagnosed with some kidney stuffed (unfortunately, it can be a consequence of the meds that our kids have to take post-transplant).

And, for Haley's family. Tomorrow is the 1 year anniversary of her entry into heaven - and it's just not the same down here without her. Haley was on the waiting list for a liver transplant and suffered from Autoimmune Hepatitis and Lupus. In her short 11 years, she gave back so much. She wrote songs about liver disease (Prednisone, Billy Rubin) & for our liver kids (Hots & Everywhere). There are families everywhere that are still mourning her loss, but none of us feel the pain that her family does.

And yet, through their pain, they are still honoring Haley. They have established the Haley Vincent Foundation that sends gifts to children who need a picker-upper, and to parents who have lost their child. They are wonderful people who continue to follow God intheir darkest hours. Please keep them in your prayers.

---

Monday, September 18, 2006 2:59 PM CDT

Sunday night, updated to add:

I feel a bit strange adding all of this. The ALF asked if they could use Tanner's story as one of their marketing stories - and we were fine with that. What I think they failed to realize is that our team isn't about Tanner, it's about all the kids who suffer from liver disease, and that we're actually walking for 5 local kids. So, I feel somewhat like we're stealing the spotlight - to our other liver families here locally - please don't take it that way!

So far, the ALF has been contacted twice to see if we would be willing to do a media segment.

Grandma Loretta is going to be doing a 5 minute segment on the local talk radio station, KMBZ this week to help promote the upcoming ALF walk and talk about being a live donor. She's scheduled to be on Wednesday morning at 8:20 a.m. You can listen online (a quick registration is required).

Tomorrow afternoon, NBC Action News is supposed to come out and shot a spot for an upcoming news broadcast. No word on when that will actually air, but when it does, we'll let you know here.

Now, there is still time to register for the walk - we'd love to have as many walkers as possible on Saturday - but register, soon.


Just a short update and reminder to our friends, families, and neighbors:

Please join us for the 2006 Liver Walkapooloza. We're walking for all the kids here locally who are affected by liver disease: Ali who was transplanted at 8 months old for a disease called Alpha 1; Alexander who also has Alpha-1 (and a really cute twin, Benjamin) and is pre-transplant; Janna who was transplanted at 18 months old for Biliary Atresia; Tyler who was transplanted in 2000; and Tanner who was transplanted at 10 months old for Biliary Atresia. We want to help find a cure so that other families don't go through the pain and heartache we have all been through.

There is still time to register! Please join us - it looks like it is going to be a beautiful day. You can also register the day of the even at the walk if you'd like.

Go here to join us. At the very top in the dark blue bar, click on the "register for this event" and then select "team registration". Our team name is Liver Families and Friends.

It should be a good time. There will be a band afterwards, Face Painter, 96.5 the BUZZ will be there, a Bounce House, and coffee. And, if the weather forecast holds its wonderful pattern, it should be a great day for a walk.

As of last Friday, we were the largest team (so far). I think that would be a really wonderful thing to have - the largest team! Most people associate liver disease with people who have abused their bodies with drugs and alcohol. It would be a wonderful message to show people that innocent children suffer from liver disease, too.

Thanks, everyone!

---

Friday, September 8, 2006 8:21 PM CDT

Vacation Wrap-Up

Thursday afternoon, we drove out to Faust Park after a relatively long nap by the kids. Because they had napped longer than we had originally attended, we ended up getting caught in a bit of traffic jam, and did not make it to Faust Park until about 4:15 p.m. The Carousel closed at 4 p.m., so we didn't make it this time. But, it is one attraction that is inside and will be open when we come back in February. We'll try it then.

The kids didn't seem to mind at all, as there is a huge beautiful playground here, too. They just couldn't get enough of the playgrounds.

They slid:



And slid some more (notice the nice static effect on Tanner's hair here):



Climbed a rock wall:



And just ran around on the cool playground mat:



They were worn out from all the playing, and got to bed at a much more normal hour than they had been this week.

Good thing, because we started out early this morning at the zoo again. Morgan's favorite thing at the zoo is the "Tiger". So, of course, she had to ride the tiger (again) on the carousel. Can you see the pure joy in her face?



Then, deciding not to fight it anymore, we took them back to the zoo playground so that they could (what else?) slide some more. This time, they also played around on the hippo in the playground. Here is Tanner imitating the hippo, while on the hippo:



Now, the hot thing at the St. Louis Zoo right now is the baby elephant. Everyone was talking about it, so we decided we'd feel a bit foolish if we didn't take time to catch a peek. We headed in that direction around 9:45 - we were astonished to see that there was a sign about 1000 ft from the baby elephant that said "the line starts here". Thankfully, there was no line today, and we were able to see this magnificent little guy.



Tanner has loved the elephants when we've seen them, so it was no suprise that when we headed off to Build a Bear to make our souverneir, that he quickly grabbed on to the elephant. And Morgan, well, she chose a tiger of course!

Here is Tanner giving his Elephant it's heart:



And, it's test hug:



We named the elephant Ross, after Dr. Shepherd who is Tanner's main GI in St. Louis. And, appropriately, the elephant got a pair of scrubs to wear home.

Now, I don't have pictures of Morgan at Build a Bear, because about the time that Tanner was giving his elephant a hug, some lady with a double stroller ran over Morgan (literally). Morgan ended up with a small cut at the outside of her eye, and we couldn't get her calmed down enough to enjoy the Build a Bear experience. Daddy and Tanner filled her tiger, and Tanner even put two hearts in it for her.

After all that, we headed home...it's been a long vacation.

---

Thursday, September 7, 2006 2:09 PM CDT

Grant's Farm

This morning we visited Grant's Farm. I would highly rate this as one of the best attractions yet. The zoo is great, but this was just a wonderful experience. It's mostly backed by Anheuser-Busch, and they have really made that place beautiful and convenient.

The day starts with a Tram ride through their wildlife preserve area. It has lots of different deer, zebras, buffalo, Canadian geese, Texas Longhorn steer, elk, turkeys, and lots of other animals. Tanner ate this up:




Along the way, we also passed by Ulysses S. Grant's original homested which is also in the park. It's only open to tours a few times a year - and this wasn't one of those times.

Morgan was even a show-stopper while on the Tram...she dropped her sippy cup off the tram, and they had to stop it to pick it back up.

Once inside the actual farm, there are all kinds of animals that you can see. Birds, kangaroo, tortoises, and baby goats that you can feed. We grabbed a few bottles of milk, and let the kids feed the goats. They didn't quite know what to think.



We saw the elephants perform, and then had a unique chance to feed their three camels which are known as The Three Amigos. Morgan absolutely loved doing this (go figure that feeding the goats scared her, and she loved feeding the camel who could literally have bitten her fingers off).



We finshed the morning by touring the Bauernof (German for barn). It was built in 1913, and surrrounds a courtyard where you can feast on brats and (free) beer. Ironically, we forgot to get beer.



It's where a few of their horses are kept, along with some of the Budweiser show wagons, harnesses, and awards that the Busch families have won over the years. It was absolutely gorgeous and really neat to see.

We then hopped back on the tram, and headed back to the main entrance. Near the main entrance is the Clydesdale Stables. We had a family photo taken with one of the horses (sorry, we haven't scanned it yet), and then did a tour of the stables and farmyard. The Clydesdale, also known as the Gentle Beasts, are huge, but so friendly. They were absolutely gorgeous animals.

This time, Morgan was afriad, but Tanner wanted to pet the horses. He was so funny pointing at all of the horses and yelling "horsey!".




Needless to say, all of that excitement has left us with two exhausted kids. They are napping now. We've switched up our plans a bit, and we'll be heading out to Faust Park this morning. We're going to let them run on the largest playground in St. Louis County, and hopefully ride the carousel as well.

Tomorrow, we'll visit the zoo, including the carousel and playground there, do Build a Bear, and head home. Hopefully we'll be home by late evening and we can all enjoy a good night's sleep. As much fun as we're having, I think we're all looking forward to getting back home.

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Wednesday, September 6, 2006 9:04 PM CDT

The kids took a late and long nap on Tuesday afternoon. So, we decided to do something prior to supper, and stopping at a park seemed like a great idea. We went to the Turtle Park, which is part of the Forrest Park. The kids had so much fun, climbing on the turtles:



And, they had even more fun throwing rocks at each other in the "Turtle Nest" complete with Turtle Eggs (some even hatching).



Unfortunately, we were out late, and the kids got to be later than normal. Which meant that we had crabby babies for Tanner's doctor's appointment. Tanner's Prograf was redrawn (despite the very low level, his liver was still very happy) and we'll wait to see how the level was.

The summary of the doctor's appointment - "NORMAL". Dr. Shepherd mentioned several times that Tanner was "normal" now, we should expect him to lead a "normal" life, and that the odds of him experiencing a major rejection or bile duct issue had subsided. They were pleased that he had not yet contracted EBV. They told us that he will probably develop it at some time, but the further out from transplant and the lower his suppression level, the less dangerous it will be for him (EBV is a virus that can lead to PTLD - a cancer in post-transplant kids). It's truly amazing to hear a doctor who has seen lots of very sick kids lament on how far Tanner has come...he remembers that little 10-pound boy with a big belly and stick arms, blue eyes in a sea of yellow. And, today, he got to listen to a 2.5 year old shreiking, climbing, and acting like a typical boy. We'll go back in February for Tanner's 2nd transplant anniversary and some more extensive studies - including a kidney study.

This afternoon, we went to the Magic House. It was a pretty good time for the kids, but the place was aimed for a little bit older kids. They did have a toddler area that the enjoyed. It included playing in the sand:



And, their favorite, playing in the water:




Afterwards, we found yet another park. In the grand scheme of things, it's amazing that seemingly their favorite thing to do is the least expensive. They absolutely love the playgrounds. We've hit the Columbia Cosmopolitan park, the Forrest Park Playground, Turtle Playground, and now the Kirkwood Park. No plans for a park tomorrow (although Grant's Farm may have one), but we are planning on hitting Faust Park on Friday.

Here they are riding the little springy animals:





And, sliding...Every time that Morgan would get off the slide, she'd hold up her pointer finger and say "I'll be right back". And, she'd go down the slide again. Repeat about 10x.



Tanner just liked marching around on the playground equipment. This one had several different platforms connected by bridges, arches, and tunnels. He would march back and forth....to and fro...he is our little explorer.



Tomorrow we're headed to Grant's Farm (where the Budweiser Clydesdale's reside) and back to the zoo (or another park) in the afternoon. Friday morning we'll go back to the zoo and ride the carousel, make a bear at Build a Bear, and head to Faust Park (for another carousel ride). Hopefully by then, the kids will be worn out and we'll have a peaceful drive home.

Until then, enjoy the pictures!

---

Tuesday, September 5, 2006 2:51 PM CDT

Lions and Tigers and Bears, OH MY!

If you didn't catch yesterday's post...go to Journal History and check it out.

Today was our first day at the zoo. We got a slighter later start than we had first anticipated, but we were at the zoo around 9:20.

The St. Louis Zoo is amazing - and most of it's attractions are FREE. Yep, you read it folks, free. You pay for parking, but there is even free parking if you are willing to walk through the park aways. And, for two of the paying attractions, they offer free times - the first hour that the park is open each morning.

So, we started our day at the Carousel. Morgan absolutely loved riding it, and insisted on riding the Tiger first, followed by the Lion. We had to physically remove them from the animals at the end of each ride. We'll probably try to hit it again tomorrow between labwork and our follow-up appointment.



Then, we went and saw the bears, penguins, apes, orangatangs, zebras, camels, giraffes, swamp land, gazelles, and "big cats" including Morgan's beloved tiger.



In the middle of the Children's Museum is a playground that the kids loved. It had a chute slide made of plexiglass - as you are going down the slide, you can actually see the Beaver and other animals playing in the water next to you. The kids LOVED it. Here is a fun picture of Tanner that Randy caught.



We ended the day at the Ape House, where I caught a picture of these monkeys:



The kids are now napping. We joined the zoo just for this trip - it gives us free parking, as well as free access to the railroad and children's zoo (two of the few that charge admission). So, we'll head back there later this week.

Part of our package here at the Embassy Suites was a "Build a Bear Package" that included a sleeping bag, toothpaste, toothbrush, floss, and a t-shirt for your "bear" along with a $5 gift certificate. We found a special Build a Bear inside the Zoo, so we'll be doing that as a souvenir of our trip.

Tonight, we'll head about for a quick meal. Dining at a fine dining establishment isn't what I'd call relaxing - so we may grab some fast food, find a restaraunt, and have a picnic for supper.

---

Monday, September 4, 2006 9:12 PM CDT

Planes, Trains, Car Seats, and Playgrounds


Today was Day #1 of our vacation - which primarily meant that it was spent actually getting to our vacation location. This was a "short trip", a mere 275 miles from our home. However, when you have two, two-year-olds, that means its about 6 hours from home. Thankfully, the kids were mostly cooperative today.

Randy & I loaded the van last night, so we were pretty well ready to go this morning. After getting up, we ate breakfast, got ready, locked the house down, and then left around 9 o'clock this morning. We pulled in our hotel in St. Louis at 3 p.m.

Tanner and Morgan were occupied by Baby Einstein during most of the first 1/2 of our trip. We stopped in Columbia, MO, and ate lunch at McDonalds. We found a lovely grandmother who was local, and she filled us in on a park called Cosmopolitan Park. So, after a leisurely lunch of Apple Dippers, Cheeseburgers, and French Fries, we set out in search of this park.

We were amazed at the size of this park, and the kids had so much fun. There was a long tunnel they could tromp through (Tanner's personal favorite), little spring animals to ride...



slides to slide down....




hills to climb....(see those yellow and orange tube slides down the hill...there was a similar one on the hill that Randy, Tanner, & Morgan are climbing - it was the kids favorite slide at all and about a 15' drop)



playstructure bridges to run along...




We were probably only there for about 30 minutes, but when most of the time they are going in opposite directions (like here)....it wore mommy & daddy out.




The remainder of the trip wasn't too bad, but wasn't quite as enjoyable as the first. We spent the last hour of our trip looking for airplanes, trains, and anything else that would capture the kid's attention and keep them for howling for any length of time.

And, after we were settled into our hotel room, we headed out for supper, and spent another 30 minutes swinging and sliding at the Forest Park playground. Pictures from that later on.

Tomorrow is the zoo (assuming that the rain stays away) - or Magic House. Even with grumpy kids who melted down (only about 20 minutes of naps today!) at dinner, overall it was a good day, and we are looking forward to seeing the kid's reactions as they are introduced to the zoo tomorrow.

---

Saturday, September 2, 2006 9:22 PM CDT

It's been a busy few weeks....

Morgan got her ear tubes and seems to be doing well. We had them done at an outpatient center this time, and we were very impressed. We were in and out quickly, and treated wonderfully the whole time. Parking was close (and free), and we were home by 9:30 in the morning. The worst part of the whole experience was that we had to put ear drops in for three days afterwards.

Morgan's ears were filled with fluid again, and we have noticed that she seems to be hearing better with the tubes. We'll go back for a check-up in another 2 weeks to make sure that they are healing properly.

Tanner had labs this week. I knew something was up when the lab hospital called us this morning and asked how to reach the transplant center. It turns out that Tanner's Prograf (his rejection medicine level) was "undetectable". I knew that since Tanner was only 0.2 mg, that it would come to this at some point. So, we upped the medicine to 0.3 mg for the weekend until we can get some formal direction from the doctor's early next week. No word on other lab values at this time...

And, we are "officially" on vacation. I have that in quotes, because I still have a project to finish up before Tuesday a.m., and we'll have a computer with us in St. Louis to check e-mail. But, it should be a relatively low stress weekend.

We're leaving for St. Louis Monday morning, and I don't think we could be more excited. The kids are talking about the zoo and all of the animals we'll see and the train we'll ride. We've found two differt carousels for the kids to ride. We're also setting our sites on the Magic House which was recently ranked #1 national attraction for child appeal (beating Disney!). If time permits, we're also going to check out Grant's Farm which is home to Budweiser Clydesdales and the Purina Farm. Both of these locations are FREE - and offer interactions for the kids with different animals. So much to do - and so little time. Realistically, we won't get to all of the attractions this time, but we're looking forward to our future visits to St. Louis, too.

Tanner has a follow-up appointment on Wednesday. He'll also now have labwork since his Prograf level was so low this weekend. And, Randy & I have labwork, too. We're all involved in a Biliary Research study. Our blood will be taken and "banked" for now, with the hopes that someday it can be used to see if there is any kind of genetic link to this horrible disease.

This disease is something that has affected us so much and continues to do so. Tanner is now 18 months post-transplant, and for all purposes doing great. But, not everyone is so lucky. One of our "liver kids", Rani, passed away this week waiting for a liver transplant. She lived in an area in Australia that had not yet done a living donor transplant. I am so grateful to live in the United States where I have the ability to chose my medical center and different treatment options. Please keep this family in your prayers as they go through a very difficult time.

Stay tuned...I'll try to add updates (with pictures!) from St. Louis.

Stacy

---

Sunday, August 20, 2006 7:35 AM CDT

I know I've been a bit slack on the updates...so here's the latest in our world.

Morgan is getting ear tubes on August 25th. She's had 3 - 4 ear infections since her tubes fell out. Our pediatrician now thinks that the ear infections cause a sinus congestion - which then goes to her lungs. We've been doing breathing treatments since mid-June. We're anxious to get the tubes and hope that that does the trick.

Tanner's had a few set of labs in the last few weeks. His Prograf level was really high - which eventually led to diaherra. So, we skipped a dose of Prograf (that was hard!) and reduced his dose to 0.2 mg of Prograf. His level is now running around 6 - which is perfect since he's supposed to be in the 5 - 7 range. His liver is happy on this dose, and his kidneys are happier than they've been in awhile.

However, Mommy is nervous. 0.2 mg is virtually NOTHING as far as the med goes. Most kids we know his size are on about 0.5 mg - and while I know that size has nothing to do with what they need, this just doesn't seem like enough.

St. Louis gave us the approval on Friday to go back to monthly labs - but since we are headed to St. Louis in 2.5 weeks, we'll do a fresh set of labs before our trip. No need to make a 5 hour drive with "old" information.

I went to Florida last weekend and met Anthony's mom, Laurie, and Aiden's mom, Lisa. It was a wonderful weekend with beautiful weather in normally steamy Tampa. I can't explain what a great time we had - although we really didn't do a whole lot except hang out at the beach. It was wonderful therapy to spend time with women who have been through (mostly) the same ordeal that we've been through including Biliary Atresia and transplant. Daddy & Grandpa did ok with the kids - with only one minor incidence involving Morgan, Crayons, and the Playroom wall.

We've been in Iowa this weekend...a relatively calm, laid back weekend. Both kids got haircuts from Grandma, and I picked up about 20 scrapbook pages that Grandma has done for me the last month. I'm getting caught up! We spent the weekend seeing Grandma Crazy Woman & Grandpa Three Hairs and terrorizing their house. I can't say that they weren't warned. We also made a quick voyage to mid-Iowa to see Uncle Barry & Aunt Alisha's house. We also briefly saw some other extended family.

A few calm weeks. Mommy will take next Friday off to spend with Morgan after her ear tubes. And, we'll try to have a quiet weekend.

The following weekend is Labor Day weekend. We have a birthday party for our neighbor, Tyler. And, then we'll enjoy a vacation. Randy & I are both looking forward to a week off work for non-medical purposes (ok - Tanner does have a follow-up appointment, but it will more than likely be a "gee, doesn't he look swell" kind of visit - so, we aren't really counting it). The kids are very much into all kinds of animals right now - so I think they are really going to enjoy the St. Louis zoo and Grant's farm.

This fall's schedule is filling quickly. September is jam-packed right now with vacation, the Twin Garage Sale, watching one of our liver friend's volleyball games, and the ALF Liver Walk (see below). September is also usually the NICU reunion of both our hospitals. I will be traveling for work quite a bit until the end of the year as well. Tanner & Morgan will move up to the "Big Kids" classroom (for 2-1/2 thru 5) on October 1st. We're planning on transitions to big kid beds and hopefully potty-training in October & November. We have a busy fall, indeed!

Otherwise, all is well and quiet here. Hope you are enjoying the last of summer!

Stacy

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Note to our family & friends:

On Saturday, September 30th, a group of "Liver Families & Friends" will be walking in the American Liver Foundations Walkapoolza in Kansas City. The walk is designed to raise awareness and research dollars.

Our "Liver Families & Friends" group will represent children from right here in Missouri & Kansas that are affected by liver disease - Tanner, Ali, Alexander, Tyler, & Janna. If other liver families are interested in joining us - please let us know, we'd love to have you!

Anyone is welcome to join our team. A $20 registration fee by 09/15 will also get you a free t-shirt. Kids under age 12 can walk for free and pets are welcome as well. We're asking all our friends, families, and neighbors to come join us that day. We want a large presence so that people realize liver disease affects kids, too!

For more info, click here.

To register to walk with us, go here. Make sure to do a "team registration" and select "Liver Families & Friends" team.


Disclaimer: September 30th is a very busy weekend in Kansas City. The American Royal Parade is later that morning (I'm told after the end of the walk), the NASCAR Busch Series race is that weekend at the Kansas Speedway, and it's Oktoberfest. So, if you are thinking about coming in from out of town, it will be a jam-packed, fun weekend - just be prepared for lots of people!

---

Sunday, August 6, 2006 3:09 PM CDT

Finally an update!

The last few weeks have been pretty busy for us.

About 2 weeks ago, we finally made it down to Wichita to visit our friends and Morgan's godparents. It was an "easy" trip in the sense that Lisa, Morgan's godmother, runs a daycare from her home. So, the house is toddler proof, she has pack-n-plays, booster chairs, and lots of toys to play with. It was so nice to be able to let the kids go play in the play room and not have to worry about what they were getting in to. In fact, at one point, Morgan turned to Randy and said "Go sit down, daddy".

Last weekend, we drove to Western Kansas to celebrate two of Randy's aunts & uncles 25th wedding anniversary. It was a horrible, horrible, horrible drive with two two year olds screaming the entire way. And, when we got there, we were supposed to go in and sit through a 1 hour church service. Needless to say, that didn't really work. Somehow, we managed to make it through the reception that night (even without naps).

The highlight of the trip was playing on Tanner's godparents (and one of the couples celebrating their 25th anniversary) farm. They kids chased the cows through the field (see picture above), rode the four wheeler, played with the kittens, & "drove" the big red truck. They had such a good time, even if it were only for an hour.

And, through all of this, the kids have been sick. Snotty, snotty noses everywhere - cough & congestion. Morgan has been hit especially hard. We've put her back on Singular to help with her "preemie" lungs. However, her ear tubes are no longer working (one was removed & one is just hanging there). She's had 3 ear infections since we know the tubes quit working in late June. We hope to get another set of tubes in the very near future.

We have a busy couple of weeks. I'm making an unexpected, quick trip to Denver for work on Wednesday. I'll actually fly in & out on the same day. Leaving the airport around 7 a.m. and returning around 11 p.m. It will be a very long day. Next weekend, I'm flying down to meet Lisa & Laurie to hang out on the beach. It should be a fun girls' weekend.

Two weeks from this weekend, we're going back to Iowa to see Grandma & Grandpa. Not much planned except for to relax and terrorize their house for the weekend instead of ours.

And, we are gearing up for Tanner's transplant clinic in St. Louis the first week of September. The sick people that we are - we're combining it with the family vacation. So, we'll head down to St. Louis a few days before his appointment, and stick around afterwards for a few days. We're focusing on toddler friendly activities including the St. Louis Zoo, Grant's Farm which includes the Budweiser Clydesdale horses, The Magic House in Kirkwood (which was just around the corner from where our apartment was during transplant), and Faust Park which includes the Butterfly House, a renovated Carousel, and a new gigantic playground. If the Spray Pools are still open, we may try to find one of those if it's still toasty outside.

All of our near future plans are contingent on Tanner's liver behaving itself. His labs from Friday show a few of his liver labs have jumped up (for our liver friends, AST from 37 to 61 - normal is less than 40 & ALT from 29 to 38 - that's still normal). We haven't gotten his Prograf level or his GGT level back yet. He has been battling a cold and he's just gotten over an ear infection - maybe it's related? We should get diretion on Monday on our plan of action for him.

Hope everyone is having a great summer - we're ready for fall to get here. It's been 105 the last few days...too hot for our liking. I'm ready for those nice 70 F days.

Stacy

Monday a.m. update - Tanner's GGT is 18 (PHEW), which means that it's probably not something liver related. His Prograf level is an astounding 16.1 (on 0.4 mg 2x/day)! His level is supposed to run between 5 - 7, and this high of a level can cause some side effects (headaches, diaherra, and tremors), although we haven't really seen much of those. Still awaiting word on what's next...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Note to our family & friends:

On Saturday, September 30th, a group of "Liver Families & Friends" will be walking in the American Liver Foundations Walkapoolza in Kansas City. The walk is designed to raise awareness and research dollars.

Our "Liver Families & Friends" group will represent children from right here in Missouri & Kansas that are affected by liver disease - Tanner, Ali, Alexander, Tyler, & Janna. If other liver families are interested in joining us - please let us know, we'd love to have you!

Anyone is welcome to join our team. A $20 registration fee by 09/15 will also get you a free t-shirt. Kids under age 12 can walk for free and pets are welcome as well. We're asking all our friends, families, and neighbors to come join us that day. We want a large presence so that people realize liver disease affects kids, too!

For more info, click here.

To register to walk with us, go here. Make sure to do a "team registration" and select "Liver Families & Friends" team.


Disclaimer: September 30th is a very busy weekend in Kansas City. The American Royal Parade is later that morning (I'm told after the end of the walk), the NASCAR Busch Series race is that weekend at the Kansas Speedway, and it's Oktoberfest. So, if you are thinking about coming in from out of town, it will be a jam-packed, fun weekend - just be prepared for lots of people!

---

Saturday, July 15, 2006 1:17 PM CDT

*****New Photos on the Photo Page - 07/16/06*****

Greetings from HOT HOT HOT Oz.

Things have been going better this week. Tanner's labs were normal, all viral studies were negative, and the stool cultures were ALSO negative. So, the vomiting and diaherra were most likely due to the ear infection. HUGE sigh of relief and we're very grateful that we don't have to go back for labs for another 3 weeks!

Morgan has still been struggling with her ongoing cough / cold. The doctor is thinking some kind of reactive airway thing left over from being such a tiny little thing to start with. So, we are going to start her on Singulair - it's an asthma med, but should help with this, too.

We went to a new ear doctor on Thursday (and LOVED him). He extracted one of Morgan's ear tubes that was just about to fall out. She's already had 2 infections in that ear since the tube quit working. We will monitor it for another few months, but if she gets another infection, we'll probably put in another set of tubes - and the doctor said we might want to consider having her adnoids removed as well. I guess I'll have to do some research on that.

Our really big news is that Randy & I got a DATE NIGHT last night. It's been a long time since we went to a movie and dinner without kids - and it was really wonderful and very strange at the same time. So quiet - so efficient.

Our daycare lets the directors offer a parent's night out about once a month. You have to pay additional for it (and it's a bit expensive), but when you don't have any other babysittes that you are comfortable with, sometimes you have to ante up. The assistant director that we love offered this Parent's Night Out. She kept about 5 kids from 6 p.m. - 11 p.m. We watched Pirates of the Caribbean and went out to eat.

The kids played outside, played with Play Doh, ate s'mores, played, and watched movied. We had told them that are two typically went to bed at 7 p.m. - she had to duct tape Tanner to the cot at 9:30 p.m. (ok, she didn't use duct tape, but she did have a very hard time getting him to go down). Did that mean they slept in? Of course not! Up at 6:30 this morning, but they did go down for a nap around 9:45, and now at 1:30, they are still asleep.

We have a busy month coming up. We're going to be traveling to visit family & friends the next few weekends (assuming that everyone's health holds up). And, then in only FOUR WEEKS, I'm going to fly to Florida to spend the weekend with Aiden's Mom & Anthony's mom. It's kind of strange to go spend a weekend with people you've never met in person, but we all share the bond of our little boys having liver transplants at very young ages (3 months - 10 months). We "talk" online while waiting for lab results, or to vent our frustrations with doctors / labs / nurses - and share how grateful we are for our little ones. These ladies share the knowledge of how lucky we are to have our kids with us today - and what a true miracle are. While I wouldn't wish a sick child on anyone, I often don't know if parents of healthy kids truly understand that principal. So, I'm going to go to Florida and have a wonderfully relaxing weekend with these women. (Can you tell I'm looking forward to it?)

And, of course, where is my husband during all of this? My very loving husband is home with the kids by himself (yet again). He is such a devoted daddy and giving husband - I know I am lucky! But, we're also lucky because my dad (Grandpa 3 Hairs) will come down from Iowa to help watch the kids that weekend.

Grandpa 3 Hairs will also be here this week to help watch the kids while I'm in Denver for work. 4 days in lots and lots of meeting. I know I'll miss them.

Have a wonderful week!

---

Thursday, July 6, 2006 9:58 PM CDT

Sometimes you wonder if you did the right thing.

Tanner's transplant team keeps telling us that it's time to get back to normal and enjoy life. Thus, we've started the kids in daycare and even enrolled them in swimming lessons that started on Monday.

On Monday night at midnight, Tanner threw up - and then proceeded to have diaherra for the next 36 hours. It was almost like he'd had some kind of allergic reaction (this is his typical allergic response), but we could never find anything he would have been exposed to that egg in.

Now, due to the ongoing diaherra, and irratic labs of the last few weeks, we're headed into the hospital tomorrow for another set of labs. This will be Tanner's 7th set of labs since June 3rd (if you are reading this Ms. Penny, you don't have the Comp Metabolic that was run when he was in Urgent Care the weekend of June 10th). Prior to this, we were on a MONTHLY lab schedule.

It's obvious that he's been exposed to something viral in his labs (monocytes are WAY up and in early June his AST/ALT/Alk Phos jumped, too). So, now we're on a quest to make sure it isn't one of the really bad viruses (like EBV which can lead to cancer in post-transplant kids).

Was it daycare? (The kids have been doing well lately and missed very little school.) Was it swimming with the neighbor kids on the 4th? (hee hee, threw that one in just to tease the neighbors) Is it our new swimming lessons?

We won't ever know the cause, and we can't remain in the bubble that we've surrounded ourselves with the last two years. But, it's tough to know that something you did, inflicted harm to your child (even though unintentional and sometimes even unpreventable).

So, please keep our little guy in your prayers. This is probably nothing, but he's ready to be back on a monthly lab schedule, and I really don't want the stress of one of those viral tests coming back positive. We won't have results on the viral studies until sometime next week.

In the meantime, we'll continue with our 4 remaining swimming lessons. The kids are coming along in them - even if they aren't so keen on going under water.

Next week, Morgan has an appointment to check her ears. If given the option, we will definitely have her tubes replaced. She gets ear infections too easily, and it will only be worse this fall & winter being in the daycare.

Thanks for checking in -
Stacy

Update from Friday afternoon:


Lab results show that Tanner's liver & kidneys are happy, but he definitely appears to be fighting something from his White Blood Cell count.

This afternoon, we figured out that "something" was an ear infection. After getting the diagnosis, I remembered that about 10 months ago, Tanner also had mystery vomitting and diaherra that was linked to an ear infection.

They're still checking stool cultures & viral loads just to be safe - so we're still hoping those come out normal.

And, our final bit of good news, Ms. Penny lobbied for us, and as long as Tanner stays healthy, we don't have to repeat labs for a month. (Thank you, Penny!)

---

Saturday, July 1, 2006 1:10 PM CDT

Well, while we've managed to make two full weeks of daycare in a row now (and 14 of the 1ast 15 days) - we've all had a horrible summer cold. The kids have been up & down throughtout night - and we've been on various medications (antibiotics, breathing treatments, & cough medicines) for almost 2 straight weeks.

The good news (and I'm knocking on wood as I type this) is that it seems everyone is starting to feel better. Hopefully a few good days of rest, and we'll all be healed up.

Tanner's labs have bit a bit wacky with the colds and viruses. He's had 5 sets of labs in the month of June alone - and weren't not sure when the next set is due. His liver seems to be happy. I do believe that despite the cold, the boy has gone through a heck of a growth spurt recently. It became fairly evident today when we had to lengthen the straps on his car seat. We even need to move them up in the back. So, hopefully that explains some of the wacky labs, too.

Daycare seems to be sitting well with the kids. We went through a few weeks of heart breaking drops offs, but those have gotten better. The last few days Morgan has given Randy a kiss and a squeeze (hug) before he leaves and waved bye bye.

And, they are learning so much. Both of their speach patters have come a long ways - Morgan is making short sentences and Tanner is putting together several words at a time now. We can understand Morgan about 90f the time - and she definitely knows what she wants. Morgan knows her alphabet by sight, colors, shapes, and numbers to 10. Tanner knows a few of the letters, shapes, colors, and the numbers if pressed hard.

Right now, they are both napping downstairs in their big kids bed. In daycare they sleep on cots that are about the same size, so it's not too much of a leap for them to sleep in these beds. We haven't been brave enough to try them at bedtime yet - but even naptime is progress.

Work has been busy for both Randy & I. Randy is working on a design-bid team for a State of Missouri prison. They are putting together preliminary stuff to present to the state so that they will hopefully win this bid. I have been working on converting some of our software databases to metric as our company gets ready to enter the international arena. We're both enjoying these projects - but it hasn't been unusual for us to work at home from the kid's bedtime (7 p.m) to 10:30 - 11 p.m. We've both got another two weeks of crunch time - and then things should slow down for a bit.

Monday night, the kids start swimming lessons. Well, for that matter, so do Randy & I. It's a parent-tot swim class, and since we have two kids - we need two parents. The class is supposed to be 8 sessions, but we'll probably only make 7 since Randy has a work meeting one night.

Randy & I both work on Monday - and with little vacation time to spare, we didn't dare take a day off. Otherwise, we're hoping for a quiet weekend where we can catch up on sleep, housecleaning, and work.

Hope you have a safe & wonderful 4th of July!
Stacy

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Sunday, June 25, 2006 8:56 PM CDT

The kids actually made it through a full week of daycare last week! We knew it would take awhile to get their systems acclimated. However, I don't think the trend will continue.

Morgan did have a cough and a sore throat towards the end of last week. No fever and only a bit of a snotty nose, so we continued to send her to daycare. Friday to Saturday night, she was up & down all night long. Finally, around 6:30 a.m. at breakfast, she looked at me and said "Mommy ear hurts".

My first thought was drats the tubes quit working, and my second thought was yay - she can tell me what hurts! So, we headed off to urgent care. There, they confirmed that the tubes are no longer working and she did indeed have an ear infection. She was also wheezing quite a bit, so they put her on Prednisone (a steroid) and additional albuterol (inhaler) treatments.

A 2 year old on steroids is NOT FUN. The girl is a maniac on the steroids. We never say that with Tanner on steroids - but Morgan is more of a daredevil and ornery on the steroids. Not a pretty combination.

So, we'll have to swing by the pediatrician's sometime tomorrow and get Morgan's ear infection and wheezing checked out again. We'll have to find time to get to the ENT doctor (ugh - I hate that specialty of doctors more than any other group.

On top of all that, Tanner's labs are still wacky. A week ago, his Prograf level was high. Since that was most likely linked to his diaherra, they lowered his dose and told us to retest this week. We did labs on Friday - and now several of his labs are wacky. The liver stuff is pretty good - but it is buying him another set of labs sometime in the middle of the week. ARRGH.

So, wish us luck as a crazy week ensues. If the kids heal up, we may try to head down to Wichita next weekend to see some friends. We've been trying to go see them since New Year's, so it would be really nice to get down there.

---

Saturday, June 17, 2006 3:35 PM CDT

Randy just got the best Father's Day Gift that he'd ever asked.




He passed the Professional Engineering test. It was his 4th attempt in taking the test - the first attempt being 2 weeks before the kids were born. Ironically, the letter was dated June 13th...the 13th has always been our good luck day.

I can't begin to tell you how many hours he studied for that test...the sacrifice of his evenings and weekends. Or what a huge relief this is for all of us.

And, I can't even begin to tell you how proud I am.



For a really cute pictorial on Morgan's best friend - plese see the "Journal History".

---

Saturday, June 17, 2006 12:09 AM CDT

It began as a small crush...an occasional nighttime snuggle. Gradually, their relationship evolved into a comfort role. And, after nearly a year, it could be termed a full obsession. Constant companions, her best friend. With her through thick and thin - long lonely nights, trips to the doctor, the first day of daycare. Faithful. An ever-listenting ear. There to comfort every tear.

I present to you, Prayer Bear.



Well, this is what Prayer Bear looked like when we first got him. Clean, in a nice blue coat. He didn't look like this for long. Morgan used him as her teether as she cut in her teeth - slobbering on his fur and coat until they were dripped with drool. As time passed, PB (as we called him), developed a scent all of his own. Desperate times call for desperate measures.

So, we searched...and the grandparents searched...and finally, one day, at a Wal-Mart in Ulysses, KS - Grandma & Grandpa found Prayer Bear #2. We now had a PB she could hold - and another we could wash. She was fooled - and Prayer Bear was spared the stench of his earlier days. Two worked so well that we thought we'd try a third Prayer Bear - one to wash, one for home, and one for daycare. But, alas, she caught on and rejected "Benedict" Prayer Bear.

Prayer Bear is Morgan's best friend. She has hit the stage in her life where Prayer Bear does everything that she does, including:








Time Outs













Long Car Rides











Parties















Tricycle Rides

















Sharing Kissables











But tonight, Morgan climbed to all new heights for Prayer Bear. When we put her to bed, she threw Prayer Bear out of bed in her absolute indignation of getting put into bed. After asking her for and not getting an apology, I told Morgan, "Fine, Prayer Bear will sleep with mommy tonight". I scooped him into my arms, shut the door, and went up stairs - her tears and screams of anguish floating up after me.

After a few minutes, I realized that the screams were getting louder....and closer. And, then I realized - Morgan had scaled her crib for the first time to rescue Prayer Bear. You just don't screw around with true love.

---

Friday, June 16, 2006 9:16 AM CDT

Just a short post with some pictures for another liver family - a better post coming soon.

Tanner, post-kasai, pre-transplant



Tanner, post-transplant about a month



Tanner, post-transplant about a year

---

Sunday, June 11, 2006 2:22 PM CDT

What a week it has been!

Tanner & Morgan made it through 2 whole days of school without getting sick. By 3:45 on Tuesday, Morgan had thrown up. Tanner would get sick on Wednesday. Of course, it just wouldn't be right if they didn't share the love - and Mommy & Daddy were sick on Thursday night - Friday night!

Through the vomitting and diaherra, Morgan managed to stay hydrated, but Tanner started to worry us when he quit drinking fluids on Friday. We started watching wet diapers and he just wasn't having hardly any. So, we took him in for labs on Saturday morning. Most things (like his WBC & Kidney functions looked fine), but two of his liver labs have tripled from last week. But, that gave us the confidence to continue on current plan of care. (It's not unusual for your liver functions to elevate when you are fighting a virus - we'll probably repeat those labs sometime this week.)

That was until late Saturday afternoon, when Tanner started running a low grade fever. So, we took him to Urgent Care late Saturday night (after talking with both transplant & our pediatrician throughout the day) and got him a bolus of saline. While there, we found out that he has a sore throat - probably the reason he wasn't drinking & most likely the cause of the fever.

So, even though we only made 2 days of daycare (2.5 for Morgan), the kids seem to really enjoy it. They ask for "school!" in the morning and are learning a lot. Morgan has learned most of her shapes & colors this week, and can correctly identify 75f the alphabet (she could do about 50rior to this week). She was counting in the car the other night - and we're thinking that came from school, too. They get to do art projects and interact with other kids. So, it seems to be really good for them - and once we get their immune system built up, we hope they'll be able to spend a full week.

Morgan did have her first run-in on Friday afternoon. She was feeling great, and Tanner was still under the weather. So, Randy took Morgan in & I stayed home with Tanner. Another child tried to take Prayer Bear from Morgan - and Morgan in retaliation tried to bite the other child (said with a grimmace and hung head). The other child did fight back, and Morgan ended up with a butterfly scratch on her cheek (see pictures).

This weekend has been spent recovering (for all 4 of us). And, this morning we did something a bit fun. We took the kids to the Deanna Rose Farmstead in Overland Park. They have all the tradiational farm animals for the kids to see, pet, and sometimes even feed. We bumped into our neighbors while there - so we got to let all 3 kids play together. And, thankfully, they had remembered their camera, so we'll get some pictures of the kids having all that fun.

We're hoping for a full week in daycare this week - Mommy & Daddy need to get back to work! Hope everyone has a great week.

---

Monday, June 5, 2006 9:05 PM CDT

Just a quick update.

Kids had their first full day of daycare today which went pretty good. They both napped at school on the little cots (about 8" off the floor). Tanner only slept 30 minutes, but Morgan slept 1 hr 15 minutes. They said they were well behaved and adjusting well.

Good thing...because when we throw things at these kids, we do it full force. We decided to move Tanner & Morgan to their "big kids" bedroom this weekend. Grandma & Grandpa Z were in town, so they could help facilitate the move (keep the kids occupied and out of our way). We moved their clothes and accessories during nap time and then moved the beds shortly after.

So, Saturday night the kids spent their first night in their toddler room in the basement - a full flight of stairs from mom and dad. The kids have done great so far with all of the changes.

If you'll remember from last February when I painted the room, the room has a "T" and an "M" on it. Well, Morgan has been learning her letters lately, and on Saturday night after bedtime, Grandma found her holding Prayer Bear up close to the wall and telling him that this was an "M". She cracks me up.

We also went out to eat at Red Robin on Saturday night - our favorite kid friendly restaraunt - and they do really well with Tanner's eggs allergies. Grandma & Grandpa had the privilege of trying to keep up with the milkshake scooping and then got to watch Tanner & Morgan devour their meal. That was all followed by Tanner's monthly labs. Soon, Tanner will figure out that whenever we go out to eat, it's followed by labs.

His labs are great. It's the first time since last summer that his monocytes are within normal ranges. His liver labs are good, WBC is good, Hemaglobin & Hematacrit are fine, and his kidneys are doing superbly. Still waiting for one liver lab and his Prograf level, but otherwise, we were pretty pleased with the labs.

We should get to see Grandma & Grandpa Z again soon. Their car broke down on the way out here, and they borrowed our spare car for the week. They have to come back to pick up their car when it's fixed, so the kids will be tickled to see them again soon.

All for now...I'll try to get some new pictures up soon.

Stacy

---

Thursday, June 1, 2006 8:15 PM CDT

Today was the first partial day of Tanner & Morgan going to daycare.

What a radical change...to think that a little less than two years ago, Tanner and Morgan looked like this:















It was the first time that they had gotten to share a crib together, and just a few short days before Tanner was transferred to the University Hospital.

This is what they looked like this morning as they got ready to go into "school" for the first time.




















I don't know whether to be proud or sad. A short two years, and look at how much they've grown. What will they look like when I put up the picture of the first day of kindgergarten?


So, the question of the day: how did they do at daycare? Disappointingly well...is that an acceptable answer? When we dropped them off this morning, Tanner originally stayed very close to Randy's legs. Eventually, he found the books and we pulled up a small chair for him to read. Randy disappeared, and a few short minutes later I slipped out the door. When I peaked in 10 minutes later, they were playing away.

When I returned around 10:30 to pick them up (we're doing partial days today & Friday), Morgan grinned and said "Hi Mommy" as she slid by me in a scooter and Tanner just grinned from across the playground. It took me 20 minutes to drag them off the playground and get them into the car.

The kids spent this afternoon with Ms. Ashley - and they'll have a few hours with her tomorrow, too. It seems weird that I won't be saying "see you Monday" to Ashley and little Ms. Riley. And, I can only imagine the "Ashley" and "Ry-wah?" questions that we'll be getting for the next few weeks.

Tanner & Morgan adore Riley. I truly think that they think she's a sibling. They love to play with her and give her kisses. Riley laughs at Tanner's dancing (well, really, we all laugh at his dancing) and Morgan dotes on her.






(No, we didn't intend on the kids dressing alike today - it just happened that they were dressed very similarly - so we couldn't help but snap a shot.)


It's a difficult transition for us. Not just from the prospective of having them in a daycare, but from the perspective of not having Ms. Ashley around. Ashley has become a member of our extended family and helped us through such rough times. It's impossible to express how truly grateful we are to her for being a part of these formative years of the kids lifes. She has helped mold these two beings into the little people that they are. Thank you, Ashley. Thank you for being a part of our lives and for helping shape these wonderful little people.

---

Sunday, May 28, 2006 10:40 PM CDT

To me, summer has always been bookended by Memorial Day and Labor Day. Maybe that is because those roughly corresponded with the end and beginning of school - or maybe because they so closely reflected the gradual warming to the summer's searing temperatures. Either way...this weekend was the kick off to summer.

So, to welcome summer, we pulled out the pool from last year. You know, those little inflatable ones that are $8 from Wal-Mart. We packed it up with us to take to Iowa this weekend since the forecast was 90 F. HOT. So we went, prepared.

Today, the forecast was right on. Daddy got the pool out this morning and spent the better part of the morning figuring out how to patch the hole in the bottom of the pool. But, he was successful, and the kids got to spend about 45 minutes outside after nap playing in the pool.

For fun - here's a picture of the kids last year about this time, in the same pool.





And, this year....








We have a little game we usually play with Tanner were we tease him about eating his "yucky toes" - he then promptly sticks them in his mouth, and giggles madly. Here they both are participating in the fun:






Morgan then got the bright idea that she could jump in the pool - much likes she likes to jump on the sofa - by jumping up and then pulling her feet out from beneath her:






It didn't take Tanner long to figure out that he did not want to be a part of this game:










I think we may have to invest in a larger pool for the rest of the summer....or at least something with higher sides.





News here:

I'm off to Denver for two days (Tuesday & Wednesday) for work. I swear it's my last work related trip until the end of the summer, but I'm not holding my breath.

Then, on Thursday, the kids will go to their new daycare center part-time for two days. We're doing this in a hope to give them an easier transition between being here at home with Ashely and going to the daycare center.

Mommy & Daddy are pretty nervous...it's a big change for all of us. My biggest concern is actually diet and Tanner's egg allergy. I'm going to have to do a bit more leg work before he eats meals there.

Medical news: Um....not much (we like it that way - and we're knocking on wood!). We repeat labs this upcoming weekend - it will have been 5 weeks since our last set of labs, which feels like an eternity!



Prayer Requests:

For Aiden (www.caringbridge.com/fl/aiden) - he's been having some funky stuff for awhile now, but he's been sick since Thursday and earned himself a trip to Atlanta (his transplant center). Please pray for a quick resolution to his immediate problems, and also some long term resolutions on some of his ongoing medical things.

---

Monday, May 22, 2006 9:38 PM CDT

Randy & I can be not the most attentive parents. I think it comes from all of those years as being DINKs (Double Income No Kids). We're used to doing something without the disruption that two two-year-olds bring.

On Sunday, after doing a big Target shopping trip, we returned home right around lunch time. The kids needed to eat lunch, and we had food that needed unloaded. So, we started the kids on the oh-so-healthy Kids Cuisine meal that consisted of Taco Chips, little burritos, and cheesy sauce to dip it in. I added some applesauce for some redeaming nutritional value.

Then we started unpacking. We were in the kitchen - within five feet of their booster seats...so we could hear, and we were loosely watching them while unpacking the bags. And, then I went to the table to check a little closer.

This is what I found....











And, I think he was quite proud of himself.






You can look in the "Journal History" to see a longer entry from earlier today - and as an update, Daddy spent his lunch hour combing the Toys R Us to come up with a second Baby Doll for Tanner.

---

Monday, May 22, 2006 11:20 AM CDT

Just a quick update...

All is well here - we made a surprise visit to Western Kansas on Saturday to celebrate Randy's cousin, Jennifer's high school graduation. We made it a marathon road trip - we drove out (5 hours), stayed for about 4 hours, and drove back (4.5 hours). We left around 10:30 - got home around 12:15. LONG DAY.

But, it was good to see many of Randy's aunts and uncles who haven't seen the kids yet. We even got to see Tanner & Morgan's Aunt Sherry whom we haven't seen since the end of February. And Randy's grandparents also got to see them for the first time.

The kids had a good time walking around the farm...and climbing the stairs into the house...and walking around the farm....seeing the cows and new baby kittens...and walking around the farm. Unfortuantely, they were in the opposite direction mode in a non-child proofed environment. So, Randy & I got a lot of time in chasing the kids as well...and walking around the farm. We didn't get much of a chance to visit with anyone, since we were...you guessed it....walking around the farm.

Another quiet week for us...our challenge this week is to find another "Baby". "Baby" is Tanner's doll. Grandma Z originally bought HIM for Morgan, but as soon as Tanner saw the doll, he latched onto it (that's ok, Morgan had already latched onto Prayer Bear, which was given to Tanner, not her). We have 3 Prayer Bears now - two we've had for awhile and they are very tattered and worn (two so that we can wash one and Morgan can still have it). The last one I won on e-bay this weekend so that Morgan can leave Prayer Bear (or PB) at the new daycare. That's the objective for finding a second Baby - so that we will be able to leave one at school.

This afternoon, I will take the kids into the daycare to play for a few hours and meet the teachers and other kids. Next week, I'm gone on Tuesday & Wednesday for work. On Thursday & Friday, they will do 1/2 days of daycare, and then on Monday, June 5th, the kids will be full time in daycare.

It is going to be so difficult to not have Ms. Ashley around. We have always joked that our kids have 3 parents - and this is very true. I know that Ashely has loved and cared for our kids like they were her own - learning along with us as we figured out the picc lines and medications that came along with Tanner's care. If you'll remember, she even cared for Morgan for a few weeks while Randy & I were caring for Tanner in St. Louis. Our kids look forward to Ashley's arrival each Monday morning. We always know that when they are in her care, they are in a safe, loving environment.

When we first approached the idea of daycare, we talked to Ashley, and she agreed that it was time. Morgan especially needs the interaction with other kids - and it will also be good for Tanner. They both need to learn how to share, and how to cope in a land other than their own (they spend 95% of their time in our home). It will be good for them, but that doesn't make it any easier.

There is a lot of fear on our side: how will we make sure that Tanner is safe with his egg allergy; will they constantly be sick from the exposure to other germs; will they be able to handle being away from one of their three parents; how will they handle not seeing Ashley and Riley on an almost daily basis? Yes, I know - these are all mommy's fears - not theirs.

So, the next few weeks will be BIG adjustments for all of us.

Check back for updates (and maybe even some new pictures) soon!

Stacy

---

Tuesday, May 16, 2006 3:42 PM CDT

Oh my goodness, the pressure is on. And, why, oh why, is the pressure on!?!? Because, Lisa, Aiden's mom sent you over here to read something funny. Me, funny? No, I don't think so...I think it's my kids that are the funny ones.

Being the mom of twins has not been easy, and as I often point out to my husband, he better be glad we got two the first time, otherwise, I doubt that we'd be having a second. Maybe not, I don't think it would be this hard with one. For my evidence:

1. If we tell one child not to do something, the second one immediately decides that they, too, want to try the same thing. Like climbing on the sofa, smashing food in our fingers, throwing the toys, or eating the dirt.

2. Do you think either child will eat the same thing? No, of course not, they are TWO. I guess the only good thing about that is that Child #1 will usually eat what Child #2 will not, and vice versus. So, somewhere about 1/2 way through the meal, we do a plate swap (yes, for our transplant families out there, I know this is completely not hygenic - but these two share EVERYTHING already).

3. M-I-N-E. That is all two year olds really understand - they don't quite get the concept of sharing. Very difficult when you've operated under the philosophy of "just buy one, they can share it". I totally understand why some twin families have two of everything.


But, really, I do love being a twin mom - it's a novelty. Most people don't get to rock two kids to sleep, watch them play and interact so sweetly. Just last week, our neighbor, Sydney, came over to play. What I often dismiss as routine, Sydney's mom noticed right off - the way they play together. They were standing around the exersaucer, when Tanner hit the music button. They glanced at each other, and at the very same time, started dancing and spinning.

Most people don't get to see such an intense bond between two people - something that will hopefully last them their whole life. I attended a twin's club meeting last week - there were several sets of boy-girl twins there to my great excitement. And, they all said that their best friend was their twin. In fact, one girl twin had just moved back home because she was too far away from her twin brother. Thirty years old, talk every day...I don't have that relationship with my brothers, and I hope that my kids get to share that.

I often worry about whether or not Tanner's liver disease will affect their relationship. Do we give Tanner more attention / time because of his condition? Do we balance that for Morgan? Will she become the protector of her more "fragile" brother? Or will she resent the attention? I haven't quite figured out how to handle the healthy twin / sick twin phenomena. Undoubtedly, it will affect both of them.

Here are some of my favorite "twin" photos of my two....Lisa's favorite one is the double time out picture.

Enjoy!

Tanner & Morgan - being held together for the first time - Morgan reached out & grabbed Tanner's hand. May 2004



Tanner & Morgan after Tanner was home from the kasai. We would lay them side by side, but they'd always end up nose to nose. August 2004



Fighting over a toy on the floor - April 1, 2005



Hugs...September 2005



A DOUBLE Time Out - December 2005



Because it isn't all fun & games - January 2006



Morgan pinning a kiss on Tanner - Winter 2005/2006



Sharing books...March 2006





In medical news....Tanner hasn't been sleeping well lately. I thought it might be Prograf, but since he started to drool today, I'm wondering if it's teething. We don't repeat labs until the weekend of June 3rd, so we'll wait and see.

Thanks for checking in on us!
Stacy

---

Monday, May 8, 2006 10:12 PM CDT

Well, the March of Dimes walk was a lot of fun. It was cold and overcast here...I actually had to go down to the basement the night before and dig out the kids' winter coats.

We tried to do some practice walks before hand, but ended up with a flat tire on our double stroller (you can kind of see it in the first picture on the next page). Thankfully, daddy got it fixed just in time for Saturday's race.

We got there early - and couldn't believe the line of traffic. So, we parked and got signed and had an hour to kill. Thankfully, there was a lot to do and see - including an incredible bubble machine that was continuously pouring out bubbles. Our kids LOVED it (see pictures in photo page).

During the opening ceremoines, there was a ballon launch for the preemies that were being walked for. We got to release one pink & one blue balloon into the air. It was really awe inspiring to realize how many kid were being represented - and it was really neat to see people sporting t-shirts of their little ones. We'll have to do that next year.

The walk started out slow - everyone was channeling through a very small archway of light pink and baby blue balloons. It took about 30 minutes to walk the 1.6 miles. It was a nice walk, but you couldn't go very fast with all of the traffic. Once we got going, the kids settled in.

As we approached the finish line, we were shocked to see a "Team Z" sign. All of the family teams had a sign along the finish line...again, next year we'll take the time to decorate ours with pictures.

Thanks to everyone for their support. Randy & I ended up raising $370 for March of Dimes. We're pretty proud of that. For any of our friends and family, next year we'll probaby do a bigger team - and if you'd like to join us, please do!


Otherwise, things are going well here. The picture on the top of this page is from our new swingset that Grandpa 3 Hairs and Daddy built on birthday weekend. It was actually a Christmas gift from the grandparents (my parents provided wood & labor - Randy's parents provided all of the accessories like slides, swings, hardware, kit, etc). The kids absolutely love it - this weekend, Randy & I are contributing a rubber mulch surface underneath the play area.

That's it for now - hopefully a quiet few weeks.
Stacy

Prayer requests for:

Natalie, a liver friend of ours who got a living donor transplant about 3 weeks prior to Tanner's - she's had some ongoing complications and the dreaded word "retransplant" was mentioned

Cheryl, Haley's mom - Haley was a sweet little girl with liver disease. She passed away last fall - her family struggles daily with their grief. Please wrap them in your prayers.

Isaac, another liver friend of ours who also went through a bone marrow transplant 3 weeks ago - prayers that his bone marrow takes and for healing

Finally, for myself and my family. May 23rd marks the 2 year anniversary of my parents' accident. Much like the kid's birth, Tanner's kasai anniversary, and his transplant anniversary, these dates are difficult to work through. We know that these next 2 weeks will be challenging.

---

Monday, May 1, 2006 8:52 PM CDT

Dear Tanner & Morgan,

Yesterday you both turned two years old. It is so hard to believe that in the blink of an eye - you're no longer my babies. You are very independent little people - who have their own likes and dislikes, and their own way of doing things.

I look back to where we started this process two years ago, and I find it nearly impossible to believe how tiny you were...how very fragile. I remember the nurses telling us how even touching you would hurt you - and now we rough house with you on the living room floor, tickling you until you cry out "all done".

This past year you have changed so much. A year ago, you had just started crawling, Morgan, and Tanner you were still stationary - content to let Morgan barrel around you. Today, you are both running...nonstop. Climbing the stairs, jumping on the sofa - all of the things that two year olds are supposed to do.

Morgan, you are still my indepedent child. You will sit and work on something for long stretches of time until you figure it out. When you are in your concentration mode, you stick your little tongue out to the side - just like mommy does when she's concentrating. It makes me laugh that you would pick up such a small trait that is so distinctly me. Your little wheels turn every minute of the day - and we find it very humurous when you use your wit. You know that you are not allowed to take a toy out of your brother's hand, so when he has something you want, you start to point at things and say "look!" until you find something he wants. And, when he puts down the toy you wanted - you run and snatch it up before he changes his mind. You are a very determined little girl.

Tanner, you are the sweetest little boy that could have been placed on this earth. You do not like to see anyone in distress, and when someone is hurt, you try to find a way to comfort them. Sometimes this comes in the form of a giant Tanner hug - a hug where you run, throw yourself in the person's arms, plant your head on their shoulder, wrap your arms around their neck and squeeze. It's hard to believe that such a comforting hug comes from such a small little guy. And, when your sister is concerned, you always try to find a way to comfort her. You will often bring her Prayer Bear when she is distressed - anything to make her feel better. Your tenderness amazes me.

I love to watch the two of you interact - it's one of those unique things that twin parents get to enjoy. I've seen everything from full blown punches, kicks, and bites -to unprovoked kisses and hugs. You reserve a love for your twin that many of us will never know. Tanner, even though Morgan may not show it, whenever you are out of her sight, she calls out for you "Tanner, Tanner" until she sees you again. Morgan, your brother shows his love each and every day...whether through a hug or bringing you your beloved Prayer Bear, he is always trying to make you feel better. I hope that this love continues to grow, and you will continue to protect each other - especially when Mommy & Daddy cannot.

It has been a fun year to watch you grow and learn. To watch you master the milestones that we one time wondered if you would make. To think about the future and what our little people will end up doing. I look forward to the next year - listening to your speech grow, watching you build your confidence, and letting you start to stretch your wings.

Just promise...don't grow up too quickly on me...

Love,
Mommy


************************************

Every day 1 in 8 babies born in the U.S. arrives too soon. Premature birth can happen to any pregnant woman, and no one knows why. It is a serious, common and costly problem. The March of Dimes is leading the campaign to reduce premature birth by supporting research and by educating the public and health care providers.

In a little more than 2 weeks, Randy & I will be putting on our walking shoes, and walking in the March of Dimes walk here in Kansas City. I find it especially appropriate since Tanner & Morgan will be celebrating their 2nd birthday one week prior to this walk. Tanner & Morgan will be joining us in their double jogging stroller.

As most of you know, Tanner & Morgan were born 13 weeks too soon. At only 27 weeks gestation, they weighed in at 2 lb 3.1 oz & 2 lb 3.3 oz. Tanner was 13.25" long & Morgan was 12.5" long. So very, very tiny.

We've recently decided that this is an organization we want to actively support. Without March of Dimes, I may not have received some steroid shots the week before the kids were born. These steroid shots were given to me as a preventative measure "just in case" I went into labor. The steroid shots help develop the lungs of the baby while in utero. Due to these shots, neither or our kids ended up being on the ventilator.

Here's a link to our walksite. I'll be adding a picture on this website soon that shows both kids with two dolls that were made to look & feel like they did at birth (size wise).

Please wish us well...taking care of our health has not been a top priority these last two years.

---

Saturday, April 29, 2006 7:40 PM CDT

Here are pictures of Tanner & Morgan's birthday cake. A more fitting entry to follow.

Thanks -
Stacy





************************************

Every day 1 in 8 babies born in the U.S. arrives too soon. Premature birth can happen to any pregnant woman, and no one knows why. It is a serious, common and costly problem. The March of Dimes is leading the campaign to reduce premature birth by supporting research and by educating the public and health care providers.

In a little more than 2 weeks, Randy & I will be putting on our walking shoes, and walking in the March of Dimes walk here in Kansas City. I find it especially appropriate since Tanner & Morgan will be celebrating their 2nd birthday one week prior to this walk. Tanner & Morgan will be joining us in their double jogging stroller.

As most of you know, Tanner & Morgan were born 13 weeks too soon. At only 27 weeks gestation, they weighed in at 2 lb 3.1 oz & 2 lb 3.3 oz. Tanner was 13.25" long & Morgan was 12.5" long. So very, very tiny.

We've recently decided that this is an organization we want to actively support. Without March of Dimes, I may not have received some steroid shots the week before the kids were born. These steroid shots were given to me as a preventative measure "just in case" I went into labor. The steroid shots help develop the lungs of the baby while in utero. Due to these shots, neither or our kids ended up being on the ventilator.

Here's a link to our walksite. I'll be adding a picture on this website soon that shows both kids with two dolls that were made to look & feel like they did at birth (size wise).

Please wish us well...taking care of our health has not been a top priority these last two years.

---

Friday, April 21, 2006 9:58 AM CDT

Every day 1 in 8 babies born in the U.S. arrives too soon. Premature birth can happen to any pregnant woman, and no one knows why. It is a serious, common and costly problem. The March of Dimes is leading the campaign to reduce premature birth by supporting research and by educating the public and health care providers.

In a little more than 2 weeks, Randy & I will be putting on our walking shoes, and walking in the March of Dimes walk here in Kansas City. I find it especially appropriate since Tanner & Morgan will be celebrating their 2nd birthday one week prior to this walk. Tanner & Morgan will be joining us in their double jogging stroller.

As most of you know, Tanner & Morgan were born 13 weeks too soon. At only 27 weeks gestation, they weighed in at 2 lb 3.1 oz & 2 lb 3.3 oz. Tanner was 13.25" long & Morgan was 12.5" long. So very, very tiny.

We've recently decided that this is an organization we want to actively support. Without March of Dimes, I may not have received some steroid shots the week before the kids were born. These steroid shots were given to me as a preventative measure "just in case" I went into labor. The steroid shots help develop the lungs of the baby while in utero. Due to these shots, neither or our kids ended up being on the ventilator.

Here's a link to our walksite...there is a picture of Randy holding Tanner & Morgan when they are three weeks old. I'll be adding a picture on this website soon that shows both kids with two dolls that were made to look & feel like they did at birth (size wise).

Please wish us well...taking care of our health has not been a top priority these last two years.

---

Sunday, April 16, 2006 8:02 PM CDT

Happy Easter everyone!

Medical news: Nothing much going on right now (thankfully). Tanner & Morgan have their 2 year old check-ups on Monday (yes, a few weeks early). Morgan will get the varicella (chicken pox) vaccine, and Tanner will then get a course of anti-viral medicine for about a month.

We repeat labs on their birthday weekend, so nothing on that front. Wow...seems so boring.

Fun Stuff:

We have been enjoying the nice weather we've been having around here lately. We did an Easter Egg hunt at the neighbors house on Monday night which was SO much fun. We are so lucky to have 2 neighbor kids that are within months of Tanner & Morgan's age. It makes it so easy to get together and do stuff.

The neighbor girl has a Little Tikes playhouse...and while we were there for the egg hunt, it was obvious that Tanner loved that house. We couldn't hardly get him away from it to hunt the eggs. So, Randy & I decided that he needed a playhouse, too. We want the kids to spend more time outside, and they need some toys to make it enjoyable.

So, I put an add on the Mothers of Twins websites that I belong to - and viola - we came up with a Castle! The previous owners think that we'll be the 4th or 5th family to enjoy the castle - but, we don't care, and besides some fading on the slide, you really can't tell. It cost us $20 for the caslte (retails new for $350) - but we had to spend another $26 renting a Home Depot truck to haul it home. The look on Tanner's face...PRICELESS.

By the time their birthday gets here, they will be all decked out for the outside. We've got our swingset kit, slide, and Lookout Tower climbing wall - and in 2 weeks, we'll have a swingset for them to play on. Grandpa 3 Hairs is coming down to build it.

So, they'll have a kickin' swingset, the castle, Morgan is getting a little foot-powered car for their birthday, the John Deere from Christmas, a small basketball hoop (Tanner for the birthday), and hopefully a sandbox (we have to find a covered one - we can't risk an animal eliminating in a non-covered one). The kids are going to LOVE the outside this summer. Very exciting stuff happening the next few weeks.


BUT...between now & then some not so fun stuff. Here's a list of our prayer requests for this week.

Chris - Tanner's Boston Marathon as he runs the Marathon on Monday - 26.2 miles is a LONG ways to run

Randy - 4th try on the Professional Engineering test on Friday

Caden - a little liver friend of ours who got his liver transplant on Saturday night / Sunday a.m. in St. Louis

Emma - another liver friend who is battling some serious respiratory issues

Anthony - our liver friend from Louisianna who is battling a staph infection

Aiden - our liver friend from Florida who is battling ongoig allergy issues

Randy's Uncle - just had surgury to remove a cancerous tumor

Randy's Grandma - fell and hit her head on Friday - is in the hospital recuperating

We hope everyone has a wonderful week!
Stacy

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Tuesday, April 11, 2006 9:40 PM CDT

Hey all -

I've been majorly procrastinating on getting this post up...I meant to do this a month ago.

Every year, the ALF has runners who run in the Boston Marathon to raise money for Liver Research. As inspiration for the runners, they match the runner with a person who is/has battled liver disease. This year, Tanner was matched with a runner for ALF from nearby Omaha.

Why is this so important to us? Well, 80% of kids with Biliary Atresia end up needing a liver transplant. They don't know what causes BA, therefore they can't "find a cure". Yes, we've been told that Tanner no longer has biliary atresia because of transplant - but transplant is really trading one set of problems for another. Research is our hope that another family doesn't have to go through what we have been through the last 2 years.

If Tanner had been born 40 years ago, we would have been told that there was little to no hope of him living past his second birthday. That second birthday is just over two weeks away. I cannot imagine my life without those "big hugs" from my "little guy", without his smile, his little giggle when I tickle him under his chin, or his newfound ability to say "I love you".

Here's Chris' letter...you have all been so generous to us this past year, that we can't ask for a lot of donations, but if you're looking for a worthy cause this year, please consider donating to ALF through Chris.

Thanks -
Stacy


-----Original Message-----
From: Chris Kilroy

Hello all!

It is Tuesday the 11th, T-minus 6 days to race, and I'm ready to go. I'll be leaving first thing Thursday for Beantown. Base camp will be in Dedham, MA--my parents' house. My daughter, Hallie and two sons, Ted and Seamus
will be traveling with me. My wife Pam was going to come, but cancelled due to her Dad's health (he is here in Omaha, awaiting a heart transplant).

In terms of fundraising, you all have really come through for my charity, The American Liver Foundation. I'm about 85% to my goal of $5,000. Thanks to all. I ran a special, where those donors who gave $100 or more have an
honorary mile named after them. I've made up laminated name cards for each honoree. I'll stop at each named mile marker and have a spectator snap a shot of me with a sports camera that I'm carrying. I am thrilled to report
that I've sold 20 of 26 miles. I even had someone 'upsize' their donation today from $50 to $100 to get a mile.

Hopefully, all of the stops will keep my legs a little fresher in the hill territory of miles 16 thru 22. Don't expect a personal record, though. If you haven't donated but wish to, please see the attached instructions below.

My race begins at 12:30 EST on Monday April 17th. You can track me online at www.baa.org, and input my race number--18307.

Thanks again to all!

Chris Kilroy

*************************************
To donate:

1) Go to www.liverteam.org.

2) Click on sponsor a runner

3) Click on make an online donation

4) Scroll down and click on Chris Kilroy

5) Fill in the pledge form

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Saturday, April 8, 2006 5:02 PM CDT

Quick Update....

New photos from the (chilly) Easter Egg Hunt this weekend.

Tanner is doing great. We think he has some mild seasonal allergies - he was sneezing a lot this week with a clear, runny nose. So, we've been giving him some Benadryl.

His allergy tests came back. He was negative to all of the different items that we tested. So, the reaction he had at Chili's must have been a cross-contamintion with something. I'm grateful for that, and a bit scared at the same time. He had bad hives and diaherra - there couldn't have been that much egg in whatever he got. I guess it's a good reminder that his allergy is serious, and something we cannot ignore.

Otherwise, all is well here. Tanner's speech therapist was really happy with the progress he's made in her first two weeks. He's now getting the second syllable on words and getting the final consonant sound in there, too (he used to just say "uuh" for up - now he actually says "uhh-p".

Have a great week with a very happy Easter!

Stacy

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Friday, March 31, 2006 9:34 PM CST

****Please note the picture above...this picture is Tanner with his baby that we got him last year for his birthday. This baby is a doll that was custom made to be the same size (weight, length, footprint, head circumference) that Tanner was at birth.****


Our life with twins and toddlers in general....

I took Friday off as a mental health day. I've kind of been out of it with work lately - the traveling has dampened my spirits and I'm a very much 110r 10ind of person. I need a break to get back to that 110but I'm just not sure that that will happen until I'm off the road for a few months. Not this week...back in Denver Tuesday - Thursday.

So, while off today, I decided to give each kid some alone Mommy time. We hardly ever get to do this, so it was as much a treat for me as it was for them. I loaded Tanner up & we went in for labs (yes, I agree - not very fun mommy time). He was SO good. I let him walk all the way in like a big boy - no stroller, no carrying - he just had to hold my hand in the parking lot.

He was perfect for labs - didn't flench or cry when they stuck him. I can't say how wonderful the lab tech, Sharon is with the stick. She is AWESOME. Tanner was quite the clown for all the folks in the waiting room. And, the good news is that his labs are pretty good, too.

Brought him home, and I took Morgan out. Our first stop was at the daycare the kids will start June 1st (more below). Morgan was really good - and really seemed to like it (phew). Then we went to the mall to get Morgan's big feet measured. After being in the mall for 30 minutes (and away for her brother for about 3 hours), she turned to me with the biggest, saddest eyes and said "Tanner?" Yes, she missed her brother. So, we finished shopping and came home for lunch. It must be nice to have someone that loves you that much.

Yes, the kids are going to start into a center-based daycare on June 1st. There is no way that we could have made it through this last year with Ms. Ashley - but the kids have reached the point where they need the interaction with the other kids. It's going to be a big shock for them, but in the long run, a better solution. Ms. Ashley agrees and is going to move to another family with twins who will be about 5 months old at the time.

We are excited about the preschool. It is a modified Montessori curriculum (which emphasis self-reliance & self-directed learning). They have a very structured day with lots of outside time - and the location isn't too bad. This same business is going to open a new center that will be closer to Randy's work this fall - so we may transfer the kids to that center in October or so. For now, we'll be in the Shawnee area.

And, finally from the Toddler corner, Tanner is really progressing with his speech. He is making more attempts to speak...such as yesterday. Randy comes storming out of the bedroom saying "that's it, I'm going on a diet". I asked him what was wrong, he said Tanner tried to lift up his shirt and then said "baby". It took me a minute to figure out what Tanner was really trying to say...."Belly Button". Ok, he doesn't get all the syllables, but belly button is one that we've been working on (for the "b" sound), so I realized that Tanner was really trying to lift his shirt and find his belly button. Poor daddy....

Have a great week!
Stacy

---

Sunday, March 26, 2006 12:44 AM CST

EVERYONE should get to have twins...I tell you -these two can be such a crack up. Of course, only some of the things they do are "twin-ish", but I guess having two at once gives us twice as much to laugh about.

We've decided that Tanner is going to be our flirt. Oh my - we were in Target last night getting hair stuff for Morgan (see pictures). Well - there were two girls - maybe 7th or 8th grade looking at hair stuff, too. Both had long blond hair. Tanner kicks back in in the cart, and starts smiling and grinning at them. They start talking about "oh how cute he is" - and then he really hams it up, turning his head to the side and glancing back over at them. Then, I inadvertently stepped in his way - and the kid sat straight up and started slapping at me to get out of the way!!! As soon as I moved, he kicked back again and started grinning. As they turned to leave, Tanner sat straight up and started waving and saying "bye bye".

Tanner is also our clown - he'll do anything for a laugh. Last weekend, I kept teasing him about his "yukcy toes" - and then he's stick them in his mouth and giggle and giggle. Well...now he won't stop. He's always trying to make someone laugh.

And, final Tanner story - yesterday I caught him walking forward and then walking backward about 5 feet. Back and forth, back and forth, laughing occasionally. I finally figured out that he was playing with his shadow from the window behind his back.

Morgan decided on Friday that she wanted her hair like "Rywee hair". Rylee typically has her hair in little rubber bands - so Ashley put one on Morgan. She loved it. I did it again this morning (Mommy is not nearly as good as doing this as Ms. Ashley is). I got the mirror and showed Morgan - her reply "cute". She's still got them in.

Medically - Tanner did have an allergic reaction last night when we went out to eat at Chili's. He had some sauce from Cinnamon Apples around his mouth and broke out where the sauce was. We aren't sure what caused him to break out (no egg listed in the ingredients - could be a cross contamination?). So, we dosed him with Benadryl and the hives went away after about 15 minutes. We'll contact the allergist on Monday and see if we need to think about doing some additional allergy testing. Otherwise, we have labs drawn next week for regularly scheduled liver labs.

Non-Medical Stuff

I got most all of my stuff sold at the twin garage sale (yay!). Gone is the double stroller, swing, high chairs, and lots of itty bitty clothing. I was so excited because I only came home with a fraction of the stuff I went away with. What'd we do with the cash - we went and bought a new vacuum. How exciting are we?

Have a great week!
Stacy

PS - Before someone turns us into child services - those bruises on Tanner's head are from walkling into the edge of the dining room table. He's tall enough now that he can't walk under it - yet he doesn't seem to remember that!

---

Tuesday, March 21, 2006 12:22 AM CST

It was one year ago today that we captured the following picture.....



This has always been one of our most commented on pictures - it truly shows how good Tanner felt with that new liver. I remember the day distinctly. We did a small outing that day and went to a Babies R Us looking for some special sunscreen wipes. Well, we didn't find wipes, but we did find this hat to help ward off the sun. When we got back the apartment and put it on him - the kid went nuts. This is one of about 5 pictures I caught that I absolutely adore.

Compare that picture to the top picture - where did my baby go? He's all grown up now.

This morning, Morgan was first up for diaper change and clothes. When I went to put her down, I took her (as I always do) and took her over nose to nose and said "say hi to Tanner" - she said...."Hi Tanner - I love you". Totally unprompted....now that, that helps make up for all of the work and sleepless nights that has gone into having twins.

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Sunday, March 19, 2006 7:17 PM CST

Quick note...we are buckling down and getting ready for a spring snow or ice storm here. It's supposed to start up later tonight and last through Wednesday. I knew it was too good to be true. Hopefully one last fling for winter and then spring can really be on her way.

We had a busy week. I was in Mississippi & Memphis for a few days. I hate being gone, but I did get to see a college buddy of mine, and it was so good to see Kari. I haven't seen Kari since shortly after the kids were born (right before Tanner's kasai). It was so good to see her and her 5 beautiful kids. At least there is some benefit to traveling for work.

We went to Grandma Crazy Woman & Grandpa 3 Hairs this weekend to borrow Cousin Katelynn's crib for Tanner. We had borrowed a crib and it needs to move along to another family. We had hoped to have our kids out of the cribs - but that isn't going to happen so soon. Could be a twin thing - could be a preemie thing - could be a lazy parent thing!

This week is the Greater Kansas City Mother of Twin's Garage Sale. I have all kinds of stuff that I've gotten ready to sell - and I have to drop all of that off on Thursday night for the Friday & Saturday sale. We're selling quite a bit of stuff - and I hope to get rid of it all. It does mean, however, that daddy will be stuck with the kids (again) for several nights this week while I'm working at the sale or dropping stuff off.

Otherwise, Tanner starts speech therapy this week (FINALLY). I'm hoping that he won't need it for very long as he's already come a long ways in the last few weeks. He's getting some second constannt sounds now, and even a few two syllable words. We'll keep hoping.

Have a great week - enjoy the new pictures.
Stacy

---

Sunday, March 12, 2006 7:24 PM CST

Greetings everyone....

Computers are finally back on after a vicious afternoon of storms. We had hail that ranged from 1.5 - 2.5 inches in diameter for a brief moment this afternoon - followed by lots of pea & marble sized hail this evening. Verdict is still out on whether or not the house sustained damage. I should be grateful for the rain, but I could do without all the hail.

Things are going well here. We got Tanner's latest labs back in the middle of the week. The good news is that all of the White Blood Cell stuff is well within normal limits. This includes his white blood cell count, hemoglobin, hematocrit, and neutrophils. A few of the numbers are still wacky - including the monocytes. Monocytles are what fight viruses. This number has consistently been high since MAY when his monocytes went wacky. They've tested for all the viruses that can cause a lot of problems in liver kids, so I guess we'll keep riding along and see what happens.

His liver is fairly happy. He has one number which got out of wack this time - the ALT has been increasing the last 2 lab draws - from 28 in early January, to 40 in February, to 59 this time around. I really don't like that - but none of the other numbers are wacky. And, this number has had a tendacy to bounce around some on Tanner. Sigh...so again, we'll run labs in a month and see how that shakes out.

Otherwise, we had a nice weekend. We really didn't do much of anything - and that made it almost perfect. We did our usual errands on Saturday morning (Target & the grocery store), and even managed to stop off at Pet Smart where we let Morgan see the dogs. She is truly our animal lover and she had such a good time petting the "DOGGIES". We then came home, and went over to see our neighbors who have new outside cats. Morgan then got her fill of chasing the cats all over the yard and petting them. She is definitely our animal lover. After nap we went to the park and then went for a short walk down our street.

That all seems like surch "normal" things - but we don't take it for granted. We have been so blessed with Tanner's good health this year post-transplant - we are truly blessed to be able to do all the little things without having to tote around IV lines or bile bags like some of our other transplant friends do.

Friday was another milestone for us - it marked one year from the last time that we've had to stay all night in a hospital. We haven't been back in since he left the hospital 10 days after his transplant. I cannot tell you how good that feels - to not sleep on the little window seat that is never warm enough - getting up periodically throughout the night to sooth your child back to sleep - wearing your pajamas around the hospital, acting as if it were home. I don't miss it!

Instead of staying in hospitals, I've been on the road. I fly out again tomorrow to go to a customer's office in northern Mississippi. I get to knock another state off of the states in the US I've been to (currently missing Idaho, Michigan, Louisianna of the lower 48). However, it also marks the 5th trip I've made out this year - with another 3 to go before the end of May. I'm refusing to travel June - August. I'll return home on Wednesday.

Have a great week!
Stacy

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Thursday, March 9, 2006 7:59 AM CST

A new journal entry later on....

In the meantime, please go over and check out Anthony's page. He's celebrating 2 years with his daddy's liver today.

Wish him luck & congratulations - it's really a great milestone!

Stacy

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Sunday, March 5, 2006 2:06 PM CST

Where did my babies go?

I know, I know, every mom asks that at some point, but the kids have just grown up over the last few weeks. A few examples:

Morgan's vocabulary has blossomed the last few weeks. She has words now that we didn't even know she had. We sat down to dinner the other night - and she points at the food - and says "Hot Dog" (yes, I know, not the healthiest of meals), "grapes", "cheese". Um, yes, all correct - but when did you learn those words???

Yesterday in the store, as we were passing by some books - all of a sudden I hear Tanner say "Elmo" - not a big word, but for Tanner a big step (it's a 2 syllable (sp?) word).

For the last few days - every time Morgan had to go potty - she's start to fuss, make funny faces, and say "stinky" - this is what we've always said when we change their diaper, so while not accurate - it's what she knows. We sat her on the potty seat today - and viola - she peed in the big girl potty. So, we put big girl panties on her and let her wear them for awhile. We tried again this afternoon with no luck - we'll keep trying.

Today, we also took out the bath tub seats and let the kids just sit in the tub. The bath tub seats have been wonderful - we haven't had to worry about the kids falling into the water, but they are big enough now we shouldn't have to worry about that. They had a ball being "so big".

Soon, we'll move the kids down to the basement and get them ready to transition over to their toddler room and big kid beds. I'm beginning to realize that they may be ready for that - but mommy doesn't know if she is.

It just seems like the other day that we had our little 2 lb 3 oz kiddos - and now, I honestly can't remember them being that small and tiny. I look back to one year ago - Tanner was just learning to sit on his own. He's now running & climbing. It amazes me every day.

We had labs done on Saturday. I'll post an update when I get them back - but I'm going to be in North Caroilna & Tennesse for a few days.

Have a great week!
Stacy

PS - I put the photo up above on her to show how BIG Tanner is getting - doesn't he look tall? And, yes, those are Christmas gifts in the background. We never got a chance to celebrate with Morgan's godparents due to RSV at the first of the year. Her godfather was in town this week and delivered them. Thanks Greg & Lisa for the fun gifts - the kids are enjoying them (and so are we!)

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Thursday, March 2, 2006 6:54 PM CST

You go this way.....



And, I'll go that way....

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Tuesday, February 28, 2006 6:18 AM CST

So where did we leave off....

After Tanner had left us and was in the OR - I went had a very nice hot shower. I knew that the first few hours for Tanner would consist of prepping him - IVs, putting him to sleep, and getting a broviac (semi-premanent IV set up) - so I knew I had time to at least enjoy that much. I might have eaten breakfast - I don't remember.

The rest of the day was spent in our little waiting room. People came and went...my dad, Randy's dad, Randy's aunt & uncle, his sister, our nanny, & our little Morgan. For some reason, it was very important to me to have Morgan there with us - even if she spent the majority of the time in the hotel, I wanted her nearby - just in case.

Periodically throughout the day, we would get updates (he's doing great - Grandma's doing fine). Finally, around 12:30, we were told that Grandma's liver was out and headed to Children's. She was fine - and they were ready to remove Tanner's old liver.

A few more hours passed...the GI team came in to update us. They had been in to see Tanner and the "old liver". We were told that the old liver was really ugly - green & gnarly with lots of bumps. Our GI doctor told us that he thought Tanner might have had 6 good weeks left with that old liver before things got really bad for him.

The TV in the corner of the room droaned on all day (I think CNN) - but I really don't remember what was going on. Our coordinator Penny came in frequently to visit with us - lift our spirits - and make sure we were taken care of.

Finally around 4 p.m. - we were told that both patients were in recovery. Elmer, Sherry, Al, & Mary Lou headed over to see Loretta - Randy & I stood by and waited for Tanner. Dr. Lowell came out to talk to us - when he came into the operating room, he smiled and gave us a big thumbs up. I can't remember his exact words - but it was something along the lines of things went "better than expected" or "very well". When he left, we were told that Dr. Lowell is always cautious, and if he thought things went that well - then things had really gone extremely smoothly. Dr. Lowell got to break the news to us that Tanner was breathing over the vent - and he thought they were going to try to extubate him (remove the breathing machine) while he was in the surgical recovery room - and that we might be able to catch a peak at him while they transported him from the OR into the ICU.

So, we patiently waited outside of the doors - and sure enough, about 15 minutes later, our little guy came rolling out. He looked so good. You have to realize, we expected Tanner to be on the ventilator for 2 - 3 days post-op. So, for him to come out of the surgical recovery breathing on his own - was nothing short of a miracle for us. It was a true indication that he had made it through the surgery fighting the entire time. And, when we saw him in the hall - we could even see a flicker of his eyes.

We went down a few floors (I think) to the PICU - we had to wait in the waiting room while they settled Tanner in and the nurses traded notes. It was a long hour waiting for that transition to be made. Thankfully, our coordinator, Penny peaked in - one of her friends was taking care of Tanner, and she got us in earlier than would normally be anticipated. Tanner was doing so well - he was all settled in nicely.

And, as Randy & I looked at him - even with the lights off in a dimly lit room - we could tell that the jaundice was subsiding. Now, part of that was from the blood he received during transplant - but part of that was due to the "good liver" he was now sporting. We were mean parents and had to turn on the lights to check out the decreasing jaundice - Tanner was somewhat awake - able to respond to our voices - but obviously in pain.

We were just overwhelmed to see our little boy - that he'd made it through - and that already - even with so many tubes, drains, wires, and leads on his body - he looked healthier. His little toes had started to turn pink - and his once swollen belly was now flat.

We left Tanner to go over and see Grandma. Grandma was drifting in and out of consciousness - she seemed to be in more pain than Tanner was. But, she had a look of peace when we told her how well Tanner was doing.

We ate supper at Applebees that night in the hotel. It was a quick in and out for Randy & I who wanted to get back to see Tanner - but there was a lot of joy and relief at that table that evening.

And, after we had seen Tanner, we had ice cream with Sherry and Randy's Aunt Mary Lou. I don't know why the memory of having ice cream sticks out so much - but it does. It was the cumilation to the day.

The next days are a blur. While Tanner was in the PICU, the hours of 7:30 - 10:00 were for rounds. You either had to be in your child's room and stay there - or not be around. I would get up around 5:00 - quickly shower and head to the PICU where I would spend a couple of quiet hours with Tanner. Then, I would head back to the hotel, and we'd go to see Grandma, grab a bite to eat, and then go back and see Tanner. Reapeat that about 3 times a day.



Today, we're quietly celebrating. It is a celebration, but there are also a lot of raw emotions wrapped up in this anniversary. We're celebrating a healthy child who's been given a second shot - but why should I be so upset and sad? I think our liver friend, Lisa, put it best - what parent should have to celebrate that their child was given a second chance? I guess we're mourning all that we also lost on this anniversary - the normalcy of a "regular" kid, all the lab draws that Tanner endures, extra doctor appointments - I know that that is what keeps my child healthy - and I'm willing to do all of that & more to have him here - but that isn't the way it's supposed to be. So, yes, we are celebrating - the tears are tears of both joy & sorrow. Joy for the child that we have and the grandma who was so willing to step to the plate - sorrow for the pain he & Grandma have had to endure, the lifetime of questions he'll answer about his transplant, and the surrendor of our normal life.

In the future, Tanner will qualify for Make a Wish - and we will let him have one. Many folks will say "but I thought that was only for dying kids". It's not - it's for kids with chronic conditions that ultimately alter their lifestyle. It's to acknowledge all the extra nonsense that they go through. I often thought - oh, Tanner's doing so well, we wouldn't do that. But, on a day like today, when I realize all he's lost, I'm looking forward to the opportunity for him to do something special.

---

Sunday, February 26, 2006 10:09 PM CST

Wow - 3 journal entries in 2 days -that's almost a record. If you'd like to see other weekend entries, check out the history page.

As the hours close in on the transplant time, it's very difficult. Even though Tanner's transplant was on the 28th, in my mind, it's was also a Monday. So, a part of me will feel like tomorrow was the anniversary, and not Tuesday.

I've spent a lot of the evening going through old pictures. Wow...we had slowly watched Tanner turn a grotesque shade of yellow. It's kind of like watching your kid grow - you know they are growing, but you don't necessarily realize how much they've grown. We watched Tanner turn that greenish-yellow color, so we never realized HOW bad it really was. Looking back at those photos are so scary. And, the sad thing is, with a bili of 10 - Tanner's bili level wasn't even *that* high. We met kids who were literally the color of a basketball.

So here is Part I of my memories of the transplant journal...

We were to check in at 2 p.m. on Sunday. I remember being late to check in to the hospital. We weren't *really* sure where Grandma needed to be - and the 2 Grandpas and Ashley had just arrived. So, we were juggling suitcases and all kinds of stuff between the apartment, hotel room that adjoined the hospitals, and the 2 hospital rooms (after everyone got settled).

I stayed with Tanner that night - we had to share a room that evening. One of the award shows was on - and the other mom watched it all evening long (loudly). We were the "last in" that room - and as is the custom in most hospital rooms, the room farthest from the door is the coveted space with a window seat/bed for the parents. We were stuck near the door - without a view.

The mom of our neighbor made frequent trips out past Tanner's bed for smoking breaks - and awoke Tanner twice that night. What she failed to realize is how difficult it is to put an infant who is NPO (without food) back to sleep.

By 4:00 in the morning, I had started walking the halls with Tanner to try to keep him quiet. It was the only thing that kept him from crying. Randy showed up around 5:00 a.m. - and we rotated who held Tanner and who pushed the IV cart. It was so difficult carrying your son through a hospital corridor, and wondering if your last memories of holding your child are going to be him crying and screaming at you because he hasn't eaten.

The surgical resident came to see us - and answer any last minute questions. Then, the head nurse got the call that transport was on the way to get us. Around 6 a.m. - we walked downstairs into the surgical waiting room. The anesthesiologists came out and talked to us - told us the risks, what they were going to do, how long the surgery was anticipated to take (8 - 10 hours), how frequently they would update us (every 2 hours), and what to expect when he came out of surgery.

They left for a few minutes - as we held Tanner and tried not to cry. We tried so desperately to be strong for Tanner. I believe it was around 6:30 a.m. that the anesthesiologists took Tanner from our arms. I still remember him looking over her shoulder at us as they went through the double doors into the operating suite. The most difficult thing that we have ever done is let Tanner go through those surgical doors. The fear, the pain - we just wanted to take everything away from our little one. It just wasn't (and isn't even now) fair that such a little guy had had to endure so much in 10 short months.

After a good round or two of crying, I have to say that I was completely calm the rest of the day. I knew that this was God's plan - and that Tanner didn't have another option. Saying no to this surgery would have been a death sentence for him. We trusted Dr. Lowell (the surgeon) and the hospital staff. We were at peace with our decision.

We were then ushered to a private waiting room in the surgical waiting area. The waiting area was crowded that day - and we got a lot of looks from families who didn't even have room to sit down when we came and went from our private little room with extra empty seats. I remember wanting to say to them "ear tubes are not the same as a liver transplant" - I wanted them to know just how lucky they were that their kid was in for something "so simple".

I then went to the hotel room to shower and change - make a few phones calls - and update the website. After that, Randy & I stayed at the Children's Hospital all day. Grandpa 3 Hairs, Grandpa Z, Aunt Sherry, Great Uncle Alfred, & Great Aunt Mary Lou rotated between Children's and Barnes-Jewish where Grandma was. I'm pretty sure Grandpa Z wore out a pair of shoes that day walking between the two waiting rooms. And, occasinoally, our nanny would bring Morgan into see us - brighten our day - and keep our sense of balance.

Part II - the rest of the story will follow over the next day or so....

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Sunday, February 26, 2006 12:17 PM CST

Oh, the party was so much fun! And I'm so exhausted! (So are the little ones)

We had several last minute cancellations due to illness - and to all of you who weren't didn't come due to illness - THANK YOU. We promise to get together sometime soon, but it's best for Tanner (and some other kiddos that were here who alos have health problems) to stay has healthy as possible.

We had a wonderful evening - and our house was all clean by 11 a.m. this morning. Lots of food and goodies left over - so, we'll be celebrating all week long. We did have such a wonderful time. Thanks to everyone who brought gifts (totally unnecessary - but thank you), sent flowers & balloons), cards, and attended. It really helped us to celebrate.

Grandma & Grandpa Z left for Colby this morning. Aunt Sherry and Al went back to the airport. So, it's just Mommy, Daddy, & the kids. We'll enjoy a quiet few days - we are hoping to go out for dinner on Tuesday evening to celebrate as a family.

I'm having problems getting pictures to post here - so, I've uploaded them onto the flickr website - you can go here to see them. There are also some a few random photos in my flickr account. http://www.flickr.com/photos/tazmoz/

More posting to come soon - but for now - a nap!

Love -
Stacy

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Saturday, February 25, 2006 11:48 AM CST

*****The Photo Program I'm using isn't working right now - I'll add photos soon********


Today is the anniversary of the day that Penny, our transplant coordinator called to tell us "Grandma's a match". Oh, I know the emotions that I went through that day - I can only imagine the way that Grandma felt.

It was a full two days of testing for grandma - blood work, ultrasounds, EKGs, and eventually even an MRI. She had to meet with multiple different doctors including a psychiatrist to make sure she wasn't off her rocker (amazingly - he thought she was fine!)

Penny called at 5:05 p.m. to tell us that Grandma was a match and we were to check into the hospital on Sunday afternoon at 2 p.m. Grandma at Barnes Jewish and Tanner at the Children's Hospital.

From that moment on, it was a sprint to get ready. We called and rented a "corporate apartment" (a furnished 2 bedroom apartment) for the month of March. Prepared to move into it - called all kinds of family & friends to let them know what was going on. We even went and purchased an exersaucer that night to keep the kids busy.

On Saturday, we moved into the apartment in St. Louis and set up house. We went to Sam's Club & Target and purchased food & groceries to take us through the next few weeks. Put away clothes, washed clothes, and packed bags for the hospital. It was SO nice to have an apartment with a washer and dryer, 2 bedrooms, computer hook-up, and living room for our stay.

And, on Saturday, Tanner hit a milestone -he was finally able to sit unassisted (albeit for short periods of time). His big ol' belly was a big obstacle for him, but he did manage to sit unassisted for the first time that day. Amazingly, even though his abdominal muscles were cut through for the surgery, he was sitting on his own again in a short week.

Over the next 2 days, we had all kind of folk come in. Grandpa Z met Grandpa 3 Hairs in Kansas City, and drove with our nanny Ashley to St. Louis. Randy's Uncle Alfred & Aunt Mary Lou came in to be with Elmer and help manage having 2 people in patient. And, Aunt Sherry came in to help out, too.

And, most importantly - our friends, family, neighbors, and even a few people we don't know - started praying for a very successful surgery for both Grandma Red & Tanner. Those prayers were SO important to the success of the surgery and the wonderful year since.


And....now we're getting ready for the party at our house to have a true celebrations.

The view from the entry way....

Notice the cool thing-y having from the arch, the toule with lights along the railing, and the flowers and decoration in our open case (shown below closer up).



Here's the bar - just waiting for all the desserts - after all, it is Mardi Gras!



Here are beautiful flowers provided by my "cousins", Darrell, Wendy, Sadie, Isaac, & Dune.

And, her are Tanner & Morgan inspecting the GIGANTIC SINGING balloons that Grandma Crazy Woman sent. We'll miss not having Grandma Crazy & Grandpa Three Hairs today - but we'll celebrate with them soon. Tanner still isn't sure what to think of those balloons.



More party pics comingn soon!!!!

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Wednesday, February 22, 2006 10:31 PM CST

It's WHEN!?!??!


It was a year ago tomorrow that our transplant Penny called us. We were reviewing Grandma's schedules for tests and such, so I was expecting her to call me back.

She was very calm in the conversation, and casually mentioned "well, if Grandma is a match, we'll do the surgery on Monday the 28th". Now, keep in mind, that since February has 28 days, the days and dates match up between March & February.

So, I said "that will be great - it will give us about 4 weeks to still hope for a living donor, we'll have time to make arrangements for lodging in St. Louis, and if it happens before then, we'll be ready. This will give us time to prepare."

I'm not sure how many time she had to explain that we were talking the UPCOMING MONDAY - a few short days away. It finally clicked and I thought....OH MY GOODNESS.

We had our "emergency bags" packed, but I was not packed and prepared to be gone for a month. We didn't have lodging arrangements made, and Grandma was headed our direction without the knowledge that the living donor surgery could be so close.

Needless to say - I wrapped up everything related to work, called the boss, and headed out the door. I didn't do much of anything related to work for the following 5 weeks. I am very blessed to have a job where I not only have understanding bosses & owners who allowed me to put family first, but great co-workers who took care of everything while I was gone. When I came back, things were running smoothly (thank you Arlene & RT for picking up the ball while I was gone!)

I remember packing nearly anything that seemed necessary in the 2 cars the next 12 hours. Extra clothes, toys, boxes of diapers, wipes, bottles, formulas, medicine, a pack and play, a laptop computer - and we still didn't take enough stuff! Grandma ended up buying an exersaucer for Tanner while we were in St. Louis (it's one of the best investments ever made).

The next few days are tough...we're dealing with so many emotions associated with Tanner's transplant and everything that we've been through the last year and a half. The twins' birthday was also hard - but this milestone may be even harder.

However, we are looking forward to celebrating this anniversary. We realize how fortunate we are to have had such a smooth ride. Low white blood cell count, anemia, and an egg allergy have been our "bumps" - but those are so small compared to many of our transplant friends.

Stay tuned...more recollections coming in the days to follow.

Stacy

PS - Tomorrow morning, our hometown newspaper will be running a follow-up story on Tanner's liver transplant. A link to the paper is below. You'll have to search for the article.

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Sunday, February 19, 2006 7:57 PM CST

Greetings all!

Nothing medical to report here. We are closing in on Tanner's one year transplant anniversary, so there will be probably lots of posts as we get closer to the actual transplant day. So, stay tuned over the next 10 days!

We got the office remodeled this weekend. Now, some folks have asked - did you paint? Um...no, a bit different than that. I swear, we can never have enough storage. So, we added some cabinets - the upper ones and then the ones between our two areas....


And, we put down hardwood floors and a new shelf. As you can see, it's already full - and that is after I picked out some of my college books to finally get rid of (am I ever really going to need that Calculus book!?!?)



It was a very productive weekend - and it is so nice to have it done. Thanks to Grandpa 3 Hairs & my little brother for coming down and helping us out.


Otherwise, we think it should be known that we are raising squirrels. Our kids are just a bit nutty....

If you thought last week's timeout picture was pretty good - look at this one:




We found Tanner & Morgan putting their Prayer Bear & Baby in each of their actual time out corners. They then expect us to set the timer - and when it goes off, they get them out and give them a hug, and Morgan will even say "I love you" to her Prayer Bear. Yes, it's funny - but it does make me wonder where they come up with this stuff.

Morgan got herself in a bit of a mess tonight. She was throwing food at the supper table and when she got down, continued to move around the food that she had thrown on the floor. As daddy starts to come towards her, she says "I'm sawwwy, Daddy. I wuv you. Nigh nigh." Three tries to keep herself out of time out (it did work).

At 6:00 p.m., Tanner & Morgan were both BEGGING to go "nigh nigh". We read special book, did clean up, all during their pleas of "NIGHT NIGHT". Finally, we give Tanner his medicine and send them to bed at 6:30. They get their bottles, get in their cribs, and promptly start laughing and giggling to each other. Ninety minutes later - and they are still in their squeaking, laughing, and going through all of the different words that they know.

Their speech has come a long ways in the last few weeks. They now know their animal sounds (yay!) and Morgan is working on colors (everything is still yellow). But, she's pulled a few words out that we didn't know she had "downstairs" and "Einsten" (it sounds more like outside, and is for her Baby Einstein videos). She's also figured out that "Please" will get her further than just "help" - and if she every figures out how to use them together, Lord help us.

And, finally a "their too smart for their own goods" story. This evening, we change them in their room, and Morgan beats us out. We found her sitting in our recliner - with the remote control. She kept saying "Einstein" - and had even managed to turn the TV to channel 88 (which is the channel our DVD plays through). Not the easiest of tasks since 88 is not in our programmed channels, and you actually have to hit the numbers to get there. The girl is going to give us problems.

Party this weekend - please RSVP if you haven't already. We're expecting 50 (eeks!) - and I don't have the menu set yet.

Stacy

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Tuesday, February 14, 2006 6:23 PM CST

Happy Valentine's Day!

All is quiet here - it was a bit crazy at the end of last week. Randy & I both had a bout of stomach flu bug. Thankfully that is gone - and so far the kids haven't caught it. But, unforunately, Grandpa 3 Hairs was here and DID catch it this weekend. He can attest, it's a nasty little bug.

I'm off road warrior duty for awhile. Good thing - because it's going to be CRAZY around here for a few weeks. We're redoing the office this weekend - and next weekend, is the big party. So, tonight, Wednesday, & Thursday nights will be spent getting ready (varnishing the new bookcase & trim as well as filing taxes & cleaning out the office), Friday night & Saturday will be spent installing new cabinets and hard wood flooring, and next Sunday we'll collapse in exhaustion.

All of that - while getting ready for the party. Recipes to try - as well as all of the other details to work out. I should be more worried about it - but I'm not. We're excited - the guest list is growing and we're going to see people that we haven't seen in a very long time. We're SO excited.

Medically, nothing much to speak of. Tanner's lab results came back for the allergy stuff. For our numbers moms out there (Lisa & Tammy) - his egg was a 3.52 and his total IgE was 87. Now, that makes Tanner's egg allergy a Class 3 (Class 1 - 6 being the levels - 6 being the worst). So, a "middle of the road" allergy. His Ige tells how reactive he might be - the 87 is high (and the allergist's nurse kept telling me "it's very elevated") - but I think it's actually pretty good. It could be because we know other kids whose numbers are much more extreme. So, I'm hopeful that this indicates he may very well outgrow this allergy (yay!).

The speech therapist was here this past weekend. Morgan is testing at the 19 month level overall (20 month verbally & 21 month cognitively - how that averages to 19 months, I don't understand). Tanner was testing at 16 months overall. So, Tanner will begin getting speech therapy. But, not nearly as behind as I thought he would be, so overall, I'm pleased with that.

The kids are SO much fun right now. Morgan is learning to say "Please" - and with a lot of work, Grandma Red had them doing animal sounds this weekend. Morgan is also starting to learn colors - although everything is "lellow" at this point. The way they reason is hilarious - and we are honestly enjoying their antics (for now).

Party is SATURDAY the 25th - 3 p.m. - 7 p.m. E-mail me for details if you want to come. We've sent out e-vites to those whose e-mails we had - but due to a computer crash recently, we are missing some.

Have a great week!
Stacy

PS - It's Morgan mania in the Photos area this weekend.

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Sunday, February 5, 2006 10:51 AM CST

Greetings from a chilly Kansas City today!

Not much is going on in our world. I leave for the last of my travel marathon trips tomorrow morning. I'll be in Denver for 2.5 days - making it home (hopefully) in time for supper on Wednesday evening. Lots of meeting - but it should be a good trip.

We saw a new allergist late last week. It went very well. She was really horrified that we did not have an EpiPen - so, we now have 4 to stash in diaper bags and around the house. We've managed to keep Tanner reaction free for the last 6 months, so I truly hope that we never need them. But, I do have to admit that I feel a bit better having them. If Tanner were to get egg somehow - we live nearly 20 minutes from a hospital, and I have no idea how long it would take EMS to get here. I think it is much safer for us to have the Epipen in case we ever need it. We also pulled a few labs to get a baseline for how allergic Tanner is to the eggs. We'll watch those levels for the next 1 - 3 years, and if they drop enough, we'll give Tanner a food challenge (in the doctor's office). We're really hoping we'll outgrow it. Either way, I feel a little better with a "plan" and the necessary medications to keep a reaction from getting too serious.

While we were having his allergy testing done, we went ahead and had his regular labs drawn. We were do to do them sometime in the next 10 days. The labs were GOOD - not picture perfect like they were the last time, but good. For our liver families our there, his ALT was up slightly from 28 to 40. His other liver numbers were great - but his CBC was a bit wacky. His ANC is at 2100 (that's ok - but down some), but his monocytes (10.9%) and eosinphils (13.2%) are high. His monocytes haven't been right since June when his neutrophil count was so low. They theorize that it was probably a virus, and I wonder if it's still lingering a bit. The eosinphils can indicate allergic reactions...but it tends to go up and down a bit, too. So, good labs - but not the tear jerking picture perfect from last month.

Otherwise, all is well here. But, I do have a few prayer requests for some liver friends. Our sweet friend, Natalie, woke up with a bili of 12 the middle of last week (this was the level Tanner had when he was transplanted - that would freak you out). They found a clogged bile drain, so she's inpatient getting that worked out and getting a picc line for IV antibiotics (www.nataliebear.com) - all of this right before her first transplant anniversary.

Another liver friend, Annika, is in the PICU with severe bleeding. Annika's had 2 liver transplants. She was inpatient from late November until late January - was home for less than a week, and is back inpatient again. They can't explain the bleeding - and it's a really scary and frustrating time for their family. (www.moreena.blogspot.com)

Have a great week!
Stacy

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Sunday, January 29, 2006 7:23 PM CST

We'll start this update by sending out a big happy birthday to Cousin Katelynn who turned the BIG 3 this past weekend. I can't believe that little thing



is now this BIG GIRL. Oh, my, how time does fly. Happy birthday sweet Katelynn!



For more viewing pleasure, we've included pictures of Tanner & Morgan's latest acquired skill that we found on a whim. We asked Morgan the other night to "go give Tanner a kiss", and the next thing we know, she's thrown him down on the floor to give him a big kiss.



Tanner is laughing through all of this - and he dearly loves his sister (as shown in this photo).



Last week was rather quiet. I was in Chicago for an ASHRAE conference. I get to spend this week in KC before going to Denver next week for work. And, then, I should be home for awhile! Phew...it's been a long few weeks.

The bad news this week is that Randy did not pass his engineering test. We FINALLY got the results from the State of Missouri. So, he's signed up and will take it again Friday, April 21st. The pass rates were way down this time, so that sometimes means that things are a bit better on the next test. (We'll keep our fingers crossed).

Tanner is doing great medically. He's regained most of the weight he lost from the RSV around the first of the year. He's weighing in at 21 pounds 8 ounces - Morgan is 22 pounds 13 ounces. At one point in time, they were close to three pounds difference, so Tanner has really caught up with Morgan. We repeat labs the weekend of February 11th.

Tanner does have an appointment with a speech therapist on Tuesday morning to evaluate that. We know he's behind - the question is how far behind and what can we do to help. When Tanner was born, he had an IVH. It's one of the many complications that preemie's can have, but it is more closely linked with learning disabilities and cerebral palsy. At this stage, it's still difficult to know if the IVH affected him, but it's one of those little things that always linger in my mind.

So, the new speech therapist will be here on Tuesday and we'll see exactly where he stands. The good news is that his occupational therapy (fine motor skills) got backed down to once a month (from once a week post-transplant). He has caught up to his adjusted age (18 months), and has emerging skills that will get him completely caught up to actual age soon. He currently has physical therpay every other week, but we'll also be reevaluating that this week and hope to back it off to once a month, also.

And, finally, as promised last week, a picture of Tanner & the neighborhood girls.



Poor boy...wait a second...one guy, three girls...hmm....maybe he's lucky after all!

Have a great week!
Stacy

PS - It's a Morgan week on the "View Photos" page link on the bottom.

And for those that asked - no, I didn't have a stencil for the kid's bedroom decor (not unless you count my set of Pampered Chef nesting bowls). I used them to trace the rings, and then had a round sponge brush that I used to make all the dots. VERY easy, VERY fun.

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Sunday, January 22, 2006 8:01 PM CST

Sunday evening...another week gone by, and a few more crazy weeks to go. This traveling stuff is for the birds. I now remember why I decided not to travel anymore six years ago!

The kids are doing great. Saturday was a wonderful day. The kids were so well behaved - neither one of them earned a time out (that may be a record!). We took them to Sam's Club early on Saturday morning - and they were so cute. They share a cart at Sam's Club, and they kept leaning over and giving each other hugs or kisses. Very sweet - very much not typical behaviour.

Sunday was also a lot of fun. We had a neighborhood play date this morning. It is so nice to have kids in the neighborhood that our Tanner & Morgan's age. Sydney (across the road) is one month younger than ours and Tyler (about 3 houses down the street) is four months younger. Very nice! Unfortunately, for Tanner, the possee is all girls. Tyler's neighbor has a grandson that is a week younger than our two, but he isn't around all that much. So, below, is a picture of Tanner and the girls.

(Picture coming soon)

I stayed up late on Friday night and finished painting the kids bedroom. I then decided to sort through all of the junk -- toys--- that the kids are outgrowing and get ready to sell them at the garage sale or on e-bay. Now, the kid's newly finished bedroom, is full of piles of stuff getting ready to sell. Now, it's a matter of figuring out when we're going to move them downstairs and out of the cribs.



Of course, that is one project down and about a thousand to go. It never seems like there is enough time, and then, of course, things like TAXES get in the way. It's that time of year to figure out how much we owe Uncle Sam...and to become really depressed over how much we've actually already paid in.

This week will be another busy one. I am off to the ASHRAE (American Society of Heating, Refrigeration, & Air Conditioning Engineers) conference in Chicago Monday - Wednesday (I know, sounds exciting, huh?) So, daddy is hoem with the babies by himself for a few more days. Next weekend, we'll go to Iowa for cousin Katelynn's third birthday gift. She is growing up so quickly.

The kids are doing well. Tanner's occupational therapist is going to go to monthly monitoring visits - and I think that the physical therapist won't be far behind that. Unfortunately, we are probably going to be adding a speech therapist and a developmental therapist as well. But, I know how much help the OT & PT have been, so I have to hope that we'll have the same luck with the new therapists. Tanner repeats labs the week of February 11th. Monthly labs are so nice.

And, finally, the party is on! We are planning on celebrating on Saturday, February 25th. No time decided upon yet. Tanner's transplant anniversary falls on Fat Tuesday - which is all about indulgence. So, we are going to ask that guest bring a dessert to share with everyone. We'll provide a main meal type of item and drinks. We're sending out the invitations through e-vite, so if you've recently changed e-mails, please let us know so that we can send you an invite.

Have a great week and enjoy the new pictures!

Stacy

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Sunday, January 22, 2006 4:50 PM CST

What a busy week! Denver was great, but I never have enough time to get everything done or see everyone I want to see while I am there. Hopefully one of these times I'll get out there and not be quite so busy.

Randy and the kids faired well while I was gone. The kids have been exceptionally good this week. They have really been lovey with each other which has been fun to watch. We went to Sam's Club yesterday. One of the nice things about Sam's Club is that the cart is big enough for both kids to sit in the seat together (it's actually designed for 2 kids). As we were going through Sam's Club, they would reach over and hug and kiss each other. We kept wondering what strange aliens had replaced our kids.

Today we had a playdate with our neighbors. We are so fortunate to have neighbors that have kids the same age as ours. Sydney is a month younger than ours, and Tyler is four months younger. Unfortunately, the only other boy in the neighborhood is one of the neighbor's grandsons who isn't around all the time. So, it's Tanner and the girls.

(Picture to follow shortly)


The kids played really well together, and an added bonus was the fact that our kids took a very good nap afterwards! All that playing wore them out.

I did get the kids room finished up this weekend. Now, I just have to clear out all of the stuff that I am selling at the twin garage sale so that we can actually use it. We are getting rid of some of the obnoxious toys that they have outgrown. And their high chairs. So, half the room is full of stuff to get rid of.



Still many other projects - and of course, it's tax season, so we have to worry about all of that, too. I feel like I am always behind.

We head to Iowa this next weekend for Cousin Katelynn's thrid birthday. It's hard to believe that she is 3 already. Grandma and Grandpa are very excited. And, mommy & daddy are, too. It's very easy to let the kids run at Grandpa 3 Hairs & Crazy Woman's house. And, thanks to Grandma's helpers, the house is usually baby proof. Maybe that will leave time for mom to get a nap in.

Medically - it's still 3 weeks until Tanner gets his next set of labs. So far, the kids are healthy and doing great.

Party Update - the party is on. We are planning on Saturday, February 25th (time to be announced). It will be a mardi gras theme - and since "indulgence" is a key to Mardi Gras - we'll be asking folks to bring a dessert to share. A main entree will be provided, and I'm thinking I need to find a couple of drinks to serve as well. (Maybe a Hurricane?)

Have a great week!
Stacy

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Sunday, January 15, 2006 9:44 PM CST

What a crazy week & weekend...

Randy left on Thursday for a conference and returned late Saturday afternoon. That meant I had the kids alone for 2.5 days. Surprisingly, we all made it through...alive. We even had somewhat of an enjoyable time. The kids and I ventured to Target and Dillons (grocery store) by ourselves. Quite a task when you try to figure out where you'd put 2 toddlers in a grocery cart and still have room to buy stuff.

And, as some of our retiree friends have pointed out, Saturdays are your busiest days (they point out that they now have a weekful of Saturdays, and even though retired, constantly busy). Ours are also packed, and it's that time of year where mom gets ancy and starts with PROJECTS.

We finished up one small project today - reducing our energy consumption. We put compact fluorescent light bulbs in different fixtures in our house - and that required us switching out some dimmer switches. It will help reduce our energy costs - plus it will save on air conditioning costs this summer.

Current project in the works is getting the Toddler room ready. We have borrowed a crib for Tanner - and the crib needs to be passed on to another family. So, in the next 2 months, the kids need to be sleeping in toddler beds (don't worry - we do have a Plan B if that doesn't work). So, we are getting their room downstairs ready for them to move into. Here's the work in progres:



I still have some of the sun looking things left - but am overall fairly happy. I have material to make a curtain and some pillows or cushions, or something (the material is where I got the idea from). And, of course, lots of other small stuff to finish it off.

Then, we are also going to take on a project of fixing up the office. The office may be the room that Randy & I use the most in the house. It houses both of our computers, paperwork, and where one of us spends most nearly evening. We've decided to do a small upgrade including wood floors, more shelves, cabinets, and filing cabinets. Everything is on order now and we hope to do that at the end of February.

Sometime in April or May, we'll build a swingset for the kids in the backyard courtesy of the grandparents and Aunt Sherry. This was the kids Christmas gift from all of them. I think that they will get a lot of good out of it.

And, I always have little projects that I'm working on...it just never seems like there is enough time. And, it doesn't get any better with my travel schedule. I'm out 3 of the next 4 weeks (poor daddy!) for work. My travel seems to come in spurts - so hopefully after this I'll have a quiet spring at home.

Oh...wait....I forgot - this page is to update on the KIDS! They are doing great. The RSV is gone - the nebulizer is packed up. They aren't contagious anymore - so, we hope to have a playdate with some neighbors next weekend...and best of all - Rylee, the nanny's daughter will be back for the first time in 3.5 weeks. If I had a dollar for everytime Morgan asked for her... Tanner's labs were perfect last week, so we won't have to even worry about them until next month unless something happens.

Finally....we are tentatively planning on having a party the weekend of February 25th. Not sure on which day, what time, or any of that yet. Tanner's transplant anniversary is on the 28th...which just so happens to coincide with Fat Tuesday. So, we thought a Mardi Gras party would be a great way to celebrate. Honorary guests will be Morgan, Tanner, & the liver giver, Grandma. Since we work and hope to invite people from a all around, we'll hold it on the weekend prior.

We'll finally be able to have all of those people over who we've been promising to invite over since...well...since the kids were born. With help from Anthony's mom, Laurie, I may even be able to find some "authentic" recipes. If you would like to make sure that you are on the invite list, please send me your e-mail address to stacyrobb@excite.com. And, while it is Mardi Gras, we will not allow any flashing (that includes the liver scar, Grandma).

All for now - I'm headed to Denver this week & Chicago the week after that. Have a wonderful week!

Stacy

PS - If you haven't checked out the most hilarious picture on the photos page you are missing out. Maybe you have to know the kids for it to be funny, but the picture of Morgan crying with Tanner poking his head into the picture just cracks me up.

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Monday, January 9, 2006 9:27 AM CST

Pretty labs....

There just isn't a better way to describe them. Tanner got labs this weekend, and they are hot off the press. They are the BEST labs Tanner has had to date. We've been told that when you hit that year mark, everything smooths out, so I am hoping that this is an indication of good things to come.

Tanner's Hemaglobin & Hematocrit levels are actually on the high side of normal (in mid-October they got low enough that we had to start liquid iron 3x a day for 6 weeks). His WBC count is 8.9 (low side of normal) and his absolute neutrophil count (ANC) is 3827. Remember last summer we were giving Tanner injections because his ANC dipped dangerously low to 128. No worries on that front now! His magnesium level is an astounding 1.8 - it's bobbled around the 1.4 range since transplant (1.6 is low side of normal). Post-transplant Tanner was on milk of magnesium to help that out. And, some of his liver numbers that were a bit wacky last time are all back within normal ranges (AST 44, ALT 28, GGT 15, Alk Phos 249, Bili 0.4), his kidneys are happy (BUN 12 & Creatine of 0.2), and his prograf level should be okay at 6.6 (in all honesty, the lower prograf probably helped the mag level & the kidney functions).

Wow - what a great feeling! I actually have tears of joy in seeing such GREAT labs. I'm sure that some of our other liver families can relate.

On other fronts, the kids are feeling great (which is reflected in Tanner's labs being so awesome). They are running around the house. It was such a beautiful weekend, that we were able to get the kids outside and play both Saturday and Sunday.

Randy & I have decided to start aggressively working with the kids in areas that they are behind in developmentally. I think a lot of it is that we haven't been challenging then and trying to teach them much. So, we are going to start working with them really hard on a lot of things. It will help when we get Tanner (and possibly Morgan) set up with a speech therapist, too.

Otherwise, Randy heads out of town on Thursday for a surveying conference. I'll have the kids all by myself for a few days. And, then on Friday evening or Saturday, I'll load the kids up and head to Wichita to see the friends that we missed on New Year's Eve. Randy will join us in Wichita mid-day Saturday. We may even get to meet one of our liver friends.

Next week, I'm headed to my company's headquarters for a few days of work. So, Randy will get the kids by himself the other few days. I guess it all evens out.

Hope you all have a great week!
Stacy

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Wednesday, January 4, 2006 10:23 PM CST

Day 12 of RSV....

I think the kids are much better. Over the weekend, the kids were offering to take 3 naps a day (they've learned "night night") and they are back down to their regular two-hour nap in late morning / early afternoon. So, that is a good sign.

Tanner is getting breathing treatments twice a day, but he really only has an occasional cough. We see the pediatrician again tomorrow (6th doctor's appointment in 8 days). Hopefully, they'll tell us we can discontinue the treatments.

Morgan really had the tougher ride on this one - probably due to some of the lung stuff she's had over the past year and a half. She ran a fever for about 5 days vs. Tanner's 2 days. She has also required more frequent nebulizer treatments. For about 3 days we gave them at 4 hour intervals - and that was around the clock. To say the least, Randy & I are exhausted.

The kids must be feeling better, though. This evening before supper, Tanner brought me a diaper. I somewhat used looking diaper, although it didn't have any "deposits" in it. I tried to figure out where he had come up with this - but didnt' see how he could get it out of the diaper drawer and both kids were completely clothed. So, I dismissed it.

About 10 minutes later, I pick Morgan up & notice that she is diaperless! I'm still not sure how the diaper got off of her, outside of her clothing, and into Tanner's hands, but we're going to have to keep an eye on these two. I'm sure my days of twin mischief are just beginning.

All for now - Tanner gets labs this weekend. Odds are they might be a bit wacky since he's just getting over the virus - we'll just have to keep our fingers crossed!

Love to all -
Stacy

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Saturday, December 31, 2005 9:57 PM CST

Happy New Year?

Well, we are still recovering from RSV around here. Thankfully, we've managed to avoid hospital stays altogether - so far. But, we've managed to see some form of doctor almost every day. There have been times when I would have felt more secure in a hospital, but, I do like my own bed, and the kids are definitely more comfortable at home. Plus, since they have RSV, if we were in the hospital, we'd be in confinement. Which would make things even more rough.

Tanner started with this on 12/24 - and he really started feeling better yesterday, 12/30. He had a low-grade fever for about two days. Tylenol made him feel better, and today he feels down right ornery. He still has a runny nose, and he'll get albuterol treatments every 6 hours through the long weekend.

Morgan started with the cold on 12/26 - and frankly, I think she's having a harder time with it than Tanner. She's had several different issues with breathing problems since she came home from the NICU - and has been on Singulair in the past to help with what was referred to as "preemie lung issues". So, this may just take her more to get over it.

She's been running a low grade fever for the last 3 - 4 days (vs. Tanner's 2 days). And, the last 2 days, all she has done is lay around on us. Tanner really only did that one day. We're hoping that tomorrow she'll feel better, but it may take a few more days.

The good news is that we've got lots of snuggle time with the kids - and they took 3 naps today. All their own idea (they've both learned "night night" with corresponding sign language). Which, has given Randy & I some nap time, too.

Now, our only problem with Tanner is the terrible 2 stage...the last couple of days, when he gets really mad, he throws up. I'm not sure if it's a bit of the ear infection he's fighting (they found that in St. Louis), part of the terrible twos, but it's really annoying. It's hard to put in a kid in timeout that ends up throwing up when you put him there.

Oh well....I'll take these "typical" problems. None of them liver-related - how lucky can we be? Last year at this time, we really didn't know whether or not Tanner had a year to life without a new liver, and we had begun to lose confidence in the Kansas City team.

On Wednesday (while in St. Louis), we celebrated Tanner's 10 month transplant anniversary - he has had his "new used" liver (thanks, Grandma!) for as long as he had his old liver. He's so much healthier today than he was then - and (DRUMROLL........) he's on the growth chart for length!!! Ok, that might not mean a lot to many of you, but when you're in preemie world - hitting that growth chart is a major milestone.

2006 - we have so much to look forward to. Tanner & Morgan are really at that fun age where you can see the wheels turning and they learn things so quickly. Morgan's vocabulary grows daily - and even Tanner is starting to pick up. Hopefully, the kids are healthy enough this year that Mommy & Daddy can focus on our health, happiness, & welfare. That is something that has been on the backburner since we heard those "it's twins" words 2 years ago.

Have a safe & happy New Year!
Stacy & Randy
Tanner & Morgan

PS - For those of you who keep asking, Randy's test results were mailed to the state last week. We've still got about 2 more weeks before we'll know anything.

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Wednesday, December 28, 2005 3:54 PM CST

St. Louis was great. The kids were "pretty good" during the travels - Morgan travels much better than Tanner does. Tanner's labs are all fine - the liver stuff is going well. We'll hold steady with our 4 meds (Prograf - the rejection med, aspirin - to thin the blood, a multi-vitamin with iron, and sulfatrim - a preventative antibiotic.

However, Tanner developed a little cough on Christmas Eve (which prevented us from doing some of the things we had hoped to do). By Christmas day, it was pretty "juicy" and it's gotten worse since then. Today while in St. Louis, we had him swabbed for RSV and it came back positive.

RSV is VERY dangerous - and in fact last year they received shots that cost well over a few grand each MONTHLY to prevent them from getting RSV. They don't do that the second winter - and now the kids have it. RSV causes breathing problems. We know "healthy" kids who have ended up hospitalized with this. We are hoping that that isn't us.

So, our weekend trip is scrapped. I'll keep updating - and please keep us in your prayers.

Thanks -
Stacy

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Thursday, December 22, 2005 11:35 PM CST

I just wanted to post and wish everyone a very Merry Christmas.

Boy, we are sure going to have fun this year. You just never no what Morgan is going to say these days. Besides repeating some of our slips (oops) - she's also picked up "No Sir" - which is what our nanny tells Tanner when he's not supposed to be doing something. So, now, when Morgan sees Tanner doing something (or having something) he isn't supposed to, she follows him around saying "no sir", "no sir". This is the same girl who a month ago would chase after Tanner and take something from him if we asked him for it.

She's picking up so many words - her favorite being "more". She's been signing it for a long time, and she's picked up the signs for more, eat (although instead of taking her hand to her mouth, she takes it to her nose), and sleep (or night night). It's pretty cool to see the sign language working - I wish we could get Tanner to pick up on more of it (he's got more down pat). Morgan probably has a 20 - 30 word vocabulary now, although I'm not sure that we understand them all the time.

Randy & I have quite a few days off. Both of our companies give Christmas Eve & Christmas Day off. Since those fall on the weekend, we get Friday & Monday off (although I am playing catch-up early Friday). So, tomorrow, we are planning on taking the kids to the mall to see Santa - and maybe just maybe, we'll stop at Overland Park Regional where the kids were in the NICU for so long. It all depends on how long we are at the mall (although I don't think we'll have the nerve to wait very long in a crowded mall).

Friday afternoon, Randy's aunt & uncle (& Tanner's godparents) will be in town for the evening. They are going to the Chief's football game on Saturday. We're excited to see them as we haven't gotten to see them since the kid's Baptism (of course, we haven't seen many people since then).

Saturday we'll get to spend some more time with his Aunt & Uncle - and then we'll probably go to a "real" church service. And, hopefully we can round that out with going to "Christmas in the Barn" at a local Historic Farm Site. They usually have real animals that the kids can see, as well as a live nativty, children's choir, etc - kinda neat.

Of course, Sunday is Christmas Day. My parents will make it down assuming the weather holds out (come on 60's!). We'll open gifts - and I've completely given up on cookings, so we'll warm up Christmas Dinner provided by Boston Market.

Monday - well, of course, is for shopping! I always like to hit a Target and/or Wal-Mart to pick up Christmas decorations for next year and any other great deals. Of course, I typically do this at 5 or 6 a.m. and I'm home in time for breakfast.

Tuesday we'll head to St. Louis' for another check-up for Tanner. Since we don't have to be there until Wednesday morning, it will be a nice leisurely drive. We may even stop and do some shopping at the outlet malls on the way over. We're staying in a hotel with a pool - so we hope to take the kids swimming.

Finally, on Wednesday, we have an appointment. I know that Tanner is fine, his labs are good, but I'll feel better to hear a "he looks great" from the team and be sent home. Of course, every time they do that I think "and why did we need to drive all this way for this appointment" - but, I know there is no substitution for being able to lay eyes on him. Plus, we enjoy seeing the team. It's Christmas - and we have so much to celebrate this year - and we wouldn't have it without the team in St. Louis.

After all of that, we head back to work (won't that be a nice break!). But, we're going to go to Wichita to see some friends for New Year's weekend. We are SO looking forward to seeing Greg & Lisa & the kids. These are Morgan's godparents, and friends that we haven't seen since the Baptism. Plus, Randy & I used to spend so much time with them when we lived in Wichita, that we really miss them!

Hmmm....it sounds like we may need a vacation to recover from our upcoming holidays.

Merry Christmas everyone - we wish you a safe and healthy New Year. May you find the time to celebrate the season.

Love,
Stacy & Randy - Tanner & Morgan

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Sunday, December 18, 2005 7:28 PM CST

Back from Iowa. All went really well and we had a great time...until the ride home. Tanner was a TERROR the whole way home. He does not travel well. Hmmm....I'm really looking forward to our car ride to St. Louis next week.

Grandma & Grandpa's was great. The house is coming along so nicley - there was so much room for all of us. Tanner & Morgan loved climbing the ramp up & down. And, to Randy & I's surprised, the house was very well baby-proofed! (Good job, Grandma & Grandpa). Morgan mastered staircases, and Tanner is much improved. We got to see brothers & sisters - and the "pseudo" siblings, Darrell & Wendy. I think that the grandkids & grandparents had a ton of fun - and that's what is important, right?

We have a busy, but quiet week coming up. Randy & I work Monday - Thursday, but have Friday & Monday off. Randy's aunt & uncle (and Tanner's godparents) will stay with us on the evening of the 23rd to Satruday. We'll go to church Saturday afternoon. We'll see Grandma & Grandpa again when they come down on Christmas Day. On Tuesday, we pack up & go back to St. Louis for a year-end check-up (we're sneaking another check-up in before our copays and out of pocket expenses start-up again). So, Randy & I are also taking Tuesday & Wednesday off.

We hope you all have a Merry Christmas. May you take the time to enjoy your family.

Love,
Stacy & Randy, Tanner & Morgan

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Saturday, December 10, 2005 11:55 PM CST

Phew....the shopping is done. That is one thing that we can cross off our list.

And, on top of the requisite holiday gifts, we can also had a washing machine to our list of things that were purchased. Our washing machine is acting up again. It's only 7 years old - and I certainly expected it to perform better when I purchased it. But, Randy & I aren't the tinkering kind of people. To have a guy come look at it will cost us $80 - and then who knows how much the part would cost on top of that. The last time we fixed it, it cost us about $300. I'd rather apply that money to a new washing machine. Thankfully, Lowe's delivers the next day.

Our household is fairly quiet. Just a few sniffles left over from the cold that we picked up a week ago. Enough to keep us away from some things that we would normally do - but not enough to keep us inside all day (see pictures for our outside fun). We did pick up 10.5" of snow on Wednesday of this week. Getting around Wednesday - Friday was a bit tricky.

Tanner got labs this weekend - hopefully all is well. If so, that should hopefully be our last set of labs for the year. Ok, I know, there are only 3 weeks left, but I'll take it! I like our monthly schedule for labs, although it means that we have to turn in our "regulars" status at the lab. Hmmm...I think I can live with that.

Otherwise, the kids are still in "terrible twos" mode. Someone, PLEASE, tell me that they will outgrow this soon. They each have a temper and have picked up a bad habit of throwing something or slapping something (or someone) when they get made or upset. I really do not know where they get this behaviour as we do not spank them nor do we hit or throw things when we get made. We have implemented a time out policy in our house. Those who have seen don't know whether to laugh or cry. We make them sit facing the corner with their nose in the corner - and they stay like that the entire 1.5 minutes. And, yes, I do have pictures that I will post sometime soon.

All for now...stay warm & safe.
Stacy

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Tuesday, December 6, 2005 7:38 AM CST

Just a quick update....

Things are relatively quiet in our household. Somewhere, Tanner, Morgan, & I picked up a really horrible head cold. It's left all three of us grumpy & not feeling very good (lucky daddy!). Tanner & Morgan started Thursday morning, and by Friday afternoon, I had picked it up. It was a miserable weekend. I'm feeling a bit better, so hopefully in a few more days we'll be back to "normal".

The kids are adjusting to having Baby Riley (or Ry-wee as Morgan says) in the house. It's taken them a little getting used to the fact that the aren't the only ones. But, I think that this is a very good thing for them. They've both pushed it a few times, and we've had a few more time outs than normal, but not nearly as bad as I thought it might be.

We are going to repeat Tanner's labs this weekend, and it's the last set of labs we should have to do until we go to St. Louis right after Christmas.

Otherwise, it's starting to look like Christmas in Kansas. We've had some bitterly cold weather lately, and we're expecting snow in the next 48 hours. We're gearing up & getting the snow blade on the lawn mower & stocking up the fridge. Not that we'll be stranded, but the first snow fall is always difficult to navigate.

Love to all -
Stacy

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Sunday, November 27, 2005 11:32 AM CST

I hope everyone had a great Thanksgiving....Here's a little update from our world.

First off - our nanny, Ashley & her husband, Trae are back in Kansas City with Rylee. The birth mom signed away her birth rights on Tuesday, and they brought her back home on Wednesday, just in time for Thanksgiving. We've seen pictures, and wow is she cute. So much hair! We are anxious to see her in person.

We are back from Western Kansas for the Thanksgiving holiday. That is a long drive with two little people howling in the car. They do okay for about the first 3 hours - it's the last 3 hours & 45 minutes that gets to them.

It was good to see Grandma Loretta & Grandpa Elmer, Aunt Sherry, and the few family & friends that we were able to see. With Tanner not being able to get his flu shot, we had to limit their exposure to people. We spent lots of time at the park (pictures to follow very soon). The park in Colby had 14 separate slides - the kids had SO much fun.

Tanner had labs the week before Thanksgiving. His hemaglobin & hematcrit numbers are NORMAL - so the iron he has been taking for 5 weeks has been working. He had one liver number (AST) that was up - still within normal limits but higher than "Tanner's normal", and the highest it's been since March 10th (when numbers were still declining due to the recent surgery). I'm a little nervous about that - but we'll redo labs in a few weeks and see where it stands.

The kids are now making huge strides in everything they do. Morgan is mimicking ALOT of words (we are really having to watch what we say)...and she learned to open the interior doors in the last 24 hours. So, now there is no keeping her out of things. We'll have to look for door knob covers soon. Tanner's vocabulary is growing daily and he is now running everywhere as well.

Otherwise, it's back to work this week for us. I worked last Monday & Randy had the whole week off. So, it'll be a tough transition. Grandma is back in town to help cover while Ms. Ashley gets some of Rylee's doctors appointments & stuff out of the way - so, we will be taking advantage of that to get stuff done in the evenings.

I will post pictures in the next day or so.
Stacy

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Sunday, November 20, 2005 1:09 PM CST

CONGRATULATIONS are in order!

Our nanny, Ms. Ashley & her husband, Trae are the proud parents of a little girl born Saturday night at 9:32 p.m. Rylee Jade was 6# 11 oz and was 19.5" long.

I don't think I've ever heard Ashley so excited. Our congratulations & best wishes go out to them! Now, all they have to do is wait for the adoption paperwork to get finalized and they can return to Kansas City. We can't wait until we can go visit.

A full update later on.
Stacy

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Friday, November 11, 2005 4:04 PM CST

Ok...a little overdue update....

Tanner had labs 2 weeks ago, and the iron appears to be working. So, thankfully, we have avoided any tranfusions or other treatments. We'll continue on the iron for another 3 weeks or so. We have our next appointment on December 28th in St. Louis. We're planning on squeezing another appointment in before all of our copays & deductibles renew in January.

Last week we went to our pediatirican for an 18 month check-up. All seems to be going well. Morgan got her 18 month immunizations and flu shot. Because of Tanner's egg allergy, the allergist only wanted Tanner to have the flu shot (we'll catch up on immunizations soon).

Welll, Tanner got 1/10th of a dose of the flu shot and started reacting within a few minutes. He had a big red area on his leg that swelled up and he started getting pretty fussy. We ended up giving him Benadryl and that seemed to help thing settle down a bit. The allergist wanted to give Tanner the flu shot in 1/10th increments - yes, 10 shots over 10 days! Thankfully, St. Louis vetoed that idea.

Now, that means we have to be extra cautious to not expose Tanner to the flu since he has no immunity to it whatsoever. He caught a cold over a month ago, and what took Morgan about 2 weeks to get over, took Tanner about 4 weeks to conquer. So, if Tanner were to get the flu, it's likely that he could get very dehydrated and end up in the hospital. We'll have to be very cautious around crowds this winter, shopping areas, etc. Nothing new to us personally, but still so very difficult for others to understand....like when I have to tackle the little old lady who just wants to squeeze Tanner's cheeks or body slam the little boy who thinks it's ok to kiss other people's babies. Just kidding, although I've been known to shoot some dirty looks....

We're in "getting ready for Christmas mode" around here. We will celebrate Christmas with Randy's family on Thanksgiving - so, we have this weekend to finish Christmas shopping. We'll try to finish everyone up since it's so critical that we begin avoiding crowds. In addition, we should begin to get our outdoor Christmas lights up. It's supposed to be a nice weekend - hopefully we can take advantage of that.

I will update some pictures in the near future, but probably won't get an update on until after Thanksgiving. I hope that everyone has a wonderful & safe Thanksgiving.

Take care -
Stacy

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Sunday, October 30, 2005 8:49 PM CST

Sigh....I wrote a long update & it didn't post. UGH.

Tanner's labs on Friday were great. No word yet on when we repeat, but I'm guessing 2 - 3 weeks. Randy's test is over. We won't have results until Christmas - maybe after New Year's. My mom is out of the hospital & very grateful to be home. See Thursday's journal entry for other prayer requests.

We spent the weekend getting snobbered on (a nice blend of snot and slobber that end up on parents pantlegs, shirt sleeves, and shoulders) and trying to overcome Morgan's fear of our new minivan (we think she's afraid of the power sliding door). And, recuperating. There is so much anticipation that goes into the PE that when it gets done, you are exhausted. It doesn't help that the test usually coincides with the time change.

Tanner & Morgan turned 18 months old today. 18 months ago, we had 4 pounds of baby, a year ago we had 20 pounds, and today we have 40 pounds of baby. They have grown & developed so much - especially in the last month or so. But, at the end of the day, their favorite thing to do is to crawl into one of our laps and lounge and laugh together. It is some of the sweetest music that I will ever hear.

The next few weeks will be crazy. My job is in overdrive right now. Our previous owner is flying into KC tomorrow to work with me on some projects. I fly to Denver next Sunday - Wednesday to participate in some meetings and work on some more projects. Grandpa 3 Hairs is coming in town to help daddy with the kids (and do a little spoiling while he is here).

On top of that, add all of personal life stuff, and it's crazy. So many projects that had been postponed until "after the test" now need to be done. And, it's impossible to get much of anything done with toddlers around.

And, we're anxiously waiting with our nanny & her husband Trae for the arrival of their little girl. They are adopting a little girl and the birth mom is due November 14th. So, they could literally be leaving town any day now. We're hoping (as are they) that the baby can hold off until the weekend of November 12th.

No matter when the baby comes, it's going to be a balancing act to reserve enough vacation time & money to be able to make our planned Thanksgiving trip to Western Kansas. We have a temporary nanny service lined up, but we can't afford to hire them for more than a couple of days (at a $150/day, you can understand why). Unfortunately, we only have a few vacation days each, and most of those are already being used for the Thanksgiving trip or Tanner's follow-up appointment in December. Sigh...unfortunately, I haven't found a solution to this one yet.

I hope everyone has a safe & happy halloween. I will post pictures soon!

God Bless -
Stacy

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Thursday, October 27, 2005 8:29 PM CDT

It's been a busy week. But, the kids are doing much better. Morgan ended up with a rash all over her body on Monday that sent us to Urgent Care for the second time in 3 days. It seems to have been related to the bug that they had last week - and the runny noses are starting to clear up.

Tanner has started talking up a storm this week. On Monday night, as our nanny, Ashley, was getting ready to leave, he walked up to her, waved, and said "BYE". It stunned ALL of us. Since then, you can see him working hard at saying different words. He can now say "bye", "ball", "book", and of course "up". He's working on a few others. I'm hopeful that if he continues at this speed, we won't need speech therapy after all.

We've got a long list of prayer requests tonight, but please take a few minutes and say a special prayer for them:

Haley is our liver friend who lost her battle earlier in the month. Her family is still dealing with the pain of losing a child. Please continue to remember them in your prayers.

Aiden is one of our other liver friends. His immune system is a little whacked out right now (sometimes the immunosuppressant that our kids take can do that to you), and he is having horrible allergic reactions. To top it all off, his mom is dealing with a new baby in the household.

My mom - she's in the Iowa Methodist Hospital in Des Moines. She has a wound from their accident back in May 2004 that has been a continuing source for infection (yes, 17 months and it isn't completely healed). They are doing lots of tests to try to pinpoint the source of infection and starting her on some IV antibiotics. The IV antibiotics help, but we want to get this fixed once & for all. However, it'd be nice to be home for the weekend.

Our nanny, Ashley & her husband, Trae. After their last birth mom backed out in September, they finally have another birth mom. The little girl is due somewhere between November 10th (mom's date) and November 24th (Doctor's date based on the size of the baby). They should get word next Tuesday on when and whether or not they will induce her. So, keep them in your prayers that this will go through and they'll be bringing home a little girl in the not-so-distant future.

Finally, for Randy - the Professional Engineering test is tomorrow. Big day and we're all on edge. We just want this to be "the test". It takes a lot of pressure off of him personally, as well as time constraints on the family. It's tough to do special stuff when daddy is trying to study nearly every evening and weekends, too.

Tanner had labs this morning - hopefully we'll get results tomorrow. His hemoglobin & hematacrit (basically, this means he is very anemic) levels have been very low (for our numbers friends, 27.0 & 8.2) at the last set of labs 2 weeks ago. They started him on iron a week and a half ago, so we're checking to see if that is helping. If not, no telling what our next course of action is. But, a blood transfusion is possible.

All for now - I'll post Halloween pictures early next week (no, I haven't finished the costumes yet!!!)

Love to all -
Stacy

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Sunday, October 23, 2005 1:08 PM CDT

A Couple of Firsts........


Tanner & Morgan picked up a cold. It started on Monday or Tuesday of last week with runny noses, and by Thursday, it was an all-out snot fest. Morgan started grabbing her ears and screaming on Wednesday, so on Thursday, we ran her up to see our pediatrician. Thankfully, her ears were fine.

On Friday, Morgan started running a fever. It's ranged all the way up to 102. We've been giving her Tylenol, and we're waiting it out.

I have a kid who has had a liver transplant, but I've never had a kid with a fever! Almost 18 months old, and this is our first official fever. It makes for a slightly anxious mom - and a tired one since I've been getting up in the middle of the night to check her temperature and administer Tylenol.



Our other first....it is with a heavy heart that I tell you that we broke down and bought a minivan this weekend. We knew that if we ever wanted to haul more than just the kids and us, that we might eventually have to succomb and buy a minivan. We decided to go ahead and bite the bullet, and will pick up a White 2005 Chevy Venture on Monday evening. Ironically, there was an advertisement/sign on top of the van that said "Join the Over 30 Crowd".....sigh......

Now, for those of you who have known us for awhile, Randy owned a brown mini-van when we met. It was referred to as "the Hoopty". It got him from A to B - without air conditioning most of the time (since that really dragged down the motor). And, as a good friend (hi, Charlene!) once told Randy "if you'd get rid of that van, you'd have better luck finding a nice girl". Alas, he kept the van & got me - guess that will teach him!

I'm happy to report that this minivan is much more visually appealing, powerful, and even has a DVD entertainment system (for those long rides to St. Louis & grandma & grandpas houses). However, I do believe that we should name it "Hoopty 2" and call it Junior.

That's all for now. Randy's test is FRIDAY - so, please say a prayer for him. We need for this test to be "the one" and for all to go well. Tanner gets labs repeated on Sunday of next week - unless he does soemthing like copycats his sister's fever - when we may have to do them earlier than that.

Thanks for checking in on us!
Stacy

PS - I forgot to mention, Tanner had his first official word this week (I refuse to count "uh oh"), it's "up". He'll come walking up to you and say "uuut". He's up to 5 teeth, and we're still working on those other 3 coming in.

Morgan has a whole vocabulary now: bye, baby, book(s), stinky, amen, wow, duck, shoes - and she's been heard to repeat burp, beep beep, big, thank you, and a few others. Still no "mama" or "dada". Hummmmph. She did sign (yes, we're working on baby sign language), "more books" this week. Which is great that she can put the two together.

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Sunday, October 16, 2005 7:25 PM CDT

Hi all -

Just wanted to post an update.

Well, the bad news is that I didn't win the $270 million Power Ball jackpot. The good news is that no one else did either, so I guess I can try again on Wednesday. Oh my, what would I do with $270 million!?!?

Ah well.....

Things are going pretty well. Tanner repeated labs last weekend, and his iron level is very low. So, we are going to start him on iron Monday. Hopefully that will help pick up his energy level. We'll repeat labs in 2 weeks to see if it's helping. Otherwise, his liver labs look good.

Our latest battle has been teething. Tanner has had 2 teeth since we came home from St. Louis - all of a sudden, he's cutting SIX additional teeth! Three are through, and in the other three, you can see indentations where they are pushnig there way through. Needless to say, it's made him a bit cranky.

Morgan just got her eighth tooth in (it's been more of a gradual process for her), but she's starting to cut some of her back teeth as well. I'll be glad to be done with the teething as it makes for cranky babies.

Tanner is also finally to get back some of the hair that he lost in May & June. He now has a "halo" of blond fuzz (sorry, Grandma, it's lost that red tint) around his head. All it does is stick straight out from his head about 1/2". Cute, but you can't do anything with it. Morgan has quite a bit of hair now, and we are going to have to think about getting a haircut soon.

Otherwise, all is quiet. We are going to go to a pumpkin patch next weekend and Randy's test is in 12 days. Please say a prayer that this is it and he can pass the test. Afterwards, we hope to be able to invite some friends and family over and catch up after being out of the loop for 18 months.

Hope this finds everyone well - check out our new pictures!
Stacy

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Wednesday, October 5, 2005 7:42 PM CDT

Above is a picture of Tanner & Morgan holding a pink balloon that we released into the air today. There were actually two balloons, but one got away.

The pink balloons are in memory of a very special little girl. Haley was only 11 years old, and for 5 years she fought a battle with several different diseases. While many kids her age would have become bitter and withdrawn, Haley's diseases only brought out the best in her. She was a compassionate little girl who wanted to help other sick children. She wrote songs about liver disease (Dirty Rotten Liver Blues & Bilirubin). The songs were a whimsical look at liver disease ("I've got a friend named Billy Rubin.....he can be a mean fellow.... when he makes my skin yellow....."), lab work, and all the other stuff unique to sick children. Her songs could bring a smile to the faces of the young & old alike.

Haley fought valiantly. She had a very serious brain bleed in February of this year. When told that she may lose her sense of touch as a result of the bleed, she told her family "as long as it's not my sense of fashion". She kept her sense of humor through it all, too, offering this tip to others "never let a neurosurgeon cut your hair". This hairdo had people from all across the country sending Haley hats to wear while she waited for her hair to grow back. And, what did this little girl do with them? Set up so that she could give hats to other kids who were in a similar situation.

That brain bleed was what kept us from meeting Haley. Haley's father (a doctor) is friends with the doctor who is in charge of the liver transplant program at Washington University (which is where all the doctors for St. Louis Children's come from). Haley was to perform at the ALF Banquet in late February - two nights before Tanner's transplant.

So, today, we let go of a pink balloon to remember Ms. Haley. Our liver friends from all across the country were doing the same - pink was Haley's favorite color. So, if you see a pink balloon floating in the air the next day or two, please say a quick prayer for this Angel friend of ours.

And for today, I'm going to embrace my babies a little longer, and thank God that we were given a second chance with our son.

Love -
Stacy

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Friday, September 30, 2005 3:00 PM CDT

Sorry it's taken so long to update.

Not much going on here. Tanner has recently come down with diaherra. It got bad enough that we finally called St. Louis and they ordered a stool culture & labs. Tanner has C. Diff - probably caused by the antibiotics he was on in early September for his ear infection. He's on a NASTY tasting medicine, and hopefully it will all be better soon. Now, the rest of us just have to avoid it! The great news is that his liver is very happy and his WBC is all within normal ranges.

Otherwise, we are just trying to enjoy the cooler weather. It's nice to be able to go outside without instantly breaking into a sweat. However, this does remind us that it's time to fertilize the yard, clean out the flower beds, and get ready for winter....in my spare time.

The kids are so much fun right now. Morgan is getting a few words ("bye bye", "baby", & "duckie") - and she's signing a few words, too. Tanner says "uh oh" when we say it to him and is starting to try to repeat a few other words to us. We are working to get them to sign "book", "more", and "up". Unfortunately, they are still not where they should be on language skills - it could be a preemie thing & it could be a twin thing. But, either way, it's possible that they will both have speech therapy if there isn't major improvement soon.

Tanner is making great strides in his physical therapy, too. He's able to get up off the floor on his own & is walking all the time now. His fine motor skills are improving. The last time he was scored, he was at his adjusted age. They would like him to "catch" up to his actual age by his second birthday, so we will continue with physical therapy for awhile.

Otherwise, the focus in our house has been getting Randy ready for his PE test. Please say a little prayer for him. The test is Friday, October 28th (4 weeks from today). This will be the third time he's taken the test. It's not an easy test, and Randy has the added misfortunte of not enjoying test taking. It'd be nice to have this stress behind us (he's been taking this test or the surveyor's test for the last 4 years). The test is trying for the rest of us in that Randy needs time to study, which means less family time, less mommy time, and less getting stuff done around the house time.

Check out the new pictures & have a great weekend!

Stacy



Sunday Morning Prayer Request

Our Liver Family had another Angel called home last night. Haley was about ten years old, and a very spunky child. She suffered from AutoImmune Hepatatis (liver disease) as well as Lupus. She not only had a beautiful voice, but she had the ability to write songs, too. She had written several songs about liver disease.

Her battle became too much last night, and God called her home. Please keep her family in your prayers.

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Sunday, September 18, 2005 7:05 PM CDT

Back from St. Louis. Boy, did we have a GREAT time - but, it's also exhausting trying to pack those two anywhere for any length of time. St. Louis could be a 4 hour drive with no stops - we made it from the very west side of St. Louis (should have cut 20 minutes off the trip) in 5 hours today. The kids just don't like long car rides.

But we had such a wonderful time. The balloon festival was SO much fun. We were SO close to the balloons - I've been to balloon festivals before, but never like that one. It was so neat to see everything so close up & to meet other transplant families and see some of the nurses and doctors in "our team".

We also got to meet Analiese, Stephanie (her mom), Chelsea (her sister) & Giovani (her dad). Analiese was transplanted in St. Louis a couple of years ago, and talking with her mom was part of what convinced me to give St. Louis a try. So, it was a real treat to get to meet them and have someone to talk to while we were there. You can see a picture of Tanner & Annaliese under the photo page.

After the balloon festival, we went to the Ronald McDonald House and got to meet another family who is in St. Louis for transplant. Kaitlyn got her transplant 15 days ago, and is now recuperating at the Ronald McDonald House. She had a whole house full of visitors, but they managed to make time for us. So, we got to meet her, her parents (Mary & Don), twin brother (Trevor), an aunt, and all four grandparents. Our story was what led that family to St. Louis. So, it was pretty neat to meet the family that led us to St. Louis in the morning & then meet a family that we had led to St. Louis in the afternoon.

Kaitlyn looked great for being so close to transplant. And, it was SUCH a treat to meet her brother, Trevor. Trevor is such a good kid - he took Morgan (who was driving Randy & I bats running in circles) and played with her, pulling her in circles around the playground. She just loved it and really adored him. I can only guess how difficult it is for the "other twin" to sit on the sidelines while their sibling is getting the medical care that they need. Regardless of how hard you try to keep it equal, undoubtedly, the "other twin" probably gets less attention. Trevor never seemed to mind - he was such a good sport playing with the kids, and even helped carry his sister's stuff inside later on. Trevor, you are one classy kid! Kaitlyn, stay strong & hopefully you'll get to go home soon!

Then, to top off our weekend, we got to meet with our transplant coordinator for breakfast this morning. It was good to see her outside of a work environment. We also got the treat of meeting her daughter who was just as adorable.

So, it was a wonderful weekend, all be it a LONG one. The next couple of months are busy ones for us. This next weekend brings the twin garage sale that I'm selling (and buying) at & Grandma Crazy & Grandpa 3 Hairs are headed down from Iowa. Randy also tests for his professional engineering degree on October 28th. So, he is squeezing in all of the studying that he can.

We don't do labs for another two weeks - so we are grateful that everything is stable and things are going well.

Have a good week!
Stacy

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Saturday, September 10, 2005 0:16 AM CDT

I know it's a bit early for the Halloween theme backgrounds, but I decided with the new pictures it was appropriate.

Not much to update here. We changed Tanner's Prograf dose to 1.2 mL twice a day (that 0.6 mg for all our liver buddies). His Prograf level has been running high the last few lab draws, and they don't feel like it's necessary to be that high this far out from transplant. And, we don't have to repeat labs for 4 weeks (which is really 3 weeks since we drew a week ago). Yippee!

Otherwise, it should be a quiet weekend. We are preparing for a fun trip to St. Louis where we should get to meet our liver friend, Kaitlyn & her family, as well as celebrate the 20th anniversary of the first liver transplant at St. Louis Children's hospital, and have brunch with our coordinator on Sunday. It'll be a busy trip!

Please say a prayer for our nanny, Ashley. Their birth mother has gone missing (or more likely decided to not adopt her child), so unless they locate the mom this weekend, they will have to go back on the waiting list. This is one of those known risks of adoption, but it isn't necessarily easy. So, please keep her & her husband Trae in your prayers - for resolution in this matter, and a healthy, happy baby to adopt soon.

Of course, this means that Grandma's trip will be delayed for a bit. She's a little bummed, but it will all work out in the end.

Have a safe weekend & enjoy the new photos!
Stacy

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Tuesday, September 6, 2005 5:00 PM CDT

Just a quick update.

We had a great holiday weekend. We got a lot of stuff done - including going through our entire cupboard, freezers, & refrigerators to label anything that contained "egg" (see previous post on Tanner's new egg allergy). So nice to have a long weekend, and have a good share of our "tasks" done since I had taken Thursday & Friday off.

We had Tanner's labs repeated on Saturday. Things seem to be ok. His hematocrit & hemoglobin levels are down, but his white blood cell count and ANC count are normal. His liver labs look FANTASTIC - except for the Alkaline Phosphate which is 5000+. This number can be related to a multitude of things (including growth), though, so I don't think it's much to worry about.

I do believe that Morgan grew about 3" over the weekend. I don't know what happeend to my baby girl, but she is definitely looking more & more like a little girl & not a toddler.

And, Grandma Red will be coming to spend a few weeks with us. Yes, that wasn't a typo - a few weeks. Our nanny, Ashley & her husband are adopting a baby, so she'll be headed out to be there for the birth & bring the little one back home. Grandma is coming in to help watch the kids during that time & ease the financial burden to mommy & daddy (temporary nanny service is INCREDIBLY expensive). I'm sure if the kids understood this, that they'd be as excited as Grandma is. Let the spoiling commence!

All for now...our liver friend, Kaitlyn, is doing well with her transplant (Friday night). She's had a few bumps in the road, but those are almost always expected. Here's her website again: http://www3.caringbridge.org/nj/kaitlynrose/

Thanks for checking in on us!
Stacy

Coming up in our little kingdom:

Saturday the 10th - Daddy goes golfing
Sunday the 11th - KUMC NICU reunion
Saturday the 17th - 18th - STL 20th Liver Transplant Anniversary Celebration
Sunday the 18th - Grandma flies in

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Friday, September 2, 2005 7:23 PM CDT

Morgan saw the ENT today - all is going well with her ears. She has excessive ear wax, but they cleaned that out, and we don't have to go back for 6 months. They are hoping that this set of tubes will last at least a year (and so are we!).

Tanner saw the allergist today and we did skin allergy testing. Tanner IS allergic to egg whites - and since you can't separate 100% of the egg white from the egg yolk, we have to avoid eggs altogether.

That sounds easy, and it isn't too bad, but eggs are in the weirdest of things. Of course, I'll give you a for instance of some of these: marshmallows, Pizza Hut Sauce (but not the dough - check it out at www.pizzahut.com), many, many pastas, some baby foods.

It's a pretty serious allergy, and the more times we expose him, the worse the allergy gets. Tanner is too small (weight wise) to get an EpiPen which we could use if he were having an anaphylaxis reaction to something. He has to be at least 22 lbs (supposed to be 33 lbs) before they'll even consider it (he's just shy of 18 pounds right now). They aren't too concerned since we can control his diet fairly well right now, and there are only a few people who can feed Tanner.

The part that worries them is when & if we go somewhere else (i.e. holidays at relatives, etc). At that point, the kids will be able to reach things on countertops, crumbs that have been dropped, etc. And, sometimes well-meaning adults slip kids a piece of candy or cookie - not realizing that these kind of things can be very dangerous to someone with allergies. If Tanner were to inadvertently be fed something with eggs, we are to give him Benadryl & go to the local hospital ER (even if he's not having a reaction). We are to wait there for 2 hours until we are sure there is no reaction. Now doesn't that sound like fun?

The allergy thing is really "no big deal". He has a 90 percent chance of outgrowing it by age 5. It can be controlled by monitoring his diet. We'll just have to be careful as he gets to preschool (still several years away) and when around other people. Maybe we'll get a "Don't feed me shirt" (http://www.cafepress.com/kwfa.18136542)

And, an update on our friend, Kaitlyn who received her liver transplant very early this morning. She is doing well & is out of surgery - already bossing the medical team around. As you'll remember, the first 48 hours are the most critical, and unforutately, on a holiday weekend, the quietest & most lonely, too. Please keep them in your prayers. Here's a link to her site (you'll have to copy & paste) : ww3.caringbridge.org/nj/kaitlynrose/
Sign her guestbook - I can't tell you what a morale booster that is!!!

Have a wonderful memorial day weekend. I'll try to post new pictures when we get a chance.

Love,
Stacy

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Tuesday, August 30, 2005 9:05 AM CDT

**********Thursday Prayer Request**********

One of our liver friends, Kaitlynn, got the call for her liver today. She is 10 & has had a lot of pain associated with the cirrhosis of her old liver.

She's pretty near & dear to us for a couple of reasons - she's also a twin & they are also going to St. Louis for transplant. Please say a few prayers on her behalf.

******************************


Quick update.

Tanner has been throwing up some since Thursday of last week - always the last bottle right at bedtime. We thought he was overeating - his tummy is only so big and that little dude is EATING. So, we cut back on his nighttime bottle, and that still didn't seem to help.

Talked to St. Louis. They wanted us to see Dr. Maben to rule out anything (i.e. an ear infection). I complied, but thinking while making the trip up there that it just didn't SEEM like an ear infection.

Boy, was I wrong. He's got a full blown ear infection in one ear & fluid behind the other. So, we're starting him on Amoxycillin. Hopefully that will clear it up. The little dude gave me no indiciation of an ear infection. Oh well, "typical" kid stuff - gotta love that.

I'm taking a L-O-N-G weekend. I'm taking 2 days of vacation, although it really isn't going to be much vacation. Thursday is filled with household to do stuff (car maintenance, vehicle tags, our once-a-month meal place, doctor appointment, hair cut, kid's pictures) and Friday is filled with doctor's appointments for the kids (ENT for Morgan, vaccinations for both, & allergist for Tanner). Friday afternoon is for the once every 6 month shopping that I need to do at the mall. Thankfully, I'll have Saturday - Monday off to catch up!

We also have exciting news. Our nanny, Ashley, and her husband, Trae are going to be adopting a baby soon. They have a birth mom now, and the little girl is due September 22nd. We're excited for them - and they are both excited and nervous. With any adoption, there is always a chance that the mother could change her mind at the last minute. Please keep them and the birth family in your prayers, that this goes smoothly. Ashley will be bringing the little one to the house with her and will be watching 3 babies every day (I don't envy her!). It will be interesting to see how our two interact with another one.

All for now....hope you are having a good week.
Stacy

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Sunday, August 28, 2005 7:30 AM CDT

Dear Tanner -

It was 6 months ago that they took you from my arms into surgery. I hope that you never have to know the pain of having your child stripped from your arms and taken into an operating room.

At that point, you were 10 months old. You only weighed about 12 pounds, and your skin was so jaundiced. When people would ask how yellow you were, I would tell them, the whites of his eyes are the color of Mountain Dew. You were on 8 different medicines - medicines to help your liver functions and lots of vitamins. We fed you constantly, even waking you up throughout the night to get an extra feed in. If we fed you too much, you threw up because there wasn't enough room in your stomach. You slept a lot - we were lucky if you were awake for 3 - 4 hours per day. You never complained, though - you were a happy little baby while you were awake. You were so far behind developmentally - you were barely able to sit.

Here we are 6 months later. To us, it's been a blink of an eye, but to you, it's 3/8 of your life. You have come so far in that time. You skin has a healthy glow to it now, and your eyes are so blue against the actual whites. You have two little teeth now, and a third that is trying to make it's way through. Their a little bit discolored, but that's expected with all that you've been through. You were sitting up within a couple of weeks of transplant - but, it really took you awhile to learn to crawl.

You didn't start crawlnig until Memorial Day weekend - right after you got that Broviac removed (maybe that was the culprint). But, you immediately started pulling up on furniture. And, now....now you are everywhere. You are toddling everywhere - with all the bumps & scrapes to prove it. We have waited so long for you to be doing normal baby things. (Now, I just can't wait to hear you say "mama".)

Of course, this journal entry wouldn't be complete without mentioning your hero. Grandma has been a tough little cookie through this whole thing. You see, giving up a piece of your liver isn't exactly a piece of cake - either physically, mentally, or emotionally. I think Grandma is doing much better now, and we all know it's good for the soul to see you doing so well. I hope that you will always have a special bond with your Grandma Red, and that you grow to appreciate and be grateful for the second chance that she gave you. I know that mommy & daddy will never be able to say in words how grateful we are.

Of course, all of this wouldn't have happened without the wonderful medical staff at St. Louis Children's Hospital. I'm still amazed that such a wonderful group of talented people is at one hospital. We were lucky to have been led to the right center.

Today will be a good day - a day for praise and thanksgiving. It'll be the first of the many anniversaries that we celebrate as your "liver day". I think back to where we were a year ago - filled with worry, not yet knowing if your kasai would work. We'll always worry (what parent doesn't), but it's actually much easier now.

We love you, son - and thank you, Grandma for giving us a chance to enjoy & raise our son.

Love,
Mommy & Daddy

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Tuesday, August 23, 2005 12:49 AM CDT

Back to the old grindstone....

We are home from our weekend trip to Iowa. Other than the actual travel to Iowa (where Mommy ended up singing about 1/2 the way to & half the way back), things went pretty smoothly.

Grandpa got quite a workout chasing babies. It's amazing how quickly they are moving now, and when they go in opposite directions, it definitely takes two people. We did not use the baby harnesses that we bought, but we are keeping them for the occasion when we do need them.

We were fortunate enough to get to see some immediately family while we were there. Cousin Katelynn has become quite the little mom and wanted to feed, hold, & escort "her babies" everywhere. I'll post some great pictures we got of them playing with the bubble machine over the weekend.

Grandma & I managed to get the twin's Halloween costumes cut out. Yes, I have foolishly decided to try to make the kids' Halloween costumes. I had already purchased the pattern and was in the process of purchasing the material, when I realized that this was going to cost me more than just outright buying a (rather nice) set of costumes. Not to mention the hours of torment that it is sure to inflict. Of course, I haven't finished them yet. And, if you see my kids at Halloween, and they are wearing brown paper sacks - don't ask. My little endeavor probably didn't go well.

Tanner has decided in the last 24 hours or so that Morgan might have an idea with all of this walking stuff. So, in lieu of crawling, he is now ALSO toddling everywhere. Now, their waking hours are spent lapping the living room, perfecting their newly acquired skill.

Practice is needed. Yesterday, as Morgan was practicing her turbo mode of walking, she stumbled and knocked her head into the (fully padded) footstool. She has a huge abrasion on her head that swelled up pretty badly. I was rather worried - but only because I had read an article about how dangerous hitting your head can be in that area (around her temple). I guess that's what I get for actually reading something.

Medically, we are quiet for a few weeks. Dr. Maben's visit was fairly uneventful. We didn't get immunization due to a scheduling conflict. He didn't want to check Tanner for an egg allergy, and referred us to an allergist. So, we are headed back on 09/02. Morgan sees the Ear Nose Throat doctor at 8:30, they both get immunizations at 9:30, and then Tanner sees the allergist at 10:30. Tanner gets labs on 09/03.

I'm taking "vacation" on 09/01 & 09/02. We have a ton of stuff to get caught up on around the house (vehicle maintenance, vehicle tags, & all the other stuff that you can't get done on weekends and after 6 p.m.). So, I'll get to enjoy my vacation taking the kids to the doctor. I know you are all envious.

That's about it from now. I'll add more new pictures soon.

Thanks -
Stacy

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Thursday, August 18, 2005 8:04 AM CDT

Well, sometimes it seems like it just never ends......

Tanner is sick again. We thought he had successful beat the flu bug after 9 days of not feeling good, but alas, it was back last night. He threw up after we put him to bed. He did end up taking a full 8 oz of Pedialyte and keeping that down. But, now, the diaherra has set in. He did eat breakfast, and hopefully he'll take fluids well today. But, it's frustrating that a "little bug" that set us back two days is kicking his butt for a few weeks.

We have our 15 month check-up with Dr. Maben on Friday. If Tanner is still under the weather, we may do a stool culture to make sure that he hasn't picked up something really bad. And, we should be getting vaccinations, but that may not happen if he's still under the weather.

Otherwise, we're just kicking along. Morgan doesn't really crawl much anymore (she drops to her bottom or hands and knees when she doens't want to be forced to go somewhere), and her gait is starting to gain some momentum. I swear I saw her RUN across the kitchen yesterday. Sprinting is in the future.

Tanner is taking more & more indpendent steps. He's walked quite a long ways a few times, but other days, he refuses to walk at all. I'm pretty sure that this flu bug isn't helping matters on that end, either.

We got an offer for $65 for the two of them last night - that's $63 higher than our most recent offer of a $1 a piece. If we hold out a bit longer, we may get enough money out of them to actually be able to fill the car with a whole tank of gas.

Morgan also got "hit on" last night at Target. As I was walking down the aisle with her in my cart, a little boy about 2.5 years old walked by, pointed his finger at Morgan, and said "THAT'S a cute baby!". I didn't know whether to be proud or feel sorry for the little guy - boys like him will be one of my husband's mortal enemies in about 13 years.

Thanks for checking in on us - check back soon for new pictures of our Speed Racers.

Stacy


Thursday PM Update**********

Could it be that Tanner has an egg allergy? His most recent throw-up & bout of diaherra lasted about 12 hours and corresponded directly to Tanner eating eggs for the very first time. He threw up about a week ago, also - and that correlated to eating ice cream at Sam's. At the time I had made a comment to Randy that the ice cream tasted "homemade" and I wondered if it had egg in it....

We'll definitely talking to Dr. Maben about this....

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Saturday, August 13, 2005 12:10 PM CDT

Quick update from our world.

Last week the whole family got a virus / stomach bug that laid us up. It took most of us a 2 - 3 days to get over it, but it's taken Tanner a full 9 days to get over it. This is just one of the things that make is so important for us to limit our exposure to bugs. Tanner isn't necessarily more susceptible to them - but when he does get one, it is very difficult for his system to battle it.

Last weekend we had to repeat labs due to the bug. A coupe of his liver enzymes were up slightly (typical with a virus). His magnesium level was low and his rejection medicine level was high (typical with diaherra caused by the bug). We are repeating labs this week to see if everything is better. If they are, then we can hopefully go to MONTHLY labs.

Otherwise, we are just trucking along. The kids are getting more brave & bold with their steps. They are now walking between items and will take 5' - 10' at a time (to no where in particular). Crawling is still the preferred method of travel, but Morgan realizes that she can carry things while she walks. Since she loves to hoard things (particularly stuffed animals), this is intriguing. We're excited to see them hitting milestones, but not sure if we're up to keeping up with two toddlers yet!!!

We have deemed that Morgan has her first official word: Bye Bye. We think "Hi" is close behind, and we're working on book, ball, up, out, and thank you.

Tanner has FINALLY hit the milestone of clapping. It's not as fundamentally correct as the therapists would like, but it IS clapping. He's also jabbering up a storm now. We don't mind him talking to his sister and "reading" us books throughout the day, but talking into the monitor at 4:45 a.m. has not been so enjoyable.

We hit another first today....Randy issued "THE CURSE" today. You know the one...."I hope you have kids JUST LIKE YOU SOMEDAY".

Enjoy the new pictures!!!

Stacy


Coming up in our world:
Tuesday - Tanner has physical therapy
Friday - Tanner & Morgan have 15 month check-ups with Dr. Maben
Friday afternoon - Tanner has physical therapy

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Wednesday, August 3, 2005 8:40 PM CDT

*****************Monday AM Update*****************

Please say a special prayer for another liver buddy of ours.

Ms. Janna is from Wichita. In addition to getting to know them online, I've talked to her mom, Tammy, on the phone a lot of times. She is seen by the GI doctor here in Kansas City - and we've never officially met in person although we've been close several times.

Janna got the call today for her liver. Her family has driven to Omaha, and they are inpatient waiting to hear whether or not the surgery will be a "go".

Please keep her family & the donor families in your thoughts & prayers!

www.caringbridge.com/ks/janna
(you'll need to copy & paste this into your browser)

******************Thursday AM Update***********

We're home. Morgan's tubes were a piece of cake. She was so good through the entire procedure, even when she hadn't eaten since 8 pm the night before.

We're home, she's taken some apple juice, and starting to toddle around again. I'll be back to work in a few hours once I make sure she can keep some "real" food down for lunch.


Our liver friend, Havalah, continues to do well. Continue to keep her in your prayers - those first few days are the most difficult & exhausting.

***Back to Wednesday Update******

We're all doing well on this front. Morgan has decided to walk. Tanner may have started before her, but she is already steadier than he is. She's crouching down and pushing up to standing without holding onto anything. The last few days, she has lost the baby look and is beginning to look more like a toddler. My babies are growing up!

A few prayer requests tonight. Morgan gets her ear tubes tomorrow. Tanner has been into surgery 5 times - this is Morgans' first time, and we're a bit nervous. It's a quick surgery, BUT....

Also, please say a few prayers for our liver friend, Havalah. She got the call last night and had her liver transplant today. So far, she is doing well. The first 48 hours are always the most critical. http://www.brokebox.com/baby/updates.asp

Include a prayer for the family that made the difficult decision to donate their child's organs. Havalah's donor was a 15 month old toddler. My babies are also 15 months old, and I cannot imagine the pain and grief that family must be going through right now. For them to be able to save other people's children during this time is one of the most unselfish things a family can do.

I'll add an update tomorrow regarding Morgan's tubes.

Stacy

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Friday, July 29, 2005 7:00 PM CDT

Home!

We made the roundtrip in a little under 24 hours, and it was a LOOOOOOOOONNNNNNNGGGGG 24 hours.

The original plan was to give them their bedtime bottles at the normal time (7 p.m.) and then throw them in the car instead of the bed and DRIVE DRIVE DRIVE. Well, Morgan didn't fall asleep, and Tanner slept very little. We pulled over at 8:30, fed them a little, and then drove on in to the west side of St. Louis. We got to our hotel, unloaded the car around 11 p.m., and the kids FINALLY fell asleep around 1 a.m. after much screaming, yelling, and kicking. I feel sorry for our hotel neighbors last night.

The drive home was better. Neither had naps this morning, but neither would take much of their bottle today. Morgan screamed the last 45 minutes home - more from wanting to get out and move than anything else.

As far as the appointment went, Tanner is doing well (we pretty much knew that). The threat for a serious case of rejection and infection become smaller & smaller as time goes on, so for now, we are going into cruise mode for awhile. We discontinued the Milk of Magnesium that he is on, but, we'll add back in a phophylitic antibiotic in a few more weeks. So, it will still be 3 meds for awhile (his rejection med & baby aspirin rounding out the course). All very manageable and routine by now.

We are going to MONTHLY labs and do not have to return to St. Louis for a check-up for SIX MONTHS unless something happens before then. We are going to go to St. Louis in mid-September for the 20th Anniversary of St. Louis Children's Hospital First Liver Transplant. We're looking forward to meeting other transplant families.

While there, the transplant team did us a big favor and took a quick peak at Morgan's ears. She has been acting a little fussy & clingy the last few days. Sure enough, ANOTHER ear infection. They were even nice enough to write us a prescription. Hopefully this will not delay her ear tubes, as it is painfully obvious that she needs them. Tubes are scheduled for Thursday, August 4th.

I am headed to Denver for work for a few days. Daddy will be at home by himself with the kiddos. It's not as difficult as it used to be, but daddy will have a long evening or two. Thankfully our nanny, Ashley (in the picture above with Tanner), was able to stay until Randy could get off work.

Hope you all have a great weekend!
Stacy

---

Monday, July 25, 2005 7:43 PM CDT

Walking - did I say walking!!?!

Well, we sure thought that Morgan would be the first one to take independent steps around here, but we were WRONG. We've been practicing Tanner's walking by holding him out about 3 - 4 feet from us and letting him walk into our arms to big hugs, cheers, and clapping. This afternoon, he decided to give it a go himself. He turned away from me and walked to his walker once and to the sofa another time. By the time daddy got home, he was walking 5 - 7 feet between us without falling. All of those were not "independent, first steps" to me, though. And, then, shortly before bed, while daddy was cleaning the kitchen and I was playing with Morgan, Tanner turned from near the refrigerator and walked over to the stove. That is 5 unprovoked, completely independent steps (on tile floor may I add) without falling. The kid is mobile!

Morgan has completely reverted to not taking steps. She had a nasty tumble over the weekend (completely her own fault), and will not take a step for us now. Although, she is still using the walker. I'm sure once it sinks in what Tanner is doing, she'll be right behind him. What a change to have Tanner doing something first!

Tanner's labs today were fantastic. His ANC was up to 3800 - which is incredible. His other liver labs were perfect. So, all is well.

We have a regular check-up in St. Louis on Friday - at which point we may get to go to....drumroll....MONTHLY labs. We'll miss getting to see our regular lab tech, but I'm sure Ms. Chris will understand.

All for now. We'll update after our trip to St. Louis & I'll try to get up some pictures in the next few days.

Stacy

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Saturday, July 16, 2005 8:19 PM CDT

Oh boy - we are in for trouble.

Morgan decided to take her first few steps tonight. She's been cruising around furniture for weeks now. A few weeks ago she was starting to take a step - but after her latest ear infection, we couldn't coax her to take any independent steps.

This afternoon, Randy had grabbed a slice of cheese for a snack and sat down in the recliner to eat it. Morgan took about 3 steps between the ottoman & the recliner to get a bite or two of cheese.

AAAHHHHHHHHHHHH............the power of cheese.

I can only assume this will be the beginning of her toddling around the house. Hopefully we'll have another couple of weeks before she becomes really proficient at it. Tanner probably won't be far behind, either.

Tanner gets a CBC with differntial tomorrow afternoon. Our current plan is to go out for supper mid-afternoon, and then take Tanner in from there for a blood draw. The last 3 blood draws, Tanner hasn't fussed or cried at all. He only winces a little when the needle goes in & then watches the blood fill the syringe. There's a part of me that doesn't know whether to be proud that he's such a big boy - or a little sad that he's had to become accustomed to all the sticks and pokes. Either way, I'm grteful the wonderful, caring lab techs we've found.

We'll post lab results on Monday - in the meantime - enjoy the new pictures!

Stacy

Special Prayer Request: Please say a prayer for one of our liver buddy, Aiden (www.caringbridge.com/fl/aiden). He has been having severe food allergies. His mom, Lisa, is dealing with that as well as being 8 months pregnant with his little brother. She needs lots of extra prayers right now.


***********Monday Update***********

Tanner's ANC is up to 1700! Hooray! This is very good news. "Normal" is considered to be above 1500, so we are finally within "safe" limits.

Tanner still does have one component of his WBC that is a little wacky. It's called the Eosinifils and it's 2.5 times higher than what it should be. No one seems to know for sure why, but this number can be an indicator of allergies. We are asking for an allergy test to be run, and will go from there. The rise in this number corresponds to introducing pasta into the kids diet, so hopefully it is something as simple as an allergic reaction to egg or wheat in the pasta.

---

Tuesday, July 12, 2005 9:09 PM CDT

Quick Update.

Morgan's tubes are scheduled for August 4th. Our liver team is out of town that week - so no chance that we will need to be in St. Louis. And, our pediatrician will be back in town. So, if we need any help from him, he'll be around. I never realized how valuable a good pediatrician really was until recently.

Tanner's ANC was up to 732 today. Better than Friday (448), but still very low. Some of the other components of the WBC are still out of whack, too.

No verdict yet on whether or not we will be headed to St. Louis for a bone marrow biopsy. I really don't want to put Tanner through the added pain, but I've heard from other people who have been in our shoes, that the bone marrow biopsy can provide a wealth of information. And, while it may not be able to give us an answer as to what is causing all of this, it could rule out some really bad things. We hope to hear tomorrow what is in store next.

His liver functions look perfect. We don't have three of the numbers back yet (GGT - shows how the bile ducts are looking, magnesium, and Prograf - his rejection medicine levels), but everything else is looking dandy. At least there is nothing to worry about on that front for now.

I will add a short message to the bottom of this one when we have information from St. Louis.

Love to all -
Stacy

THE PLAN

Since Tanner's ANC is rising, we will monitor it weekly. We have our next "regular" check-up in St. Louis on 07/29, and if things are still just kind of hanging then, we can schedule a bone marrow biopsy to coincide with that visit.

In the mean time, "bubble boy" precautions are lifted, although we still have to be careful. No large groups of people (church, large family gatherings, Wal-Mart on Saturday, etc). But, we can do things within reasonable limits (Wal-Mart or Target EARLY in the day, eating out before the rush hits, farmer's market, etc).


Friday Prayer Request:
Please say a prayer for our liver buddy, Aiden. Aiden had his liver transplant when he was 8 months old - and that was nearly 2.5 years ago. He's had problems with extreme allergies and had recently had multiple anaphylaxis episodes. Please pray for wisdom for his doctors and a special prayer for his mommy who is expecting Boy #2 in September.

---

Saturday, July 9, 2005 8:26 PM CDT

Ok, first things first.

Tanner's ANC was up to 448 on Friday. That is from 168 on Sunday of last week. So.........not a bad improvement. A few of his WBC numbers are wacky - but the ANC is improving. So, the current plan of attack is to repeat labs on Tuesday morning (full set of labs including liver panel & Prograf level). If the ANC isn't MARKEDLY better (I don't know for sure, but I'm guessing over 1000), then we will schedule for a bone marrow biopsy in St. Louis the week of 07/18. Hopefully early in the week, since it is possible I will be headed to Denver for some meetings later in the week.

Morgan is NOT having tubes put in on Monday. I could go into a lengthy description here of what a pain some doctors can be - but, let's just leave it as a personality conflict. The head of the Pediatric ENT department will be doing Morgan's tubes sometime in the next couple of weeks.


Based upon some things that this ENT said, I would like to make the following statement:

We love Morgan just as much as we love Tanner. Due to Tanner's health conditions, it sometimes necessitates that we spend more time with him (and probably talk about him a little more). Because of Tanner's health, our entire family has had to make many sacrifices.

Thank goodness we have a wonderful nanny (and her gracious husband) who has taken Morgan into their home more than once to help us out. Morgan is showered with love and attention when she stays with them. Our children spend as much (if not more) waking time each day with their nanny as they do with us. Ms. Ashley adores these kids and we are lucky that they have this "third parent".

Please don't ever doubt that because we don't haul Morgan to St. Louis or that we leave her in someone else's care that we love her less. We are absolutely infatuated with this little girl - her $1,000,000 smile, her little foot that "thumps" on the floor whenever she is thinking, the little laugh that resonates through our living room, and the light behind those eyes when she is thinking. She is our strong warrior - we couldn't be more proud or love her anymore.


Otherwise, we are having a quiet weekend. We are still under house arrest. So, our weekend has primarily consisted of spoiling babies, running errands, paying bills, sorting through insurance EOBs, and chores around the house.

We will update when we have Tanner's labs and when we have a firm date for Morgan's ear appointment.

Love to all -
Stacy

---

Wednesday, July 6, 2005 3:48 PM CDT

Ok - I'm done moping & feeling sorry for myself/us. In the whole realm of things, there are so many kids and families that have it so much worse than we do. Sometimes I lose sight of the fact that we, really do have it "easy" - especially compared to others out there.

Morgan's tubes are officially scheduled for Monday. We are going to try Zithromax on her - and hope that that will hold off the infection until Monday. I just couldn't bear the thought of making her go through those injections - we are told they are very painful & left her little thighs bruised up.

We repeat Tanner's labs on Friday. If the ANC is still low, and he has remained "healthy", then we will schedule a bone marrow biopsy for early next week. We aren't certain if we will do this at KU or at St. Louis. Randy & I are still debating that.

All for now - I will post as soon as we have labs on Friday.

Stacy

---

Tuesday, July 5, 2005 10:00 PM CDT

During this whole preemie / liver problem / transplant process, I've tried to maintain a pretty positive attitude. But, I have to admit, that today/tonight, I feel drained. Like we have done all of this - and here we are, new problem, new set of things to learn. I'm tired, I'm worn out, I don't know where the energy will come to keep going.

We got back a manual diff on last Thursday's ANC count that was better at 530. We re-drew labs on Sunday - Tanner's ANC (automated) is down to 168. I haven't heard a manual diff (yet). The original response from the transplant team was "keep monitoring". (Remember, 1500 is the lowest they like to see - anything below 500 is critical)

I was talking to our pediatrician today regarding Morgan's latest ear infection - and he asked about Tanner. We had a good discussion and I expressed my concern about this happening for over a month now with no action plan in place. I also told him our feeling of being completely maxed out - not knowing how much longer we could keep ourselves locked in our little bubble. He was concerned and decided to contact the team himself.

The liver stuff - I'm beginning to understand. We've had friends who have gone through rejection - TREATABLE! EBV - MANAGEABLE! I know that all of these things can be serious, but on the same token, I've seen other kids go through them and DO WELL. But, this hematology stuff - very rare amongst our liver buddies.

So this hematology stuff is still foreign to me, but this is what I got from my pediatrician's explanation. The current theory is that Tanner received some bone marrow cells in either the piece of grandma's liver or a blood transfusion that he got during transplant (no transfusions since then and no idea how or why some bone marrow cells would be in there). They think that his bone marrow cells are now doing battle with the transfused/trasnplanted cells for control - if that is the case, then it will eventually "even" itself out. How long does this take? No one seems to know.

No more shots of Neupogen for now. If they were to give him a shot to make the bone marrow work, it would give them a bad read on a bone marrow biopsy. (Ok - that part actually made sense to me.)

We will repeat labs on Friday. If there is no marked improvement in his ANC and he is still healthy, we will have a bone marrow biopsy done (probably here at the local hospital) and try to find out what is happening. They will probably then re-start the Neupogen injections. If he gets sick before then, we will be immediately admitted, bone marrow biopsy performed, and IV antibiotics started.

This is a pretty scary place to be - we are told that anything Tanner picks up is very dangerous. And, that if he did contract something viral, bacteria, etc - we would have HOURS to take corrective action. Our pediatrican actually recommend that we take him to the closest hospital vs. driving the additional 20 minutes to the hospital he has privileges at. He said that that 20 minutes could make the difference.

Scared? Immensely. The analogy my husband and I have come up with is it's like driving a car. You can drive for so long without getting in an accident, but how long can you keep driving without being in an accident? How long can we keep Tanner away from infection / bacteria / germs? It feels like we are waiting for the inevitable to happen.

We know that every transplant kiddo has their share of bumps and obstacles, and that it does get better with time - the first year is the challenge. Somedays it's just tough to continue the battle.

As for Morgan, the Augmentin prescribed for her ear infections doesn't seem to be doing the trick. Dr. M (the pediatrician) said to give it 24 more hours. If it doesn't work, then we'll either switch prescriptions or go to an injectable antibiotic. We will find out tomorrow when she is scheduled for tubes, but the goal is next Monday (July 11th).

Off to bed - maybe a good night of sleep will help (but how are you supposed to do that when you are also supposed to be monitoring your child for a potential fever every few hours?)

Stacy

---

Monday, July 4, 2005 6:20 AM CDT

****************New Photos***********************

Happy 4th of July!

It's nice to be spending this holiday at home - last year at this time, Tanner was inpatient, and Morgan had just gotten home from a stay in the pediatric ward at KU.

Our main goal this weekeend has been accomplished - we got cabinet locks on yesterday. Since Morgan has learned to crawl we'd have some of the handles rubberbanded together - but now we have genuine tot locks in place. We missed two drawers because the locks we had purchased wouldn't work on them. But, we put on 18 tot locks, so I'm pretty happy.

We had Tanner's labs redrawn yesterday - we will know the results on Tuesday. We were told to redraw labs "sometime next week" - I had intended on waiting a few days later, but we decided to take Morgan to Urgent Care which is at the same hospital as Tanner's labs, so might as well kill two birds with one stone.

Yes, Morgan went to Urgent Care. She saw the ENT last week & we were told no infection, but she had fluid on her ears. Well, round about Wednesday, Morgan started becoming extremely lovey and clingy. Several times I said "if we hadn't just seen ENT, I'd swear she has an ear infection". Well, Saturday she started "nose diving" occasionally. She'd be crawling along at full speed & just wipe out. Finally, we decided to take her to Urgent Care & sure enough - an ear infection. On Monday ENT said one more ear infection & they'd recommend tubes - so, I'm thinking tubes are in the future. For now, a prescription of Augmentin for 10 days.

Finally, an update on my mom. The surgeon thinks that he was able to scrape most of the infection out. They have identified the infection as a staph infection and yesterday started her on a different course of IV antibioitics. They monitored her overnight, and if all went well, she'll be able to come home this morning. She has a picc line (semi-permanent IV) in her left arm that will be used to administer the IVs for the next 6 weeks.

She is hoping to get some clarification from the doctor's office and the infusion therapy people today. Yesterday, they brought her a pump and told her it had to be attached and run ALL DAY. I'm not sure how well that will work for mom. She uses her arms a lot in the wheel chair and that line could get easily tangled. We are used to doing the IV antibiotics where you run the medicine for 30 minutes, flush the line, and are good until the next dose. Hopefully they can do something similar.

I'm a little frustrated, also - they are doing mom's antibioitics every 6 hours. That's a tough schedule to maintain - especially when you can't connect them yourself (it's difficult to hold the end of your own picc line). So, I'm not sure how mom & dad are going to work that one out.

Please keep our small family in your prayers - pray to heal grandma soon, for Morgan's ears, and for an answer to Tanner's low neutrophil count.

No big plans for us tonight. We still have to keep Tanner secluded - maybe next year we can gather with the neighbors to watch the fireworks. Have a wonderful 4th!

Love,
Stacy & Randy, Tanner & Morgan

---

Friday, July 1, 2005 3:16 PM CDT

For more news on what's been going on in our life check out the journal history.

The doctor who did mom's surgery to scrape out the infection yesterday seems to think that it was successful and that they won't have to go back in. If everything still looks good, the she may get to come home on Sunday on IV antibioitics. Yay!

Tanner - well, we're still waiting. The interim nurse coordinator called today without much information. When I started prying her with questions I got a lot of "wow, I didn't know that" and "hmmm....I'll have to talk to the doctor". They have contacted the lab hospital to see if they can run a manual differential to get more precise results than the automated run that was run yesterday & came back with our low number (430). So, we are STILL waiting for information. The last comment the nurse made was "we'll know more when we get his labs back next month" - I'm sorry, but with his ANC that low, I refuse to wait another month for labs.(WE MISS YOU, PENNY - WE CANNOT WAIT FOR YOU TO GET BACK ON TUESDAY!)

I will post an addenda when we get more info. Thanks for all your prayers!

Stacy


PM UPDATE**************************

A manual count shows that Tanner's ANC is 535. We'll repeat labs next week and wait for direction at that time.

It's the not knowing that really stinks.

---

Thursday, June 30, 2005 1:39 PM CDT

Oh boy - where do I start with this one?

Poop color is a great indicator of how the liver is functioning. Post-kasai we were told to pray for green poop - and green poop is still a good indicator of things working properly.

Well, Tanner's stools got a little light in color earlier this week. We contacted St. Louis and were told to watch the color & report back 48 hours later. 2 days later - same light color. So, because it's easier to get labs first thing (and miss less work), we pulled the Mommy/Daddy card and took Tanner in for labs first thing this morning - contacting St. Louis on our way to the hospital.

Turns out his liver enzymes were great (we are still waiting on one, the GGT). BUT (and, there is always a BUT, right?) his white blood cell count is down, and worse yet, his ANC is down to 343 (they want it above 1500). What does this mean? We're not really sure, except for the fact that his bone marrow is not producing the neutrophils like it should.

We are waiting for the team in St. Louis to decide how they want to handle this. I won't be too surprised if they don't decide to bring us to St. Louis for evaluation and maybe a bone marrow biopsy - but, only time will tell. Other things can cause this - too much immunosuppression, a virus (we've ruled out EBV & CMV - but there are plenty of others). So, we're really not sure what is causing it.

On top of that, my mom has been fighting one of the original surgical incisions from last May on her left foot. It has been red, hot, and not looking good lately. She's been into the family doctor multiple times, and each time he didn't think it looked "that bad". Well, it burst open last night with all kinds of infection.

They transferred her to Methodist Hospital in Des Moines late yesterday afternoon. Today, they took her into surgery, removed the hardware in that foot and scraped if for infection. They'll be installing a picc line this afternoon to start some high powered IV antibiotics.

We're not really sure how long she'll be in. They want to monitor this closely, and it's possible that they may have to go in and rescrape out the infection a few times. At the very worst possible scenario (which we are praying DOES NOT happen), they might have to amputate the left foot.

These are the worst kind of days in the hospital - you get an IV antibioitic, and then nothing happens for 8 hours. It's a lot of sitting with not a lot to do - so, if you get a chance, please drop her a note at the following website:
http://www.ihsdesmoines.org/body.cfm?id=698

Patient Name: Karen Robb
Hospital: Iowa Methodist Medical Center

So - I will update as we learn more on either her or Tanner. Please pray for only good things.

Thanks so much -
Stacy

---

Sunday, June 26, 2005 9:27 PM CDT

Wednesday PM Update

First off, the ENT didn't think we should have Morgan get tubes just yet. We are going to wait until she develops another ear infection - and if that happens in the next few months, they will then do tubes.

I have a prayer request this evening. I just got word from my dad that they are admitting my mom to the hospital in Des Moines. She has developed an infection in one of her previous surgical sites (it's been nearly a year since her surgeries). Not a whole lot of details right now - they are going to start some high powered IV antibiotics and consult with the Infectious Disease doctor. Please send up a few prayers on her behalf.


***********************************************************
It's been awhile since my last entry.

First of all, Tanner's EBV & CMV test results came back negative - which was very good. They stopped all of the medications that could have been causing Tanner's WBC to be so low. Tanner is down to one prescription medication - Prograf to keep from rejecting his new liver and 2 over the counter meds. Baby aspirin & milk of magnesia.

It seemed to help. After doing that, his ANC jumped from 150 to about 300 (the ANC measures his neutrophil count - neutrophils are the compenent of the white blood cells that attack infection and bacteria - when these are low, it can be very dangerous - normal levels are 1500 ). We added the Neupogen injections to help boost his immune system (fuuny, we give him one drug to suppress it & another to boost it) - and by Friday morning of last week, his ANC count was up to 3000.

We were told to continue the shots unless we thought he was in pain. We continued them for another day - and then stopped them. Tanner was really fussy, not smiling, screaming & bawling that we could not settle - it was really disheartening. We repeated labs last Sunday (June 19th) and his ANC was around 2000. We drew labs again on Thursday and his level was at 1600. Falling - but, still within acceptable limits.

The main GI doctor is back in town and is convinced that this was all medicine related. He ordered labs in 2 weeks - and if all is well then, we'll wait 4 weeks for labs. I'm excited and nervous at the same time.

To non-medical news - Tanner is MOBILE. His crawling speed has increased dramatically - and he's pulling up on anything / anyone that doesn't move. He's cruising around the furniutre - along walls - you name it. He's even been brave enough to let go and take a step between things now and then. He's learning to crawl up stairs (our physical & occupational therapists are going to be SO impressed).

Now, our only problem with all of this is that Tanner doesn't know how to get down. He will stand for HOURS at a time. Not too bad during playtime, but at bedtime, this is a real problem. We will usually go in and help him "kaboom" and land on his bottom a few times - but at 3:00 a.m., that can get really old. Sigh...I guess in the realm of things, this is a good problem to have.

We are also now self-feeding. We've graduated from Cheerios to bananas, mandarin oranges, peas, pancakes, pieces of chicken fingers, ravioli, meat, cheese, etc. Grandpa even managed to sneak him some root beer float and Coca-Cola this weekend. We are gradually weaning off of baby foods. Now, if Tanner would get a few more teeth (he has 2), it would make this process much easier.

Morgan is doing great. She is now cruising around furniture with only 1 hand, starting to forget and letting go occasinoally, and eating "big kid" food nwo, too. She has 4.5 teeth - so, it's a bit easier task for her.

Tomorrow we have an appointment with ENT to check on Morgan. It's a possibility that she may end up with ear tubes in the near future. I'm kind of anxious about this - especially after what happened to our liver buddy, Anthony. I really don't want to take the chance that that could happen to Morgan.

Other than that - Tanner has labs July 10th and a follow-up appointment in St. Louis on August 5th. Tanner & Morgan have their 15 month check-up August 19th.

It's miserably hot here in Kansas - we're supposed to be mid 90s with no rain this week. So, we'll be hanging out inside as much as possible.

Thanks for visiting - have a good week!
Stacy

---

Wednesday, June 15th, 2005

Well, we have a plan.

The EBV result came back as INSUFFICIENT. This means that they didn't send enough blood away. Our local lab sends their tests out to Mayo Clinic, and they only run EBV on Tuesdays.

So, we had blood re-drawn last night (Tuesday) and it is getting sent to a local hospital that (amazingly) runs the EBV test EVERY DAY. We aren't sure if Tanner's blood will make it there early enough today, or if it will be Thursday, before they run the test. Either way, our hopes are to have a results on Friday.

We are going to stop the Sulfatrim since it is also a bone marrow suppressant. That means we are down to 3 medications (Prograf for anti-rejection, baby aspirin to keep blood thin & flowing, & Milk of Magnesia to help with his low mag levels).

We repeat labs on Mondays & Thursdays.

They are going to start Neupogen (also known as G-CSF)injections. We will continue to do these for 1 week or until his Absolute Neutrophil Count is above 1000. We got our first dose in our pediatrician's office. The rest are on order & headed this way. Insurance is refusing to pay for home health - saying that we can administer the shots ourselves. I cannot even begin to explain how much I am dreading have to stick Tanner. I'm sure he won't be the only one crying when I have to administer it.

If all of this fails, we will be referred to Hematology (in St. Louis) and Tanner will have a bone marrow biopsy done. This could potentially happen as early as the end of next week.

From Monday, 6/13/05

Well, after the whole mess last week, we had labs redrawn yesterday. Tanner's WBC is back down to 4.8 and even worse, his ANC (Absolute Neutrophil Count) is a measly 192. This is the number that they like to be around 1500. After a massive dose of Neupogen, I (and I think all of the medical team invovled) really felt like this number would have been higher.

So, again, we are on strict order to maintain a clean and sanitary environment for Tanner (hmmm....me thinks I need to go home & be scrubbing the floor since he is crawling everywhere).

We did get a Tylenol with Codeine prescription for Tanner over the weekend. He really seemed to be in quite a bit of pain and the Tylenol with Codeine really seemed to help.

Otherwise, it was a quiet weekend. We were under orders to go nowhere & come into contact with no one. So, we pretty much hung around the house and did nothing since it rained & stormed all weekend.

We are awaiting word from St. Louis and where we go now. We will keep everyone posted.

Love,
Stacy

---

Friday, June 10, 2005 9:06 AM CDT

Here is a synopsis of entries from the week from our liver website.

A little information. Part of the delicate line we walk post-transplant is the balance between suppressing the immune system so that it doesn't attack the new liver, yet maintaining enough immune system so that Tanner doesn't come down with every little bug we encounter.

During the first year (and especially the first few months), we have to keep his immuno-suppresant medications as high as possible. This means that we have to be extra careful not to expose Tanner to any bacteria, viruses, etc to keep him healthy. This is a large part of the reason why we try to avoid large crowds - and especially large groups of people that would want to hug, kiss, & touch Tanner. As time goes on, we'll be able to relax our stance, but for now, we must do this to protect Tanner.

One of the main components of your boby's immune system is the white blood cell (WBC). The WBC is comprised of several different components. The two mentioned below are the neutrophils & monocytes. The neutrophils are the part of the White Blood Cells that attack infection and bacteria. Monocytes are the part of the white blood cell that attack fungi & viruses.

Now to the rest of the story:

Monday:

Tanner's WBC has steadily been dropping since transplant.
About a month ago, it hit 3.2 - freaked me out, but transplant team said it was ok because Tanner's Absolute Neutrophils Count (ANC) were above 1500. Two weeks ago - same level, absolute neutrophils at 1800, so all was still well.

This week, we have labs drawn and his WBC is 3.9. It seemed that things were getting better. They called yesterday, his absolute neutrophils are down to 150.

The team believes that this is related to his immune suppresant medication regime. Today, we stopped his dose of CellCept. (down to 5 meds!)

We are repeating labs tomorrow - if the WBC (and absolute neutrophils) are still low, then Tanner will get an injection of Neupogen. Neupogen is supposed to help stimulate WBC production. After that, we will have to do daily CBCs and shots until things look better.

Wednesday:
I had great hopes that stopping the Cellcept after the Monday a.m. dose would do the trick. I was wrong. His ANC count was 175 today - and that was a "manual count".
So, we got a shot of Neupogen & get to repeat tomorrow. Hopefully, they will be able to spur the lab along a little faster than they did today. It took 3.5 hours to get a CBC with manual diff. Our total time in the doctor's office (in a small room since we were isolated) was 5.5 hours.

Thursday:
We got our Neupogen shot yesterday & had to go back today for labs and the possibility of another shot. While driving to labs, our coordinator called and said if we need another shot, there should be plenty in yesterday's vial to give Tanner another shot (at $220/vial, I thought that sounded like a good idea).

When I get there, I inquired about remaining Neupogen from yesterday's shot. They said, "nope, we used the whole vial". Tanner's dose was supposed to be 5 mcg/kg (a total of 35 mcg) - they used the ENTIRE 300 MCG VIAL. So, Tanner got 8.5 times the dose they requested - 2x the maximum dose that is given to a chemo patient.

Turns out there was a mix-up between the doctor's orders & pharmacy. The doctor's order said 35 mcg - it was taken to the pharmacy & they filled it with a 300 mcg vial. Their paperwork that they sent back to the doctor's office didn't include the ordered dose, just the quantity provided. The nurses checked that paperwork & injected the whole thing. I'm really not sure who is at fault - but it's currently under investigation.

His WBC is still low at 4.5. However, his ANC is up to 630. So, things are definitely improving.

Possible side effects of the overdose are extreme bone pain & in 2f kids, they have increased liver functions. They stuck him a second time so that liver labs could be run. Liver labs are all great - although is total bili & alkaline phosphate were up (expected). We repeat labs tomorrow (Friday) and then will plot our course over the weekend.

Also, Tanner's monocytes are up, so now they are worried that a virus may now be involved. So, in addition to liver labs, tomorrow we will also pull two more tests to check for some very threatening viruses.

Friday Afternoon Update

Tanner's liver labs are hanging pretty steady. The numbers are up slightly - this could be lab error, just the way that the body works, or a sympton of the Neupogen overdose.

The biggest side effect of the Neupogen appears to be bone pain. The drug stimulates the bone marrow to produce WBCs - a good chunk of your WBC is in your pelvis. So, Tanner has been crawling around doing hip thrusts all day.

St. Louis prescribed some Tylenol with Codeine. We just gave him his first dose about bedtime - about 30 minutes later and he is out cold.

We repeat labs on Sunday night (results on Monday). Hopefully by then, the vast majority of this will be water under the bridge.





Have a good weekend!
Stacy

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Sunday, June 5, 2005 1:00 PM CDT

Greetings everyone.

Just a quick update.

Not much has been going on this week. We repeated labs on Friday night. We would like to go to Iowa to visit my parents next weekend, but were supposed to have lab draws. So, instead, we repeated them this weekend and if all is well, we'll go to Iowa next weekend.

I'm getting more & more concerned about Tanner's white blood cell count. Mostly because it is staying so low for so long. Hopefully it will be up this weekend - I'm not really counting on it, since he is still on a couple of different medicines that are known for causing low WBC counts. At least one of those meds will go away on Wednesday when we hit 100 days post-transplant.

Wednesday is also our 1 year check-up with Dr. M (a month late). No shots this time around as the transplant team has said no immunizations yet. I could get Morgan's, but prefer to keep them on the same immunization schedule.

That's about it for now - I put new photos in the photo gallery - so check those out.

Love,
Stacy

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Saturday, May 28, 2005 1:45 PM CDT

*************Sunday Update**************


TANNER IS CRAWLING!!!!!!!

Maybe it was the magic of getting the broviac out, or just the time that he needed, but first thing this morning, Tanner hopped up on his knees and started crawling.

He's not going very far yet, but he is GOING. His left arm is a bit sore from the broviac, so I think given a few days, he'll be everywhere.

On second thought, I don't know if I'm ready to be chasing two kids around the house.....

Now back to Saturday's update.

******************************************


Well, we are back from St. Louis & things went pretty much as planned.

Grandma Red was supposed to see her surgeon for a final check-up, but he got called to an organ procurement in another state, so he was unavailable. I know that this was very disappointing to her, but how awesome to think that another family, in their darkest hours, made the heroic decision to donate their loved one's organs. Three months ago, that could have been us waiting for the team to bring back an organ. So, while I wish that Loretta could have seen her surgeon, we know that several other people were given a second chance at life. Dr. Lowell, Tanner's surgeon and a member of the adult team, saw Loretta and gave her a thumbs up.

When we first got there, we pulled labs and made sure that everything was still looking good prior to his broviac removal. The labs were still good - everything hanging in about the same. His white blood cell count is VERY LOW - in fact, the labs called it "critical low" (value was 3.1). The team believes that this is a medicine that is causing this, and we may stop the medicine in the next few weeks.

The broviac came out, as scheduled, at 10:15. Around 1:00 we were released to head back to Kansas City. So, we were able to make it home before it got too late.

The good news is that without the broviac, Tanner & Morgan can play together in the same crib again (before we were concerned about Morgan ripping out his IV line). In a few weeks, he'll also be able to enjoy a full bath. We may also run up to the Wal-Mart and purchase a small infant pool for the kids to splash in this summer as well. It is nice to be rid of the broviac.

Other than that, the team is pleased with his progress. We will lose one additional medicine on June 8th - it's an anti-viral medicine and the one that he is in the pharmaceutical study for.

Once the white blood cell count returns to normal limits, we can resume some of our "normal" routines - like going to church and visiting family & friends remotely. We're really looking forward to some normalcy after nearly a year of taking extreme precautions.

Coming up - not much. We have our 1 year check-up with our pediatrician on June 8th. And, as much as we like Dr. M, we hope to not have to see him until then! We will repeat labs on June 11th.

I hope everyone has a wonderful holiday weekend & enjoys the new pictures!

Stacy

---

Sunday, May 22, 2005 7:42 AM CDT

Greetings everyone!

It's been a good couple of days for us - let's deal with the medical stuff first.

As you will remember, Tanner's labs last week were pretty good except a low white blood count. This led the team to discontinue THREE of Tanner's medications (he's off the steroids, Pepcid, & Fluconazal - an antifungal for thrush). That leaves us with 6 medications, and I'm thinking that we will lose 2 of those in the next couple of months (Valgancicylovir - an anti-viral that is prescribed for 100 days post-transplant & Cellcept - a anti-rejection med). The Cellcept may be contributing to Tanner's low white blood cell count, and it may be discontined to see if that will help.

That will leave Tanner on 4 medications - Prograf (his main anti-rejection med that he will be on for the forseeable future), Sulfatrim (an antibioitic used to prevent some nasty things), Baby Aspirin (to keep the blood thin & flowing - he'll be on this about a year), & Milk of Magnesia (helps with his blood magnesium levels - we'll be on this until his mag levels are above 2 - who knows how long). Six total medicines and 9 total daily doses of medicine. Pre-transplant Tanner hit 16 doses of 8 daily medicines, with 2 additional "as needed" meds.

We go back to St. Louis on Thursday night. Grandma Red has her follow-up with her surgeon & Tanner will have his broviac (semi-permanent IV) removed. We'll also repeat labs while we are down there. We're hoping that we will back home late Friday night. Please say prayers that someone doesn't get a bad report & we end up in St. Louis for a few days!

Last night was a HUGE occasion for us. As most of you know, we were prohibited from taking the kids out for the first year of their life because of their prematurity. And, then we weren't allowed to take them out until Tanner was off steroids. So, last night - we FINALLY took the kids out to dinner at a real restaraunt. How neat to be able to eat out with the kids.

Of course, we did it right. We walked in & put our shopping cart covers over the restaraunt high chairs, Clorex wiped anything that was within reach of the kids, and then laid out the alcohol hand gel. The kids did great - we fed them a few french fries and let them try a chocolate milkshake. Morgan LOVED the fries - Tanner couldn't get enough of the shake. Every time Randy would put down the spoon, he'd GROWL & open his mouth like a little bird. We figure that Tanner had 4 - 6 oz of milk shake - we may have found a way to pack on the weight yet!

That's about it for now - I will update when we get back from St. Louis.

Love,
Stacy

---

Monday, May 16, 2005 11:28 AM CDT

Just a quick update today - not too much going on here.

Tanner got labs drawn on Saturday. Everything is looking great except for his white blood cell count which is low. This isn't much of a surprise since it is a known side effect of one of the rejection meds that he is on. This is one of the meds that is typically disconintued in the 3 - 6 months post-transplant phase, so it is possible that he'll get taken off of this med in the near future.

Our next doctor appointment & labs are May 27th when Tanner gets his Broviac (semi-permanent IV in his chest) removed. We are looking forward to getting rid of that - and seeing our St. Louis team (we're bringing the camera - be ready, folks!).

Otherwise, Tanner seems to be doing great. He looks taller to us lately & just more grown up. Not sure why, but it's amusing to see this little tyke trying desperately to crawl, walk, and stand. He just looks too little to be doing those things.

Morgan finally seems to be over the ear infections after 3 doses of Rocephin (injectable antibiotic). Now, she is dealing with a diaper rash that results from the affects of the strong antibiotics. We have an appointment with the ENT doctor in late June. I'm guessing tubes are in her future after that.

Otherwise, we are just chugging along. We both wish we had vacation time so that we could take some of that this summer - but, most of that was used up with Tanner's transplant. Maybe this fall....

Hope everyone is enjoying the spring-like weather!
Stacy

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Sunday, May 8, 2005 9:06 PM CDT

**********************NEW PHOTOS***********************

Well, this last week has been pretty busy with 3 trips to KU for various doctor appointments!

Early Monday we went to the eye doctor. I couldn't believe what a waste of time that was. We got there at 7:45 for our 8:00 appt. We waited until 9:00 for the eye doctor - he literally took a toy, shook it in front of them, and said "looks good to me" (they were checking for crossed eyes). A 30 second exam that we waited an hour & 15 minutes for! Then, a resident came in dilated their eyes (a 45 minute process), and then checked them. 2 hours & 15 minutes later and we went home with an "all ok". If I had known what that was going to consist of, I might have skipped it. Oh well...

Then mid-day Monday I called our pediatrician to let him know that Morgan & Tanner both still seemed to be fussing with their ears. Verdict - come back to KU for him to check them out. Off we went...Tanner's were healing & Morgan's were worse. Prescription for Zithromax & home we went.

Tuesday - Thursday were full of usual therapists, home health, and the likes. Friday during Tanner's therapy session, I decided that Morgan still wasn't feeling well (she wanted me to hold her the entire time) - so another call to Dr. M and another trip up to KU. Ears are worse yet....she gets a shot of antibiotics, a prescription for Singulair (her cold was really causing breathing problems, too), and a referral to the ENT. It looks like ear tubes are in Morgan's future.

Saturday we had to go to the KU clinic (thankfully closer than KU) and get Morgan another shot of the antibiotic. This antibiotic is usually a 3 shot course, so on Monday we call Dr. M with her status and see where we go from there.

We have managed to squeeze some fun into the week as well. We took Morgan & Tanner to the park this morning (with Clorox wipes in hand). They LOVE the swings. Randy & I are still kicking ourselves for not taking the video camera & capturing the pure joy on their faces. And, then, I slipped out of the house for a quiet afternoon of running errands.

Hopefully this week will be another "quiet" week. Tanner gets labs repeated on Saturday. If all is well, we hope to be able to eliminate his steroids the week after next. And, we are OH SO EXCITED to be getting rid of the broviac on May 27th. With infrequent lab draws, it is more of a nuisance than a real help.

Grandpa 3 Hairs is coming down this weekend to bring down Cousin Katelynn's Little Tykes Swing/Slide. After watching their faces today, I know that they are going to love that. And, we'll also keep him busy watching kids while we put Tot Locks on the cabinet doors (Morgan figured out how to open the cabinets this weekend).

All for now - enjoy the new photos!

Stacy

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Saturday, April 30, 2005 10:24 PM CDT

Wow - what a busy (& exhausting day).

We had a busy household for the first birthday - both sets of Grandparents, Ms. Ashley & Tray, Aunt Sherry, Uncle Eric, Aunt Ang, & Cousin Katelynn. Lots of activity!

We had a really good time - the highlight of which was cake time. Tanner & Morgan didn't quite know what to think - but it didn't take Tanner long to figure it out. After one taste, he was sold - he'd just stick his whole face in the cake. And, he not only licked the frosting, he actually ate some cake, too. That kid had frosting in from the top of his head (in what hair he has) clear to inbetween his toes. He really got into the whole cake thing. At least this time, his being orange was a good thing.

Morgan was much more dainty about it. She'd stick one finger in & then lick it. I'm not sure that she even got any cake. She did end up with enough frosting that she ended up a funny shade of blue - almost smurf blue.

We got lots of really cool gifts...and lots and lots of clothes (that may have been due to the decree from mom that Tanner & Morgan didn't need many more toys but were a little short on clothes).

All for now - we are truly exhausted from getting ready, running around like crazy, and playing host for a day and a half.

Good night & thanks for checking in on us. Enjoy the latest pictures.

Stacy & Randy

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Saturday, April 30, 1:59:30 a.m.

My dear babies -

I cannot believe you are turning one year old. One year ago, your daddy & I anxiously watched you enter the world. Not sure what to expect - you see, you came into this cold, harsh world way too early.

You were so little and tiny - and yet you each had 10 fingers & 10 toes - tiny little hands, perfect little feet. You looked so fragile - and your skin was bright red. We were told that it was "raw" and that touching you would bring you pain. Oh, the pain that brought us.

But, boy, did you have spirit. From the first few days - we saw you guys fight. My babies didn't need no stinkin' ventilator - you guys valiantly fought and were able to breathe on your own (with a bit of support). I was so relieved to not have to watch the machine breathing for you day in & day out.

You guys did so well - we were in the "step down NICU" within 2 weeks - nearly a record for babies born so early. There, we had privacy and got to know our roomates so much better - they were fighters just like you guys.

Not to say that this first year hasn't been full of tragedy & heartache. We have beat the odds through faith, courage, determination, and the love & support of very dear family & friends. Through these trials we have found many new friends close and far. I hope that you guys will always feel the love & support from these people that we have felt the last year.

To my sweet little man, Tanner - you are my inspiration. I don't know if I could have gone through everything that you did and still smile. And everyday, you greet me with that grin that makes it worth getting out of bed (and that isn't so easy at 5 a.m.). Even though you are small, you are mighty. You will have many challenges ahead - and I know that you will take it all in stride. Keep fighting. I love you, Son.

To Morgan, our spunky girl with a heart of gold. I know, Little One, that mommy & daddy have often time overlooked you as we've dealt with all of Tanner's battles. But, that certainly doesn't mean that we love you any less than we love him. It warms my heart to see you take it all in stride - and to see the love that is reserved solely for your twin. From the first time you reached out & grabbed his hand to all the times you snuggled close to watching you crawl over to Tanner and give him a kiss in one of your "drive-by slobbers", your genuine love & compassion for Tanner amazes me. I know that you are our stubborn, go-getter (and I see that as a GOOD thing) - but I also know that underneath that spunk is a tender heart. Always continue to love and support your brother - I know he'll do the same for you. I love you, Sweet Pea.

To my husband, I know that we've often said, "boy, if we can make it through that, we can make it through anything". From getting married, changing jobs, and moving in the same month to building a house together while living with "the outlaws".........and now to this. I can't see how I would have gotten through this last year without your love & support. It hasn't been an easy road emotionally, mentally, or physically - but by leaning on each other when it just seemed we couldn't go on, we made it - one day at time, one hour at time on some days. Thank you for being there and sharing this past year with me. I see this birthday as a milestone - a bridge to brigher days. And, I look forward to enjoying those brighter days with someone that loves & supports me so much.

Happy Birthday to my Wee Ones.

Mommy

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Tuesday, April 26, 2005 9:26 PM CDT

******************************New Photos!*******************

Well, nothing new to report on Tanner's Health...things are still going well. I think that that is a good thing. We repeat labs on Saturday evening.

We are fast approaching the twin's first birthday (on Saturday). Hard to imagine where the time has gone - it has been such a difficult year. We STILL aren't sleeping through the night predictably (once in awhile), and we still have to wake Tanner & feed him right before bed to even get the occasional night of 6 hours of sleep straight.

But, the kids have made progress and haven't shown any problems (so far, knocking on wood) of some of the "typical" micropreemie (kids born under 1000 grams - about 2 lb 4 oz) problems. We have an eye doctor appointment on Monday of next week to check for "lazy eye" - and after that we can move to yearly opthamology visits.

Otherwise, Morgan no longer sees any therapists (she did for awhile to help developmentally). She is a little behind a one year old, but overall she is doing wonderfully. Tanner does have multiple therapists, but a lot of that is due to the previous liver disease and falling so far behind. He is making good strides, and we may move to biweekly visits soon.

We are amazed that a year has come & gone - where did it go? Going through the pictures & looking back - it is truly amazing at how far they have both come. Morgan is over 8x her birth weight! Tanner is about 6.5 times his birth weight (most 1 year olds are about 3x their birth weight). Morgan has more than doubled her length & Tanner is close to it. The pictures on the photo sheet tell a pretty good story.

All for now - check back next week. There should be some good birthday pictures!

Stacy

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Wednesday, April 20, 2005 10:33 PM CDT

Phew - what a long trip for a short appointment!

We just got back from St. Louis - all is well. It took us a good 4.5 hours to drive down there. Our appt lasted a little longer than normal (about 1.5 hours), and then we had to wrangle with the pharmacy for a scrip. So, we were actually at the hospital for about 2.5 hours - and then it took us over 5.5 hours to get home! Traffic jams and weather made for a long day. Total drive time - 10 hours. Next time, I think we'll spend the night.

The team in St. Louis says that Tanner is doing great. His labs are good, coloring is great, his spleen has shrunk (big hooray). His new liver is behaving itself. So, we are going to work on weaning him off of the steroids - and after we've been off of them for awhile & all is going well, we will work on weaning off the Cellcept.

Our next appt in St. Louis is May 27th to have Tanner's Brovaic removed. He will go under general anesthesia for this, but it is a pretty short procedure. He goes from surgery to recovery, and as soon as he can keep food down, he will be released. We are excited to have the central IV line out - that means baths and just not having to worry about the thing. Although it does mean that Tanner will have to be poked for blood draws.

We did get to stop in & see my OB today, too. Dr. Clark really helped last spring when all hell broke lose. We were very fortunate to have a kind & caring OB (and his wife pitched in, too!). It was the first time that he had gotten to see the kids in a LONG time - you can imagine how they have changed from the 2 lb 3 oz that he delivered them at.

All for now. Watch the photos over the next week - I'm getting a bit sentimental and will probably start posting some photos from last year.

Love to all -
Stacy

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Monday, April 18, 2005 3:03 PM CDT

******************New Photos as of Saturday***************

Greetings again -

This will be short as I will update more after we get back from St. Louis on Wednesday. We have our first visit since we were allowed to come home. We are hoping that everything goes well and that we can negotiate a few medication changes. Otherwise, it should be a pretty mundane visit.

Labs came back from this weekend and all is well. Numbers are all about the same. Gosh, even I'm getting tired of tracking this stuff that is all within limits!

Tanner is considering crawling. He can get up on his hands & knees now, and instead of rocking back & forth, he tries to reach out and take a "step" - when he promptly nose dives. So, then he will sit (or lay) and watch Morgan for awhile and then try again. He really does not like it when she crawls away from him.

Otherwise, we have started cleaning & prepping the house for their birthday party. It will be small - but a very joyous occasion nonetheless.

More on Wednesday!
Stacy

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Monday, April 11, 2005 10:13 PM CDT

*******************Saturday 04/16/05 - New Photos******************************


Greetings everyone!

Things are going well. I got Tanner's labs back late this morning (we miss you, Penny!) - and the good news is that everything seems to be looking pretty good. His liver is happy - labs are pretty much unchanged over the past 2 - 3 weeks.

With that being said, they are going to move Tanner to bi-weekly labs. That means we will only have labs every other week. I'm still in a bit of shock - I think I asked for clarification a few times. Now, we may still end up getting labs this coming weekend so that we have "fresh" labs for our appt in St. Louis on April 20th. But, after that, we should be able to move to the 2 week schedule. That will take some getting used to for mommy.

I was so shocked, that I forgot to ask a few key questions. Like, are they going to wean his steroids any further? How long will the broviac stay in if labs are spaced out this far (labs are the only thing we are using the semi-permanent IV for)? Now that Tanner & Morgan are both sitting well, I'm anxious to throw them in the tub & let them play together - and they can't do that until Tanner's IV line is removed. I guess all of these will be good questions for our trip on the 20th.

Other than that - all is pretty quiet around here. Enjoying spring weather, and still unpacking from our stay in St. Louis. We are beginning to prepare for a quiet, small first birthday celebration on April 30th.

Life is good....

Love to all -
Randy, Stacy, Tanner, & Morgan

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Friday, April 8, 2005 1:47 PM CDT

Well, our EBV scare seems to be on the back burner right now. Ms. Ashley's doctor didn't run the tests that we had requested (so that we could tell for sure whether or not she had an active EBV virus), but based on other labs, it doesn't appear likely. We're all very glad for that!

Otherwise, a pretty quiet weekend & upcoming week. We are going to go in & have family pictures taken tomorrow (Saturday) at Target. We are the first appointments so that we can beat the rest of the germs. Saturday night we will draw blood - but, we are now doing that ourselves in home, and then just running it into the lab. Very convenient and we keep Tanner away from all things bad. We also get labs first thing Monday morning - a good way to start the week.

Kansas City is supposed to have BEAUTIFUL weather this weekend. In between mowing the yard (yes, it's that time here) and all of our household chores (still playing catch-up from St. Louis), hopefully we can sneak in a walk at one of the local parks or walking trails.

Hope everyone has a great weekend. Thanks for checking in on us & Tanner!

Stacy

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Monday, April 4, 2005 11:46 AM CDT

*************TUESDAY UPDATE************

A new photo in the photo section. I wanted to keep some of the golfing ones around for awhile, so I only put up one new one there.

Yesterday our nanny, Ashley, started to get a tickle in her throat. She figured with Tanner's condition that she had better get it checked out just in case.

The walk-in clinic automatically tested for strep because "it's going around" before she even saw the doctor. Strep came back negative. After she saw the doctor, he said "looks viral, could be mono, see us Thursday if you aren't better".

Well, what this doctor failed to realize is that mono is caused by a virus called EBV 85 percent of the time. EBV is VERY bad for Tanner. EBV can lead to a condition called PTLD (Post Transplant Lymphoproliferative Disease). PTLD can be pre-cancerous but in a few cases it will develop into a lymphoma, which is a type of cancer. So, as you can see, it is imperative that we figure this out early on.

So, Ms. Ashley headed to clinic this morning for blood draws to check for EBV and we called in an emergency/temporary nanny service for a couple of days. We'll anxiously be awaiting her test resuls.

Please remember, exposure doesn't mean that Tanner has caught it by any means. There is a 2 week - 7 week incubation period. So, if Tanner was exposed, it will be awhile before we even know if he picked it up. According to our transplant book, typically they reduce a kid's immunosuppressants so that their body can fight the virus. Of course, if they do this, especially so close to transplant, it can cause his body to reject his new liver. So, as you can see, this is a potentially a mine field.

Please pray that it is NOT mono - this would be a very bad time for Tanner to be exposed and it could mean that our beloved nanny would be quaranntined for a lengthy period of time.

Love to all-
Stacy
*********************************


Greetings all.

I am back to work this week. I have a feeling adjusting to being back at work and taking care of a healthy kid will be quite the adjustment.

Tanner is doing great. We got labs back this morning and all are right in line. Good news. He has been a little cranky, occasionally throwing up, & not eating, so we were fearful that it was rejection - but, turns out he's just teething. Hopefully he'll get these first 2 teeth through and be in a better mood and eat more.

Morgan is EVERYWHERE now. She was just learning to crawl last week, and now she just takes off and goes everywhere. It's going to be difficult to keep up with her - I can't imagine the "fun" when Tanner figures out how to crawl, also.

Randy's company hosted a golf tournmanet for Tanner's medical fund on Friday. It was a beautiful day, and we were really touched by the effort that they went to. The food was absolutely incredible and I hear the golf was pretty good, too (even considering the high winds). We are so grateful to everyone who turned out to play - and special thanks to Tim Ross for making all of the arrangements. You can see some pictures on the Photo Album page.

That's it for now. We are hoping & praying for a quiet week this week - no doctor's appointments - only labs on Saturday.

Love to all -
Stacy

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Wednesday, March 30, 2005 10:18 PM CST

****************NEW PHOTOS*****************

Well, it's been a quiet few days, but here is the latest from DeSoto!

I have taken the week off to play catch-up; a lot to do after being gone for 4 weeks. And, I still won't be caught up on Friday. It will at least be a good start and workable while we finish getting everything pulled together.

Today is Tanner & Morgan's 11th Month Birthday - I can't believe how quickly the time is flying.

Tanner is doing well - doesn't seem to be eating as much, but still eating pretty good and gaining weight. Tanner weighed in at 13 lb 7.5 oz (6.11 kg). He's gained about 2 pounds from where he dipped down to post transplant (5.2 kg).

ALL of Tanner's labs that we normally track were within NORMAL limits this week. Now, I can't honestly say that I can remember any other time when this has been the case.

And, Ms. Morgan decided to start crawling tonight. She's been close for a few days - and finally tonight, she figured it out. She hasn't gone too far (just figured it out before bed), so we'll see what tomorrow holds. Glad that my parents are coming down this weekend to help put up gates & childproof the house.

Friday, Randy's employer George Butler is hosting a golf tournament called Tee's for Tanner. The proceeds are going to Tanner's medical fund. Randy, his dad, and two family friends are coming up to golf in it - and Tanner, Morgan, & I will be making a guest appearance. Hope the weather cooperates.

Hope everyone is having a great week!
Stacy

Coming up this week:
Thursday - pictures at Target
Friday - Tee's 4 Tanner golf outing
Saturday - Grandma Crazy & Grandpa 3 Hairs in town - labs
Sunday - rest up
Monday - mommy goes back to work
Tuesday - Friday - hopefully calm & quiet!

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Sunday, March 27, 2005 9:31 PM CST

An Easter Entry

Some people have New Year’s resolutions. I’ve always thought that Easter & spring in general was the time for renewal – a time to start fresh. There really hasn’t been a year that I believe that more than this Easter season.

In the past 12 months, Randy & I have endured many challenges. I have included a timeline in a previous entry with today’s date for those of you who may not have seen it. It’s a duplicate of what was included in some of our Christmas letters last year. I’ve added and expanded to include the last few months as well. In all total, we had immediate family members in the hospital for 275 days last year in a total of 8 different hospitals in 3 states. To say the least, the last year has challenged our faith, our willpower, and our endurance.

But, this entry isn’t to reflect on the bad, it’s to rejoice in all of the great things that have also happened. Our family has overcome astounding obstacles – it wasn’t easy, but we did, and I think that we are all closer because of it. We’ve seen the strength of character in people who could have so easily given up (we love you Mom & are so proud of you – to Tanner, our little tuffy – you are such a strong fighter). We’ve seen miracles happen (thank you Grandma Red for giving Tanner a second chance at life). And, we’ve seen how so many people can pull together around their friend, their neighbor, their family member (thanks to all of you for your support these last 12 months!).

The weight that has been lifted this Easter is enormous. We’ve finished the marathon that we started this time last year. I am finally able to enjoy my son – not worrying about the “what ifs” and “when”. Having a child with a transplant is not an easy road, but certainly easier than the uncertainty of living with liver disease. I can see both of my babies playing, eating, growing, and developing like normal kids. Tanner can be taken into public without people looking at him – with obvious concern on their faces. I feel as if we’ve been given a whole new baby this Easter.

Being at home with healthy loved ones – well, that’s a gift. A gift that one year ago we took for granted. Now I know what it’s like to stop & smell the roses, to enjoy the people around me, and to treasure the moment. We have so much to rejoice in the Lord for this spring.

As far as all of us – we are doing great. We had a good, quiet Easter at home (prohibited from church due to the possibility of exposing Tanner to something). We went for a walk in the park, played with our babies on the floor of our living room, and enjoyed being together AT HOME.

I hope you all had a Blessed Easter.

Love to All -
Stacy

Coming up this week:

Monday - Appt with Dr. Maben at KU
Thursday - pictures at Target
Friday - special guest appearance at the GBA Golf Tournmanet - "Tees for Tanner"

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Sunday, March 27, 2005 9:30 PM CST

Here is a timeline of the events that have happened over the last year or so in our family:

• 11/20/03 – Found out we were pregnant
• 12/23/03 – Found out that we were pregnant with twins – OH MY!
• 04/16/04 – Randy took his PE test for the first time
• 04/24/04 to 04/27/04 – hospitalized for contractions – stopped with medications
• 04/30/04 – twins arrive at 1:59 a.m. & 2:00 a.m. at 27 weeks gestation (3 months early)
• 05/17/04 – Randy starts a new job with George Butler Associates
• 05/23/04 – my parents are involved in a head on collision during their return trip to Iowa – both are life flighted to Des Moines
• 05/30/04 – my father is released from hospital in a halo
• 06/03/04 – Randy’s 29th birthday & mom’s back surgery
• 06/08/04 – Tanner is transported to KU for additional studies on his liver
• 06/17/04 – Tanner has an open liver biopsy & a cholangiogram performed – results are inconclusive
• 06/23/04 – Morgan Olivia comes home from the Overland Park NICU after 55 days weighing in at 4 lb 10 oz
• 07/01/04 – Morgan is admitted to the University of Kansas pediatrics ward for breathing difficulties – she required two blood transfusions to bring up her red blood cell count to normal levels
• 07/12/04 – Tanner Anton comes home after 72 days in the Overland Park and University of Kansas NICUs
• 07/22/04 – Tanner undergoes another liver surgery – this one determines that he has a pediatric liver disease called Biliary Atresia where the bile ducts from the liver to intestine have atrophied – a surgical procedure called a Kasai was performed where a piece of intestine was used to connect his liver to the remaining portion of his intestines
• 07/24/04 – Morgan is admitted to the University of Kansas hospital for breathing difficulties again– determined that it was viral & started on nebulizer treatments
• 07/30/04 – Tanner comes home (again) – total NICU stay – 82 days
• 08/07/04 – we make a surprise trip to see Grandma in the rehab hospital
• 08/23/04 – 3 months to the day of the accident, mom comes homes
• 09/15/04 – Tanner’s bilirubin levels are within normal ranges
• 10/05/04 – Tanner begins having problems again
• 10/13/04 – Hospitalization #3 at Children’s Mercy Hospital for Tanner to place an IV so that we can administer IV antibiotics at home
• 10/18/04 – I return to my previous employer, QuickPen
• 10/29/04 – Randy took his PE test for the second time
• 11/12/04 – Tanner is hospitalized overnight at Children’s Mercy Hospital for a needle biopsy of his liver – at this point, his liver is 50% scarred
• 11/22/04 – Tanner’s 5th hospitalization for his hernia repair surgery
• 12/5/04 – Tanner’s bilirubin level hits it’s all time high of 12.4
• 01/24/05 – we meet with the St. Louis GI & Transplant team for transplant evaluation
• 02/08/05 – Tanner is listed on the UNOS waiting list for a liver with a PELD score of 25
• 02/24/05 – Grandma is tested to see if she is match for living donor
• 02/25/05 – Grandma is a match
• 02/26/05 – Morgan’s cough causes her to passout and we end up in St. Louis’ ER
• 02/28/05 – Tanner & Grandma undergo simultaneous surgeries where 24% of Grandma’s liver is removed and put in Tanner
• 03/03/05 – Tanner is moved from the PICU onto the “regular” floor
• 03/04/05 – Grandma is released to the apartment in St. Louis
• 03/10/05 – Tanner is released to the apartment in St. Louis
• 03/25/05 – Tanner is released to go home to Kansas City

Total Hospital Days:

Grandma Red – 6 days – 1 hospital
Grandpa 3 Hairs – 7 days – 1 hospital
Mommy – 9 days – 1 hospital
Morgan Olivia – 62 days – 2 hospitals
Grandma Crazy Woman– 92 days – 3 hospitals
Tanner – 99 days – 4 hospitals

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Friday, March 25, 2005 9:34 PM CST

We are home! Home in Kansas City!

Arrived a little bit ago - car is unpacked in piles around the house, so we still have a lot of unpacking to do.

Tanner's labs in general were about the same today - some up, some down, but all within normal ranges. So, we were sent home with the warning to keep Tanner away from germs as much as possible.

We are going to weekly labs - holy cow, it seems so soon. Lowering the orapred (steroid). We report back to St. Louis either April 13th or April 15th.

I'm exhausted - so I will add more tomorrow.

Love to all -
Stacy

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Thursday, March 24, 2005 6:17 PM CST

It's Thursday evening, and I'm slowly getting the apartment packed up. We are still hoping to be released to go home to Kansas City tomorrow afternoon.

We go in early for lab draw tomorrow morning - between 8:00 - 8:30, and then we have clinic at 10:30. We have to draw labs that early so that they can get a read on the Prograf (his anti-rejection med) level, plus it's nice because the labwork is available for clinic appt with the GI doctor.

Of course going home is dependent upon his labs being good tomorrow. So, please pray that this will happen - we are in good need of being home with Morgan and Daddy! I'm a little worried because he has some head congestion tonight, lots of sneezing and snot - and sometimes this will make your enzymes go wacky. If this is the case, then St. Louis it will be for another while.

Will keep everyone posted as soon as possible. I am shutting the computer down and packing it up early this evening, so it may take awhile to find a computer to update everyone. Please say another prayer on Tanner's & I's behalf - we want to be home for Easter!

Love to all -
Stacy

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Tuesday, March 22, 2005 4:12 PM CST

*****NEW PICTURES IN THE PHOTO ALBUM*****

I hope the picture above shows just how much energy Tanner has - he is really our little TAZ now. The kid jumps, play, smiles, and laughs all the time. Oh - and eats. I'm still getting next to no sleep with his constant eating.

Tuesday labs are back, and things are still looking pretty good. Here are the numbers - numbers in parenthesis are from 1 week ago today

Liver Function Tests (these are all NORMAL!)
Total Bili 0.5 (0.7)
Direct Bili 0.0 (0.0)
AST - 37 (36)
ALT - 33 (44)
Alk Phos - 206 (196)
GGT - 47 (55)
BUN (Kidney function) - 9 (20)
Creatine (Kidney function) - 0.3 (0.3)
Albumin (blood protein) - 3.1 (2.3)
Magnesium - 1.3 (1.5) (Low)
Prograf - 11

We started Tanner on YoBaby Yogurt on Sunday to hopefully help with his Albumin & that seemed to work. Now, we just have to get his Magnesium up - so we are going to add Milk of Magnesium to his daily regimen of meds. We're up to 9 medications, 12 doses. Still not too bad - we were on 10 meds pretransplant with at least 13 doses and often times more (depending on how bad he was itching).

Otherwise, all is pretty much the same - we are still planning on leaving for HOME on Friday.

Love to all -
Stacy

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Sunday, March 20, 2005 9:57 PM CST

Awww....Sunday evening.....

Hopefully I can be writing this update from Kansas City next weekend. The thought of going home is overwhelming. We left for St. Louis 4 weeks ago on Thursday - and I don't know about Tanner & Grandma, but Mommy is getting home sick!

The thought of going home is a bit overwhelming - fearful because we will be so far away from our awesome transplant center - there is a feeling of security being so close. Excitement to be back in my home, in my chairs, in my bed. Exhaustion - we've gone through so much in the last 4 weeks - it wears me out to think about it - and there is SO much to do when I get back. It's amazing what doesn't happen or can't happen when you are out of town (haircuts, dealing with the insurance company, shopping, cleaning, bill paying). Anxious - I'm ready to get back to work - I've missed being on the phones and working with my customers.

Tanner continues to amaze us. We used to fight with this kid to get food down him and his waking time was really limited to a couple of hours a day. Not the case now. The last couple of days, he has taken 38 - 46 oz of formula baby food and baby yogurt. He takes a morning & an afternoon nap - and plays hard in between. He laughs and finds himself quite amusing. He's sitting up much better now, and he rolled from tummy to back today (reacquiring these skills). Grandpa 3 Hairs discovered Tanner's first tooth hiding out just underneath the gumline this morning. The progress amazes us - although the constant feeds and care are wearing mom out.

Seeing Morgan was awesome. She smiled as soon as she saw me, and it didn't take too long for her to warm up to me. We took a couple of naps together and played together. Morgan also got to go to the grocery store with mom & dad and no Tanner - I think she's got some making up to do. She still has that cold - but was feeling somewhat better after taking some high powered drugs. I couldn't believe how much she has grown - she's actually lost weight since our original trip down her 3 weeks ago (no appetite when feeling lousy), but she's grown over an inch in length! And, she is finally getting a bit more hair.

Plan for the week: repeat labs on Tuesday - if labs are still great (please pray really hard for this), then we will begin to pack & prepare for coming home. Friday will be another set of repeat labs and a clinic visit - and hopefully that release to come home. Grandma gets on a plane late Friday afternoon, and I will drive out Friday afternoon / evening. The thought of spending Easter at home is very alluring!

Love to all -
Stacy

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Thursday, March 17, 2005 10:17 PM CST

**************FRIDAY UPDATE******************

Tanner's liver labs look even better today than they did Tuesday. Sooooo....if all continues to go well, then we will possibly be looking at leaving St. Louis sometime next week. Now, I say sometime because the doctor is willing to see us on Wednesday and release us (if Tuesdays labs are ok), but right now, Grandma doesn't fly out until Friday. So, unless we change Grandma's flight, we probably still won't be able to leave until Friday.

That's all for now - will post pictures once Morgan gets here!

****************************************

If it's not one kid, it's the other.

First of all, Tanner is doing great. We are going back in for labs tomorrow morning & clinic visit, so I will post with more information when we return.

Now, our big problem today has been Ms. Morgan. She kept daddy up all night last night, fussing and just wanting to be held (not like our little girl). Then, this morning, daddy noticed she was running a fever.

Ms. Ashely (our nanny) took her back to see the our great pediatrician today & now BOTH ears are infected. We're pulling out the Stage 2 Antibiotics and hopefully that will clear things up. But, she is barely eating, and we're on high alert for wet diapers to make sure that she isn't becoming too dehydrated.

Sigh....I just want TWO healthy kids! I personally think that Morgan just needs some good old fashioned Mommy time, and soon enough we'll get that, too.

I will post new pictures over the weekend of Morgan & Tanner - together again after 20 days! That is longer than they were initially separated in the NICU at Overland Park. I sure hope they remember each other.

Hooray - only 18 hours until mommy gets to smother Morgan with hugs and kisses.

Love to all -
Stacy


******NOTE TO ALL**********

We have heard reports that mail that was sent to our St. Louis apartment has been returned to sender. We do not know why this is happening, but to date have received very few letters and/or packages here. We have talked to the post office, and they cannot explain it, either.

So, in order to prevent further problems, please send anything to either our home (for Tanner) in DeSoto or to Colby (for Loretta). Randy will be here on weekends & will deliver things then.

Thanks for thinking of us!
**************************************

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Thursday, March 17, 2005 10:17 PM CST

If it's not one kid, it's the other.

First of all, Tanner is doing great. We are going back in for labs tomorrow morning & clinic visit, so I will post with more information when we return.

Now, our big problem today has been Ms. Morgan. She kept daddy up all night last night, fussing and just wanting to be held (not like our little girl). Then, this morning, daddy noticed she was running a fever.

Ms. Ashely (our nanny) took her back to see the our great pediatrician today & now BOTH ears are infected. We're pulling out the Stage 2 Antibiotics and hopefully that will clear things up. But, she is barely eating, and we're on high alert for wet diapers to make sure that she isn't becoming too dehydrated.

Sigh....I just want TWO healthy kids! I personally think that Morgan just needs some good old fashioned Mommy time, and soon enough we'll get that, too.

I will post new pictures over the weekend of Morgan & Tanner - together again after 20 days! That is longer than they were initially separated in the NICU at Overland Park. I sure hope they remember each other.

Hooray - only 18 hours until mommy gets to smother Morgan with hugs and kisses.

Love to all -
Stacy


******NOTE TO ALL**********

We have heard reports that mail that was sent to our St. Louis apartment has been returned to sender. We do not know why this is happening, but to date have received very few letters and/or packages here. We have talked to the post office, and they cannot explain it, either.

So, in order to prevent further problems, please send anything to either our home (for Tanner) in DeSoto or to Colby (for Loretta). Randy will be here on weekends & will deliver things then.

Thanks for thinking of us!
**************************************

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Tuesday, March 15, 2005 1:01 PM CST

******NEW PHOTOS IN THE PHOTO ALBUM*******
Quick Wednesday Update

Tanner did end up getting an albumin infusion this morning & all went well.

And, better yet - the JP drain is out. Now, just the broviac & a fancy scar - otherwise you'd never know he just got a new liver! When our surgeon walked in, he commented that Tanner "sure looked pale". Just another sign that his liver is working!

Coming up:
Thursday - a St. Patrick's outing - maybe to the St. Louis arch
Friday - Labs & clinic

**********


YAHOO! PRAISE THE LORD!

We had our first official follow-up appointment at the hospital today and had all of the liver labs pulled. This is the only time that I have seen NORMAL liver labs on Tanner - yes, my friends, you read it right - NORMAL.

Here are the actual numbers (because as an engineer, you all know that I love numbers)

Liver Function Tests (these are all NORMAL!)
Total Bili 0.7
Direct Bili 0.0
AST - 36
ALT - 44
Alk Phos - 196
GGT - 55

Basic CBC
WBC - 12.5
Hemoglobin - 8.8 (low, but that was expected)
Hematacrit - 28.6 (low, but again, expected)
Platelets - 279

Kidney Function (some of the high powered meds that Tanner is on to prevent him from rejecting his liver can harm the kidneys)
BUN - 20 (high end of normal)
Creatine - 0.3 (normal)

Liver Synthetic Function Test
Albumin - 2.3 (low - he can get an infusion of Albumin, but with his other labs improving, they may not)

For fun, go to our "Journal History" section and compare those numbers with those from February 7th - what a difference!

Tanner is making up for lost time on the food. He has averaged 36 oz over the last 4 days - and on Saturday he took 41 oz 4 oz of baby food! I was ready to get the old liver back as he had literally been up 4 times throughout the night. Tanner's doing great, mom needs some sleep! He had gained about 7 oz since Friday (yes folks, that's 7 oz in 4 days (but some of that is difference between different scales at the hospital).

We go back to the hospital tomorrow afternoon to see the surgeon, Dr. Lowell and he will hopefull remove Tanner's last JP Drain from his abdomen. Then, we will watch him closely to make sure he doesn't retain fluid or spike a fever. If that goes well and liver labs continue to improve, then we may be home sooner than originally anticipated.

Daddy & Morgan (and probably Grandpa Three Hairs - my dad) are coming to St. Louis on Friday afternoon. So, I am proud to announce that there are only about 76 hours until I get to see Morgan!

Keep those prayers coming - we are all witnessing a miracle here!

Love to all -
Stacy

******NOTE TO ALL**********

We have heard reports that mail that was sent to our St. Louis apartment has been returned to sender. We do not know why this is happening, but to date have received very few letters and/or packages here. We have talked to the post office, and they cannot explain it, either.

So, in order to prevent further problems, please send anything to either our home (for Tanner) in DeSoto or to Colby (for Loretta). Randy will be here on weekends & will deliver things then.

Thanks for thinking of us!
**************************************

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Saturday, March 12, 2005 9:44 AM CST

WEEKEND UPDATE:

First of all, I want to leave this special thank you on this page, because I feel like it is important to let everyone know how grateful we are - and if anyone out there is looking for a transplant center, St. Louis has my whole-hearted referral:

I can't say how grateful we are to the wonderful transplant team in St. Louis - they truly made this an easy event for all of us involved. Special thanks to: Penny, our transplant coordinator & one very special lady. She watched over us like a hawk, made sure that we knew what to expect, were there during the tough hours, and celebrated with us, too; Michelle, the nurse practicioner, for watching over us and taking such excellent care of our little guy - the expertise & knowledge that you bring to the team is incredible; Dr. Lowell - you have wonderfully gifted hands and we will never be able to repay you for giving us our little boy back; Dr. Shepherd - you were right, Tanner desperately needed that liver & it was all about timing, thank you for pushing this through so quickly; and all of other staff (nurses, social workers, psychologists, child life, janitors, PCAs, nutritionists) - our stay was so enjoyable and we felt at home the entire time. God Bless all of you.




Out of the hospital for about 44 hours now, and all seems to be going well - that is if you consider getting up every 2 - 3 hours to feed as well. Tanner has been a little PIG. He ate 32 oz of formula yesterday & has already eaten 15 oz this morning (at 10 a.m.). We used to struggle to get him to eat 22 - 24 oz a day - so this is a HUGE change.

And, along with eating that much, he has so much more energy. He is playing hard, making up for lost time. He loves his exersaucer & spins in circles playing with all of hte different toys. He is enjoying rolling on the floor - and about the only time he gets upset is when he is hungry (and then watch out!)

Our doctor visit yesterday was pretty uneventful. They drew labs and fortunately, Tanner's white blood cell count is back down. Huge relief as it had been going up for no apparent reason. We will get liver labs next Tuesday - and I'm hoping that we can still get the remaining drain out. Right now, Tanner considers the drain a very convenient, attached chew toy.

Our weekend will be pretty uneventful - if the weather warms up a little bit, we may go for a walk in the park or an ice cream run, otherwise, we're going to hang out here at 919B.

Randy is back in Kansas City & even made it to work yesterday. Thankfully, George Butler has been great and they are going to let Randy work M - R all day & through lunch, and then Randy will leave around noon on Friday. This way he can get to St. Louis with Morgan before it is too late & we can have some family time.

Morgan is doing better. Poor kid is still fighting this crud (head cold that went to the hacking cough - thankfully lungs have remained clear). We are still doing nebulizer treatments several times a day, putting saline down her nose, and giving her cough drops. It took her awhile to get used to daddy again.

All for now - will add some new pictures over the weekend, so check in for some new stuff.

6 Days until Mommy gets to see Morgan again....

Love to all -
Stacy

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Thursday, March 10, 2005 3:19 PM CST

YAY! HOORAY! WE ARE "HOME"!

Well, it's not DeSoto, but it is our temporary home in St. Louis and boy, does it feel good. Tanner came home, took 3 ounces of milk, and went to take a nap. Nothing like a nice, quiet, dark room for a good nap.

Tanner is doing great - bili is 1.1, all other liver labs except ALT) are NORMAL. I've never been able to say that - and ALT is headed in the right direction.

Next few weeks will watch the labs. His WBC is up, and they just can't figure out why (they think it is related to the steroids), so that will be the main thing they are watching. Hopefully in 3 - 4 weeks, they will let us go back to Kansas City. (Mom can't wait to sleep in her own bed)

Grandma is doing great - she has spent quite a bit of time at the hospital the last few days & I think it felt good to get out.

I can't say how grateful we are to the wonderful transplant team in St. Louis - they truly made this an easy event for all of us involved. Special thanks to: Penny, our transplant coordinator & one very special lady. She watched over us like a hawk, made sure that we knew what to expect, were there during the tough hours, and celebrated with us, too; Michelle, the nurse practicioner, for watching over us and taking such excellent care of our little guy - the expertise & knowledge that you bring to the team is incredible; Dr. Lowell - you have wonderfully gifted hands and we will never be able to repay you for giving us our little boy back; Dr. Shepherd - you were right, Tanner desperately needed that liver & it was all about timing, thank you for pushing this through so quickly; and all of other staff (nurses, social workers, psychologists, child life, janitors, PCAs, nutritionists) - our stay was so enjoyable and we felt at home the entire time. God Bless all of you.

Thanks to everyone for all of their continued prayers - we hope to be really home soon.

Love,
Stacy

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Tuesday, March 8, 2005 11:05 AM CST

**** New Pictures in the "View Photos" Section ****

We are making progress.

They are going to discontinue Tanner's IV antibiotics today. And, he has 2 more doses of IV Steroids on Wednesday & Thrusday (at 7 a.m.).

If he doesn't spike a fever after getting rid of the antibiotics, then we can go "home" on Thursday! "Home" being our apartment here in St. Louis.

Today, Tanner's Total Bilirubin was 1.6 - his Conjugated or Direct Bilirubin was 0.0!!!! For our non-liver friends & family, the Conjugated Bilirubin was what was used as an indicator of Tanner's disease. The fact that it is 0 is wonderful news.

Other liver enzymes are still a little higher than normal but continuing to fall.

So, we're not counting on anything until I see a copy of the discharge instructions, but we are getting closer.

Grandma is headed to her follow-up appt tomorrow morning at 9 a.m. She is on a new pain med & is doing so much better. But, the plan is now to have her fly home in a couple more weeks.

If Grandma gets a thumbs up & Tanner is discharged on Thursday, Randy will probably travel home on Thursday evening to get Morgan and hopefully go back to work on Friday. He'll still have to make the long trip to St. Louis on the weekends with Morgan, but we're having severe Mo-Mo withdrawal right now.

Pray for no fever & that grandma's appt goes well.

Love to all -
Stacy

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Monday, March 7, 2005 3:36 PM CST

Sorry for the late update today.

Nothing exciting really happening.

Tanner's bilirubin is down to 2.0. Normal is 1.3 & below, so we are getting close. The other liver enzymes are trending downards, too - so all of this is good.

The plan (for now - and it is subject to change daily) is to finish this cycle of steroids (should finish up on Wednesday) and course of IV antibiotics (finish up on Wednesday or Thursday) and then discharge us to the apartment. Their goal is to have us "home" for the weekend.

Of course, if he spikes a fever or labs go up, we'll be around much longer.

Grandma has her follow-up appt on Wednesday. She's still having a lot of pain, but it gets better every day. And, seeing Tanner improves definitely helps her out.

Continue praying - going to the apartment is step one - we're really looking forward to getting back to Kansas City.

Love to all -
Stacy

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Sunday, March 6, 2005 1:16 PM CST

Well, things are beginning to slow down, which I guess is good.

No new fevers. The cocktail of antibioitics & steroids that they put Tanner on appear to be helping. They are still in disagreement over whether or not this is infection (GI doctor), rejection (transplant surgeon), or possibly viral (a new possibility since Tanner has developed upper respiratory congestion). Tanner's bilirubin level today was down to 2.6, and our GI doc thinks that the other liver enzymes will follow in the next couple of days. The cocktail of meds continue.

The latest development is lymphocytes (I think) in his JP drain. This is definitely a step back, but again, nothing too unexpected or out of the ordinary. But, it could keep us in the hospital for "quite a bit". They are going to give Tanner an IV infusion of Albumin (protein used by the blood) and it is possible that this could help clear things up.

The bad news is that we keep the JP drain as long as we have this abnormal discharge. We had originally hoped to lose it today. But, as we've been told the whole time, there will be hiccups and bumps in the road.

New photos on the home page & in the photo album. Tanner is still jaundiced, but it is slowly going away. It is so incredible to begin to see the whites of his eyes.

Grandma is "home" at our apartment in St. Louis. She has made it up to see Tanner once - and is still in quite a bit of pain. She is resting & behaving herself, so hopefully she'll be kickin' around again soon.

Morgan is also feeling better. Had a bout with diaherra, but we think that is related to the fact that the kid has been on Pedialyte for nearly 2 weeks. We miss her a lot, but I think she is having fun playing with Ms. Ashley's niece, Denae and being spoiled rotten by her husband.

Don't forget to sign our guestbook - it's encouraging to come home from a long day at the hospital and see that people are thinking & praying for us.

If you haven't stopped in lately - check out the Journal History.

Love to all -
Stacy

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Saturday, March 5, 2005 12:07 PM CST

****NEW PHOTOS IN THE PICTURE GALLERY!!***

Well, last night wasn't quite so bad. No fever, but they gave Tanner a dose of fentanyl at 1:30 p.m. - and it just wouldn't wear off. This medicine along with morphine (both good pain meds) make Tanner bradycardic- meaning his heart rate isn't what they'd like it to be. Tanner's heart rate ran in the 70s all night (it should be closer to 110) and dipped into the 50s a couple of time. Finally, about 15 hours later, the dose seemed to wear off and his heartrate has returned to normal. We have been instructed that Tanner should NEVER receive either drug again.

His bilirubin is down today & the other liver labs are about the same. Tanner has also developed a stuffy nose. So, now instead of infection or rejection, they think that Tanner may be fighting the cold bug that Randy, Morgan, & myself have had the last 3 weeks. They don't think that we exposed him - they think it was in his blood stream & his body was fighting it pretty well until they started the immunosuppresant drugs.

So, they are lowing the steroids that they were using to fight rejection, adding a couple of antibiotics, and contemplating adding an IV anti-viral med to get rid of the possible bug.

Everyone is still very happy with how well he has done to date, though. No transplant goes without some "bumps" - and these are very manageable.

Tanner will get his last drain tube out tomorrow morning - and we've been instructed to bring in his exersaucer & get him moving. So, we are moving ahead at a good clip.

Morgan is at "home" in Kansas City & being spoiled by Ms. Ashley's husband. She went to the doctor on Thursday - she has the croup & an ear infection. So, they started some additional meds, and we're told that she is feeling better, eating well, & smiling again. We still miss her horribly.

Will update as we learn more.

Love to all -
Stacy

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Friday, March 4, 2005 10:40 AM CST

Tanner had another rough night. His fever got up to 104 for this time, and in addition to that, his liver function tests went up.

So, a battery of tests were run this morning. The blood flow to the liver is good & the chest x-ray looked fine. Blood & urine cultures have not yet grown anything. They think that it is one of two things - Tanner's body trying to reject the liver or an infection.

So far, the level the anti-rejection med in Tanner's body is a lot lower than it should be, so they are kind of thinking that it is rejection. They have started him on some IV doses of steroids to take care of that.

The other possibility is an infection called choliangitis (infection of the liver). Just in case this is the case, they started him on some IV antibiotics.

When we asked the doctor if this was one of our "steps back", his reply was "no, this is all normal". So, really, nothing that is unexpected, just something that we treat and keep going on.

Grandma is headed "home" today. She is doing SO much better the last 36 hours and has finally been able to eat a real meal. We'll let her rest up today, and then she'll begin coming back to the hospital with us to see Tanner.

Will update as we know more. Hard to imagine that the week has come & gone already!

Keep those prayers coming.
Stacy

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Thursday, March 3, 2005 7:09 AM CST

Thursday 2 p.m. Update

We are on the floor! Don't ask me which room we are in, but we got moved up to the floor around 11:30 a.m. this morning. Since we are a transplant patient, we get the room to ourselves & get to stretch out.

If Tanner's labs & anti-rejection med levels stabailize, we may only end up being in St. Louis about six weeks. We're still planning for 8 weeks - and hoping for earlier.

See below for a.m. update
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Ok - it's been a crazy day with lots of milestones, so here goes.

Tanner had a slight fever yesterday. They drew blood & took urine for cultures. Nothing so far, so they are writing the fever off to "post surgery" and we're going from there.

They pulled Tanner's arterial line yesterday - and we put clothes on him! The clothes protect his other IV line (in his chest - we'll have it there for 3 months) and his incision drains, so now he doesn't have to have his hands restrained. We were able to let him play with his toys.

They also let him eat yesterday. He took 3 bottles of Pedialyte and then began on formula. He's taking 3 - 4 oz of formula every 2.5 - 3 hours. Our little boy is hungry.

Now for all of you who have followed our story since last June/July - WE HAVE GREEN POOP. It is the most brilliant dark shade of green that I have ever seen. And, it is a wonderful site. I know that "normal" parents out there think we are crazy for watching poop - but, let me tell you - we thought about snagging it as a keepsake. (Thankfully, the nurse talked us out of that one.)

They talked of moving Tanner out of the ICU yesterday to the floor, but decided that they wanted another day in the ICU. It's very unusual for someone Tanner's size (a mere 12.5 pounds) to do so well, so quickly. They seemed to think that today would be our lucky day, though. Hopefully we'll have a room of our own by the end of the day.

Grandma got to see Tanner yesterday - she just couldn't believe how good he looked. I think it made her feel better to be able to verify with her own eyes what a difference a good liver makes. (Thanks Grandma!)

She is feeling better, but still dealing with being nauseaus (I just can't seem to spell that word). She's taking a liquid diet and is just plain worn out. She did get her arterial line removed and they were talking about taking out at least one of the IV lines. Plans are for grandma to leave the hospital on Sunday for our "home away from home".

Grandma's liver labs are fine - and Tanner's are improving all the time. His bilirbuin is now 3.7 - down from 4.4 yesterday. With all that green poop, we may hit normal sometime soon!

Keep praying. I think my sister-in-law put it best - we often pray to God for good things to happen - but God can and does provide the IMPOSSIBLE. I truly believe that I have witnessed a miracle the last few days. Tanner's incredible recovery can only be attributed to God's greatness - for giving Tanner strength, guiding the hands of the surgeon, finding the perfect donor with a perfectly sized segment, and "selecting" the best timing. Somtimes it's been difficult to not get frustrated, upset, & loose faith in God during the last year with everything that we've been through. I'd like to believe that he's rewarding us now for our continued faith. And, we are very grateful. Thank you, Lord.

I will update again as I get time.

Love to all -
Stacy

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Tuesday, March 1, 2005 7:50 PM CST

Wednesday March 2nd, 11 a.m. update

Tanner had a rough night - very grumpy & he developed a fever. The surgical team isn't too concerned about the fever - they gave him tylenol & will monitor. However, the fever will keep him in the intensive care unit at least another day. Hopefully tomorrow we'll get to transfer out.

When I got there at 5:30 a.m., they asked me to hold him (even with all of the lines) to help him calm down. He fell asleep & slept for about 2.5 hours.

They did let Tanner have Pedialtye later on this morning. He gobbled up 4 oz by mouth and then promptly quit fussing & took a nap. Our little boy was just hungry!

They are going to pull the arterial line from his neck today - which means that we will be able to hold him all we want. This is great news since we should be able to let Grandma hold him when she comes over to visit.

His liver numbers are still going in the right direction (down). His bilirubin is 4.2 (down from 4.4), his alk phosphate is normal, his GGT is 1 pt above normal, his AST is down from 2749 post transplant to 500, & his ALT is down from 2574 post transplant to 565 today. Still aways to normal, but getting there. His clotting functions are continuing to improve, also.

Grandma is looking better all the time. Getting fluids in her & gettting up to walk around has been great.

On a sad note, Morgan went back to Kansas City today with our babysitter/nanny Ashley. I won't get to see her for 2.5 weeks & Randy won't see her for 1.5 weeks. We're pretty heartbroken right now - that little girl has so much life and is so much fun to be around. We love her & it will hurt not to have her here with us.

For more info - see last night's update.

Love to all -
Stacy

The last page was full - so, I thought I'd start a new update.

It's been a quiet day compared to yesterday.

Tanner's liver numbers continue to stabilize. Things are going in the right direction. The clotting factors are "taking care of themselves" without getting any plasma. We are told that this is AWESOME and pretty unusual stuff. Tanner has received some IV Albumin - which is a protein that helps the blood. Again, all pretty routine stuff post-transplant.

He was on a Fentanyl drip for pain up until 11:00 this morning. At that time, his heart rate was dropping pretty low (a deep drug induced sleep). They thought it was related to the pain medication, so they discontinued that and have just given him 2 doses of pain medication since. His heart rate still gets on the low side when he sleeps, but jumps right up when he is awake.

There has been talk that he might be moved to "the floor" tomorrow (off the ICU) and that he might be able to start some feeds (Pedialyte) tomorrow.

We saw both the surgeon & GI doctor today - they are pleased with his progress, and says that while we are "running a marathon here" that we have crossed "several major hurdles".

Grandma is doing much better - she's had a tough day. She conquered the upset tummy mid-day, got up to walk once, got moved to a regular floor, and is starting clear liquids. They say that if she is good about getting liquids down tonight they will wean her IV fluids and that she "might" get real food for lunch tomorrow. Dr. Lowell (the chief surgeon) has said that Grandma can go see Tanner tomorrow.

Grandma has been showered with e-greetings and it has touched her (& us) so much. The love & prayers that you all have showered us with the last few days have been overwhelming for us.

We may never be able to express our appreciation to the St. Louis team that has been PHENOMENAL. We were at peace with our decision to come here - we knew this was where God wanted us. The team is not only exceptionally skilled but the support team has kept our spirits up as well. Tanner's transplant coordinator, Penny, has taken good care of mom, dad, & clan as well as Tanner. (Thank you so much, Penny!) Tanner's nurses have been incredible - very similar to many of our OP nurse angels.

Still talk that if Tanner continues to do well we could be out of the hospital in 7 - 10 days. We'd still have to stay in St. Louis another 2 - 4 weeks for monitoring - but, we'd be home in 4 - 6 weeks vs. the original 8 weeks we thought. We are staying "cautiously optimistic" and are just hoping to celebrate the twins birthday at home April 30th.

Please continue to keep us in your prayers. We believe that we have witnessed a miracle the last 36 hours.
Help keep grandma's spirits up & send her an e-message here!.

I promise to post pictures once we have access to download & get them uploaded onto the computer.

Love to all -
Stacy

PS - While praying for us - can you please throw in an extra prayer for Anthony - he has to have a "minor procedure" tomorrow morning. But, in our liver world, sometimes there isn't such a thing as a minor procedure. You can visit his page from the link above.

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Monday, February 28, 2005 3:15 PM CST

Hello, everyone! This is Laurie, Stacy's "Liver Mom Friend" from Louisiana. Stacy asked me to update the page because she's not sure when she'll be able to.

GREAT NEWS!!! The surgeons are finishing Tanner's surgery RIGHT NOW and the main surgeon will be out around 4:00PM (CST) to talk to the family. Grandma's portion of liver was a slightly bigger than Tanner's native liver, but "pink and functioning", which is what you want more than anything! They will be able to close Tanner's abdomen fully because his abdomen was slightly enlarged from the ascites (fluid in his abdomen).

Grandma is doing very well, too. She is still in recovery and the family should be able to see her in an hour or so. She will spend the night in a step-down ICU unit and then be moved to the adult liver floor, probably tomorrow.

Hopefully as soon as Tanner is moved to his room in the ICU, Stacy and Randy (and the rest!) will be able to see him. As always, it depends on the nurse and the doctor as to when they will be able to see him.

The next 24 hours are critical for Tanner as this will be the time during which most of the major issues will arise. Please continue to keep the family in your thoughts and prayers!

Coming from another mom who had two loved ones in surgery on the same day, I can tell you that Stacy and Randy are feeling a relief like no other right now. It's very frightening to send your child in to surgery, but it's even more so when you send another loved one in at basically the same time. Please join me in telling the family "Welcome to the other side of transplant!"

Laurie, Anthony's lucky mommy



Mommy Update - Monday at 6 p.m.

Tanner is extubated! He came out of the OR off the ventilator - he has a nasal canula, but that is his only breathing assistance right now. His SPO2 level is running at 100 He is swollen, and they warn us that that will get a little worse.

They originally told us the new liver was bigger - but I can't imagine how - his tummy is flat! I haven't seen a flat tummy in I don't know how long. His old liver was 300 grams - the new one only 145 grams. We have pictures of the nasty old green liver.

And, we have pink toes. They are so beautiful. The nurse practicioner said that his jaundice is down, but I don't know if that is a visual thing or based on labs that were drawn.

Cautiously optimistic - we know that the next 48 hours are so critical & precarious.

Grandma is VERY sore and in a lot of pain - but she says that it is a good pain. She is doing well and is in a step-down ICU. She will get up & moving tomorrow morning.

Thanks for all the well wishes & prayers! Keep them coming!

Please see previous posts under "read journal history" on top to see how to send Tanner's hero an e-greeting in the hospital. We love you, Grandma Red!

Mommy - 11 p.m. update

Just a clarification - the bili IS down! The 5 p.m. lab draw showed that his bili is down to 6.3 (from 10.1 yesterday!) Partially due to some blood that he received from transplant, but good news. Toes are pink, and the tips of his ears are starting to turn pink. Even the nurses were in agreement that he was loosing the yellow.

And, tonight, I'd almost swear that those eyes were white. If not white, a pale yellow & not the "Mountain Dew" yellow we are used to seeing.

Pain control is our biggest problem. They put him on a Fentanyl (sp?) drip. Otherwise, doing as well as can be expected.

Still praying hard.

Tuesday 9 a.m. update

Tanner & Grandma both had a good night last night.

Grandma is feeling better - a little bit nauseus (sp), but getting some meds for that. The pain is being managed via a pain pump - so, she is doing pretty good.

Her spirits were lifted when we brought in a video of Tanner. Tanner is moving more than Grandma at this point! He's got one arm that isn't restrained and he's moving it around & kicking with his feet.

His labs are improving - his Alkaline Phosphate (one of the liver function tests) is NORMAL!!!! And, his bilirubin (measures how yellow he is) is down from 10.1 on Sunday to 6.4 yesterday afternoon to 4.6 at 4 a.m. this morning. At this rate, by the time Grandma Red sees him tomorrow, he will be pink.

Tanner's nasal cannula was removed overnight and his oxygen levels continue to remain in the upper 90s. There is talk of moving him to the floor either late today or sometime tomorrow. The GI doctor today mentioned that he might only be in the hospital 7 - 10 days - we were told on Friday to anticipate 3 weeks.

We are praising God for getting us through this first phase and continue to pray for smooth recoveries. We are cautiously optimistic - both Grandma & Tanner have been through MAJOR surgeries and can take a quick turn for the worse.

Please continue to keep us in your prayers! God has answered so many of them in the last 24 hours.
Please send Grandma an e-message & let her know how awesome she is!.

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Sunday, February 27, 2005 9:21 PM CST

It's Sunday night. Grandma & Tanner are checked in, vitals taken, chest x-rays done, EEGs done, blood work drawn - so far everything is still ago.

Daddy, Aunt Sherry, & Grandpa Elmer are staying at the hotel. Mommy will be staying with Tanner tonight. Ms. Ashley, our nanny, & Grandpa Bob are at the apartment with Mo Mo. Great Uncle Alfred & Great Aunt Mary Lou are almost here.

Excitement, fear, joy, exhaustion, apprehension - all of that & more. Praying for a pink baby with white eyes and a not-too-sore grandma 24 hours from now.

I'm headed to Children's now - taking Tanner's lucky blue & white giraffe to him. Holding my baby tight - that's what's on the agenda tonight.

Prayers - that's what we need - the next 72 hours are the most critical.

Love to all -
Stacy

Monday at 1 p.m.

Grandma's piece of liver just arrived from Barnes-Jewish hospital. It is a little larger than the piece of liver that they are removing, but at this point, they think they will still be able to sew him up because of his mild ascites. They did take a small piece of vein from grandma that they may have to use on Tanner.

His old liver was "exceptionally green", knarly, bumpy, scarred - very cirrhotic. The doctor thinks he may have had another 6 weeks until things started getting really ugly.

Grandma is doing well - they are sewing her up now and we should be able to see her around 3 p.m.

They expect another 3 to 4 hours with Tanner - they will have to modify his kasai some and that will take longer than anything else.

Remember - if you want to send Grandma an e-message you can do so by going to the following webpage (you may have to copy & paste into your browser)

http://www.barnesjewish.org/groups/default.asp?NavID=530

Keep the prayers coming - they are helping!

Stacy

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Friday, February 25, 2005 5:08 PM CST

It's been a crazy few days - for those of you who haven't visited our site lately - check out the journal history. For those of you who have -


GRANDMA IS A MATCH!

On Monday morning at 6:30 a.m., Grandma will go into Surgery at Barnes-Jewish Hospital & Tanner will go into surgery at St. Louis Children's Hospital. They will take 1/3 of Grandma's liver & then give that gift to Tanner. I don't know how you adquately say thank you to the person who saves your child life.

We will be "settling in" in St. Louis over the weekend. We have found a furnished apartment that we will rent. However, we will keep our hotel room here at the Parkway until we know that everyone is doing well. It's connected via skywalks to both hospitals and will give us a convenient place to rest & shower during those first few days.

Grandma & Tanner will both be admitted on Sunday afternoon. You will be able to send Grandma an e-card via the following website address: http://webserver01.bjc.org/BJSPHECard/ECard.asp
Also, please leave messages here.

We will do our best to keep this website updated over the next critical week. Check back often - leave us messages.

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Thursday, February 24, 2005 6:50 PM CST

Well, we are in St. Louis.

Grandma met with Dr. Chapman - the head of the adult transplant team & the man who will be doing her surgery on Monday.

Blood work was pulled, blood pressure taken, chest x-ray, & EKG. Tomorrow Grandma has an MRA, meets with an internal medicine doctor, and then the psychologist. Tanner meets with Dr. Shepherd (GI) and Dr. Lowell (surgeon).

Unless Grandma is unable to donate, the surgery will be bright & early on Monday morning. Grandma & Tanner will be admitted on Sunday at 1:00 (unless Tanner is admitted tomorrow for a feeding tube to gain a few ounces prior to surgery).

We are working on getting semi-permanent lodging arrangements made. Ronald McDonald House may have a room available in a few days - but they will not have an apartment available. So, we are planning on staying in the hotel attached to the hospital (the Parkway Hotel) until 48 - 72 hours post transplant (the most critical time post-transplant).

We will post again on Friday - hopefully things will be finalized by then.

Love to all -
Stacy & Randy - Tanner & Morgan

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Wednesday, February 23, 2005 6:48 AM CST

******AFTERNOON UPDATE*******
Penny (our transplant coordinator) just called. They have tentatively scheduled Tanner's living donor surgery for Monday, February 28th IF grandma is a match. We will know whether or not grandma is a match by end of business on Friday. We will keep everyone posted as things develop.
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Back for another update.

Tanner's waiting score was updated yesterday to reflect his latest lab values. His score is now a 20 (down from 25). He's still first in line for little tykes in our region with his blood type. So, it's still just a waiting game.

With the new score, we only have to update it once a month. However, we will repeat labs in 2 weeks. If they have gotten worse (which would make his score go up), then they will rescore him anyways to help him get his liver sooner.

We are going to St. Louis tomorrow. Grandma is going with us to be tested for Tanner's living donor on Thursday & Friday. And Tanner has a check-up on Friday. We're told it will take about 2 weeks for them to determine whether or not she is a match. Depending on how the team feels like Tanner is doing, they may go ahead & schedule the living donor surgery in mid-March.

They have also told us that it is likely Tanner will get a feeding tube while we are there. Tanner's food intake has drastically decreased the last few weeks. It coincided directly with me getting sick - so, I'm still not convinced that it isn't some kind of viral thing. But, he doesn't have time to not gain weight. So, we will probably come home with a new accessory.

If you haven't already, see the link to the great article that was written about Tanner below. If we are still in town, we are also going ot be a part of the Children's Miracle Network Radio-A-Thon to help raise money for KU Children's Center & Children's Mercy on March 3rd. I plan on also promoting organ donation awareness while on the radio.

All for now - we will update when we have information from St. Louis.

Love -
Stacy & Randy - Tanner & Morgan

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Thursday, February 17, 2005 9:30 PM CST

*NEW PHOTOS IN THE PHOTO ALBUM*

Just a quick update.

The DeSoto Explorer (our hometown newspaper) ran a really nice article on Tanner in this week's paper. You can see the link to it below. It was written wonderfully - but seeing it in writing was a very difficult thing for us. I think it made everything that we have dealt with this past year even more realistic.

I checked the UNOS website tonight. For kids under 5 and A bloodtype, Tanner is first in line for a liver. It doesn't mean that the first liver that becomes available is his, but it does mean that if an infant liver of his bloodtype would become available in our region, he should be able to receive it. Keep in mind - this sort of thing changes daily.

We repeat labs this weekend that will change his score. Even with great improvements in his labs, Tanner should remain at the top of the list. Reality is setting in that the call really could come at any time.

Now if they'd just get the darn pager figured out....

Since we always forget our dear little Morgan - she is doing GREAT. She has one tooth that you can almost see when she smiles. She's thinks she can walk now (if we help her). And she's started scooching when sitting. She shows no interest in crawling and I think she's going to go straight to walking. She has quite a temper and is learning the meaning of the word "no". When we tell her no, she will turn bright red, drop her head onto a nearby surface, and howl. She's been fighting a cold this last week and just hasn't felt good - she's been very clingy, which is not like our little Ms. Independent Morgan. There are some days that she is what keeps us going.

Randy & I are both battling a severe viral bug. Fevers and a chest congestions. It's been miserable. I'm not sure if we gave the bug to Morgan or if she gave it to us. Ironically, Tanner is the only one who hasn't picked up this bug. Probably because we are so careful around him.

So much for my short update....

Love to all -
Stacy & Randy, Tanner & Morgan

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Wednesday, February 16, 2005 8:01 AM CST

***SEE NEW LINKS BELOW & NEW PHOTOS IN PHOTO GALLERY***

Greetings everyone.

Well, besides 3 doctors appointments, 2 faulty pages from teh transplant center (one at 4:30 a.m.), and 1 lab draw this week has been rather uneventful for us.

After getting Tanner officially listed last week, we were sent on an urgent trip to KU to get Tanner a shot of Vitamin K. The Vitamin K is used to help control the clotting factor (the lab that was WAY off at our last lab draws).

In the meantime, I decide to come down with the flu. I ended up being having a 102 F temperature for 3 days and missing work all three of those days. I finally ended up in the doctor's office myself on Friday and came home with a nice supply of antibioitics and cough medicine.

Over the weekend, yet another lab draw to see if the Vitamin K shot had worked. The good news is that it has worked and lowered Tanner's clotting factor. Although still not within normal limits, it is no longer considered dangerously high.

Then, over the weekend, Morgan develops a croopy cough. We avoided the Monday urgent care nightmare, and instead booked an appointment for Tuesday afternoon. In the meantime, Tanner throws up and starts acting strange. So, St. Louis sends Tanner to share in Morgan's pediatric visit. The "good news" is that it's all viral.

The bad news - daddy caught it today. He's now home with a fever and trying to sleep it off before it gets too much worse.

Otherwise, our bags are packed & we're waiting for the phone call to tell us that they have a liver for Tanner. We did go down & check out the New Centruy airport which we will fly out of when we get "the call". So, we feel like we are as prepared as we will ever be.

We repeat labs on Sunday so that Tanner's waiting list score can be re-evaluated. (It's sure to go down some after his Vitamin K shot.) And, we go to St. Louis next Thursday and Friday. Randy's mom will be evaluated to be a living donor for Tanner if a deceased donor is not found. Tanner will have a check-up with the transplant team.

Please keep the following kids in your prayers - all of these kids have had transplants in the last few weeks: Roger (transplanted 2x in 72 hours and really fighting), Gracie (just transplanted yesterday), and Natalie (received a portion of her mommy's liver and has had some complications). See above for links to Natalie & Gracie's websites.

Love to all -
Stacy
Stacy

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Monday, February 7, 2005 9:37 AM CST

NEW PICTURES IN PHOTO ALBUM! NEW PICTURES IN PHOTO ALBUM!

Update Tuesday February 8th 2004 -

It is offical - Tanner is on the UNOS list for a liver transplant. His score of a 25 makes him 2nd in line for kids under 5 years old in our region. Please pray that he gets his gift of life soon.

Greetings everyone -

Sorry it's been so long since I last updated. I have been waiting to get Tanner "officially" on the list. It looks like that will happen today (getting final insurance approval).

We redid Tanner's labs yesterday and his PELD will be a 25. For our family & friends not in "transplant world", this is a very high score and means that Tanner is actually very sick. It's hard to look at our little boy & acknowledge that he is as sick as this score shows.

Tanner will be second on the list for kids under 5 in our 8 state region to get a transplant (with his blood type). Hopefully this means that he will get his gift soon, and we will not need to do a living donor.

If we do need to do a living donor, Randy's mom is first in line. Loretta will be tested on 02/24 & 02/25 to see if she is a match. If she cannot donate for some reason, Randy is next in line. We aren't sure where we will go after Randy since we need someone who is A blood type.

Here are his other, relevant labs:

Liver Function Tests
Total Bili 10.1 (way high, but lower than last labs)
Direct Bili 9.0 (way high, but lower than last labs)
AST - 163 (up a little, but still too high)
ALT - 131 (up a lot, way too high)
Alk Phos - 768 (down quite a bit, but still too high)
GGT - 481 (down a bit, but still too high)

Basic CBC
WBC - 6.5 (down, on the low end of normal)
Hemoglobin - 10.7 (down, on the low end of normal)
Hematacrit - 32.9 (down, on the low end of normal)
Platelets - 127 (holding steady, still below normal)

Kidney Function (when the liver fails, it can wreck havoc on the kidneys, too)
BUN - 12 (glad to report - smack dab in the middle of normal)
Creatine - 0.3 (normal)
Total Protein - 5.8 (low)

Liver Synthetic Function Test (controls fluid in the tummy, also known as ascites - we know Tanner has mild ascites right now)
Albumin - 3.0 (lower, but within normal limits)

Liver - Blood Clotting Function
PT - 19.3 (way high, and much higher than last time)
PTT - 37.1 (way high, and much higher than last time)
INR - 1.8 (way high - this is what caused his PELD score to go up)

Please keep us all in your prayers - this is an exceptionally stressful time from many different angles. We will do better at keeping this website updated, so please check in for more updates!

Love to all -
Stacy

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Monday, January 24, 2005 9:13 PM CST

Well, we're in a bit of a shock. The team in St. Louis has determined the following:
Tanner has:

Portal hypertension
Probable varices
Minor ascites
Failure to thrive (one of their biggest concerns)
And, in general a liver that is failing at a pretty good clip

He will be listed as soon as things can get figured out logistically (we'll have to have an angel flight set up)- probably within the week. They are switching him to Neocate (and adding something else - sorry, too much info today). And, we will work up all possible living donors ASAP.

If he doesn't get a cadaveric donor in 4 weeks, we will schedule a living donor surgery in the 6 - 8 week mark.

We knew that Tanner was pretty sick - but didn't realize that we were to this point yet. We were told to watch for bleeds (as if we weren't already petrified of all that) and fever, and we'll be doing labs frequently. It's likely that a feeding tube is in the near future.

As of his current condition, his PELD is a 19. They have other kids on the list with his blood type, but that high of a PELD shoots him to the top.

That's all for now. Keep us in your prayers - the next few weeks will be a WILD ride.

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Sunday, January 23, 2005 1:30 PM CST

Hi all -
Well, we are headed to St. Louis tomorrow morning to meet with their transplant team. Dr. Daniels here in KC didn't think that he needed to be listed 2 weeks ago, but told us that we should start talking to the insurance company regarding transplant. Well, we found out that the insurance company wouldn't cover transplant in Kansas City.

So, we are checking out St. Louis Children's Hospital program. Their group seems to do a lot of small babies, and they will do living donor. We meet with Dr. Shepherd on Monday, and if he thinks that he needs to be listed, then we will spend Tuesday & Wednesday doing transplant eval.

We took labs yesterday & got back the results today. Numbers are from the following dates: 12/5, 12/26, 01/09, 01/22

Total Bilirubin - 12.6/ 9.5 / 10.6 / 10.7
Direct Bilirubin - 10.4 / 8.4 / 9.4 /9.5
Albumin - 3.8 / 3.9 / 3.7 /3.4
AST - 154 / 131 / 132 /130
ALT - 70 / 59 / 84 /94
GGTP - 263 / 613 / 609 /593
Alk Phosphate - 897 / 846 / 930 /1051
PT - 13.7 / didn't read / 15.1 /15.5
PTT - 34.0 / didn't read / 35.7 /28.5
INR - 1.03 / didn't read / 1.22 /1.28

Based on these labs, weight, birthdate, etc - Tanner's PELD would now be a 19 (from 17 two weeks ago). St. Louis' comment to us was that they couldn't imagine not listing a kid with his labs, so we're braced to bring home a baby on the transplant waiting list.

Please keep us in your prayers - my mom will be updating our this page while we are there.

Stacy.

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Saturday, January 15, 2005 0:27 AM CST

NEW PHOTOS! NEW PHOTOS! NEW PHOTOS!


We are headed to St. Louis!

We met with our normal GI last Tuesday. As much as we like him, they still didn't think it was necessary to list Tanner or give him a feeding tube. But, they are postive he will need a liver this year, and the average wait is 6 months for a kid of his size.

This really bothered Randy & I - if they weren't listing him (and they didn't for awhile), would he have 6 months from the time that they did decide to list him? Dr. Daniels assures us that he has never lost a patient on "the list", but, I don't want Tanner to be VERY SICK pre-transplant.

Due to all of this, plus the fact that we would like to have living donor as an available option, we started checking into the programs at St. Louis & Omaha. St. Louis is well known & well respected, while Omaha is world renowned. I really thought that we'd end up leaning towards Omaha, but that hasn't been the case.

We contacted both centers - while they are encouraged that his blood clotting numbers (one of the many things that the liver is SUPPOSED to if is healthy) are just outside of normal, they are concerned by the sudden increase in these numbers. And, St. Louis' comment that was a bili over 10 was a significant worry in itself. While they can't guarantee that they will list him for transplant, the NP's comment to me was "I'd have a hard time imaging why we wouldn't".

The nurse practicioner at St. Louis has been great to work with - called to keep me informed of where they were & what they were waiting on - sent us a boatload of transplant information. Lots of very good things. She set us up for a 1 hour appt with Dr. Shepherd on Monday, January 24th. If we both agree, we will spend the night and begin transplant evaluation.

The transplant coordinator at Omaha seemed very taken back that we wouldn't automatically want to list there, and was uncooperative in setting up a time when we could come see their facilities and meet some of their key people. She said the only way that we could meet people was if we signed up for the 3 day evaluation. Well, I'm not willing to commit that much of a very valuable resource (vacation time) until I know more about the program. She didn't volunteer to send me any information, and I felt like I was kind of wasting her time.

That's where we stand for now. This is a busy week - Grandpa 3 Hairs came down to help me take care of the kids while Daddy was a conference. Grandma Red came down (early) to help. She'll be here all next week while Ms. Ashley (our nanny) is out of town.

Keep us all in your prayers - the next few weeks will be trying ones as we make very critical decisions for Tanner.

Love,
Stacy

Coming up in Tanner-land:
01/23 - Draw labs
01/24 - Head to St. Louis to meet Dr. Shepherd
01/25 & 01/26 - If we like STL, transplant evaluation
01/27 - RSV shot (home health)
02/02 - Appt witih Dr. Maben

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Monday, January 10, 2005 12:30 AM CST

Well, here are Tanner's labs. The first number is today, second number is 12/26, and third number is 12/5.

Total Bilirubin - 11.4 / 9.5 / 12.6 (normal is <1)
Direct Bilirubin - 9.4 / 8.4 / 10.4 (noraml is <0.5)
Albumin - 3.7 / 3.9 / 3.8 (all good)
AST - 154 / 131 / 132 (normal < 60)
ALT - 70 / 59 / 84 (normal < 50)
GGTP - 263 / 613 / 609 (normal <115)
Alk Phosphate - 897 / 846 / 930 (normal <320)
PT - 13.7 / didn't read / 15.1
PTT - 34.0 / didn't read / 35.7
INR - 1.03 / didn't read / 1.22

The last 3 numbers are how the liver affects the ability for the blood to clot. The fact that they have risen that much is not good. When we originally talked to Dr. Daniel we were told that if ONLY the bili and liver functions were high, he wouldn't list us, but if the other numbers started to go, we'd be listed.

I'm not a doctor, but to me, those numbers are "starting" to go (they are just a little over normal). So, I anticipate that we'll begin the listing process (soon). Our appointment with Dr. Daniel is tomorrow at 1 p.m. - even though the weather is horrible and the roads will probably be slick, we plan on making it. He has had some cancellations, so hopefully that will give us more face time with him.

In addition to all of this, Tanner has actually LOST weight the last week. A feeding tube is pretty much guaranteed at tomorrow's visit.

Keep all of us in your prayers - the next few weeks could be trying.

Love,
Stacy

UPDATE FOR WEDNESDAY, JANUARY 12TH

Well, we saw the doctor yesterday. We're a little frustrated because the doctor decided not to list him or give him a feeding tube. His PELD score would be a 17 right now (which a lot of kids get transplanted lower than this), so we are very concerned that he ISN'T listed. He is obviously sick enough that he should be listed.

We repeat labs in 2 weeks and when our next appointment is will depend on those labs.

In the meantime, Randy & I are trying to reach our insurance to find out whether or not Kansas City is even covered for transplant and to find out which other centers are covered as well. We will probably go for a 2nd opinion in the next few weeks.

Please continue in prayer - we definitely need them during these times of such critical decisions.

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Wednesday, January 5, 2005 9:24 AM CST

Greetings all...

Well, we will go in & have Tanner's labs redrawn on Sunday. What happens with those labs will make a big determination on where we go from here.

Tanner has been on a medicine called Rifampin to help with his itching for about a month now. It helps alot and another family we know started on it about the same time. There daughter's bilirubin went down 2 points - as did Tanner's last time. It may be possible that the drug was partly responsible for his bili dropping. If that's the case, then we may get listed even with lower labs.

Otherwise, he's doing pretty well. He's taken up laughing whenever we laugh, which is pretty funny. He's teething (as is Morgan), so it gets a little trying in our house many days.

The next few weeks are crazy. Our nanny leaves for vacation on 01/14 & Randy has a conference on 01/13 & 01/14. So, my dad is going to come down & help out with the evening & night shifts on the 13th & 14th. And then Randy's mom will be in town to watcht the kids while our nanny is gone. It will be a CRAZY few weeks - especially when you add on labs & doctor visits.

All for now...will update more after we have lab results (sometime on Monday). Keep little Tanner in your prayers - we need everyone that we can get!

Stacy

Coming up:
01/09 - Labs drawn at Children's Mercy Southland
01/11 - Appt with Dr. Daniel
01/13 & 01/14 - Daddy out of town - Grandpa 3 Hairs in town to help out
01/15-01/22 - Ms. Ashley out of town - Grandma Red in town to help out
01/28 - RSV shot due
02/02 - Appt with Dr. Maben (pediatrician)

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Monday, December 27, 2004 6:17 PM CST

Tuesday, December 28th update....

Talked to the nurse today, we will redraw labs on 01/09 & then we have an appt with Dr. Daniel on 01/11. He will probably get a feeding tube then, but otherwise, it will all depend on how his labs are next time.
_____________________________________________

Well, we got back Tanner's latest set of labs (taken yesterday).
First labs are from yesterday, labs in ( ) are from 12/5.

Total Bili - 9.5 (11.4)
Direct Bili - 8.4 (10.4)
AST - 131 (154)
ALT - 59 (70)
GGTP - 613 (263)
Alk Phos - 846 (897)
Albumin - 3.9 (3.7)
Hemoglobin - 13 (13)
Hematacrit - 38.1 (37.8)

They couldn't run INR/PT/PTT because the blood they drew for those labs (ironically) clotted in the vial. On 12/5, they were 1.03/13.7/34.0. Other than labs, his complications include itching & poor weight gain.

We were told in early December that if the labs got worse, we would begin the listing process. We were ready for that process & everything that went along with it. So, we aren't really sure what to think of today's labs. The doctor is back later this week.

Our doctor keeps saying that he's seen lots of kids hit that 10 mark on Bili, but have few other side effects, and sit there for a long time.

Interestingly enough, Tanner's liver labs ALWAYS drop after we've had him blessed by our priest. That includes pre-kasai (twice) and the one time he was blessed post-kasai (within two weeks his bili got down to 1.0). We had him blessed after the Christmas Eve mass on Friday night (otherwise, we NEVER take them in public due to their prematurity). Maybe we'll have to have the priest come out & bless him each week!

We will tack on an additional update once we have heard from the doctor. My guess is that we will have a follow-up appointment sometime the first week of January.

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Thursday, December 23, 2004 12:45 AM CST

NEW PICTURES! NEW PICTURES! NEW PICTURES!

MERRY CHRISTMAS EVERYONE!

This year has been such a difficult time for Randy & I. We have had so many emotional ups and downs with our family this year. So, during this holiday season, we are grateful to celebrate life.

We have so many people that we are grateful to, but we send out special thanks to the following people:
* nurses & staff at Overland Park Regional hospital - they not only cared for our babies who were born way too early, but we felt like we were a part of their family. Their level of care, concern, & love allowed us to leave our babies in Kansas City during my parents accident.
* my OB - Dr. Gordon Clark who went above & beyond the call of duty for any OB. Not only did he take care of me physically, but he & his wife Tracy checked in on us & helped many times throughout the spring & summer
* our "cousins" Wendy, Darrell, Sadie, Isaac, & Dune Coddington - not only did they take in & care for my very obtuse father after the accident - they researched and called different hospitals and insurance companies for us. They drove countless miles visiting mom & dad in the hospital, driving dad to Kansas City, and simply running errands - we simply couldn't have made it through the summer without you guys - we love you
* all of our CLASS friends. Having & raising a child with a life-threatening condition is never an easy task. These people have given us the sounding board that we need with questions, concerns, and space to vent on Tanner's liver disease. Most of them have been in our shoes and have been the most incredible support group. I haven't met any of these people, and yet I consider many of them my friends. A simple thank you isn't enough - and I hope you all know that.
* Father Craig Maxim - for taking time out of his busy schedule to come spend hour with us in the hospitals & for his continuing prayers.
* my in-laws - for stepping up during my parents accident and coming to Kansas City to help us the many times that we simply couldn't do it all on our own.

The upcoming year holds many unknowns for us. We can only take them one day at a time & know that God has a plan.

Our next step is to repeat Tanner's labs on Sunday evening. We will most likely have an appointment next week or the week after. At that time it is very likely that Tanner will be listed for transplant. In addition, it is likely that he will get a feeding tube as his weight gain has not been satisfactory.

God Bless you all during this holiday season. May he keep you safe as you travel - and may you find true joy & peace during the Christmas Season.

Love to all -
Randy & Stacy, Tanner & Morgan

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Monday, December 13, 2004 8:03 PM CST

Greetings to many of our friends and family who have just discovered our web page. Check out the journal history for the wild ride that we have been on the last few months.

Randy & I are accepting the fact that Tanner is going to need a transplant - and sooner, rather than later. We went Christmas shopping this weekend, and found ourselves picking out toys for Tanner that would easily go to the hospital. Not something that you want to have to do - but, hopefully next year we won't have that limitation.

The switched meds for Tanner's itching has been a miracle. Tanner is more alert now, smiling, talking (again), and being more active. The down side is that his appetite is supressed with this med. So, we have a hard time getting food down him. So, we are going to tweak it a little bit more & see if we can't get the food consumption up to help with his weight gain.

The goal was to have no doctor's appointments this week - but, then I have a dentist's appointment to get a filling fixed. One of these weeks will NOT involve a visit to any medical profession.

Other than that, we are celebrating all of the wonderful people that have entered our lifes within the past year - including our beautiful babies, the many doctors, nurses, & staff that have been involved in their care this past year, & especially our liver friends whom have given us support & advice. We would not have made it through all this madness without you guys.

Happy Holidays Everyone!

Stacy

Coming Up in Zerr Land:

Tuesday 12/14 - Cookies & treats to all of the doctors & staff
Monday 12/20 - Aunt Sherry gets back in town
Thursday 12/23 - Grandma & Grandpa Zerr arrive in town - Mommy & Daddy get a full night's sleep!
Friday 12/24 - (Uncle) Jim FINALLY comes to see us
Saturday 12/25 - Santa visits - and then Grandma & Grandpa Robb come to visit
Sunday 12/26 or Monday 12/27 - Liver labs to determine whether or not Tanner will be listed for transplant
12/27 & beyond - We're leaving that in God's hands!

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Tuesday, December 7, 2004 2:27 PM CST

Well, the results are in. First set of numbers is labs on 11/5 - second set is labs taken 12/5
Total Bili - 4.9 to 11.4
Direct Bili - 4.5 to 10.4
AST - 116 to 154
ALT - 136 to 70 (wow)
GGTP - 441 (taken on 10/27) to 263
Alk Phos - 346 to 897
PT - 3.9 to 3.7
PTT - 28.6 to 34.0
INR - 0.87 to 1.03
Platelets from 457 to 270

Weight gain has only been 11 grams/day (about 1/3 of an oz) - but, they aren't taking into conisderation the fact that he lost 3 oz & was NPO for his hernia repair surgery. When everything is well and we're not messing with his meds, he's gaining about 25 grams/day.

Obviously, these labs didn't go in the direction that we had hoped, but were not completely unexpected either.

We repeat labs on December 26th - if they have gotten worse, then he will be listed. In the meantime, we are to try the Rifampin again (at a lower dosage) to help with the itching. If that doesn't work, we go back to Atarax, but double the dosage.

Stacy

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Sunday, November 28, 2004 3:46 PM CST

Hope everyone's Thanksgiving was as wonderful as ours.

We had a good time at "home" with Grandma & Grandpa Robb. We got to spend 3 full days there - holiday weekends are so nice! Lots of spoiling, too much food, but a good time by all. (Thank you to my friend Sarah for loaning us the exersaucer - it was a life saver)

Tanner doesn't seem to be feeling very well. Still VERY itchy, and hints of a cold. Lots of sneezes, congestion, but no fever. Sleeping lots, too. Added a nebulizer treatment here and there to help with the breathing.

Otherwise, recovery from his surgery is going well. He still seems a bit sore, but the incisions look good. And, he's eating like a little pig again! He had 29 oz yesterday (a record for him) - while sister only had 21 oz (and she's 30igger than him!). We're watching for a growth spurt & hoping that he packs on the weight the next few weeks. This will prevent feeding tube discussion at Dr. Daneils' in a week.

Keep checking back - we'll keep you posted on updates!

Stacy

This week in Zerr Land:

11/29 - Aunt Sherry in town to visit us!
12/1 - Tanner Appt with Dr. Schropp (post-surgery follow-up)
12/2 - Synagis & flu shots for Tanner & Morgan via home health
12/7 - Tanner Appt with Dr. Daniel & labwork

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Monday, November 22, 2004 10:11 PM CST

Hi all -

Just back from the NICU at KU where Tanner is tonight - I might be slightly crazy, but I'm leaving him there all night by himself. There are several nurses there who had Tanner over the summer & remember him - and were having way too much fun with an interactive "big" baby (vs. the 3 lbers they are usually dealing with). I know that he will be adequately coddled tonight, so I came home to enjoy some sleep.

It took about 1.5 hours to do the hernia surgery & his circumcision today. They can't reassure us that the hernias won't come back as the sac is very thin and sometimes it just doesn't hold.

In addition to the hernias, he has hydroceles as well. So, they were repaired at the same time, although that is something that will again have to be monitored over the next year or so. Our little Tanner always has some obstacles for us.

The good news is that we should be discharged 1st thing tomorrow morning - and I mean first thing. The surgical resident should do rounds between 5:30 - 6:00, he said he'd have his paperwork done by 6:30 a.m., and the NICU has already written up his discharge papers. They hope to release us before shift change at 7 a.m.!

Tanner doesn't appear to be in too much pain - just getting ibuprofin as needed (it's been 8 hours since his last dose). He seems to be more hungry than anything (that's my boy!)

We're looking forward to Thanksgiving with G&G Robb.

Happy Thanksgiving Everyone!
Stacy

Coming up -

December 1st - Follow-up appt with surgeon - RSV shot & second half of flu shot
December 7th - GI appt & labs

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Saturday, November 20, 2004 9:29 PM CST

Happy Thanksgiving (a little early)!

Another crazy week - and an even busier one coming up.

Our nanny & I met our GI doctor this week. They examined Tanner & gave us some preliminary information on his biopsy. His biopsy showed quite a bit of scarring - about 50% with a proliferation of bile ducts. This happens when there is significant blockage in the liver. So, this is not good news, but nothing that was unexpected.

Since Tanner has had some traumatic times lately, they opted to hold off on blood tests for now. We'll get those done on December 7th. They did put him on Atarax, which is medicine to help with the itching that he has been experiencing. If we take the gloves off of his hands, he scratches his ears until they bleed.

So far, the atarax doesn't appear to be helping. On Friday, we started supplementing the Atarax with Benadryl. That seems to be working much better, but I can't help but worry about the amounts of medications that he is on. He takes 4 prescription medications, 2 multi-vitamins, and one over the counter medicine. 14 total does of medicine a day - and I'm told that it's worse post-transplant (at least for a little while).

Speaking of transplant, our GI doctor was very encouraging. He doesn't mind us having a living donor as a "Plan B". He did tell us that they had not lost a child on the waiting list, and did not think it would be a problem to get a liver for a child even as small as Tanner. We learned that their success rate is 97% over the last four years since he came to town. So, all of that is very encouraging. We feel much better now than after our initial meeting with the transplant surgeon.

When to list him is the next question - he's not sick enough right now. Besides the high bilirubin and itching, he's doing ok. His weight gain is starting to pick up again, and he's having more color in his stools. It's possible that things could "even out" for awhile, and he could remain this shade of yellow - but have no other major issues. At this point, we'd be in a holding pattern, knowing that eventually he'd need a liver.

On Monday, Tanner has his hernia surgery. It will be nice to finally have this taken care of. Tanner will be in the NICU after the surgery. Normally this is an in/out procedure, but on Friday the surgical nurse told us that Dr. Schropp didn't feel comfortable sending Tanner home on Monday - and, in fact, wanted him in an ICU overnight. Since KU's PICU is shut down, back to the NICU we go. Hopefully this will indeed be an overnight trip.

It was this time last year that we had just found out we were pregnant - it's amazing how the last year has brought so many changes for us. While it wasn't quite what we envisioned, we are very thankful for the two blessings that God has bestowed upon us.

Happy Thanksgiving!

Stacy

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Sunday, November 14, 2004 7:17 PM CST

Greetings all -

Another week has flown by. This was a busy week for us.

On Thursday, we met with KC's transplant surgeon. Seemed very competent, but when we asked about a living donor option, he went totally negative on us. Told us that having a "Plan B" such as a back-up living donor was ridiculous, and we had to chose one or the other, but it wasn't wise to do both. We were a little put off, but did learn that he had done a trasplant Tuesday night into Wednesday a.m. So, we're hoping that it was just fatigue on his part and the next meeting will go better. We are still debating whether or not we will ask for a referral to another center so that we can further investigate the living donor option.

On Friday, Tanner was in the hospital for a needle biopsy of his liver, and they did an abdominal ultrasound while they were at it. Tanner was very sore & grumbly from his biopsy. No results on either test yet. It was a long 30 hour hospital stay, but then, so are all hospital stays.

Next week we meet with the GI doctor again and have new labs drawn. Tanner's white blood cell count was up while we were in the hospital. So, maybe he truly is battling choliangitis. If that is the case, we may end up back on IV antibiotics, but it's too early to tell at this point.

If that doesn't happen, Tanner will have his hernia fixed on Monday, November 22nd. We're hoping that he's all healed up and ready to go to Iowa for Thanksgiving on the 25th. If not, we're going to have a very disappointed grandma & grandpa (& mom & dad).

Keep us in your prayers. The next few months will be difficult as we determine when & if Tanner will be listed. Our doctors appointments will be many, and I'm sure we'll have a few hospital stays for additional testing as well.

God Bless to all -
Stacy

Upcoming in our world:
11/16 - Appt with Dr. Daniel (GI)
11/22 - Hernia surgery at KU
11/25 to 11/28 - Thanksgiving at G&G Robb's
12/2 - Synagis & 2nd 1/2 of flu shot (ouch!)

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Friday, November 5, 2004 8:36 PM CST

Hi All -

We had another follow-up appointment with Dr. Daniel today. The news isn't good - Tanner's bili has continued to climb - although several of his other liver function tests are still ok. But, if the bili isn't draining, then damage is being done, and as Dr. Daniel put it "transplant is inevitable".

We've got an appointment with Dr. Andrews next Thursday. He will evaluate Tanner & then they will do a needle liver biopsy sometime in the next two weeks. Based upon those results, they will start to evaluate Tanner for a transplant.

He won't be listed at this time, but they want to have things in place so that they can do that when need be. He won't be listed until some of his other liver functions start to decline (clotting factor, etc).

They have discontinued his IV antibiotics (they weren't helping), stop the steroids (again, not doing anything), and just continue to watch everything. We'll have his hernia surgery in the next few weeks so that at least one issue will be resolved.

Many thoughts & prayers are needed for all of us as we sort through not all the medical information, but the emotions that go with it all.

Stacy

Upcoming events:

11/11 - Meeting with Dr. Andrews - transplant surgeon
11/12 - Needle liver biopsy at Children's Mercy Hospital (10 a.m.)
11/16 - Appt w/ Dr. Daniel (GI) & labs
11/22 - Hernia repair surgery by Dr. Schropp at KU Medical Center

PSS - Please keep little Marisa in your prayers. She received her gift of life on Friday night - she is recovering at the Univ of Michigan hospital.

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Sunday, October 31, 2004 5:22 PM CST

Hi All -

We've had a busy weekend. On Saturday, Grandma & Grandpa Robb came down to visit from Iowa. It was the first time that Grandma had gotten to visit since the accident, so it was a really good day. Of course, Morgan & I were spoiled & held all day - I'm told that's what grandparents do!

Saturday was also our 6 month birthday - Mom & Dad say it has been the LONGEST six months of their lifes. They are grateful for where we are today, but realize that we still have many obstacles & hurdles in front of us.

Sunday was Halloween. Mom declared it as a "smell the roses" day and didn't do anything but rock & hold babies. Oh, and take lots of pictures. She's got this silly pumpkin outfit & hat that she made me wear. Doesn't she realize that orange is not my best color?

Not a fun week ahead. Mo-Mo and I have a 6 month check-up on Wednesday - that means shots, shots, and more shots. (And Dr. Maben wonders why we get nervous when we see him!?!) Then, on Friday I get to go back to see Dr. Daniel and have more labs drawn and a weight check. Dr. Daniel says I'm not gaining fast enough, so now mom & dad are force feeding me every time I'm awake.

That's all for now folks - check back in soon!
Tanner (as dictated to mom)

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Wednesday, October 27, 2004 10:56 AM CDT

Well, we just got labs back from yesterday.

Tanner's numbers are up, which isn't good. The doctor & nurse are stressing that he is still gaining weight (although not as quickly as they would like), clotting factor is good, and kidney function is normal. For our liver friends who appreicate numbers, here they are (numbers in parenthesis are from labs on 10/13):

Total Bili - 4.0 (3.0)
Direct Bili - 3.6 (2.7)
ALT - 102 (123)
AST - 150 (116)
GGTP - 441 (200)
Alk Phos - 369 (555)
Albumin - 3.9 (3.7)
CBC - ok
Platelets - high
Vitamin levels - all good
TNPT 12.7
INR 0.9
TNP 31.9

Where we go from here is still a question. The doctor said that it can take a few months for the system to get back to normal after a bout like this. I'll post on CLASS and see if anyone else has had that experience.

They did take Tanner off of Pregestimil since he was not tolerating it very well. Tanner is loving being back on straight Enfamil, so hopefully he will pick up the weight gain soon.

Please continue to keep Tanner in your prayers.

Thanks -
Stacy

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Tuesday, October 19, 2004 10:25 PM CDT

Well, Randy took Tanner back to the doctor today. The doctor thought that Tanner "looked good", but decided not to draw labs until next week. I'm a little disappointed as we had hoped that they would draw labs and if things were better they would lower his steroids. So, instead, we are on 4 mg of Orapred 2x daily. Grumpy baby is back.

In the meantime, his stools continue to fluctuate in color. We're just grateful for color at this point.

Love to all -
Stacy

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Sunday, October 17, 2004 10:01 AM CDT

Well, IV antibiotics haven't been nearly as difficult as I thought they might be. I've got daddy & grandma trained on how to give them, too. Which is a good thing since I will be out of town for 3 days. 63 doses total (hopefully that's it) - 12 down.

The doctor is adamant that we switch Tanner to a formula called Pregestimil. It is a VILE formula, and we can't seem to find it anywhere except E-Bay & Walgreens. It's ridiculously expensive (about 2.5 times that of regular formula) and so far the insurance company won't cover it - although our doctor's office is pleading our case. So far, he's having problems keeping it down (it smells even worse when it comes back up), so we are mixing it with his old formula to help him make the switch. The new stuff is supposed to be easier for him to absorb the fat in it & thus put on weight a little faster.

In addition to the formula change, the doctor requested that we start Tanner on some rice cerel. We did that last night - so much fun - Tanner slurped it down and fussed when we took the spoon away from him.

Tanner's stools vary in color - they will be green & yellow one time & then clay (not good) with a little bit of green the next time. We don't know whether to be frustrated, scared, or patient. When we found out we were pregnant 11 months ago, we had no idea that we'd scrutinize poop color so much or anxiously anticipate changing dirty diapers. My, how kids will change your life.

Morgan is doing great. She's about 12 pounds now (Tanner is about 9# 6 oz). She's become a very happy child in the last few weeks - smiling and talking all of the time. She loves her toys & the exercauser and will "talk" to us a little bit.

All for now - Randy will take Tanner to see Dr. Daniel & have new labs drawn on Tuesday. What those labs show will determine where we go from there. There is a possibility of a biopsy if his numbers haven't improved.

Keep sending those prayers up on our behalf.

Thanks -
Stacy

PS - Please keep Tanner's liver friend Anthony in your prayers, too - he's in the hospital with mild rejection of his liver (he was transplanted in March). www.caringbridge.com/la/anthony

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Thursday, October 14, 2004 6:11 PM CDT

WE'RE HOME, WE'RE HOME, WE'RE HOME!

After about 32 hours in the hospital, we were finally allowed to come home this afternoon with a picc line. The picc line will be used to run 2 antibiotics through three times a day. We had a great stay up until the last resident - which in addition to making some rude comments, said she didn't have to learn all of the nurses names, and messed up three of Tanner's prescriptions. I've already told the doctor that I didn't want to have this resident again.

The GREAT news is that after only 4 treatments, we have color in Tanner's stools - all sorts of shades of green & yellow. Not nearly as dark as they should be, but promising.

Thanks for all of the prayer & support the last few days. At the end of a hard day, it's encouraging to see so many posts on the website. It helps to keep you going.

Keep the prayers headed our way -
Stacy

PS - Please send up some extra prayers for our liver friend, Anthony. He got 25% of his daddy's liver this spring and has experienced a sudden increase in his liver function tests. They are doing a biopsy tomorrow to see what it is - we're really hoping that it's not rejection. Please keep his family in your prayers.

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Wednesday, October 13, 2004 4:58 PM CDT

Today has gone very smoothly - I've been very impressed by the Children's Mercy team. Very good, very kind, and very helpful. We are getting out tomorrow unless Tanner would have a bad reaction to the next dose of antibiotics. For now they will hold off on the biopsy & upping the steroids to see if the antibiotics work first.

They placed the picc line at 8:15 this morning - took a whole 30 minutes. Then they moved us up the the 6th floor - where I've been educated on care of the picc line & we've been adjusting him to his new formula, Pregestermil (sp?). He's not really sure he likes it, but he's been taking it. He's been very demanding, requiring being held until about the last hour or so. And, not held by anyone but mom (although several nurses and a couple of volunteers have tried to comfort him).

Got his labs back - they are up from 1 week ago-

Total Bili to 3.0 from 2.4 last week
Direct Bili to 2.7 from 1.6 last week
AST is actually down to 116
Other labs are about the same - ALT 123, Alk Ph 555, GGT 200

They are saying mid- to late afternoon tomorrow to get out - it's a great facility, so I can handle that. And, we'll follow-up with labs next week.

Thanks for all the prayers -
Stacy

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Tuesday, October 12, 2004 4:23 PM CDT

An update on Tanner....

We met with Dr. Daniel (new GI doctor) this afternoon - Tanner is visably jaundiced. Dr. Daniel said that he wasn't sure what was causing the pale stools, but that he felt an aggressive approach was the best one to take at this point.

So, we are checking Tanner into the hospital tomorrow morning. They are going to place a PIC line (an IV that will remain in place for several weeks) for antibiotics. He'll stay in at least overnight.

They are going to up his Ursodiol (liver meds) & Orapred (steroid). And, possibly do a needle liver biopsy to see if the disease has progressed any further.

Randy & I were able to quiz Dr. Daniels for about 45 minutes & we got a tour of the hospital rooms used by the liver facility. So, we're pretty comfortable with the switch - good thing, because things are going to move quickly.

We'll hopefully be home from the hospital sometime on Thursday, if not, Friday. I guess we'll learn all about IV antibiotics & how to administer them at home!

Keep us all in your thoughts & prayers.

Stacy

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Sunday, October 10, 2004 8:35 PM CDT

Well...we are basically where we have been all week. However, Tanner's poop has gone from white (really bad) to clay (still bad) with some "granuals" of green & dark yellow. The granuals give us some hope as this is how things were when we first came home from the hospital.

We've had other parents of kids with BA tell us that sometimes a viral infection would cause their child's poop to go the wrong color. Tanner has had lots of sniffles & sneezes lately, so we are hopeful that this is just something viral and he will get over the hump soon.

In the meantime, it is really difficult to see the yellow beginning to creep back into the corner of his eyes. We're very anxious to meet with the prospective new GI doctor, Dr. Daniel, on Tuesday. We hope that he can give us some insight or at least a little more direction.

Again - we are back to praying for green poop. We'll keep you all posted again soon.

Stacy

PS - There's a new CLASS (liver child) who's still recovering from her Kasai a little over a week ago - please keep Little Lia in your thoughts & prayers. She's an ocean away (South Africa), but they are going through the same struggles that we so vividly remember.

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Thursday, October 7, 2004 8:26 AM CDT

We finally got labs back this morning - Tanner's total bili has jumped from 1.0 to 2.4 & his direct has jumped from 0.5 to 1.6. Other labs have remained about the same.

They won't commit to it being anything viral - although he has had sniffles, sneezes, and a runny nose the last couple of days.

Our doctor is going to check with colleagues prior to making any other decisions. Definitely looking into a new GI soon.

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Wednesday, October 6, 2004 9:02 AM CDT

We are off to see Dr. Cocjin again. Tanner has continued to have light colored stools over the last 48 hours - in fact, he's had many and they keep getting lighter and lighter. It breaks Randy & I's heart.

When I spoke with Dr. Cocjin this morning, they mentioned doing labs and maybe an ultrasound. This could be a long afternoon, and I guess I wouldn't be too surprised if it turns into a hospital stay.

Keep us in your thoughts & prayers.

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Tuesday, October 5, 2004 7:29 AM CDT

Well, we've had a couple of light colored stools over the last 36 hours. This isn't a good sign as it could mean infection or that the Kasai isn't working any longer. He's done this once before & it seemed to resolve itself. So, it's just kind of a waiting game. I'm still going to put a call in to our GI and see what he thinks.

I may search for a new GI doctor, too. Tanner is our doctor's only case of Biliary Atresia & sometimes I get frustrated with his lack of sharing information with us. He doesn't want to worry us about stuff in the future, but I'm the kind of person who likes to plan and needs to know stuff now. We'll see how he handles our latest problems.

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Saturday, October 2, 2004 11:56 PM CDT

We're counting down the days until the next lab tests - hoping to have more "Normal" results. Our next labs are Thursday, October 14th - one day after our 4th wedding anniversary.

Tanner is currently scheduled for hernia surgery on Monday, October 25th. At that point, he will officially be off of his steroid medication.

Check back for more news then.

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Wednesday, September 29, 2004 1:23 PM CDT

Because of Tanner's labs two weeks ago, we are now slowly weaning him off of the steroids. I didn't realize that that would be a 4 week process!

He is now down to 1.0 mL of steroids every day vs. the 1.7 that he started at. Even this reduction has made him a much happier baby. It's not unusual to find him cooing and "laughing" every evening. We are still battling reflux, but that is getting better as well.

Tanner continues to be on MCT oil - this is supposed to help his weight gain. Hopefully he'll hit the growth chart sometime soon. In addition, he's on 3 other meds - Ursodiol (liver med), Sulfatrim (antibiotic to prevent liver infection from bacteria traveling up his new "bile duct"), and Zantac (for reflux). Maybe one day all he will have to take is the Ursodiol.

Our next set of labs is October 14th. Until then, I find myself closely scrutinizing his color on a daily basis. I take him into sunlight often to check for any "yellow" tinge in his eyes. I'm sure other BA parents can sympathize.

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Sunday, September 19, 2004 10:34 PM CDT

We got back Tanner's LFT on Friday afternoon. We were absolutely elated to find that his Total Bilirubin was down to 1.0 & his direct is down to 0.5. All of the other LFTs are going down, and we are hoping for "normal" sometime soon.

God has answered many prayers.

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Tuesday, September 14, 2004

We are now nearly 8 weeks post-kasai. We repeat labs on Friday. The last lab draw at 6 weeks showed that Tanner's bili level was down to 2.8 from 6.2 (3 weeks post-op). If his level has continued to decline, they will take him off of steroids! HURRAY!

Tanner was put on steroids because a few studies have been done that show kids who are on steroids have a higher success rate with their kasai procedure. It's a dramatic improvement - from 30 percent success in the first few years to nearly 70 percent. While the steroids have made him very irritable and caused ulcers (which led to reflux), we will live with that if it increases the success rate of his kasai.

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