She's a Heart Breaker

I'm heading off to Las Vegas for work. Since the kids are starting to understand days of the week and "x" days, I decided to explain to them that Mommy was getting on a plane & she was going to be gone for 4 days. But, she would be home on Friday and would pick them up from school.

Morgan looked at me & said "But Mommy, I don't want you to go bye-bye."

Equality - Yeah Right

I'm getting ready to go off for another trip for work this week. I don't want to go, and Randy & I have talked several times about how taxing the travel schedule has been lately. However, there are a lot of perks with this job - including a lot of flexibility for doctor's & therapy appointments. So, for now, I travel.

But, from talking with my male counterparts, I notice there is a huge difference in how they get ready to travel, and how I get ready for a trip.

Male counterpart:

Pack his bags
Check his airline ticket
Remind his wife that Friday is garbage day
Kiss the kids goodbye


Female counterpart:

Four weeks ahead - find someone to come and "help" while gone
Do all laundry - for both yourself, the husband, & the kids
Pack bags
Lay out clothes for each kid for every single day of the week
Go grocery shopping to stock the house while being gone
Lay out a meal plan for every single day that you are gone
Check airline ticket
Remind husband about doctor's appointments, medicine schedules, daycare drop-off, and other "must dos" during the week
Kiss the kids goodbye

This is what the "equality" movement was all about? I think we've got a long ways yet to go.

Translations #1

Him: "I got the van unloaded."

Translation: "I brought all the stuff inside and piled it inside the door so that you can sort through it, do the laundry, and put it all away."

Where's the Beef?

My daughter has a way of keeping me on my toes. This week, she started out with pink eye - which kept her out of school on Monday. Then, she woke up with a fever on Tuesday morning - which drug out through the night. We even ended up in Urgent Care on Tuesday night because I was convinced she had a urinary tract infection.

We were slated to leave to go to my parent's house mid-day on Wednesday, and we debated what to do. With Tanner immunosuppresants, we've always asked others who are sick to stay away. And, the meal would not only include my cousin's three kids, it would include my very old and very frail grandparents.

But, when she woke up Wednesday morning, she seemed to be feeling better and the fever was gone - so we packed up the car & headed north to my parent's house.

But, she wasn't done. She started with a fever last night - and at 3 a.m. Thanksgiving morning, it was a little over 104 F. It got worse through the night - medication did little to help it. And, at 9 a.m. this morning, it was 104 F again. So, we threw everything in the van, and left before others began showing up. We were back at home only slightly more than 24 hours after we had originally left.

My Thanksgiving "feast" - a Wendy's single with a cup of chili.

What'd you have for Thanksgiving?

Giving Thanks

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 taugh time 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" - may you have a safe & happy Thanksgiving.

Success despite her parents

Last night, Randy & I were trying to catch up on some work stuff before the kid's bedtime routine (which meant we were both at our computers in the office). Morgan walked in (at least twice) and said "Daddy I have to potty". He finally said, "Honey, not tonight".

Now, keep in mind, usually the potty routine consists of stripping the kid, sitting for 5 second, and repeating that about 30 times in 5 minutes. Rarely did any "potty" make it in the potty.

A few mintues later, I walk into the living room - Morgan is sitting on her potty, pants around her ankles, and diaper flung onto the nearby couch. So, I sit down by her, and she stands up - SUCCESS!

Maybe she just doesn't like having someone watch her when she goes to the bathroom...

Too Many

I've tried not to make this blog about Tanner's liver disease; I already have a whole website dedicated to that. I've tried to maintain the focus of this site on my children, the funny & cute things they do, motherhood and all it's joys, and my own personal feelings. But, the reality of it is that his liver disease is a part of who I am now.

When Tanner was first diagnosed with Biliary Atresia (BA), I found a group of online people who were going through the same thing. After all, BA is rare and only effects about 1 in 16,000 children. It was so comforting to find a group of people who had to deal with the same things we do - and to look towards the future for Tanner. This is where I even met Lisa & Laurie that I met up with in Florida this past August.

But with all the benefits of the online support group, there is a price. That price is becoming attached to these children. Attached to children with a potentially fatal liver disease - kids who have to undergo big surgeries as infants and possibly even liver transplants just to survive.

But you see, sometimes, that liver doesn't come in time. And, it hasn't come in time three times in the last two months. We've lost little Rani in Australia, Dillon in Chicago, and last night we lost Jackson in New York. It is difficult to explain the sorrow I have felt for these parents and these children. It is difficult to imagine that in the last two years since I've been online with this group, we've also lost Jayli, Ava, Haley, Romina, Carter, and Gracie. And, those are only a few of the ones that I recall tonight.

Jackson was only 6 months old when he also became very sick and desperately needed his transplant. His mother gave Jackson a second chance at life by giving him a piece of her liver. But, he developed post-transplant complications including a fungal infection. He needed a second liver. He was Status 1A on the transplant list - meaning he had top priority on any available liver - and he waited there for 40 days before he passed away last night.

Tanner waited for 21 days on the National Transplant list. He was top in the region for a liver based on his medical condition, and no offers came. We were also fortunate to be at a center that believes in living donors, and Tanner received 24% of his grandmother's liver before he became too sick to benefit from it. The exceptional skill of the surgeon is a testament to the fact that Tanner didn't have complications post-transplant. We are, actually, one of the "lucky ones".

The future holds so many promises. New medications for post-transplant children - and possibily even the ability to grow a human liver from cord blood. What a miracle that would be. But, the problem is that children, babies are dying. And, they are dying today.

What can you do to help? I encourage you to be an Organ Donor. Make sure it's marked on your driver's license, register online, and most importantly - tell your family. It may seem strange, but in the event that something would ever happen that would make you an eligible donor, many states still allow the family to decide whether or not to donate a loved ones organs. Even if that person has indicated that they wanted to make that gift, it is the family's choice.

There are many misconceptions about organ donation - many of them brought to us by our media. If you have questions regarding organ donation, please go here.

In early September, a little girl by the name of Jada Rose received a liver transplant in Utah. She received a deceased donor transplant, but prior to that, her grandmother and namesake had tried to donate to her. The center had told her that she was too old and couldn't donate - that lady made sure everyone in her family knew she wanted to be an organ donor. Last week (less than 2 months after her granddaughter's transplant), she fell down the stairs and suffered irreversible brain injury. Her organs were donated - and in a strange twist of fate, the liver went to Jada Rose's pediatirican's secretary's husband (ok - I know, it's a bit tough to follow there). This woman had prayed for Jada - even while her own husband was on the liver transplant waiting list. Letting your loved ones know your wishes makes a difference.

To Rani, Dillon, and Jackson: While your time here on earth was short, you touched many lives. May you be at peace and healthy. Your memory will live on in our hearts.

To their families: I am so sorry for your loss. Please know that your little ones will not be forgotten and that you are in our prayers.

Stock Alert

Ok - I'm just going to give you all a hot stock tip now - buy some stock in M&Ms, because we're strating to go through them like water.

Not to be outdone, Morgan went potty at school today, too. (And she didn't miss.)

Pass the M&Ms

I got to school today & found this note in Tanner's cubbie:



The "he kind of missed" means that while he was standing there peeing, most of it actually hit the wall behind the toilet. But, he did tell them that he had to potty, and wait until his diaper was off. So, it counts, right?

And, I'm not above bribing my children, so when we got home, he got his reward:



We'll see if this lasts, but here's my dilemma. Tanner has no behind - so, his entire winter wardrobe is basically one piece longalls or overalls with shirts. Not really potty-training material. I was convinced he wouldn't attempt this until spring, and that this would be safe duds for winter. So, now I have to decide if I should re-outfit the kid for winter.

My new favorite number & other toddlerisms

Tanner & Morgan have been cracking us up this weekend. Recorded here for prosperity's sake:

My new favorite number:

One, two, three, four, five, six, seven, eight, nine, ten, eleven, twelve, fourteen, ELEVENTEEN

Snipe Hunting

This only goes to show how much Tanner & Morgan will resent their father in later years. Randy has convinced Morgan that this one ugly little animal she has, is a snipe. So, she'll continually come up to us and ask "where's my snipe?"

Never wanting to see someone down

Tanner is our sensitive child, and he never likes to see anyone sad or mad. So, this is his latest cureall.

He comes running at you, and pinches you three or four times, screaming "tickle, tickle, tickle, tickle"

Shhh

The time change is a bit confusing. Tonight, Morgan came up to us and said "shhh.....it's bedtime outside"

A Helping of Reality

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. We got up yesterday, scrambled an egg, and then took Tanner in for the test. They started an IV (after two sticks) - and then we slowly started to feed him the egg. 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. At the 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 him until we could get to the doctor.

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.