Sunday, December 27, 2009

Happy Anniversary!



Six years ago this past Sunday (yes I am a little late getting this posted) Douglas and I were married. So much has happened since that cold snowy day.


We spent our honeymoon in Hawaii.


We moved into our home.


We graduated from BYU and accepted teaching positions.

Found out we were expecting, and then
at 18 weeks along found out we were expecting not just one, but two baby boys.



Those little baby boys decided to come two months early and spent a month in the NICU, but were otherwise healthy.


Took two one year olds to Hong Kong via Chicago and London. What were we thinking?


Took two two year olds to Mexico.


Found out we were expecting a baby girl.


Doug graduated from SUU with his masters degree.


Our little princess was born three days later.


At two months old we found out our princess had a nasty liver disease called biliary atresia, and she underwent her first major surgery.



Which led to two more surgeries (hers and mine) including one liver transplant 16 months later.


Now that she is doing well we are looking forward to what the next six years will bring us.

Merry CHRISTmas!!!

For those of you who have been anxiously awaiting your Christmas letter from the Lai's I am sorry to tell you it won't be coming this year. I know your heartbroken, but life has been a bit busy lately. Although it has been a difficult year we have truly been blessed and enjoyed a wonderful Christmas all together with family and friends. The best Christmas gift of all was to see my three healthy kids especially Eden thoroughly enjoying themselves.

So here are some random pictures from our Christmas holiday. They are completely out of order, but I am no expert with this blogging thing so bear with me.

We snuck a picture of Santa as he was putting the presents under the tree.

Align Center
No my kids aren't spoiled.


Look Mom Santa (AKA Grandma and Pap Pap Lai) brought us a "lawnmower" for Christmas.


Loving my dolly.


Hamming it up for the camera.


At the Johnson family Christmas party checking out our cool new toys.


Playing with Matthews toys at Aunt Isabella's.


Trying out my rocking chair Papa Johnson made me.


Check out our matching pajamas.

Monday, December 21, 2009

Goodbye PICC Line!!!

Dear PICC Line,

Though you have proven yourself useful these past three and a half months with five days of IV antibiotics at home, almost two months of TPN (which worked wonders), coming in very useful during transplant, and saving me from dozens of pokes for lab draws we are happy to see you go. Now I have my arm back, and I am looking forward to a nice splash in the tub.

Sincerely,
Eden

Friday, December 18, 2009

the things they do that drive me crazy and make me smile after a while.

So even after several warnings that Santa is watching and a few "phone calls" to the North Pole the boys have still managed to do a few things to drive me crazy the past few days and earn themselves a place on top of the naughty list.

First last night I asked them to go upstairs and get their pajamas on. They were upstairs by themselves for about ten minutes while I was giving Eden her medicine and getting her ready for bed. I went upstairs to find them in the tub with water all over the floor and then Seth got in the tub with his shirt and undies on. I didn't get a picture of this one but just imagine water everywhere and soaking wet clothes.

Then this morning Ethan came downstairs with toothpaste plastered to his head and silly mommy that I am I washed it out. What does he decide to do? Go upstairs and rub more toothpaste in his hair.

Finally to top it all off the sweet dears found a couple markers that got left out this morning and decided to draw all over the back of a chair, on part of our couch and on the wall. They were washable markers at least. Last time they drew on the couch they chose a permanent marker. They were very eager to help clean up after I told them Santa was watching them and they even went down for a nap without any complaints. Hopefully they will make their way back onto the nice list before Christmas.

The things they do frustrate me at times and test my patience, but I have come to appreciate the fact that they are healthy and happy and able to get into trouble like this. Though sometimes I wish they would listen a little bit better. :)

Mug shot of culprit #1


Culprit #2 hiding behind said chair.

Just some of the damage done.


Mom's Crack Part Two

Well it should actually be part three. Take a look to your left at the "Sethanisms" if you haven't already and you will see why.

Anyway back to the post. When I went to pick the boys up from preschool the other day their teacher pulled me aside to tell me about some pictures they drew that day. Apparently they were practicing drawing people and one of them drew a picture of me and the other drew a picture of Eden, and in the middle of their bellies were some lines. They told their teachers that these were Mommy's and Eden's cracks. One of their pictures even had a little blob off to the side that he said was the yucky stuff that comes out of the crack. Yep that liver sure was yucky. I don't have the original pictures because they were drawn on a white board, but I did get Ethan to recreate it. There you have it play therapy at preschool.





Tuesday, December 15, 2009

Doing Great!

MY CRAZY BOYS

EDEN GETTING READY TO CLIMB BEHIND THE ENTERTAINMENT CENTER.

SITTING NEXT TO THE HEAT VENT SO HER HAIR IS BLOWING IN THE "WIND". LOVE THAT FACE.

Eden continues to amaze me with all of her new talents like walking and climbing everywhere including the kitchen table! Yesterday I took her back up to Primary Children's for another follow up appointment, and they are still pleased with how she is doing. We are having a little trouble keeping her Prograf (immunosupression) level stable, but other than that everything is looking good. Her liver is functioning well as is evidenced by all the rolls of chub she now has. Our biggest hurdle now is getting her to eat. We are making baby steps, but it is going to be a long process. She has learned that she gets her food through a tube and even hands me her tube on occasion when it is time to feed her. Good news though is that after next week's appointment we will be going to visits every two weeks. We love everyone up there but it will be nice to spend a little less time in the car and a lot more time enjoying our healthy little girl and her crazy but lovable brothers.

BTW - I am doing well to. :)

Wednesday, December 2, 2009

Walking

video

Monday, November 30, 2009

Before and After

I was going through some pictures on my camera and came across some from back in July. My skinny minny.


And here she is now. After two months of TPN and a healthy liver. My little butterball.





We met two of our little liver friends in clinic today. Like Eden they will be needing a liver transplant as well, and will hopefully be going the living donor route in a few months. I wish them the best of luck and can't wait to see there "before and after" pics.

"Mom can I see your crack?"

After being discharged from the hospital a few weeks ago I had barely stepped through the door at home and Seth and Ethan started tugging on my shirt asking if they could see my "crack." I am not sure where they came up with that one. After that they asked to see my "crack" at least a few times a day for the next week.
So here is a picture of my "crack." Which I have been told is actually smaller than most living liver donor incisions. Typically they are just as large as the recipients.





Saturday, November 28, 2009

Giggles

Its amazing what a difference a healthy liver and a few weeks makes. Eden has always been a happy smiley little girl but we could never get her to make more than a little forced laugh. Well today Daddy was blowing raspberries on her belly and rubbing his whiskers on her and she got the uncontrollable your going to make me wet my diaper giggles. It was music to my ears. More than that she seems to be more alert and although she still won't eat anything she reaches out her hands for a taste of what everyone else is eating. I can't wait to see what else she amazes me with in the weeks to come.

(Since I still haven't figured out how to post video yet you will have to wait for Doug to post a video of the giggles, but I promise I will get it on here.)
video

Wednesday, November 25, 2009

Day 15

5:58 PM
We are Home !!!!!!!!!!!!!!!!!!!!!!!!




8:37AM
What we hope will be the last day of post from PCMC. Eden is up and about this morning, glad she has her favorite monkey back. Erica will be on her way up this morning, and then I guess we sit around until they say we can go home. Probably won't be until the afternoon since her morning labs, usually dont get back until 3Pm.

Tuesday, November 24, 2009

Day 14

4:37PM
Everything looks good for going home tomorrow, cross our finger, knock on wood, and all that good stuff. Everyone is happy with her progress - we attribute to all your prayers, and fasting. Today they took her off feeds for four hours and we tried giving her a bottle. She wasn't opposed to putting it in her mouth and chewing on it, but she didn't really eat any of it. Eden is munching on some Cheetos right now. Johnson's brought mommy up, and Aunt Carrie came too. She brought 2 more monkeys. I think Eden has a monkey for everyday of the week.

10:11AM
Well we are doing good this morning. Mommy is coming up for education today, she should be here soon. Eden had a bath this morning. One of the nurses brought in a toy so Eden is having fun. although her favorite monkey fell on the floor so, he had to go in the closet to till the next laundry day. Eden threw up for the first time in two week, didn't like the nystanton this morning. So we will see what her prograf level is this afternoon since that was one that came back up.
I have been keeping busy doing some shopping online.

Monday, November 23, 2009

Day 13

5:22PM
Drains are out!!!!!!!!!!!!!!!
One step closer to going home

10:38AM
Another good night, it was going to be bad cause they were going to have to try and flush Eden's PIC line every 30 minutes cause it was not drawing well. Luckily the nurse decided to find out when the cap was changed last, and it had been a while, so that took care of it, and it draws fine, so we could sleep.
Surgical called and said they would remove both drains today :) we just don't know when yet. They want two residents to do it so it can be done at the same time. But one was in surgery so hopefully soon. Just need to know a bit early so we can get Eden loaded up on morphine first.
Other than that not much going on today, Occupational therapy came by and worked with Eden trying to get her to stand up and move around. they are going to look for a walker so Eden can move around. Speech is supposed to come as well and work on eating with her. Doing laundry again so we have clean stuffed animals.

Sunday, November 22, 2009

Day 12

7:38PM
Had a good visit with mommy and Grandma Lai, Aunt Yvonne came up too. Boy was Eden happy. Watched TV and had dinner. Then she was pretty tired. So she is asleep already. Long day.

1:24PM
Well we definitely slept better last night. One crying spout but that I can deal with. Eden is sleeping once again. nothing on TV, so got a movie on, and have been catching up with friends and family on the phone. Erica is supposed to come up sometime. she is doing well, went Christmas shopping yesterday, so must be doing alright. Surgical is supposed to come up today and remove the drain on her right side. the nurse today figured out that the left side probably drains more because she is always facing that way. So maybe tonight turn her bed the other way and the left side will hardly drain and we can get it out. then we can get out of here.

Saturday, November 21, 2009

Day 11

2:39 PM
Nothing on TV. So listening to Pandora.

video

9:11AM
Well didn't sleep that well last night, neither did Eden. We have requested not to have last night nurse again. Seemed to just take too long, and kept waking us up every hour it seemed, then it would take a while before Eden would calm down again, repeat repeat repeat. So I just got up at 6:30 and Eden was about 7:30. Hopefully a bath in a bit will help her take a nap for a while.
talked to surgery when they stopped in this morning about getting drains out. They are still putting out some fluid. 20 and 50 from the other. He said they would like to take them out at the same time. So crossing fingers for today, but pretty sure by Monday.


Friday, November 20, 2009

Day 10

5:46 PM
Sorry for no update until now, have been a bit tired, and just never got around to it.
Eden continues to do well. They need to bring up her prograff level some, so there is no rejection. We were hoping that maybe one of her JP drains might come out, but it didn't. And nothing really happens on the weekend because most people are off. So hopefully Monday. Tuesdays we are supposed to have some education classes before discharge so hopefully by thanksgiving we will be home. That would make it the best thanksgiving ever. Eden has been climbing around in her crib. Didn't want to try her Macaroni and cheese though. She didn't mind the crackers, there are still crumbs in her bed. I have been busy working on a blog for Utah Liver Families. http://utahliverfamilies.blogspot.com/
Also today got sad news that a long time friend that served mission with dad and was our Branch President in Hong Kong died. Our thoughts and prayers are with William Hsu's family.

Thursday, November 19, 2009

Day 9

7:21 PM
Mommy came up to visit along with Grandma and Grandpa Johnson. Eden was eating it up. She was such a ham. Daddy was mean though and said 'bye bye' before mom left and Eden started getting all teary eyed. Occupational therapy brought a big red mat so Eden can get down. She also got a high chair too. mommy brought up some Mac and Cheese so we will try that tomorrow.



1:14PM


video

9:49AM
A better night only one crying spout at 2AM other than that pretty quiet. She has been happy all morning. Is is having fun right now sucking on Cheetos. The doctors said she can eat anything she is willing to try, so maybe a little applesauce later on. See how she does.

Wednesday, November 18, 2009

Day 8


I love to hear mommy and my brothers on the phone :)

Hello ?


I sleep in funny positions.

2:00PM
Eden is finally up, although it was a bit of a struggle she didn't want to get up yet. So got some water and gave her a bath. She is more active now. Some liver friends sent her a big bow so did her hair. She is too cute. Thanks Lizzie.



9:00AM
The Price is Right :)
Well glad that someone is still sleeping. We tried to go to bed around 9PM last night but it was more like midnight before some restless sleep. Eden had several crying spots and moving sleeping positions. So asked for some more pain med for her so she could sleep. She was up a bit at 4 when they did her vitals but now is sleeping peacefully. So I have been able to go eat and take a shower already without any crying.