Tuesday, December 30, 2008

The Weigh In

So Eden had her weigh in yesterday, and thank goodness she has gained some weight. So no feeding tube. Yeah! We did increase the concentration of her formula because she is still under weight. But she is growing some. I just got a call from the nurse who told me her zinc levels are low which could be the cause for her decreased appetite. Their suggestion for this is Cold EZ. Hopefully it won't make her throw up. She has been doing enough of that lately with her other medicine.

The nurse also told me that her total bili is 1.o. That is in the normal range. Woo hoo! Time for some happy dancing. Also some more good news is that she finally let me feed her with a spoon yesterday and I think she actually liked it. That will help with the weight gain too.

And one more thing. Her first tooth broke through on Sunday. This was a huge surprise to me since Seth and Ethan didn't get any until a week before there first birthday. If I can get a picture of it I will post it.

Thanks again for all of your prayers and support. I know that many prayers have been answered on Eden's behalf in the past year and pray that this next year will offer more of the same.

Thursday, December 25, 2008

Merry Christmas

Send your own ElfYourself eCards

Sunday, December 21, 2008

Johnson Family Christmas Party


Me and Eden getting ready for dinner.


Doug with a new game for the Wii.


Look at the sweater I got you mom.


Grandma helping Eden open her present.


What did you get Grandpa?


Uncle Jason and Eden.


Yummy paper!


Aunt Carrie and Ethan.


Seth saying give me the presents.

There are no pictures of Uncle Jeffy because he was the one behind the camera. Thanks for taking all the cute pictures.

Tuesday, December 16, 2008

Bring On The Calories!


So it has been a while since I've blogged and I have tons of pictures to post, but that will have to wait until after I get my house cleaned. I do want to take a minute to post the latest Eden update after her check up yesterday. She was a trooper. She had to fast for an ultrasound. Which did not make her very happy. (Fasting nor the ultrasound.) Once she got used to it the ultrasound went well, and everything looked good. She had good blood flow, and no portal hypertension. Woo hoo!

Her check up with the Dr. went well and her labs look pretty good. Her total bili was 1.6. (That's almost to the high end of normal. :) Her albumin (a protein produced by the liver) was up to 3.3. Low albumin can contribute to ascites. BTW her ultrasound showed no excess fluid in her belly. Yay for diuretics and answered prayers.

The only down side to our trip yesterday, other than having to get poked twice for labs, was the issue of Eden's growth. Her weight is off the charts and not in a good way. Twelve somthing pounds just doesn't cut at seven months old. I have been worried about her eating habits for some time. She won't eat baby food and will only nurse for 5-7 minutes at a time. So after talking with a nutritionist we have a plan. She is now on a medication to help stimulate her appetite, plus we are now bottle feeding her so she can get extra calories. And as for solids the nutritionist recommended cheese puffs, sugar, butter, cheese, etc. The more calories the better. She has two weeks to gain weight or its feeding tube time, and we don't want that. But I'll do whatever it takes. Dr. Book said she is still hopefull this liver will work for her for many years to come, but she needs to get better nutrition right now in order for it to heal.

So when you see me feed my baby junk food. Don't worry. It's just what the Dr ordered.

Monday, November 24, 2008

and the dish ran away with the spoon.....

So lately we've been going through a lot of spoons. So I thought. It seemed like I would just get the dishes done and we'd be out of spoons half an hour later. Well today while doing the dishes I did a little count and came up with eight little spoons and eleven big spoons. I should have 12 of each. Where are they going? You ask. I have my suspicions that two little boys are behind this one, and I fear that a spoon or five, as the case may be, has made its way into the trash can with their yogurt cups.

Thursday, November 20, 2008

You leave mom


So on Monday I dropped the boys to aunt Carrie's house while I took Eden to the Dr. Well no sooner then I got Seth out of the car and he tells me, "leave mom." I guess I am no longer needed. They are growing up and becoming so independent. That's what we want to happen right? I'm not so sure I am ready for it though.

Tuesday, November 18, 2008

More good news

So I took Eden back up to Primary Children's on Monday to check up on her acites. The fluid is going down with the help of diuretics. Her bilirubin is now at 2.0, ALT 61, AST 119, and GGT 158. Her albumin is still low and clotting time prolonged but everything else has made huge leaps in the right direction. Yes she will still need a liver transplant someday, but she should have time to get bigger before that day comes. Thank you for all of your prayers. I know that they have been heard and answered.

Tuesday, November 11, 2008

Six Months Already

So I took Eden for her six month check today. I can't believe she is already six months old. Wow!!! Time flies. She is small but still on the growth chart. Woo hoo! She is steadily growing. Her latest trick is sitting up all by herself. If you have any tips for getting her to eat baby food let me know. She loves her medicine, but try to give her something good and she spits it out. Those taste buds of hers must be tainted. :)

Thursday, November 6, 2008

Update on Eden


Ok so I just get done telling you that Eden is doing well and then something new comes up. Monday I was tapping her herniated belly button and thought I heard some fluid swishing around in there. So I put my ear on her tummy and gave it a little tap, and to my dismay there was the unmistakable gurgle of fluid in her tummy. I have been suspicious that something might be going on for a few weeks now because she has been breathing quite heavily and her belly has been looking bigger than it should. That gurgle just confirmed my fears. So yesterday I made the long trip up to Primary Children's in a snowstorm to have them confirm what I already knew. She has acites, just one of the nasty complications of liver disease. It is caused by poor blood flow through her liver, which causes blood to back up into her spleen and fluid to build up in her belly. So although her surgery back in July was succesful in establishing some bile flow from her liver, she is still developing scar tissue in her liver. So for now we will just keep playing the waiting game to see how long her little liver will hold out. Her Dr has prescribed some diuretics which should help her drain off the excess fluid and give her some relief so she can breathe and eat better. This is only a temporary fix, but hopefully it will be a long temporary fix.

On a happier note many of her labs are looking better. Her bilirubin is down to 2.7!!!!!!! That is the lowest it has ever been and about half of what it was a month ago. Her ALT, which is a measure of her liver enzymes, was 72. Almost in the normal range (5-45). Her AST was 133. That's half of what it was a month ago and also moving in the right direction. Her GGT, which measures the inflamation of her liver and function of her bile ducts, was 207. 0-71 is normal for a GGT, but considering it was 601 a month ago that is a huge improvement. Her albumin and clotting time weren't as good, hence the acites, but everthing else looked good. Now to just get over this current hurdle and keep her growing.

She was such a good girl yesterday. Despite all the prodding and poking she had a smile for all the nurses and Dr's who came to see her. She is a cutie!

Tuesday, November 4, 2008

Donate Life

You may have noticed a new icon I have on the right. It is a link to sign up to become an organ donor. I signed up to be an organ donor a few years back not realizing that it would ever be such a personal matter. I just thought if something ever happened to me why not. Now I realize how important this decision is. There are so many people; children, mothers, fathers, brothers, and sisters, waiting for a second chance at life. God forbid anything should ever happen to you or a loved one, but please take organ donation into serious consideration and let your loved ones know how you feel about it.

Monday, November 3, 2008

Updates

So its been a while since I've done any updates on the boys and Eden. Doug has been great to post pictures though.

So I'll start with the boys. They are now officially potty trained. Woo hoo!!!!! It took many months and help from Grandma Lai but I think they've finally got it. The other day I saw Seth run to the bathroom while yelling, "I've gotta go poop on the potty before I have an accident."
Other than potty training we also made a trip to the allergist last Wednesday to get a note signed by their Dr so they can have Epi-Pens at preshool. I had them re-tested and no surprise they are still allergic to peanuts and now tree nuts are off-limits too. Also Seth is apparently allergic to wheat and Ethan is allergic to eggs. Both of which they eat regularly. So as long as they don't seem to bother them I will keep feeding them to them. Also, I found out that I should have been jabbing them with an Epi-Pen every time they have had an allergic reaction. I thought I only needed to if he had trouble breathing. I really don't want to do that. Luckily Ethan hasn't had any reactions In almost a year and Seth never really has.

On to Eden. We still have one more month before I take her back up to Primary Children's. It will have been two whole months by then! I do take her to the pediatrician next Tuesday for he six month check up. I'll let you know how that goes. As for her liver, I believe she is doing well. Her jaundice doesn't seem too bad, but her eyes are still yellowish. Though it fluctuates (we just had a few days of not so grea tstool), her stool has been mustardy yellow. So I hope her jaundice will keep going down. So although she does have liver damage and an enlarged slpeen, I am hopeful she will make it into early childhood before she needs a liver transplant. Although, I constantly worry about other possible complications (acites, cholangitis, varices) I am enjoying the normalcy of life. She is starting to sit up on her own and has disovered the wonderful crinckeling effects of paper. Now if I can just get her to sleep a few more hours at night.

Sorry for the ramblings. Its been a while since I've gotten a full nights sleep and I'm tired.

Saturday, November 1, 2008

Halloween 2008



Wednesday, October 29, 2008

Carving Pumpkins



Tuesday, October 21, 2008

Crazy Hair Day

It was crazy hair day at school today, cause doing drugs is crazy. So I pulled out my wigs I have at school, and made the boys go to class. Who knows if they kept them on.

Sunday, October 19, 2008

Family Pictures

We took some more family pictures this past Thursday. They included all of my family. They turned out cute even though Ethan wasn't feeling good and Seth was pulling funny faces. Here is a link to the pictures if you would like to take a look.
http://picasaweb.google.com/elizabethjenson/EricaOct08?authkey=6n638b0xjYs

Saturday, October 18, 2008

Halloween Decorations

Doug and the boys had fun decorating for Halloween this past week.




Our little ghost family. Ethan says he is the one in front with the big head.


Seth and Ethan picked out the decorations for their pumpkins themselves. Aren't they cute?

Boys

Seth. What a handsome boy?


Why the band aid on his nose you ask? Well Ethan was playing in the window behind our couch and leaned a little to hard against the screen and fell out. Thankfully we have covers over our basement window wells so other than a bloody nose he was fine, but he wanted a band aid to make it all better.

Eden

Isn't she the cutest little baby you ever saw? I think so.

Here is a look at Eden's scar (and her herniated belly button). It is huge, but healing up nicely.

Wights

Our friends the Wights came to visit us from Idaho last weekend. Having five kids aged four and under in one house was a little crazy, but lots of fun. The boys look forward to seeing RJ whenever we go up to Idaho and when they come to visit us. We will miss them when they move.

Monday, October 6, 2008

Good Report From the Dr.



So today Eden had a checkup with her liver Dr up at Primary Childrens, and the good news is she is doing well enough that we don't have to go back for two whole months. Her jaundice hasn't gotten any worse, she is still growing and developing well (13 lbs now), and she is getting some bile flow from her liver. In fact for the past week she has been making mustard yellow poop. I don't know what normal baby poop looks like any more, but mustard yellow is better than pasty white. She still has an enlarged liver and spleen and has some fluid build up in her belly as a result of the damage done to her liver, but Dr. Book said that she should make it into early childhood before she needs a liver transplant. Which means she will be able to grow and get stronger so that her body can tolerate the transplant better when the time comes. While we still have a long way to go with Eden, I am grateful she is doing as well as she is. So many little babies with her condition aren't. Dr. Book was telling me about another biliary atresia baby she also saw today who went undiagnosed and never had the Kasai procedure done. I guess he was so jaundiced he looked green. I know that there must be opposition in all things and that in order to understand the good in life we must also experience trials, but it is still so hard to see sweet innocent little babies go through so much. I could choose to be bitter and blame God for not making my child whole and perfect but honestly I don't feel that way. I am grateful for my little girl and the lessons she and her brothers will teach me. Through this experience I will learn to be a better person and more compassionate to those around me who are suffering. Thanks to all of you who have offered prayers on Eden's behalf. I know without a doubt they have been heard and answered. We still have a long way to go so keep praying for her and the many others who are struggling with this.

Thursday, October 2, 2008

This is my life

A friend emailed this to me and well it just hit a little to close to home. When everyone else is crying, there is not much else for me to do but join in, and daddy can't make it home soon enough. Though I would much rather have my three little sweeties crying and fighting than not have them at all.

At the Circus


So here are a few pics from our trip to the circus. The boys had a great time and I think Eden even enjoyed it before she ate and fell asleep.


Seth loved the motorcycles. He didn't want to use the restroom at intermission because he was afraid he would miss more motorcycles.

Mom and Seth

Dad and Ethan

Wednesday, September 24, 2008

BOO!!!

So Seth has developed this habit of sneaking into a room and yelling boo. Usually I think it is pretty cute and it puts a smile on my face. However when he and his brother came waltzing into our room yelling boo at 5:22 this morning (yes the first thing I did when I was rudely awakened was look to see what time it was) all cuteness went out the window. Doug had taken the door knob cover off of their door a few days ago. Needless to say, the doorknob cover was quickly replaced and two little boys were put back in bed. They are lucky they didn't wake up Eden though they came pretty close.

Crazy Hair


Eden's hair is getting longer and can get out of control at times. I think it quite cute though.

For those of you wondering how Eden is doing, not much has changed. She is holding steady. She did have some nice mustardy yellow poops the last few days which got me quite excited. I am thankful for good colored poop. We go back to see Dr. Book in a week and a half. I'll let you know then how things are going.

Meet Geronimo Silton



Before preschool on Tuesday the boys went down with Doug to have a doughnut and listen to a story Doug was reading to the kids at school. The highlight was when they got to "meet" the main character in person.

Tuesday, September 23, 2008

How do you like the new look?

So I finally figured out how to do one of those cute backgrounds I've been seeing on everyone's blogs lately. It's pretty easy to do. I don't know why I didn't figure it out sooner. Let me know what you think. I tried to find on that wasn't too girly since Doug posts just as often as I do.

Sunday, September 21, 2008

Never knew the good samaritan was a cowboy did you?

So on the way home from church today Ethan started telling me about how "the cowboy stopped to give the other cowboy water." It took me a minute to realize he was talking about the story of the good Samaritan. I guess it doesn't matter whether it was a Samaritan or a cowboy as long as he learned to help others.

I am married to a domestic god

Who would have know four and a half years ago that I married such a domesticated man. Over the past few months he has canned chicken, meatballs, peach jam, salsa, and peaches. To top it all off he makes home made bread too. What a man!
If only he would clean bathrooms and dust, then I would really have it made. I can't complain though. That peach jam tastes pretty good and he doesn't even like peach jam. Now that is love. :)
Here is a picture of him in action.

Saturday, September 13, 2008

We're going to the Circus!!!

"Over the Top" Circus GrandPrize Winner
Congrats to Doug Lai of Spanish Fork. He and his twin three year old boys have won the "Over the Top" Grandprize, including front row tickets to the Ringling Brothers and Barnum and Bailiey's "Over the Top" Circus, September 24th-28th at Energy Solutions Arena, dinner before the show, a circus prize pack and more!

They had asked for funny kid stories and I told them one about a coworker. She had met a former student while at the store who asked if she was married. The teacher said no not yet. The girl suggested she talk to her mom because she was a hooker - you know she hooks people up. Needless to say there have been many laughs over this joke.

Wednesday, September 10, 2008

Sunbutter, Jelly and Cheese Sandwiches

So I asked the boys what they wanted for lunch and Seth told me he wanted a sunbutter (like peanut butter but made with sunflower seeds) and jelly sandwich with cheese. So that is what I made them, and they liked it. Which really shouldn't surprise me considering they dip their bananas in ketchup. I don't see food critic in their future, and, if they do ever become one, I wouldn't trust their advice.

Monday, September 8, 2008

Update on Eden

So we went to see Dr Book today, and where do I begin. I won't know her lab results until tomorrow, but the fact that although her poop has color it is still pale, her jaundice hasn't gone away, her liver is firm (not good) and her spleen is enlarged things are not looking good. The Dr said that her surgery seems to have had an intermediary effect. That is, she has gotten some bile flow, but not enough to keep her liver healthy. So she will definitely need a liver transplant. It could be a year from now, two years, or maybe, if we are lucky, even five years. We will watch her closely over the next few months to gauge better when transplant will need to take place.
On a good note Eden has gained another pound. Which is great because many liver babies have difficulty gaining weight. Also, she will get her PICC line out on Wednesday and taken off a few of her meds. Which will be a nice break. She is still doing well despite everything and is a very happy content baby.
Thank you for your continued prayers and support.

Saturday, September 6, 2008

Rolling Over





Friday, September 5, 2008

Keep on Rolling

So yesterday I was giving Eden her sponge bath in her crib. (No tub baths until the PICC line is out.) I turned around to get something and when I looked back she was on her belly. She has been trying to roll over for a few weeks now and finally did it! I tried to get her to do it for Doug, but she just won't perform on demand.
I can't believe she will be four months old tomorrow. It has been a crazy four months. As far as her liver goes, she had a couple of days of white poop. Ugh!!! So far today it looks like she is turning that back around. I hope so. We go back to Dr. Book on Monday. I'll let you all know how it turns out.

Thursday, September 4, 2008

Preschool

I took the boys to school with me today. They will go to Preschool on Tuesdays and Thursdays. Hopefully this will allow Erica to have some sanity in her life.

22 Pounds

Well I (Doug) have lost 22 lbs. In July I started going to Gold's Gym and working with a personal trainer (Michael Banks). Started watching what I am eating more and not eating after 8PM. Also drinking a gallon of water everyday. I went and bought new pants for my birthday and was happier than a little school girl when I fit in some 34". I bought mostly 36" waist but I might need to go shopping again. I feel great.

Wednesday, September 3, 2008

Frogs


We went to Payson Onion Days, and while there we picked up two frogs from a booth for the boys. Hopefully they won't leave the world like the ones I bought for Erica in College. Her roommate and her were trying to save money by not using the air-conditioner and they fried.

We also went to see the play Beauty and the Beast which the boys really enjoyed.

Sunday, August 24, 2008

Flooded Bathrooms

So I was sitting downstairs after church holding Eden and talking with Ethan. I hadn't heard anything from Seth who was upstairs for a while so I asked Ethan what Seth was doing. His answer was simply he's poopy. (Sorry about all the poopy talk lately on the blog :) So I went upstairs to check on him and not only was he poopy, but somehow he managed to plug the toilet and flood the bathroom.
It doesn't end there. Later I heard that the bathroom in the nursery at church had flooded. Which got me wondering so Doug called their teacher. She confirmed my fears that it was probably them. Apparently they had had some problems in the bathroom last Sunday too.
I don't know what to do with them. We will have a serious talk about toilet paper usage though.