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