Cookies!

I am such a lucky, lucky Grandma! I have so many good helpers. Alice always wants to make rolled cookies, so since I had so many helpers we got out the aprons and the cookie cutters and made a whole bunch of cookies. We made hearts and stars and sharks mostly. After the cookies were all baked, Karen made some yummy frosting and I got out all of my beautiful sprinkles. The kids did such a good job decorating the cookies. We ate lots of cookies and Alice and Teddy took some home to share with their friends. Thanks for being such good helpers, kids. I love you!!!!!!

Sleepover

Aren't these the cutest kids ever? The cousins had a very fun sleepover. And if you look carefully in the back, you can see Lon and Ben doing dishes. It seems like they were always cooking or cleaning. I sure appreciate the men in my life!

Thomas

Karen wanted to come help me after I had surgery. We know how that is going. Instead she came to visit. She told us we needed to bring both cars because she had lots of luggage. So Grandpa and I went to the airport in two cars. We were looking for her and all of a sudden we saw Ben. He started walking to the car and Cameron and Jake popped out from behind him and shouted, "Surprise!!!!" What a great surprise! The whole family was there (along with four suitcases, three carseats, a stroller, and a very full backpack). We were so happy to see them.

One day they took a walk in the park near us and caught this snake! He is a very friendly snake. The boys had a very nice jar for his home. They gave him a snail to eat. They gave him some water. They even took him to their cousin Alice and Teddy's house to visit. The boys were very gentle when they held him.

We were sad when they had to leave. They packed everything up and Grandpa and I took them to the airport. It was sad to kiss everyone good-by.

When we got home Thomas looked very sad. He missed Cameron and Jake visiting him and bringing him food. We put his jar very carefully in the car and drove to where they caught him. Grandpa opened the lid and put the jar on the ground. Thomas looked around and finally left the jar. We think he had some snake brothers that he missed. He crawled away in the grass. Grandpa thought he saw Thomas look back at him and smile. I think Thomas enjoyed his adventures with Cameron and Jake, but was very happy to get back to his family.

Thanks Cameron and Jake for being such good snake catchers.

Living in Limbo

It has now been almost five weeks since I was listed for the liver transplant. This waiting is the pits! I was over due for all five of our children and that was nothing compared to this. Lon thinks it is like sitting on the edge of your chair--and his legs are cramping like crazy! We don't want to do too much grocery shopping because we'll be gone for at least a week. Eating has been like camping and food storage put together. Our bags are packed and ready to go. And here we sit. And sit. And sit.
We are quick to acknowledge that we are on the Lord's timetable, yet it really is hard to wait around. I got my blood work done last week. My kidney function is holding steady and my potassium level was up a little. My kidney doctor tweaked my meds and hopefully the potassium will stay at a good level. And the tweaking didn't include any brown liquid, thank goodness!
The plan is for Lon to stay with me in the hospital. They have a reclino-chair-bed-combo (probably not very comfortable to sleep or sit in) that he will be able to sort of sleep in. The meds they give me after surgery are apt to make me even crazier than normal, and he has promised to stay and comfort and regulate me. I appreciate that so much. When he was in the hospital with his broken leg, I stayed with him all day, but didn't stay at the hospital. With the meds I will be getting, I think it will be prudent to have my best buddy nearby!

And some new amyloidosis information...

So far there have been two small studies about this type of amyloidosis. They are both from the UK. The first involved 71 patients. It described this amyloidosis as mainly involving the kidneys, with damage to the spleen and liver after a long time. The newer study is also from the UK. It was published in April, 2010. It studies 22 people with this fibrinogen amyloidosis. It seems that this is thought a kidney disease because that is where it is "easier" to diagnose it. Apparently it involves more organs. Only five people had any family history of kidney disease. Twenty of them had significant heart issues. Fifteen had issues with GI autonomic neuropathy. Eight got liver-kidney transplants and during surgery three of those had spontaneous spleen ruptures. It seems that maybe this disease is a little more widespread, and perhaps people die of heart issues before the kidneys have any troubles. No one got only a liver, so I will still be the first to do that.
What does all this mean for me? Short answer, "Beats me!" Of course that is my snappy answer to all of my grandkids hard questions. Seriously, I emailed it to my doctors and have a copy ready to take when I go to surgery. It's tough have a disease that was only identified in 1993, and at this point ANY information is very welcome. Bottom line, of course, keep praying.
I have had that echocardiogram and was told that my heart is grossly normal. And my treadmill stress test apparent didn't merit a second look when the surgeons reviewed it. Seriously--It's time to rock and roll!

Update

Not much going on. No word from UCSF. The Mayo Clinic in Florida called me ten days after they got my records. The had an appointment in eight days. Their evaluation takes two weeks, and possibly part of a third week. I have never been called, "Ma'am" so much, I found out that to get a kidney-liver it would take a year, and I would have to stay in that area the entire time. I didn't make an appointment and continue to wait here. Discouraging.