NEGATIVE!!!

Samuel's liver biopsy came back Friday and was negative for primary 1 and primary 11 hyperoxaluria. Mayo and Emory doctors are now trying to figure out if he falls into the 3rd category of hyperoxaluria (type 3) which is non 1 and non 11 hyperoxaluria. Type three is having the disease but the cause would not be from wacky liver enzymes. The cause is actually unknown at this point. (which to me is a little scary) So we are very very grateful for the negative on the liver biopsy. At this point, we are ruling things so we can try to figure out the high oxalate, which is the problem. Samuel continues to feel good. Although I want the high oxalate to disappear, I am so thankful that he is super happy and pain free. We will continue to work with Mayo and Emory to figure this thing out. Thank you for your prayers and concern. It was a long month and a half wait.

Sam's Biopsy

Samuel had his liver biopsy this morning. Thanks for all the family and friends who have called to check on him. The biopsy went well. Three different pieces were taken from his liver and will be flown to Mayo clinic on Monday. Mayo will package it for London and within a few weeks we will know for sure whether his high oxalate levels are coming from a defective liver enzyme. Right now Sam is watching Veggie Tales and is feeling well. We have had some issues with getting blood from him. He just freaks out. He actually just pulled out the last needle when they were trying to get blood. He is ready to have his IV out. I think once we can get that done and are done with needles, he will feel so much better.

I have so much to say about our experience here.....all wonderful. God is so good and even in the mist of a very difficult time proves Himself faithful over and over again. We are so blessed. At a preop appointment yesterday, a little boy just comes and sits in my lap. He was cute as pie and for what ever reason felt comfortable enough with me just to come sit in my lap. He was interested in Samuel (he was playing his gameboy). I asked him his name and how old he was. When he looked up to tell me his name is Nathan and that he was 3 about to be 4, I noticed the whites of his eyes were yellow....bright yellow. Samuel's doctor is a transplant doctor and we are on the transplant wing. Sweet Nathan is waiting on a liver. And if he doesn't get one in a timely manner, he will die. As horrible as our situation is, there is always someone out there with harder circumstances. We take our healthy children for granted. We complain about stupid things that in the grand scheme of life simply don't matter. We go through life only thinking about ourselves and never reaching out or putting others needs before our on. ( so self absorbed) This trip has taught me so much about God's faithfulness and has made me long for Heaven. We live in such a fallen world of sin, sickness, and disease. I have seen that first hand over the past few days. I hate that Samuel has to go through this but I do know that somehow some way God's name will be glorified through our situation.

We are due to be released sometime tomorrow, and we will be so so happy to be home. Samuel said a few minutes ago that he just wanted to be home and get some water. Me too Sam, me too.

What have we been up to?

A whole lot of school!!!!!

In the first civilizations, they would write on clay tablets. So one day the boys rolled out clay and wrote on it with a wooden stick. This was a huge hit. But very messy.

Boys working on geometry project!!

I love this picture because they are all concentrating so hard.

Samuel is so good at puzzles and manipulating shapes. He really enjoyed this project because he was good at it.

Painting a fish habitat.

Making Tumbleweed Stew.

We studied ancient Egypt and talked about pyramids and how they buried the dead. So everyone got to be a mummy.

The first two weeks in science we studied what dinosaurs had to do with the

Bible. So one day we made dinosaurs.

Saturday field trip to the McWain Center.

Touching sharks and rays.

Hamilton working on Spelling. The beauty of homeschooling is you can school in your underwear with your shirt off. That is how Samuel prefers it.

Samuel and Jack's table in the school room.

We studied space for a few weeks too. They made space packs and everyday had a mission and training to do. They had obstacle courses to run through in the back yard. They loved it. It exhausted me.

We have been very busy since the start of school. I wanted to kick off the school year with a wonderful schedule that would work for for everyone. My boys are so routine driven. I knew if we could start a good school routine then we would be GREAT (school speaking). I have succeeded. We start by 9 every morning. Which gives the boys time to do their thing and me time to pick up the kitchen and start some laundry. We all start the morning with a morning devotion for boys. It is a sweet time. Then we start language for Hamilton and letters and phonics for the little boys. They have an activity every morning to work on. It is always something fun.....cut and paste or scavenger hunt or something like that. They enjoy it and Jack especially looks forward to it. After the little boys leave, Hamilton and I work on reading, spelling, and math. We usually break around 11:30 and I begin working on lunch. When the little boys are resting in the afternoon, Hamilton and I finish up with Science and History. And Daddy ends the day with a chapter out of a book chosen by our curriculum. It is a very busy day to say the least. I am learning so much too. In History we are studying ancient empire's. I love it. I am learning so much of this stuff for the first time. Here are a few pictures from the first 6 weeks of school. Let me just say homeschooling is awesome and Hamilton is learning things he would never learn in public school. And he is still under Mama' wings. I love it.

Some things in life are just worth fighting for!

Samuel's Biopsy Date

September 25th is the date set for Samuel's liver biopsy. Just five days before his 5th birthday. We will go over Thursday of that week to meet with the doctor performing the surgery and the anesthesiologist. Friday morning they will do the biopsy. And hopefully if everything goes according to schedule we will be able to leave Saturday.

Instead of going in once with a large needle to retrieve a piece of the liver (which is what I thought), they will make a small incision between his ribs and go in three times though that site. Mayo needs a larger amount of liver than what is normally taken during a regular biopsy. (Not so routine is it Kris?)

The stress of this, along with other issues going on with Sameul, has our home in "stress" mode right now. Please pray for us.

Good News

Just heard from our Mayo Clinic doctor and everyone elses urine catch looks fine. Everyone is within normal oxalate range except sweet Sam. Still waiting to hear a date on the liver biopsy.

Here We Go Again!!!!

Samuel's life seems to be a roller coaster. We are always up, down, or somewhere in between. While I was in Atlanta with Jennifer, Kris got a call from our doctor at Emory. Samuel's latest urine catch was in and his oxalate levels are very very high again. They are double what they were in Feb. of this year. I am so glad Kris was here and was able to intercept that call for me.

Our Doctor at Emory and our Mayo clinic doctors in Minnesota believe Samuel now needs to have a liver biopsy. We have always known this was a possibility. It is the only way to diagnosis Primary 1 or 2 hyperoxaluria 100%. Samuel has already done genetic testing with Mayo, and they did not find any mutations that are normally associated with primary 1 or 2 hyperoxaluria. But the genetic testing is not 100% at the point. So currently Emory is setting up the biopsy and will let us know the date as soon as they know. The biopsy will be sent to London (only place in the world that diagnosis this through liver biopsy) and the liver will be looked at for various enzymes that would affect oxlate levels.

Hyperoxaluria is so complicated. There are basically three types of hyperoxaluria right now. The first two are Primary Hyperoxaluria 1 and 2. Both of those involve the liver enzymes not functioning correctly causing too much oxalate to pass through the kidney's. The third group is a big question mark. This is where Samuel currently falls. It consist of people with high oxalate levels but the problem doesn't seem to be from the liver. Samuel is also throwing doctors for a loop because his levels seems to be very inconsistent. He always has high oxalate but sometime they are ALOT higher than other times.

I am so thankful Samuel is not in pain from this on a daily basis. And I am so thankful he is not producing stone after stone. But the reality of this horrible disease is that when oxalate passes through your kidneys it causes damage whether it is in the form of a stone or not. And over time kidney function is compromised.

The road ahead for Sam literally makes me sick to my stomach. We are still awaiting a family urine catch from Mayo. Since this is a genetic disease, everyone else is being looked at. I am very anxious to get that back. Please pray for Samuel. Pray wisdom for the doctors and for Kris and I as we continue to make decisions regarding Samuel's health. I will let everyone know a date for the biopsy when we know one.

For more information on hyperoxaluria, check out my link to the hyperoxaluria foundation at the top right of my blog.

Ellie Grace

Ellie Grace is here and absolutely beautiful. Jennifer did an amazing job and deserves woman of the year. After going from 4 to 10 cm in about 10 minutes, no time for epidural, and Ellie Grace came so quick nurse (and me of coarse) delivered her. It is a crazy crazy story. But mom and baby are doing great and are both home.

New Family PIctures

We had these taken at the lake a few weeks ago. I will certainly cherish these for a long long time!!!!