Update Samuel

Just a quick update on Sam. As of yesterday, we have completed all of the lab work Mayo Clinic requested. One of the genetic blood test could take as long as 3 months to get the results. The other test on Sam, and brothers, should start coming in next week. It is wonderful working with the Mayo Clinic and knowing Samuel is getting the best care and attention.

Happy Birthday Hamilton!!!!

Today our first born turns SIX. We celebrated with Grandmama and Grandaddy over the weekend. But today we will skip school and meet Daddy for lunch. I am so proud of Hamilton. God, even at this tender age, is molding and shaping his life. He is so smart, responsible, determined, wise, etc. He is all of the qualities you would expect a first born male to have. Thank you God for entrusting Hamilton to us. He is such a good and perfect gift from You.

Life with Four Males!!!

I am totally out numbered!!!

Samuel Information

First of all, Kris wanted me to clarify Samuel's current day to day status. He thought that from reading the blog people might get the impression that Samuel is on deaths door or laid up in bed somewhere. That is very far from the truth. Samuel is just as active and happy go lucky as your normal 4 year old. The only difference you might notice about Samuel is he potty's frequently because we try hard to keep him very hydrated. This helps to keep his kidney's flushed. But other than that you would never know he had a health problem. There are people with hyperoxaluria that are not diagnosed until 10 years of age or later because other than the red flag of a kidney stone or complete kidney failure there are no alarming symptoms of this disease.



Now to update you on happenings since Friday. Friday afternoon I received a comment on my blog from a mother who lives in California. She has 4 children and 3 of them have been diagnosed with hyperoxaluria. One of her little boys has already received a kidney and liver transplant. She left me her number and said to call her if I wanted to talk. I immediately wanted to talk to her. So I called and we shared stories. She was so positive considering all that she and her family have been through. She gave me names of Doctors at the Mayo Clinic in Rochester, MN and told me to get in contact with them. Most doctors, even specialist, know little or nothing about hyperoxaluria. So for her to put me in contact with the Mayo Clinic where PH patients are diagnosed and treated was wonderful. Especially since I was very disappointed in the referral we got last week. I just really felt like we were referred to just another nephrologist who would be unable to quickly get us answers. ***Becky if you are reading.......thank you so much. You are a God send to our family.****
I left a message at Mayo clinic after hours Friday and by Monday morning someone was calling. I was able to get a ton of information on the disease. We faxed them Samuel's urine studies and a doctor there quickly reviewed them and said yes his levels of oxalate are high and for the first time he suggested a game plan. Samuel is going to have a DNA blood tests checking the AGXT (G170R) gene mutation for Primary Hyperoxaluria patients. This G170R mutation is found in about 30% of patients with PH type I. The CLINICAL test is done through Mayo Medical Lab and has a pretty fast turn around ( around 2 weeks). He will have blood drawn here and it will be sent to Mayo in Rochester. This test will be helpful in planning the Samuel's current treatment if he should have hyperoxaluria. This test is for the G170R mutation and will tell us if Samuel is pyridoxine (or vitamin B6) responsive. If this test is negative, we will need additional testing.

The doctor at Mayo also recommended after looking at Samuel's urine studies that the other two boys have a 24 hour urine collection study done also. If nothing comes back alarming, then we will leave them out of the picture for now. Thank goodness. The blood and the urine test have already been ordered and it is just a matter of collecting urine and blood samples and sending it back to Mayo. Our local doctors have nothing to do with this. Which for now is nice because things seem to be moving very very quickly right now. We will keep our appointment in Atlanta because we still need a fairly local Nephrologist to work with Mayo through all of this.

I know this is so overwhelming, but for the first time I have such a peace about it. (We have a plan and I am actually talking to people that know what we are dealing with.) For so long my conversation with God has been.... You can carry me through this but I will carry Samuel and worry about him. I am so the definition of a Mama Bear. But God is reminding me He loves and cares for Samuel so much more than I ever could. That is so mind boggling to me, but it is truth. My goal right now is to concentrate one day at a time, knowing I do not carry this burden alone.

Update on Sweet Sam!!

Sam just makes you laugh. He looks like a blonde monkey in the picture with no shirt on. I cannot believe I let his hair get that wild. He truly is one in a million.

This time last year we were entering into the hardest time of my life and I know Samuel's. Last November after over a year of crazy vomiting episodes from pain, doctor's found an 8mm kidney stone in Samuel. An 8mm stone is HUGE for an adult, so for my 3 year old to have one that large was very alarming. Anyway, after 2 surgeries and a week of passing the broken up stone, Samuel was finally stone free. We just had a ct scan two weeks ago and Samuel is still stone free after a year. Praise be to God.

For the past year we have done several test, most include blood and urine, to check Samuel's oxalate levels. As of the latest ones, his oxalate levels in his urine continue to be alarmingly high. Doctors are now looking into a rare genetic disease called Hyperoxaluria. Hyperoxaluria has many forms but the common factor in all of them is excessive excretion of oxalate in the urine. When excess oxalate combines with calcium in the kidneys, the combination results in a kidney stone. Children who suffer from this horrible disease suffer continuous stone formation, which ultimately leads to kidney failure. The disease is very very rare (one in a million rare) and most doctors know little or nothing about it. Therefore, our specialist at Children's Hospital is referring us to a pediatric Nephrologist in Atlanta to either confirm or reject this diagnosis. The referral went out today and we should have an appointment on the calendar within a week. There are so many what if's..... like what if my child has this horrible disease? What if he has to have a kidney/liver transplant? What if the stones come back and Samuel has to endure the pain of more kidney stones? What if Hamilton and Jack have this too? Why Samuel?

Ultimately I know God is in control. At times that brings me comfort and other times I wonder how this could possibly all sift through His hand. I will keep family updated. In the meantime, please pray for wisdom for the doctor that will see Samuel in the upcoming weeks. Pray for Samuel to have a spirit of calmness as he already freaks when a doctor approaches him. Pray for wisdom for Kris and I as we continue to make decisions regarding Samuel's health. God only knows how much I love my children. It is more than I ever thought humanly possible. My heart literally aches at times thinking of my sweet Samuel. I am so blessed to be the mother of these three amazing boys. GOD IS SO GOOD TO ME. And I am so grateful.

Headed to the Game!

Daddy and Hamilton on their way to the game today. Hamilton was so excited. It is so much fun the older the boys get being able to do different activities that we ALL enjoy. Daddy was thrilled about this Father / Son outing.

An Alabama Homecoming

After trick or treating we headed to campus for the homecoming pep rally and bond fire. Jack was a big hit dressed as little "Big Al". He had his picture taken with so many strangers. We began to feel like we were with a celebrity.

Homecoming pep rally and bond fire at the University.


Daddy and Big Al

The Family

Trick or Treat????

We had fun trick or treating in our neighborhood last night. We are all on candy overload. Jack now ask for just "one" more piece of candy about every five minutes. No more matching them and coordinating their costumes. They were all three VERY opinionated this year.

Trick or Treating on Sorority Row !!!!!

Last night we took the boys trick or treating on Sorority Row. They had a blast! Hamilton was an astronaut, Samuel was James the train, and Jack was "Big Al". I must say Jack took the prize for the best costume. The chicks loved him. He posed for more pictures and got more candy than the other two put together.

Yes, they even had a news crew interview them.

Jack getting his face painted with the Alabama A.

The chicks were interested in Jack, but he was interested in all the other kids costume. He soon caught on that they would give him candy and then it was a whole different story.

My little astronaut. Hamilton and I are so alike. I hate big crowds and tons of people. Kris says he will never take me to NYC. So when in got crowded and crazy, Hamilton was ready to call it quits.

Sam is so cool. One of the sorority girls was dressed as a cheerleader. Sam stared at her for the longest time and then commented........ "you sure don't have on alot of clothes." I loved it. My modesty lessons have paid off.