Blake's Fall Update

The day before school started, Blake had a  check up at Phoenix Children's Hospital.  Blake's appointment was one of praise . He is an "over achiever" and his liver function is improving so much so, that his medication has been lowered to only 4 pills a day (down from 6 at the beginning of treatment, March 2009). Super happy for him!! If his body continues to respond to this great treatment, we could be looking at a maintenance medication program in 12-18 months!! His doctor said that he is very impressed with how Blake is handling this phase of life. There could be some changes with his diet, but we will wait and see what comes of that (waiting to hear from the nutritionist at Phoenix Children's Hospital).
One of the side effects of this disease are the possibilities of tremors in the hands. Blake does present with this issue and we are watching him closely to assure that it doesn't effect his daily functions, especially in school. The blessing in this is that this tremor is only evident through "concentrated gross motor skills" (putting the lid on toothpaste, taking the wrapper off of a straw, etc); basically meaning you don't see it unless you know about it or are looking for it.
We once again are thrilled with the team at PCH and the care that they give our son. Dr.McOmber is so invested in Blake that we have no concerns for his well being.

The best part in all of this, is knowing that there are so many people praying for Blake. It is is evident. Our God is good! Our God is faithful!

Wanted!

I had the privelegde of being a part of the team that decorated for Blakes graduation today.  We decorated the stage to look like a western town.  It was a lot of work, and worth it!

Wilson's Update

Wednesday was yet another visit to Phoenix Children's Hospital for Blake. I am continually amazed by the magnitude of this facility, and yet the personal attention that is given to Blake is the best!

We haven't been to see Dr.McOmber since October (planned that way), so we weren't really sure what to expect. We reviewed all his lab work that was done from the last two weeks and he was pleased to see, that little by little, Blake's liver function is slowly improving. It will be 2 years in March since this diagnosis rocked our family's world, yet it has been two years of watching great things happen for Blake.

Dr. McOmber was concerned that the tremors in Blake's hands (one of the side effect of this disease) are not improving, rather they have become much more noticeable, and are now dual function (both hands). Dr. McOmber will be meeting with a hepatologist (study of the liver and other internal organs and management of its disorders) and neurologist (Wilson's Disease can affect the cerebellum function of the brain) to discuss Blake's current situation and the steps that we will need to take for further treatment.

Every time we meet with Dr.McOmber we are so blessed with the knowledge he has, and the care that he gives Blake. He told us that Blake is one of 4 patients at PCH with Wilson's Disease. There are no more than 10 total in the entire state! Makes him an extra special kid. He shared with us that he would be telling a teenage girl and her family this week that after all of her tests and biopsies that she too has Wilson's Disease. I started to cry as he shared this, thinking back to the very first time we heard that news. You walk into an appointment not knowing what to think, and leave with a whirlwind of thoughts and fears. This disease is so rare, and yet when you hear of another person being diagnosed, you realize you are not alone. We may be given the opportunity to meet this family, as Dr. McOmber will be telling them that they can contact us if needed. I want this mom to know she is not alone; there is support out there and families who can help her begin this process of change for her daughter. We pray that we will get the chance to meet this family and help each other.

"For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful; I know that full well." Psalm 139:13-14

(picture of Blake as Zeus in his school play, and Dylan his youth leader at church)

Shopping Helps!

As we are all in the "holiday spirit", I wanted to let you know that there is a way for you to save money when you shop online, and it helps Blake at the same time! For every purchase you make through these websites, a small donation is given to the Wilson Disease Association; all funds given to the development, treatment and research of this disease:

http://www.goodshop.com/ when it asks who you shop for, type in WDA

http://www.igive.com/ shopping for Wilson's Disease Association

You even have the option to get a tax credit when using these sights!

Thanks so much in advance for all the shopping you will do :), and the help that it will give the teams who research daily for a cure for Blake and others who have this disease.

Merry Christmas!

Wilson's Again

Today was another one of Blake's never ending appointments. He is so used to the routine by now; lab work and blood draws are no big deal, taking 6 pills a day is getting a little old, but he does it anyway because he knows its necessary, and the food restrictions are just becoming the "usual" for the day.

Today we met with Dr. McOmber at Phoenix Childrens Hospital and got a little bit of good news. There are some new studies being done for Blake that show that we may be able to lower the amount of medication he is taking daily! This brought a huge smile to his face. After a year of taking 6 pills a day, as an 11 year old, this is a huge step forward. After his examination, Dr. McOmber also told us that he felt that Blakes liver is not as swollen as previous visits have shown!

We are so blessed to have so many people praying for our son, and to say thank you is a small place to start.

We have been given the clear for 4 months and don't have to go back until February 2011! We will miss seeing the GI team each month, but are so thankful for this new part of the journey.

Lest We Forget

Blake's spring flag football team, the Dolphins, won their age division...again! This team is amazing! They work so hard together and it shows. They encourage and support each other no matter what. Their coach is a quiet force behind it all. It has been a fun experience for Blake. We look forward to the team playing again in the fall (we take the summer off becasue of the heat...it's still 105'+ for the first game!)

Civil War

This past school year (5th grade), Blake's class did a research project on the Civil War, and the Underground Railroad. Each student was given the opportunity to learn about the routes the slaves took when they were escaping north. The large photo of the quilt was made by his entire class. Blake is standing by the square he created. Blake's patch was the symbol for the slaves that it was safe to cross the Cincinnati River. Once across the river, a slave was free! The class even presented a small historical play. It was a real treat to see so many students in costume, having fun and learning at the same time! Thanks Ms. G. for a great year!

Toot His Own Horn

This past school year, Blake participated in band. He played the trumpet. He did really well, even though he ended up not being as excited about it at the end. When asked why it wasn't fun anymore, he said "Mom, it's just not as fun as the drums!!" So, we shall see what the new school year brings. We are proud that he hung in there and was able to perform at a few activities and events at school.

Wilson

We haven't updated on Blake's health in a while. In a nutshell, Blake's progress is slow and isn't really where the doctor wants it to be. We all know that it is a long process to get him to a stable point; Dr. Mc Omber (pictured here with Blake) thinks it will be at least a year before we can look at maintenance medication. So until that point, Blake is now taking 6 pills a day. At our last appointment, Dr. Mc Omber told us that he feels that Blake's liver is swollen as it is trying to clear all the copper out, and he is concerned that some of the other filter organs may be working harder to compensate. We have another appointment in 6 weeks, and lab work to complete before that. When you see Blake, you would never know that he had a sick liver, as the boy eats non stop and is pretty active. He is a very good patient, and the team at Phoenix Children's Hospital loves it when he comes in. We ask that you continue to pray with us that we can get him leveled out on his medication schedule and that the medicine will continue to do its job.

A Whole New World

Blake had a class presentation this past week at school called "The Wax Museum". Every class member had to dress up and portray a world explorer that they had chosen and done research on. Blake presentation was about Pedro Menedez D'Aviles (founder of St. Augustine, Florida). He had an entire speech to give every time someone stood in front of him at his desk and pushed the red button on the piece of paper. I think I saw Blake give his speech 5+ times. He did a great job. Blake is also a member of the ZBC team at school (the in-school TV program; with news, sports and weather). Blake is the sportscaster on Wednesdays. He researches his own stories and then memorizes his script each time before he goes on camera. It's a lot of fun. Who knows, one day it could be ESPN!

Another Blake Update

Blake had another appointment today - we see the doctor every 6-8 weeks. I will start by saying that we love Phoenix Children's Hospital and Dr. McOmber! He is awesome and so concerned with Blake's health and treatment. Blake had to have his medication adjusted, as his liver is not getting rid of the copper as fast as the doctor would like to see. So now Blake has to take 5 pills a day instead of 3; 2 in the morning, 1 in the afternoon, and 2 at night. The good side of this is that it will bring Blake one step closer to a maintenance program. The downside of this is that as the liver is trying to get rid of more copper, there will be abdominal pain. And the hard part, for me as the Mom, is that I can't do anything to take the pain away. Please pray that the side effects from the additional medication are minimal, if there are any at all. Dr. McOmber also doesn't see a need for another biopsy anytime soon - we are so glad to hear that. Blake's food restrictions still remain the same; not as fun, but we are adjusting.
Thank you for praying for Blake - we are thankful for it, and for you, our friends and family too.

Blake's Day

Today, our boy is 10 years old; where did the time go? Our blue eyed wonder is a blessing to us. Recently diagnosed with Wilson's Disease (a disease of the liver), Blake has not let it slow him down. He is so involved with baseball and football. He likes hanging out with his friends at school and home, and thinks church is a great place to be. He is a fun little brother, a very gentle and kind servant, with a caring and tender heart. Like his brother, he too is a funny boy, and we laugh a lot at our house. We love you more each day Blake. Happy birthday! (Photo of Blake at 6mo old!)

Learning Something New

Craig and I are in Sonoma County, California. We will be going to UCSF today for an all day symposium on Wilson's Disease. We are looking forward to learning everything we can about the disease, and how to best help Blake.

Only From Blake

While having dinner tonight, Blake mentioned that when he gets older he wants to open his own restaurant. Sounds interesting. "What will you call it Blake?" "Jalapenos" he said. "Why that name?" " 'Cause there's already a place called Chili's, sooo..." Oh he cracks us up!

Classroom Help

I had the privilege of helping in Blake's class this afternoon. I love that my job gives me the opportunity to be a Mom for school events when I need to be there. I had two concerns going in; one that I would be in the corner of the classroom with the "pet" snake that they have (seriously uncomfortable with that), or that Mr. Ritter would have me work on math with the kids. For those that know my educational history, math was quite possibly the most frustrating thing for me (BandAid can anyone - ha ha Dad!). But today I was pleasantly surprised when I found out I would be working with the kids on spelling. I love spelling! It was fun creating sentences for the words, watching the kids think over the spelling of that word before writing it on their paper, and then seeing the smile on their face when they got it right. Even if they didn't know the word, they sure did try their best. Thanks Mr.Ritter and Rm. 17 for the fun afternoon. Looking forward to next weeks adventures.