Monday, June 30, 2008

Colorful Colorado

Crisp clean air, wild flowers, no need for air conditioning, the soothing sound of the river, a deck over-looking amazing mountain views.....yeah that about sums up our trip to the cabin. It was wonderful. My parents cabin is breath-taking and pictures don't do it justice at all. My mother grew up in the Chrystal River Valley and we have made numerous trips up to my grandparents and great-grandparents' homes over the years. We lived up there for a few years when I was in grade school and my parents have longed for a cabin in that valley since we moved to Texas. Well, their hard work and patience has paid off. They designed the cabin inside and out and our good friend who is a custom home builder here in Texas traveled with his crew up to the mountains all last fall and winter to make their dream cabin a reality.

My parents are still at the cabin working on finishing touches. Since these pictures were taken my dad has put in rock steps up to the front door and my mom has stained the insides of the windows and removed the protective films from the windows that you can see in the picture of Lyndi and I on the deck. It was so hard to come home, but we look forward to our next visit!

Monday, June 16, 2008

Words of encouragement

I haven't posted about Drew in a while because the reports have been like a roller coaster ride. One day we get good news and the next 4 days we get bad news and then we get good news again. We have yet to get an accurate diagnosis. We have been through epilepsy, EPC, rare mitochondrial, and now we are looking at muscular diseases. Up until last night, the doctors were pretty confident that it was mitochondrial (this is a degenerative disease that shuts down body systems and eventually leads to an early death and it is very individualized), but we were given hopeful news last night! But back up some more first, his jerking/having seizure-like movement is now everywhere but his right foot and head basically now. It was just the left side of his body for quite some time and it spread to the right side a week ago. That was when mitochondrial became the number one player. But this weekend, things started to turn around and instead of jerking every other second and it only stopping for 30 second here or there, he would go like 4 minutes with out jerking and then only jerk every other second for half a minute or so. Anyway, he got a pass from the hospital to leave for 4 hours, so they took him to their church and everyone prayed over him. We are hoping for another good day. He usually has a bad day after he gets a pass to leave the hospital (he has had 4/5 passes so far and has been home 24 hours in the last 4 weeks plus 5 days) And he passed his liver test and eye-sight test and those are one of the first things to be affected by mitochondrial disease.

So, it could still be mitochondrial, we are waiting on two more muscle biopsies to come back. But we are hopeful that it is something else, something that is somewhat treatable and will allow him a long life and not effect his organs and most importantly his brain.

If you would like to send them a card of encouragement to let them know you are praying for them or thinking of them please email me for their address.

Monday, June 9, 2008

First Family Trip

This weekend we went to San Antonio just the four of us! It may seem crazy that this was our first family trip, but we are just so close to our extended families that our vacations always include people other than just us. Which we LOVE, but it was really good for us to travel and hang out just our little family this time. We had a full weekend I tell ya! We started off getting family pictures taken by an amazing photographer, Sarah Jones, on Friday night. The boys were cooperative and happy, so I think we got several good ones! Then Saturday morning we went downtown to the River walk and did the boat tour and ate lunch on the river. Then we gave the boys a much needed nap and took them swimming at the hotel after they woke up. Next was Sea World! We met our friends Andy and Kelli and their two little angels at the park on Sunday. We saw Shamu, road some roller coasters (even Landon:), almost petted some dolphins, and much more! I saw a Clydesdale for the first time and HOLY ROLLY those things are, as Landon would say, SUPER DUPER GINORMOUS!

I didn't take many pictures.....but I'm not going to apologize! I was busy playing with the boys and so was Kevin! Here are some that I did manage to get and steal from Kelli's blog:)

Sunday, June 1, 2008

Not the news we were hoping for.

The doctors were able to see where the 'unusual' electrod acitivity is coming from in Drew's brain. It is in the subcoritcal cortex (a very deep part of the brain) that can't be operated on and doesn't respond to drugs well. Therefore they have pretty much told them that this is the way he is going to be for the time being. They are being released from the hospital tomorrow. He is still seizing in his left arm and left leg currently. Please pray for strength for Kari and Jordan as they perpare for the future. Pray that God just chooses to reach down and heal Drew and take this away from him forever.