Not much to report

I figure I owe you an update though!

Alex and I are back in the swing of our "normal" schedule. We are 2 weeks into our new school curriculum and we are both REALLY enjoying it. It is much more well rounded (vs history based) then our past curriculum. I think Alex likes the different subjects and not having it be so monotonous. He says, "its fun and I really like computer, science and reading". We are also gearing up for another year of Cub Scouts. Bug is really looking forward to seeing all his friends from his Den again. He is also excited to sell popcorn again.

Alex and I leave next Monday (August 29th) for California to start the trial. We are both excited and anxious. We would appreciate some extra prayers for safe travels and for Buggy to do OK with the medication. We will be there until Friday undergoing testing and appointments. We are hopeful to meet up with a few good friends while there as well.

On a not so bright note....Buggy continues to struggle. He is losing weight and having quite a few days where he isn't feeling great. The Doctors and I have been in close communication and we are all relatively sure we know the cause of the issues. Once we are home from california we will most likely be making a trip to Houston to try and figure out a new plan. We had thought we would be heading there before CA, but it was decided we shouldn't rock the boat before going to Stanford.

Thank you for your continued love and support.
Ali

More Pics and Good News

As you can see we have been having fun in the pool! I will let the pics speak for themselves. We also got Alex's 7 year pics done. I posted a few so you could see a preview! Look closely, something is missing!

The next few weeks are going to be CRAZY!!!!! Sometime next week Alex will be admitted to the hospital in Houston. There is some concern for how skinny he is and how puny he has been acting. We will be inpatient for 4-5 days while we try and come up with a plan to get him back to baseline.

Then on August 29th, Alex and I will fly to California to begin the new medication. We are so thankful to the team at Stanford and in Dr. K's office for working so hard to get Alex in the trial and set up so quickly. We will be at Stanford for 3 days (and travelling for 2). In that time Alex will have a clinic appointment, a heart eval, 2 brain scans and get his first dose of medication. Assuming he does well we will fly home on Friday and continue the medication. The next few months will be a whirlwind of travel back and forth between home, Houston and california, but we are so hopeful we will see good results from this medication and it will all be worth it.

Thank you to all who continue to pray so fervently for us.
Ali

We went on a dolphin watching cruise and saw a ton of dolphins!

Not Feeling Great, But Still Having Fun

I haven't updated in a week so I thought I would give a quick update on the last few days and some pics!

Alex is still not himself! He has been pretty puny. Mostly wanting to stay in bed and watch videos and play his Nintendo DS. Mimi and I have been "forcing" him to get out and have some fun the last few days with lots of quiet time in between. We have seen friends, been swimming and riding go-karts. I'll let the pics tell the story.

Alex and his Cousins

Want some Seaweed?




Sand Monster

Beach bum

At the creamery with Mimi and PopPop

Mommy's Angel

Buggy and Cayman

PopPop and Bug leading the Race

Buggy DID NOT like driving himself!

Win #2

Where Bug has spent most of his time!

In some other exciting news....I had mentioned a clinical trial for a new medication they are using with some Mito patients. We just got word today that Alex has been accepted into the trial. Thank you for all who prayed for us. We are very hopeful for what this may mean for our Bug!

Ali