A Roller Coaster of Emotions

Tomorrow is a day we will both celebrate and cry. Tomorrow is a day we embark on a journey that we hope will change the course of Alex's life. Tomorrow we will also celebrate Samuel's 5th birthday without him.

Anyone who has spoken to me over the last week can tell you that my emotions have been raw and close to the surface. I am sad. Sad for my best friend, sad for myself, sad for Buggy. We all miss Samuel. We all grieve. And right now it is just a little harder then it has been for a while. There is not a day that passes in our house when we don't talk about Samuel at some point. Alex longs for his best buddy daily. He so desparately misses having someone "who is just like him". Someone who went through the same experiences and who helped him through hard times. I miss the little snuggle bug who always crawled up in my lap and who begged me to lay with him (but only after Mommy had left the room). I miss that sweet voice calling my name.

But tomorrow, while sad, will also be a day of celebration. I do not for one minute find it a coincidence that Alex and I will fly to Stanford on Samuel's birthday. I wholeheartedly believe that Samuel is watching over Alex. As Missy has told me all week there is no place Samuel would rather have us tomorrow then someplace doing something to try and help Alex feel better. Alex has already been sure to let me know that we will be having dessert tomorrow and singing Happy Birthday to our Buddy.

The rest of the roller coaster has been in regards to Alex, his less then stellar health these days, and the hope this medication brings. I cannot begin to explain to others the emotions that come with being the mother of a child with Mito. Not only is it a disease that could take my childs life at any moment, but it is also a disease that has no way to fight it. With cancer you are given odds and a plan of attack. With mito you have to sit back and watch your loved one fade away while you do nothing. It is a helpless feeling. Enter EPI-743...This medication may do nothing for Alex or it could change everything. It is so hard to not be hopeful and so scary to let our hopes rise and possibly have them dashed. As I have watched Alex struggle over the last 2 months, I have worried. He doesn't have his usual spunk, he is losing weight, he doesn't feel good. And so I hope, I hope for a fighting chance. A chance that starts tomorrow...

Please pray...pray for my emotions, for Buggy's safety (specifically no allergic reaction), for our travel.
Thank you for being there to celebrate our joys and hold us through the sadness.
Ali

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!