Tuesday, March 6, 2012

In Seattle........Longer

We flew to Seattle Sunday evening and rented a car to get tour hotel in the university area near Seattle Children's Hospital. we had a pretty good night's sleep and struck out for Krispy Kreme donuts Monday morning since when we landed, Garrett said, "Mom, I think we should go to a restaurant and sit down and eat donuts together!" as soon s we landed Sunday! How cute is that? So we got donuts and headed to see Dr. Saneto. for our first time. I met him last June in Chicago at the Mito Symposium and then decided to consider changing Garrett care to him from Dr. Koenig Who we LOVE but was all the way in Houston. Dr. Sane to was absolutely wonderful yesterday in all respects....from answering my ten million questions to creative fielding the nine million. no human can anwer for us, to how he handled Garrett. He spent lots of time with us and was so patient. Lucky and blessed me had two friends from the online Mito world meet us in the waiting area and then keep Garrett once the exam was over so I could talk to Dr. Ssaneto in peace. Here are the high points of the appointment: He added Vitamin E to mito cocktail daily. He made Ribolflavin be all at night instead of morning and night to reduce the way med make Garrett stink. He ordered a coupe more blood tests to be drawn while Garrett is under anesthesia today for his MRM. Will look for lactic acid peaks in Garrett's brain during MRI/MRS today and is peaks seen, will ass another thing to the mito cocktail. Recommended we cntinue therapies and the game is to make the mitochondrial last as long as we can, and exercise is shown to help with that. wants to see us back in 6 to 12 months unless things worsen. He said not to keepGarrett in a buble to protect him from illnesses and was glad to see Garrett doesn' t get ill often but warned even with him seeming very well, any illnesses should be taken seriousy because any ne can knock him down into a dangerous state even though he seems so darn healthy.....baffling. He wants us to proceed with the gene testing....we have the blood draw kit at home...because Garrett would be possibly eligible for starting trial miracle mito drug if his disease gene is found and the study opens up fr om an end of life tidy to all patients with identified genes. THAT woud be HUGE as then the not yet approved miracle med would be started before approved and free!!!!! HUGE He said most recent studies have shown patients like Garrett living pat age three have a shot of making it into third decade of life, though quality of life may not be great. He also reassured me that if a person has to have Mito, now is a good time to have t as medicine is advancing rapidly!! WHEW! And i kow i am leaving things out but will have to log more later. I didn't think I would hace time to blog, but Garrett made it possible. You see, he was scheduled for a sedated MRI this morning with us checking in at 7:45, but phe snuck a banana OUT OF OUR HOTEL ROOM GARBAGE CAN and took a bite,p thus scrapping the MRI and causing us to have to change it to this afternoon, change our flight back home frump this afternoon to tomorrow, extend the room and the rental car.....and of course now to keep him NPO until after the 1:45 MRI, which is just a hopeful thing for now since they are having to seriously squeeze us in now!! So he is begging to eat, hasn't had any of his much-needed mess, and he is a mess of a hyper autism right now.......most certainly a football bat right now!! Sorry for thetypos but I am using Addie's iPad and do not have time to sit here and edit as Garrett is now naked and threatening to streak down the hall. Better strap him into the rental car and cruise for a couple hours!!! Too rainy to find a park yet....No, looks like Mr. Sun is out so let's go find a park! Please be in nprayer for the mito kids who are onto a healthy and active a our Garrett. This disease ravages so many lives and cheats soooooo many families.p If you would like to buy any of our awareness bracelets, p,lease comment below! We have raised over $1800 with the sale of these!!! Proceeds are going to the umdo or Mito Actin. Tthmk you!!,!


  1. Hi again Clara-Leigh,

    Since you probably don't have time to check comments such as my response to your comment on my blog (chasing streaking banshees has a way of squashing computer time, doesnt' it?), I thought I'd check in with you here too.

    I am dreadfully sorry about the delay on the MRI. Fasting children are very difficult to wrangle and keep happy. My prayers are definitely with you! Hurry up, 1:45! I hope the test will give you the information you need.

    Yes, nighttime is a big help with riboflavin, also preventing the school staff from worrying about dehydration when they see the deep yellow pee. Ask how we learned that one...

    Wow, that would be cool if Garrett was eligible for the study (and included meds). Very cool.

    I pray this morning smooths out for you and that the test is hassle-free and gives you good information.

    Blessings on you both!

  2. I'm glad it was a productive visit. Hope the MRI went well!