Friday, September 18, 2015

Eli is doing very well so far after the intrathecal procedure this morning. If he has any side affects, I would expect them tomorrow. He woke up from anesthesia like a bear! The last several times he has been sedated he woke up wearing his ugly britches, and it is so embarrassing, especially when I can’t do anything about it. I know, the meds can make them cranky, but he has also gotten to where if he gets a nap, he wakes up awful - and that is not medicated. By the time we are in the car, he is over it, and usually even in a very happy mode after. It’s almost like he wants to make up for it, so he has been in good mood this evening and after a rest in the hotel room was ready to “go somewhere”. And, that means TRU. He has been looking forward to the new Spongebob episode that came on tonight, so we got us a Subway after Toys R Us and came back to the hotel to relax and watch TV. We have not heard anything on the treatment front, except that Dr. Zaky is going to call the doctor in New York and talk to her. So, crossing fingers and toes that something will get moving, or we can at least know if it is a possibility.

I wanted to share something fun for a change. I don’t think I’ve officially shared that Eli has been granted a second wish! Eli’s first wish with Make-A-Wish was granted in 2012 when Bankston Motor Homes gave him a pop-up camper. MAW doesn’t give second wishes, which is not unusual. The Marty Lyons Foundation, out of New York, is one of the few that grants second wishes, but only in extreme situations, so we applied and he was accepted. Eli’s wish is to visit Jay Leno’s garage in Burbank, California, and they said, yes! So, (unless something happens with Eli or if a treatment comes up before we can go) the whole family will be flown to California to visit the garage (no promise that Jay will be there), and we hope to add a couple of other fun things ourselves while we are out there (like tour the Warner Brothers studios - Eli and Caleb, especially, are big Looney Tunes fans, or try to get into a taping of a show they would know - which is not a lot if it is not a cartoon, but something like America’s Funniest Home Videos. I personally, would be beside myself to go to a taping of Ellen Degeneres’s show. Or see the Hollywood sign, maybe.) Of course, time is an issue from every angle, but we’ve been waiting for weeks to hear from doctors, and I’m afraid we just can’t wait to do this any longer. The soonest we would go would be at the end of the month - the soonest. So pray that he maintains his current strength, and that we can go without jeopardizing any potential treatment that might finally be offered. We wanted to drive an RV out there, but that will just take too long. Vic is worried about missing work, and it will just be more school that the kids miss, which puts them behind for more than just the week it seems like. Still it will be about five days including travel, so, as long as everything works out, it will be such a wonderful opportunity to do something that we would never, ever get to do, or think to do.

As long as Eli still feels good tomorrow, we will be headed home with no treatment plan.

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