crazy much?

The last 2 weeks have been busy and quiet at the same time. The pool opened and I try to take Toser for an hour or so every day. He loves being around the other kids and playing in the baby pool. And I know I say this all the time but that kid is so sweet I can't stand it. I told him he's a sweet boy and he said, "because I keep Tater safe." What 3 year-old thinks about keeping his brother safe?! I love it and hate it at the same time. On the one hand it means he loves his brother and wants the best for him and on the other it means he understands that Tater needs special care. Of course he understands that because of how our lives tend to revolve around Tater but a 3 year-old should not be thinking like that. He should only think about toys and playing but he has to think about not stepping on Tater's vent tubing or what the different alarms mean. So I make sure he has Toser play time every day where he can be a kid and not the brother of a kid on a vent.

Tater had the usual therapies where he wouldn't do a darn thing and then we would get home or the therapist would leave and he would do something they were trying to get him to do. Typical. We seriously think his problem is that he's too smart and knows that we'll eventually do for him the thing he needs to do for himself. Like eating. First of all, the kid never had a chance to get hungry because of being fed through the g-tube and second, he KNOWS we'll feed him through the g-tube so why should he swallow that icky baby food, yogurt or whatever we put in his mouth. Vicious cycle. And it's like that with everything else. We're working on getting him a gait trainer which will hopefully give him the urge to move on his own. He's getting to be a very big boy-he weighs 25 pounds and his vent weighs 15 with the battery so we're carrying 40 pounds of chunk and equipment any time we move him around. That's not counting the go-bag and suction that goes with him everywhere. Instead of making large arm muscles it's all causing us to have very bad backs!

And to add crazy to crazy, I'm loading the boys up next Saturday and we're hitting the road to South Carolina to see Leeda, Uncle Cracker, Pencer and RockStar (Mr. Awesome has to work so he's very jealous). My plan is to just take it slow and expect a normally 6 hour drive to take 8 or more. I really think I'll make more stops for Toser than Tater, who hardly needs suctioning right now. We haven't been to SC in 2.5 years and I really want to do this. If for no other reason than to prove that this vent thing isn't going to hold us back too much. Tater's doctors are all about us going about our lives so we're going to get on with the living. At least until this fall when we have to enter a health bubble again.

A few pics from the last month or so:

(more at http://picasaweb.google.com/tosertater/MayToJune2008)

Hey Y'all

I'm back. We got in Monday night and while it was a great trip, I love being home. Had a ton o' fun sitting by the pool, playing Yahtzee and drinking really yummy frozen drinks. Danica and I went with my mom and dad and 6 of their friends. We were worried about being the "young" ones and how everyone might be offended by us wanting to drink adult beverages. Well, ha! The joke was on us. We're total lightweights. Cannot even begin to hang with those people. They were so much fun and apparently need no sleep after a night of margaritas and dancing.

We stayed at a smaller house in the same villa complex that Manny and Hunter got married in 2 years ago. It was just the 10 of us in our group at the house and it was perfect. We had great food (so fresh-you would not believe the pineapples!) and enjoyed not having a true schedule. We only did what we wanted to and didn't do the stuff we didn't want to. (It was nice living the life Toser lives every day.) The one thing we really wanted to do and did was the canopy tour where you put on a harness and connect yourself to various zip lines and zip from tree to tree going up to 25 miles/hour at times. And when we were done zipping we went on a 3 hour tour (a 3 hour tour) in rafts on the Tempisque River. They billed it as a floating trip but it was more of a let's kill ourselves rowing in a river that isn't flowing much trip. We had fun but man we were tired and I got roasted by the sun. My delicate little skin cannot handle that much adventure in the Costa Rican sun. Of course I only got roasted on the top of my right arm and on the inside of my left leg. I wanted to get some sun while we were there but I wanted a more even color scheme, not the patchwork I'm sporting right now.

Oh well, we're back to the real world now. I missed the boys and I think they missed me. I know I missed my 6th year anniversary of being married to Mr. Awesome. But that's how awesome he is. He didn't bat an eye when we realized I would be gone on June 1st. He's such a great husband, a wonderful dad and my bestest friend in the whole world. He puts up with me so we know he's a saint. I love you Mr. Awesome!

Facts and A Myth

Fact: Tater is great and none the worse for the wear after yesterday. In fact, he's perfect.
Fact: It takes 2 minutes for a fire truck with EMS guys to get to our house
Fact: It takes a really good friend to know without word that you need her to drive you 90 miles/hour to your house
Fact: LBird can make the drive from the pool to our house in less than a minute (LBird is now Danica, as in Danica Patrick the race car driver)
Fact: I can run very fast in flip flops
Fact: We have the best nurse in the world
Fact: Tater loves to be bagged because he's a strange child
Fact: You can prepare for every emergency involved with a trach or a ventilator and it will still take you 30 minutes to realize a plastic filter has caused the ventilator to malfunction
Fact: You can throw a plastic filter pretty far when you're frustrated

Seriously, everything is fine. Yesterday was a great test of the emergency protocol we have for Tater without an actual emergency having to take place. Tater was never in any distress. The filter was cracked and the ventilator worked fine after I replaced it. Our nurse did everything she was supposed to do and we realized a couple of things we hadn't gone over so now she's truly prepared for an emergency. And we were able to meet the captain of the fire station close to our house and the EMS guys are now familiar with Tater and his stuff. I made the guys some muffins and we're going to be big buds, I can tell. Of course, Mr. Awesome was on his way home from being out of town. All the big stuff happens during or just after a trip of his (no pressure Honey!).

And now for a myth: you can ignore something and it won't happen. Ugh. The fact is, Danica and I planned a trip before all of Tater's trach stuff. We put money down and planned everything around Christmas, but after a 3 month hospital stay with the Tater I just couldn't see taking the trip. I didn't want to think about it so I thought it would go away if I didn't. I know I need a break and blah, blah, blah. The thought of leaving my boys is agonizing after everything that has happened. But Mr. Awesome was very insistent that I still go and things started falling into place: we have a great nurse who loves Tater, Mr. Awesome's aunt is coming to town for a couple of the days I'll be gone to help out, Wissa wants Toser to come to her house the rest of the time, Mr. Awesome won't have to take off of work... So early Thursday morning, Danica and I are hopping on a plane and going to an all-inclusive place in Costa Rica with my parents and a couple of their friends.

I'M CRAZY!! It's actually faster for me to get to Costa Rica than to the West Coast but I'll be out of the country and my baby might need me. I'm not worried about who I'm leaving him with because in all honesty, Mr. Awesome and the nurse are probably more alert to things than I am. I'm worried about how I'M going to survive thinking about him all the time. Hopefully some yummy margaritas will take the edge off that and Danica won't let me pine tooo much. Ugh. I'm seriously nauseous right now. I know I'll survive. Tater will survive. It will be a funny story in 20 years (Tater at 21- "Yeah, when I was 14 months old and on a ventilator, my mom took a trip to Costa Rica. Can you believe she abandoned me like that?") We get back Monday so we won't be gone for too long and hopefully Danica will still be my friend after 5 days of listening to me worry about my boys.