Monday....Monday

Hi,

E* and his Mom had their last day today and I am very sad. E* is Ethan's buddy at the feeding program and here at the Ronald McDonald House. They're both 6, same coloring, same approximate size. E* and his mom are a ray of sunshine. They are so friendly and welcoming. They made our transition into both the feeding program and the Ronald McDonald House easier. They even showed me how to hook up E*'s feeding tube, so we would be prepared when Ethan gets his. We are going to miss them very, very much. E* made great progress in the feeding program and they've been our bit of hope. They leave tomorrow, along with another RMH family.

We've had a lot of turnover at RMH lately, which is sad. So I'm sad about that too.

It's funny, because I thought the RMH was going to be way different than it actually is. It is a clean, friendly respite here, and I'm glad to be here, but it is very emotional. I didn't really expect that, maybe I just didn't think about it. Every family member here has a story and they are often not pretty. The kids have challenges like cancer, heart disease, birth defects, spina bifida, lots of orthopaedic (limb) surgeries, bowel reconstructions, cochlear implants, head injuries from car accidents, you name it. These kids have challenges that are unbelievable. When we first got here I saw the wheelchair, or the leg braces or the bandages, before I saw the KID. Wow....that was dumb of me. These tough little kids have some of the biggest personalities I have ever met. One little girl especially, wow, wow, wow. She has physical challenges that make me want to cry...for her. She came outside to play on the playground with Ethan. I asked her several times if she needed help (because I didn't think she could do what she was attempting to do) and all she said was 'No, I can do it.' And she could. And she did. And she will keep on doin' it. I know it sounds cliche, but this place is really changing me....for the better. These kids are inspirational. It's hard to see more and more families streaming into RMH, with their difficult struggles, but it's a good thing too. After all, the struggle may be 'difficult', but after you've lived with it a while, it just becomes life. And life goes on. And you just live it.

I'm also sad because we're in our fourth week and Ethan hasn't made much progress. Which may seem trite because feeding issues seem like they should be way down on the priority list compared to what some of the other kids are facing, but it is a big deal to us. Mark and I went from thinking we'd take Ethan out to eat and he'd eat from the menu, to thinking that he'd eat, but we'd just have to puree all of the foods, to thinking that maybe we'll get him to drink one other drink besides his smoothies. I really, really, really want to see some major progress and soon! Wah!

Today the feeders swapped out his smoothie (strawberry) for the same brand, but different flavor (strawberry/banana). This is a very, very, very small change. All other foods presented were his preferred foods. He ate the other items, just fine, but went on a spitting spree and then a standoff on the strawberry/banana smoothie. Man, is Ethan a tough nut to crack. Three meals with the new smoothie flavor today and only a few sips were actually swallowed.

The feeder turned off the Thomas Videos (his reward) when he wouldn't drink the new smoothie. He had to take a sip to have it turned back on. He would 'pretend' to sip, he would blow into the straw instead of sipping, he would take a sip then wait until the feeder turned to push the play button on the VCR and then he would let the smoothie dribble out of his mouth and down into his shirt. He would swat the smoothie cup off of his tray and finally he would just fidget until time ran out. A couple of times he even had the audacity to spit directly into the feeder's face. That's my boy....arrrrrghhh!

It all goes back to that control thing. When Ethan loses some control, his bad behaviors increase, usually with things he can control. For instance, when I said 'fidget' above, I actually meant that Ethan strips off all the things he can while strapped in his feeding chair. Off go the shoes, maybe the socks, maybe the glasses, and today, almost the wet, dribbled on shirt. Not only does he strip them off, but he throws them too, if he's given even a millisecond of opportunity.

Unfortunately, the bad behaviors continued after the feeding sessions. Why is it that some of the most uncomfortable issues have to deal with us in the bathroom?!? Ethan still wears diapers. He is showing some signs of being ready for potty training, but we've been advised to wait until well after the feeding program. We don't want to overwhelm the poor kid, you know.

Well, we're in the handicapped stall of the ladies room so I can change his diaper. Wet diaper off, I fold it up, turn to throw it away (all of 3 seconds), turn back and Mr. Control is tinkling ALL OVER THE FLOOR....with a huge grin on his face, no less. At least he tempered it with a contrite 'UhOh!'. Crap, now I have to rediaper Ethan AND clean up the floor, all while holding on to his arm so he won't run away. That was fun. And that was sarcasm.

Our room at RMH looks like a hotel room, but it does not have a chain or slide lock on the door. Ethan can walk out (or run out, in his case) any time he pleases. This weekend he chose to do so while I was 'otherwise occupied'. E*'s mom caught him. The first week here he did it while I was in the shower. Oh, it was sooooo much fun to run down the hall, dripping wet, dressed in only a towel, to catch him as he hit the 'down' button on the elevator. RMH staff told me the rule about wearing shoes at RMH. They didn't actually say there was a clothes wearing rule, so I think I'm good.

He also got away at Port Discovery. That one was scary. I lost him in a big Memorial Day crowd and had to enlist the security guards. They found him on the second floor. Within minutes of me losing him on the first floor. He is one quick kid.

You might ask, why I don't keep him on a leash. I tried that. Ethan holds himself at a 45 degree angle when he is strapped into the 'monkey leash'. He hates it. If the 45 degree angle stance doesn't work, he just drops down on the floor and refuses to move. Also not fun.


Please, please, please dear readers, please tell me that you have experiences like this so I know I'm not alone!

More fun tomorrow!
Molly & Ethan