Ebb and Flow

Just like the waves, change is constant. In and out, good days and bad days.

In exchange for our great weekend, we have been rewarded with a couple of tough days.

Cole is still not eating very much. I'm pushing fluids through his tube, so he is hydrated, but I'm wondering how much longer we can hold out, waiting for him to decide that he wants food again.

After all of that stress about, "How am I supposed to send seizure shirts to the dog if he isn't having big seizures?"; I got two in 48 hours. Lucky. I should be careful what I wish for! I actually said, "This is great!" when he started seizing. Oy! I have issues. Now if I could only make it to Fed Ex within 24 hours :)

Yesterday we finally had that pre-school testing we have been waiting for since we arrived. Cole performed like a champ...he was perfectly charming, social and carrying on a full conversation. This kid is going to be the demise of me. How can he turn on the "I'm perfect, I don't have a disability" switch when I need him to show his true colors most? Why couldn't he have acted like he did when the Medicaid Waiver people were here? Oh, I'll never know. All in all, we might have to go through the same thing here that we did in Utah. His scores are just barely borderline. They are not sure if he will qualify. Well, that is because you caught him on a good day, on a new medication. Tomorrow will be different. Next week will be different, and so on. Now we just hurry up and wait for their decision. At least the testing staff here are nice, huge plus!

Last night I had a little get-together and all of the new people sent Cole into clusters. We tried out the Valium by g tube and it worked great! Walking, talking, just dandy. I'm sure feeling warm and fuzzy as compared to dizzy and weird is a plus in any one's book! I was so behind in getting things together. Brian's train got stuck on the track, sending him home later than usual. Cole also decided to seize Tues night, canceling my plans for prep, due to me having to watch him stumble around in a post ictal haze. Then, Wed morning, we were at the school testing, until just an hour or so before people were supposed to arrive. Hey, this is our life! My cupcakes got ruined, I was still running around making food and the table was not even set when people started coming in; but I've just learned to roll with it. In my previous life, I would have been so high strung about everything going perfect, that I wouldn't have enjoyed myself. Believe me, there are worse things in life than serving food that doesn't look straight out of a magazine shoot! Or having your kitchen be cluttered. As long as it tastes good and eventually is set out, that is all you need to worry about. It was great for me to have a conversation with adult women. I have really missed my friends, so it is great to finally be making some new ones.

Hopefully, Cole can have another great weekend. His favorite Uncle is coming into town for a couple of days. Seeing him in person is going to be much more exciting than talking to him on the phone at least twice a day (which he does every day). We'll probably take some risks this weekend to play with him. Let's just hope that Cole's brain decides to cooperate. If it doesn't, then we'll roll with that too.