Saturday, March 21, 2009

Meeting/Visit March 18th

Due to Spring Break being this week, I had to have my meeting on a Wednesday because the therapist was going out of town. So that meant home to Oklahoma on Saturday, and then packing up to go again on Tuesday. I think my parents car knows the way to the hotel by memory now.

After our visit to the caverns, Eli seemed to get more homesick, and for the first time he got really emotional during a phone conversation shortly before I went to church on Sunday the 15th. That made for a hard evening, and I was very confused as to how much longer he would be able to stay down there, by himself in that sad state. I was comforted when I talked to Norman later and found out that when he talked to Eli a couple of hours after I had spoken with him, he was in much better spirits.

The cause in the change of emotions...or frankly, the appearance of emotion which had been pretty absent for a while is due to some medication changes and Meridell's good work. They found from all the testing that his issue is seemingly a frontal lobe problem. So they have him on a medication (I'm sorry, I can't remember the name of it right now! I'll fill this in later when I do!! lol) that addresses frontal lobe problems, and it is seeming to make things "connect" a bit better. So he is finally able to express himself better, feel things a bit more, etc. Which (don't get me wrong) is GOOD, but it makes it so hard to hear your baby cry and want to come home, and you know that he can't.

Now for some reason he has had a tougher time the past week with his aggression, and has been getting more reds than greens lately. His therapist thinks that it is because he doesn't see a light at the end of the Meridell tunnel, and so at our visit on the 18th, we set up a timeline. Not only did they feel it was time to start his "Going home chart" but they felt it was also necessary to have him see that he was working on specific goals now.

So this first goal is that he has to earn another day pass for our upcoming visit on March 27th. For each green he gets, he earns 30 minutes of off campus time. For each yellow he earns 15 minutes, and of course for red, he doesn't get any time. We introduced this to him like he was one of the Little Einsteins and that this was his mission. And to sweeten the deal a bit, my mom and dad are coming down for this visit, as well as Chase - who he is dying to see.

I am a bit worried about it, because he called today telling me that he had gotten reds twice today, and so we had a little pep talk about his mission and about our visit. He seemed down, but hopefully he can turn things around; at least he has a week.

So that is that. And after much debate and discussion, I have finally decided to head home to DC. Chase's and my flights are booked for April 1st, so this next weekend is my last in person visit for a while. I'm not sure how I will explain to Eli that I won't be down the next weekend, but I'll have to figure something out. He doesn't have a good concept of time, but he's smart enough to know if I say it'll be a month then that isn't good.

The GOOD news, is that my next in person appointment after the 27th is scheduled for April 24th, and that entire month they will be working on specific behaviors and improvements on that and coping skills, etc. IF he can make good progress then we are looking at him getting to earn a weekend pass that weekend of the 24th. So that would be wonderful!!! I've promised him that on his overnight visit we would go to San Antonio to Sea World, so that is a big incentive for him.

So we shall see. I'm anxious to have our next meeting...see what they are witnessing and what they have to say. They keep me going, and I'm so lucky to be able to be going in person to so many of them. That's all for now...all I can say is to just keep praying. So far so good...


Charity Childs-Gevero said...

Everything that you are going through just sounds so, so hard to go through...

remember the sugar plum the end of the winter, you and Eli and the rest of your family will be beautiful, sweet-smelling blossoms under the snowflakes...


Wendy said...

That all sounds like such good news! Maybe for the time that he is waiting to see you, you can send him little somethings in the mail each week as a reminder that you will see him soon. Like, if it was 4 weeks, you explain to him that once he has 3 whatevers then you will be the 4th. If you do something like this, maybe you can let the staff know to put pictures/drawings of those things on his calendar and a pic of mommy on the visit day.
The hardest part, as far as visits go, is coming, but at least the figuring it out stage is making leaps and bounds. :) Good luck with this next stage. I really hope it all works out quickly and smoothly so your family can be whole again. Love you, girl!

samskat said...

It sounds like he is really making progress, Stacey!! I am so glad to hear that. I know that this is really hard for the rest of you as well....We'll keep praying for you guys....I am so glad that you are looking at a timeline to go home!!!

Stacey said...

Thank you all so much. Your support means the world to me...(And sometimes, it's all the strength I have...)