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...

Meetings March 6th and 13th

Following the visit Norman and I had on 2-27, I flew home with Norman to DC on Saturday the 28th. The appointment on March 6th was a conference call, so Norman and I went to Eli's home psychiatrist and we called Meridell and did our meeting that way. It was the most uneventful meeting we have that point they were still working on getting his testing done, but the biggest news from that call was that he had gone 6 days in a row WITH NO REDS! That was phenominal, and still has been the longest stretch he has gone being that good.

I flew back from DC on Thursday the 12th, and had an in-person meeting/visit on Friday the 13th. Because of his good behavior, he earned a day pass, which means that we were able to spend the day off of Meridell's campus and do something together. We chose to go to InnerSpace Caverns up in Georgetown (just north of Austin), and we had the BEST TIME! It is such a neat place, and it is a really big cave! We got to see lots of itty bitty bats, and Eli had a fun time. He behaved very well, and was able to really keep on track when it seemed that he might go a little off course. We ended up in Target so that I could get him some more toothbrushes/toothpaste, socks, etc, and of course there were those toys and items that he wanted, but I said no. I explained that I bought him a souvenir from the caves, and he did start to whine and protest, but then corrected himself and said, "Okay mommy, I'll do the right thing. Maybe next time". I was SOOOO proud of him! He seems so grown up. *sometimes* :)

We did get the results of the testing back on that day - earlier on during the meeting. The tests they performed were...

*Wechsler Nonverbal Scale of Ability
*Wide Range Assessment of Memory and Learning - Second Edition
*Wechsler Individual Achievement Test - Second Edition
*Delis-Kaplan Executive Functions System, Verbal Fluency, Design Fluency
*Trail Making 1-5
*Index Finger Tapping, Lateral Dominance, Grooved Pegboard
*The Berry-Buktenica Developmental Test of Visual-Motor Integration
*Oral and Written Language Scales
*The SNAP-IV Teacher and Parent Rating Scale

He scored either in the average ranges or high ranges for his same age and grade peers, but what is confusing is that during testing he was not paying attention. He was all over the place, because this was before they had him on the medications he is on now. He was in and out of his seat, focused on other things going on in the room, and they had a hard time getting him to focus. We are all left wondering what the "true" scores would be if he had been paying attention, but needless to say we are happy that he isn't experiencing huge delays in most major areas. The problems that they do report are as follows (I'm taking the paragraph from the report).

Testing suggests significant problems with recalling verbal information without cuing and moderately impaired visual working memory. Visual attention functioning was also quite variable and mildly impaired on one measure.

About his language, they did say this...

Eli's spontaneous expressive language was generally fluent and free from paraphasic errors. His articulation and pragmatics appeared grossly intact. There was a significant difference between his receptive and expressive language scores, indicating that Eli performed better on receptive language tasks than on expressive language tasks.

And about his behavior during one of the interview sessions...

He was extremely fidgety throughout the interview, and eye contact was rare and fleeting. Eli's receptive and expressive language functioning appeared grossly intact. His thought process appeared logical and goal oriented.

During the testing period, his medications were as follows:
*Lithium - 150 mg 3x per day
*Concerta - 18 mg 2x per day
*Seroquel - 25 mg 2x per day and 100 mg at bedtime
*Depakote - 125 mg 2x per day

Sometime after the testing period, they took him completely off Depakote and added in two new meds. They have been lowering the Seroquel (I believe with the intent of doing away with it eventually).

So that is enough on those meetings and visits. More to come soon...

Saturday, March 14, 2009

Thank you

I just wanted to say thank you to each of you for your comments, prayers, emails, phone calls and cards. I'm sorry I'm so horrible about commenting you back in a timely manner...please know that each comment is so special, and each one of you is appreciated more than you know.

Our visit yesterday went so wonderfully well. I will be posting an in-depth update very soon...I'll try hard to do it tomorrow. We finally got some "real" answers and some results of some of the testing, so for the first time in all of this journey we are moving forward, and I truly feel that way. We still have a long way to go, but Eli has made leaps and bounds...and I will blog about it very soon. I just wanted to let you all know how thankful I am for you...

Monday, March 9, 2009

Point Store

I've been meaning to write this post for awhile and the time just keeps getting away from me. But I'm inbetween emails and calls from Meridell and Virginia's school program called Child Find that helps place him in the right school for next fall, so I thought I'd do it since Eli's on my brain.

At Meridell they have this incentive for the kids called Point Store.

Each day is broken down into segments - basically it boils down to a morning timeframe, afternoon, and then evening timeframe. They get points based on their behavior for each segment of the day, and the scale is a color based system.
Green - great behavior - 5 points
Green - good behavior - 4 points
Yellow - pretty good with some testy moments - 3 points
Yellow - okay, but not great - 2 points
Red - Not good 1 point

Each Friday they tally up the points and let the kids pick out an item from their "store" which is a room with cases and cases of "stuff". Toys, nice bath stuff, games, presents for parents, school supplies, pillows, blankets...all kinds of stuff. They have some NICE stuff!

You can either spend your points, or roll them over to the next week and save them up to get bigger prizes. It's kind of like at Chuck E. Cheese where the more points you have, the nicer toy you get, so same thing at Meridell.

Before this new medication, Emantadine, he was getting Reds and Yellows. But it's soon as they put him on Emantadine, he has gotten all greens. Seriously...ALL GREENS! Go Eli! Now, we're not sure if it is a fluke and he's just being good, or if it truly is that the medicine is really helping him be able to control his emotions. Only time will tell I guess.

So far so good though, and hopefully he will earn his day pass on Friday so that we can go off campus! :) Alright...back to the phone and email for me... :)

Saturday, March 7, 2009

Quick Update

They added a new drug on Thursday...Emantadine...and it seems to have made a big difference!!! He's gone from reds (tantrum behavior) to greens (great behavior)! He even earned reward time of playing on a playstation tonight! :) So since he's been there they've added Tegretol and Emantadine, and he's still on Concerta, Seroquel and a smaller amount of Lithium. Maybe the Emantadine is our "miracle" we've been waiting for. Only time will tell. He seemed so happy with himself to have been behaving, and we found out yesterday that if Eli can keep up the good behavior until my visit with him on Friday, that I can take him out away from the campus to go to a cavern they have in Austin or go do something with him away from there! :) Yippeee!!! I hope he can earn his day pass for us to have some time together.

I'll keep you posted...