Overnight Visit with Eli - 4/24/09

First off, the technical stuff ;)

Medications currently on (and the combination that has worked miracles for my sweet boy...)

*Amantadine - 100 mg at 8am and 2pm

*Concerta - 36 mg at 8am

*Tegretol - 400 mg at 8am and 8pm

*Seroquel - 50 mg at 8am

*Seroquel - 100 mg at 8pm

*Benadryl - 25 mg at 8pm

Now, I know you are probably falling out of your chair saying holy cow that is a lot of medicine! But you have to understand the battle Eli's little body is dealing with daily to understand the reasons for treating him with the meds he's on.

His diagnosis is officially PDD - NOS (Pervasive Developmental Disorder, Not Otherwise Specified) which just means that he's on the Autism Spectrum. Also, he has ADHD and ODD, Oppositional Defiant Disorder. Kids who are ADHD and ODD cannot take a stimulant, usually... It's just too much for their bodies to handle, and it makes everything worse...the aggression gets worse, the anger...frustration. BUT for Autistic kids, many of them have to have the stimulant to give them the ability to focus, pay attention, learn from their therapy or school, and/or just participate in life. For Eli it makes the difference in him sitting by himself (not on it) or wanting to be around kids and other people (when he's on it). So it's a catch 22...you give him the stimulant and even though he wants to be with other kids, he can't really handle being around them. So that is where the other meds besides the Concerta come in. The Amantadine is an anticonvulsant that actually relaxes the body and the nervous system so it doesn't get so wound up. The Seroquel and Tegretol are mood stabilizers, so that it helps calm the "crazy energy" side effects of the Concerta, and it makes the Concerta actually do some good for him and he gets real benefits from the combination.

Out of approximately 17 different meds...different combinations, different dosages...FINALLY he was in a place that they slowly got him off of what DIDN'T work, and he is on something that does.

He is a completely different child. Today has been WONDERFUL. During the meeting, the report was that he has had many more greens and yellows, and although the reds are there, they aren't for hitting or pushing so much. So YAY! We then left there with the go ahead for the weekend pass, and headed directly for Chili's. He ate a great lunch, then we went to the Austin Children's Museum. It was a great museum, and we had a great time exploring it. I was so proud of him...when a little boy came and took a truck away from Eli, he just said, "Okay, he can have it" and then he found other things!!! I was SO PROUD of him!!! And a grandmother even came up to me and told me how well behaved he was, and how she believes that children don't behave as well as him these days!!!! (That was because at story time, when the guy was done reading books, he offered stickers to all the kids. The oldest boys like TRAMPLED the little kids and were pushing and shoving to be first, and Eli just sat in his chair and said he'd wait until they were all done getting theirs to get his!!!) If that lady only knew what a glorious moment that was for me...I got so choked up I just thanked her like 4 times and that's all I could say. I don't think I'll ever forget how proud of him I was at that moment. It was like "It's gonna be okay. We're gonna be okay. This was worth it...it was what he needed." It was a much needed feeling for me...I KNOW we've done the right thing, but sometimes it doesn't feel that way. And the constant questioning from other people of "How can you leave a 5 year old alone like that" doesn't make me feel fabulous. But it has been what we needed...And today was proof of that.

Now, I will state 100% EMPHATICALLY that we are in no way out of the woods. This will be a constant fight, and the medications will need to be updated as he grows and his body chemistry changes. But for this moment we are surviving...and we are happy...and we are doing everything that we can for our precious little Eli.

So from the museum we went to Target to get him a toothbrush and some soap that won't burn his eyes (he is seriously scared of soap burning his eyes...to the point of crying if he thinks he has to get his face wet in the bath). Then we went to get his hair cut, and he did great! Then we grabbed dinner at Sonic and brought it back to the hotel to eat while we watched Disney channel and some cartoons on Nick. He had the best time getting to take a bath (he only takes showers at Meridell), and we made boats for him to play with out of cups and lids and straws :). Then I scrubbed him till he was pink, scrubbed his feet with some exfoliator stuff, clipped his nails, and conditioned his hair, moisturized him, and now we both feel a million percent better. I am not sure if it's just me, but I'm not sure how well he is washing up, and I know he's not getting his ears and face very well. Do most 5 year olds bathe themselves? I just don't think that a 5 year old could be that thorough... So at least he's clean tonight. Oh...and I scrubbed his teeth for 3 minutes solid!! :)

He is now watching Phinneas and Pherb, and rubbing his eyes looking really tired.

I am thinking we will get up in the morning, get out of here in time for lunch, and then go find a movie either at an IMAX or at a close theater and do that before I take him back to Meridell. He doesn't have to be back until 6:30, but with all the extra plane tickets we've had to buy, plus the fact that we are MOVING in a week and a half (just to base housing at Fort Belvoir in DC), we just need to save all the money we can; and every extra hundred bucks helps.

Alrighty, well I'm gonna wind this post up and leave you with just a couple pictures that I snapped today/tonight. Thank you for reading and for checking in on us...

Chase's Development & Progress

I am going to throw this post in Eli's blog, just because I don't feel comfortable putting it on the main blog, and I need to keep track of this. We have become aware of a couple strange behaviors/abilities so I needed to just jot them down in case it became important in the future. I hope to the Lord above that I am making a note of this for NO necessary reason, but I'm gun shy now...and I just would rather be safe than sorry.

*Jan-Feb timeframe Chase started lining things up certain ways. He does not get upset if you take a car out of the "lineup" or if you switch it to face it another way like Eli did when he was that age.

* April 13th, Chase started bringing me fridge alphabet letters one at a time and was getting them right. At the age of 2. He should not know these because we didn't teach them to him. We've pointed them out to him when reading books and stuff, but not spent time WORKING with him on these enough for him to know so many of them. So we'll keep an eye on his development and progress.

-I will update this particular blog post with all of Chase's info so it doesn't get mixed up in Eli's stuff.

Telephone Conference Visits

I brought Chase home to DC on April 1st, and we are so happy to be home. Chase has been such a daddy's boy since he got home, and it's just been wonderful to be home and to have things as normal as possible. We've done conference calls on Friday April 3rd, Friday April 10th, and then today, April 14th. The biggest change that has been made is that they have completely taken him off of Lithium, and so far he's not had any noticable signs that he stopped taking it. (YAY FOR THAT!) I was terrified honestly when they said they were taking him off of it, but it doesn't seem to be a bad move...yet. We'll just keep an eye on it.

As far as the 3rd, there were no major issues to report - just the usual of how's school, how is he outside of school (he always has more trouble outside of the structure of school), and what are the dosages he's on currently. Nothing major to report.

The conference on the 10th was the same way. It was kind of a funny situation though, because I had taken Chase to a museum to play in the kiddie building land, and the metro got stuck in some kind of mess on the way home so I knew I wasn't going to make it home in time for the call. We had to just get out of the underground metro station to get up to ground level so my phone would get service, so that at least I wouldn't be a no-show. Well, so I exited at the Navy Memorial/Archives exit, and found this little archway to a hotel that I could park Chase's stroller in and we could sit in out of the wind. So I got the call from the therapist, and then got linked up on the conference call with the home psychiatrist, and then it became obvious that we had some company where we were sitting. This guy was seriously smoking something and trying to light a little plant on fire!!! So that was odd... Then I got asked to not loiter! That was a first! But other than that all was well with Eli and it was another "he's doing okay, still having some reds and aggression, but overall he's still doing better". I honestly expect some reds...I mean ALL kids have aggression - even NORMAL ones! :) So I don't equate aggression with autism necessarily...just when it is over the top, out of control aggression.

Then again the same thing today on the 14th. The most significant thing that happened today was that I got my flights booked to fly out to OK/TX and got the hotel booked, and everything is set up for our visit back out there. Poor Chase...I have many friends who have never flown and that poor child has so many frequent flyer miles...I wish I had kept better track of all his flight miles. I cannot believe it will have been 27 days since I have seen Eli when I get to see him next Friday. I didn't know if I would be able to survive it...if Eli could survive it...but we have. And I am proud of both of us. :) My sweet big boy...he is so much stronger than I even could have imagined. I'm so proud of him.

And the HOPE is that we can have our overnight visit this coming Friday. The plan was to go to Seaworld in San Antonio, but his developmental team really didn't think that was a good idea until he was discharged...so I will be coming up with an alternate plan.

Okay, I might make some changes to this post tomorrow...Norman is waiting on me to start watching a movie, so I better wind this up. Thank you all so much for keeping up with us. Knowing that I have people out there who care about us make this bearable on days when I don't think I can keep going. Thank you thank you thank you...from the bottom of my heart. You bless my life more than you know...

Meridell Meeting March 27th

This meeting was especially difficult and emotional for me because I made the decision to fly back to DC with Chase on April 1st. It meant that this would be the last "in-person" visit for a month, and that was a hard pill for me to swallow. Somehow I had equated in my mind that my going home meant abandoning Eli, but I came to grips with it enough to know that I had to go home for Chase's and my sake...and Norman's too. We missed each other...we missed our normal. But I wasn't sure how I could look Eli in the face and answer when he asked when I would be visiting next.

Mom and Chase came with me, and we drove down on the 26th. We stayed in Georgetown, and had a nice time traveling together - talking and eating yummy comfort foods. My meeting with the therapist was at 10 am on Friday morning, and that went well.

Unfortunately Eli had gotten too many reds to get a day pass, and although they were willing to let him go out for the day with us, when I asked their opinion they felt that it would be sending him the wrong message. He KNOWS that he has to get greens and yellows to earn a day pass, and he's had just too many reds. So I agreed, and we decided that consistency is more important at this point than a fun day on the town...so we stayed on campus.

Eli and Chase were overjoyed to see each other. I've never seen Chase light up so much and he kept shrieking 'Eli, Eli, Eli!!!" and smiling and hugging on him.

A couple of AWESOME Eli moments were...

* They had a cookout for the children's unit. We went to eat at this large pavillion with lots of different colored benches, and of course Eli headed straight toward a red bench. But mom and I went to a yellow bench and suggested we sit at the pretty yellow bench and he started to protest, but my sweet baby actually STOPPED...THOUGHT...and then said OKAY! :) No tantrum. No crying. No flinging bodies on the floor. I was so proud of him.

*They let the kids have a coke because it was a special day/event. I still don't like him to have cokes (I know...mean mommy, but a 5 year old does NOT need cokes!), so I struck up a deal with him. If he drank one of the small bottles of water, I would THEN let him have his coke... Once again he protested at first, but then cheerfully agreed!!! Proud moment number 2!

*We noticed throughout the day as the boys were running and playing that Eli did his very best to run AROUND Chase. Like if they were running TO someplace, he would go around him so he wouldn't knock him down. Normally Eli would make a beeline straight for Chase, run him down or push him down and seriously trample him. But he was helpful, loving, kind, and didn't do any of the aggressive behavior like the shoving, running over, etc. That happened all afternoon, and mom and I were so happy to see that.

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Now there wasn't too much info to gain from the meeting...they had decided to take him off the Lithium, so we were at a wait and see point. With all the reds he had the previous week and a half, they were tweaking some on the doses/medication types, and it was more of just a "here's what we're doing" type meeting.

One of Eli's new little friends had his family visiting also, and that worked out nicely. The boys played together on the playground, and mom and I chatted with that boys parents. I had happened to say to Eli that we were excited because we finally were notified that our number had come up for housing on Fort Belvoir, and that's when we found out that the other family was an Army family! So we discussed military insurance, the different programs and issues we faced dealing with Tricare, and just the different posts. The husband/father in that family is now in Iraq, and my heart goes out to that family. Not only does the wife have to deal with a child in Meridell (and they live in Colorado Springs), but she has a deployed husband in a war zone, and a daughter who was so sweet that she had to keep things relatively "normal" for.

It was a very good visit, but it was terribly hard to leave. We left Eli on the playground with his class, but as we were leaving, Chase ran up to the fence (fenced in playground) and Eli and Chase clasped hands through the fence and both just cried and cried and held on to each others hands. It was such a hard thing to witness...one of the most difficult things I've ever seen. To separate brothers who love each other...and miss each other terribly...was awful. Chase cried for a while after I took his hand and led him away. That was just so hard; it still makes me weepy to think back on it. I will never, ever forget that moment.

Here are some pictures of that visit...I cherish that day so much...