Monday, March 26, 2007

March 26, 2007

The adventure's spring. It's time to play outside. Outside is fun...lots to do. There's a trampoline and a swingset with slides and everything. And...there's a sandbox. So far, he's been pretty good with the sandbox. He's gotten in there a couple of times but didn't stay too long. I'm gonna keep my eye on that one. If he likes the sand to the point where all he does is stim on it, it may have to go away. I hope that doesn't happen...I know he really enjoys it. And I can't wait for him to remember the hose...

Spring is always a busy time. Jakob's social calender fills up quickly and we seem to be going all over the place. I dragged him to a fashion show and a slumber party over the weekend and he was a dream. He just hung out. He didn't get mad, he didn't pull me to the door, he didn't squeal. He was great.

Now, what I've learned is...if he's great in public, there's a decent shot that he's gonna make me pay for it. And, he did...a little bit. When we got home, he had a lot to do and not much time to do it. He had to read his books (all 7 of them), arrange some toys, eat some cookies, and get a drink. So...we were up awhile...til about 10. That wasn't too bad.

It was the one-man party that started at 2:30 am that got me. The party went on 'til 6:30ish. Party, party, party. And I'm afraid that I set myself up for this one. I think I screwed up with the alphabet sheets. He loves the alphabet, ya you'd think that alphabet sheets would be great, right? Wrong. When I heard him talking at 2:30, I found him trying to rearrange the sheets. I think he was trying to line up the letters on the flat sheet with the letters on the fitted sheet. I'm still not sure. I tried to help him but I couldn't figure out exactly what he was trying to do. Finally, I pulled his winter sheets out of the closet. He took one look at those and tore the alphabet sheets off the bed. He even helped me put his flannel Christmas sheets back on the bed. This process took at least 45 monutes...and I was hopeful he'd climb into his flannel sheets and go back to sleep. No luck there either. He headed down the stairs. It was time to read.

Pretty much everything after that is a blur. I just remember him having a great time...until 6:30ish. Yup...he got me. He got me good. Turkey. I guess that's what I get for taking him to a 9-year-old girls' slumber party.

Monday, March 19, 2007

March 19, 2007

I cried. I couldn't help it. It was so awesome. Priceless. He did everything he could...he scampered, he marched, he waved his flag, he clapped his hands...he did it all. I cried. It was just too much for me to handle.

It was a proud moment.

Another sign I need for the house...

"Life is not measured by the number of breaths we take,
but by the moments that take our breath away."

Tonight was one of those moments.

It was so great to see him up there...handling the strange environment, the lights, the crowd, the noise. Not to brag, but as far as the dance moves were concerned, Jakob was one of the most accurate performers. And it's so sweet to see him with the other kids. The one little girl standing next to him...I've seen her with Jakob before. I can just tell that she looks out for him and gives him some help if he needs it. I have to send her a thank you note. She's so cute and so sweet. I love her.

I have it, video and still photos. I can't wait to share.

I need a tissue.

Sunday, March 18, 2007

March 18, 2007

Wow...we've been busy.

Jakob was AWESOME for his EEG. I'm still saying "Wow" every time I think about it. He wasn't a fan of getting the stuff put on and taken off, but that was expected. He doesn't like feeling confined...and his wrists were strapped down and he was in a papoose. He doesn't like his head being touched...they had to glue a lot (I'd guess at least 20) of thingies onto his scalp, then they were wrapped and taped, then a hat and more tape on top of that. He was pinned down for about an hour. I was sweating by the end of it. I was counting backwards, singing, playing peek-a-boo and whatever else I could come up that might make him smile.

All things considered, he came through like a champ. There was screaming, hollarin' and some big alligator tears but I never lost him. He continued to make eye contact and smile every once in a while. I call that a victory.

It was at home that I was most proud. He wasn't cranky, he didn't try to rip it all off his head, and he never got mad at me. He was an angel. He read his new audio books and some of his old ones. He watched a couple of videos (Signing Time and Animal Adventures) and we hung out. He was affectionate and he even took a nap. He and I spent the night together on the couch with my head by his feet. I figured that if he moved, he'd kick me in the head and I'd wake up. He slept great...

The best part of all is the EEG came back seizure activity. Whew...

We have a couple of events coming up that Jakob has really been practicing for. His big concert at school is tomorrow night. We've been singing the songs and doing the hand motions every time we're in the car. He's got it...the question is, will he be feelin' it when he's on stage? It all depends on that...if he's feelin' it. If he's really feelin' "Grinding Corn", everybody look out.

The other event is a BIGGIE...Jakob is going to throw out the first pitch at a Red's game. Wow. We are soooo excited. Spring Training started 10 days ago. He's a lefty with a heckuva fast ball. We're documenting it all for a video segment called "The Road to the First Pitch". (The game is Saturday, April 21. It's a night game and ticket order forms are available at More on this to come...

I just have to say that Jakob has really been a dream lately. He's doing so many new things...he's impressing everybody. We're all wondering what's going on....what's changed...what are we doing differently that's working...and none of us have an answer. So we're just gonna go with it and figure out what to teach him next. His imitation skills have been amazing so there are a lot of possibilities. I'm looking forward to finding out what our next adventure is going to be.

Wednesday, March 07, 2007

March 7, 2007

Another first last night and it was a really good one.

I'm pretty sure that Jakob is reading. I've gotten him a few audio books and he loves 'em. "Green Eggs and Ham", "Chicka Chicka Boom Boom", "Moonbeam Bear" and two Beatrice Potter stories, "Tale of Peter Rabbit" and "Jemima Puddle-Duck". He puts the cd in and points to all the words as he reads along with the cd. It's very cute.

He requests my involvement with "Moonbeam Bear" and "Tale of Peter Rabbit" so I sit next to him and point to the words with him. After a very inspriring reading of "Peter Rabbit" last night, he wanted me to read "Jemima Puddle-Duck" to him without the cd.

Jakob has rarely had the time, patience or interest in being read to...especially a long story. So I was a little surprised that he was wanting me to do it. I plopped him on the couch next to me and we read the whole darn thing. He turned the pages and was engaged the entire time. I was like "wow". It was so nice just sitting there reading a book to him. A simple of those simple pleasures that I've waited a long time to share with him.

After the reading was done and he was just sitting there nestled under my arm, we had a little chat. I told him how I know that he's having all kinds of thoughts and ideas running through his head and how I want so badly to know what they are...that we're trying so hard to help him find the way for him to tell us...and that I needed him to keep trying. I told him how much I loved him and believed in him. I think he got it. And as I sat there smiling at him with tears running down my face, he laid down, grinned at me and fell asleep.

Firsts are the best...

Tuesday, March 06, 2007

March 6, 2007

I'm still a little bit in shock that it went so well. Jakob had his appointment at the cardiologist yesterday. (I don't know if I've mentioned this before but Jakob was born with a hole in his heart. The doctors have been telling us since his birth that it was a very small hole that would probably close on its own. We never worried too much about it since we were told that even if it didn't close, it wouldn't create any problems for him.) We were dreading this appointment, fully expecting Jakob to be uncooperative. As always, I planned and I was hopeful and Jakob was PERFECT. He let the nurse take his blood pressure and use the stethoscope. And then, he let us strip him down to his underwear, put electrodes all over him and he laid still while they did the EKG.

Unreal...not the same kid I was living with a year ago. Now granted, so much of that has to do with what we've figured out about Jakob. What works and what doesn't. First, it has to be made a game and it's gotta be fun. He loves to be told that he's doing a good job so he needs to be told that every step of the way. No such thing as too much praise for this kid. The best trick I've learned is using a countdown. If he knows how much longer he has to sit still or lay down, he's more tolerant. This is how we do haircuts and get him out of the tub. I start the countdown (usually at 30) and if I start to go too slow, he'll let me know. Sometimes, he even takes over the counting on his own. But he seems to be so focused on the numbers that he tolerates whatever it is we're doing to him. It's a great trick and I use it as much as possible.

It was great news at the end, it appears the hole is closed and we no longer have to be concerned about it. I like that...something NOT to be concerned about.

Now we just have to get thru the 24-hour ambulatory EEG next Monday. I wonder what number I'll have to start counting back from to make the countdown last 24 hours...