If I keep running this fast, I'm going to catch up with my future self !

I'm sorry it's taken me so long to write. Ben & Grace both started pre-school this month (Ben goes 3 mornings a week & Grace goes 2, of course they don't go on the same days so still no alone time for mom). I've also been working 32-48 hrs a week, rotating shifts. I only planned on working 20 hrs a week but recently I've had a lot of requests from staff & co-workers for coverage. And, because I'm a casual staffer, I have a terrible habit of thinking, "I better take the extra time when I can".
This tendency combined with our expenses makes me over book myself. Each time I'm in the middle of a work stretch I swear I won't do it again. That promise usually lasts till the next schedule.

School Daze.....

Ben started pre-K @ our local public school. All is well. I was able to find two really sweet UNC students to go with him. Jordan & Reecie. Even though the school has staff in the classroom and a full time nurse, I offered to hire someone as a teachers aide to off-set any extra time Ben may take from the teachers. Ben spends part of his morning in the Headstart class and part in the special ed class room, so I thought another classroom aide could help him transition. Finally b/c Ben can't eat any food when he's @ school, except what he brings, I thought the girls could help keep Ben from cheating. Especially if there's a birthday party or class treat.
Ben is doing really well and generally enjoys being there. I think the teachers, therapists and IEP coordinator have done a great job coming up with an individualized education plan for Ben and they are sticking to it. Just this week, they decided to break the larger class into two different recess groups b/c they felt that the smaller kids with more more needs would benefit from their own playground time. I'm sure Ben was getting creamed out there with the stronger, faster kids.
We've really seen an improvement in Ben's speech. He has even more new words and he's using "-ing", "-ed", and pronouns. Every week we see improvements that are subtle and yet profound(if that makes sense). Recently, Ben kept getting of bed when he should have been asleep. When Ted went down the hall, Ben heard him coming, he shut the door,jumped back in bed & covered up. When Ted opened the door & said "Ben stay in bed", Ben sat up and said "What?!" As in "What, I didn't do anything!" Where did that come from? I don't think he learned it from his speech therapist.
With his speech, he still mostly speaks in babble but now he sometimes will continue a conversation thread. He'll say something, we'll answer and then he'll say another follow up word that's either a question or another word related to the same subject. It's a conversation Ben McD style. Ironically, as his speech/vocabulary has improved, he sometimes has an even harder time talking. In the past, Ben mostly talked in babble, on and on and on. If you were lucky you'd get 1 or 2 words in the whole string that you could understand. Now that Ben has more words & a better understanding of language, I've noticed that he says "umm" and that he can get really stuck. I think he's trying to find the right word instead of just babbling on b/c now he understands that the words matter. What I've always wanted to know is, when he babbles on in gibberish for 10-15mins straight, did he think we understood him or did he know we didn't but didn't care & babbled on anyway. (Maybe his maternal grandmother can give us an answer to that one! Ha, Ha Grammy!)

Weebles Wooble but they don't fall down.....

We've also seen major improvement with Ben's coordination, balance & stamina. Ben has been off Keppra for over a month & he is now almost off Depakote. Saturday 9/29 will be his last dose. We're so excited and it's really amazing b/c Ben has been on Depakote almost continuously since he was 9 mos old. Like Keppra, Depakote causes major balance & coordination problems. As well as fatigue & irritability. As his dose has decreased,Ben's coordination has improved. I wouldn't compare him to Fred Astaire and he's still not "normal" but to me, his coordination has so improved, he's almost graceful. This past week, Ted saw Ben run back from the TV to the couch and in one smooth movement, without stopping, he stood on one foot,bent up his knee & flung himself on to the couch. Not a very big deal to most kids. In fact I'm sure they do the same thing dozens of times a day, but for Ben it's a very big deal. Before now, he could never have done it with his poor balance & coordination. In fact his motor planning is so bad, I don't think he could've figured out how to do it. He normally walks stiffly over to the couch,holds on with both hands & puts one knee up and then the other. Very stilted & deliberate movements.
I had a nice moment with Ben yesterday. I ran some errands and had to stop in 3 stores in the same shopping center. Ben was with me and I parked the car & he walked with me holding my hand the whole time. From store to store and in & out of each one of them. He never tripped, stumbled or whined b/c he was tired and wanted to be picked up.It was so enjoyable to walk along holding his hand. Something so mundane and taken for granted by most moms but it was an amazing moment for me. Ben has always had such a hard time walking, I usually end up carrying him. In fact at times I've had some glances from other moms wondering why I'm carrying such a big kid. It was just easier & faster. (And I have been know to carry both Ben & Grace at the same time! Who needs a home gym?!) Walking with him yesterday was so easy,so uneventful and so much fun!

Have you called Jenny yet?.....

The diet continues. Ben is doing well with some foods (peanut butter balls still rule) and his 3 new favorites are spaghetti, red sauce or butter (made with squash) & macaroni & cheese, made with zucchini. None of them are big portion sizes but Ben really,likes them. In fact he'll sit & eat the red sauce spaghetti & pay no attention to what we're eating. We're on the search for new protein options. Ben has sworn off cheese sticks, hot dogs & salad with mayo (who can blame him after eating it for 3 months!) He doesn't like bacon, tuna, eggs, chicken,ham or turkey. So we're pretty much only have ground beef & pepperoni to try at this point. We'll give it a shot then start over with the reject list. Failure is not an option.
We do have difficult moments. We had a surprise b-day party for Ted a little while ago & the group ordered pizza (Ben's favorite). I had parked him in the basement family room watching Sesame street so he missed most of it. But at one point he came upstairs and ran off with the pizza box. Luckily it was empty. Then later when we had birthday cake, he cried. I try not to dwell on those moments too much. I just think about the big picture and the hope for a better future for Ben. Bottom line is that because of the diet Ben will soon be on only one seizure med (Zonegran & it's a very low dose). He's only had one seizure since he started the diet on July 9th and that was when he was sick. So his future is looking really bright.

Keeping the faith....

Since Ben has come into our lives, Ted and I have really tried to keep the faith & focus on the positive things in life (Sometimes are easier than others & Ted is better at it than I am. He doesn't have the worry gene). With all the ups and downs life brings us, we try to stay strong and celebrate even the smallest joys.
Thanks to all of you for helping us to do that. We could never do it without you.


We can't solve anyone's problem but our own. That's how it's supposed to be. We can only be there in love while others solve their own problems.
-T.C. Whittaker