July 26, 2010

Wow, as you can tell this month has been crazy and I just haven't found time to write in the blog. Tyler has a lot of summer activities this summer and it's been great, he's doing so well. He goes to Splash Camp Monday - Friday from 9:00 - 12:00. We were very lucky as we actually received our first grant for TYler, which paid for part of splash camp! It was our first grant and very exciting. Then he eats lunch in our car (my poor van is trashed) and then we take him to summer school from 12:30 - 3:15. Then we pick him up and take him to Annie's (his afterschool preschool with mostly typical kids). He only has summer school Monday - Wednesday though so the beginning of our weeks are crazy. Lots going on since there were layoffs at my work which added a lot to my plate as well as new financial software and a new staffing software that I sort of fell into leading the project, well it's been nuts. And Steve's work is always busier in teh summer so we are kind of just in warp speed it seems. I remember one week complaining to Steve that it was ridiculous that I coulnd't find time to get to the store to get some hair conditioner!

But as always, it's so worth it! Tyler is doing awesome at both Splash Camp and summer school. Summer school says that during circle time, Tyler is the star of the show and he always wants to make sure that the teachers are watching him. At splash camp they just keep commenting on how bright he is and how happy, etc. It was funny cause htey sent home a note one day asking if he knew how to spell hsi name because they wanted to work with him and we responded back, um yeah, our TY guy can spell all kinds of things. Oh if only he could talk and share all of his knowledge. I'm actually home with him this mroning as he's a bit under the weather. HE was playing the leapster and it had a dinosaur game in it. HE brought 3 actually dinosaur figurines with him. He'd push on the triceratops bones on the game and then hand me the triceratops dinosaur. He so wants you to know that he knows what's going on. Plus I'm really excited abou tthe possibility of Tyler having an interest in dinosaurs so that maybe the boys will have something in common to play with and it will promote more interaction between them.

Tyler is absolutely loving his ipad. THere is one app we have where he has to trace the outline of letters and numbers and words and he's really liking it and it's improving his fine motor skills. He also is learning to spell so many new words thanks to the ipad and in terms of our mobility, it allows us to get out and do more because we know that TYler loves his ipad and will be more content if he has to stay seated, etc. We took it shopping at Sam's the other day and Tyler was fantastic. THe IPAD has been a godsend really.

As for Ben, he seems to be doing much better at preschool now in terms of his social skills. He's still regressed in the whole potty training (has at least one to two accidents a day) and he's a bit more aggressive than he was before but I take that all as part of a learning curve and I am working hard with him on those things.

Both boys have really came leaps and bounds in terms of their swimming abilities. A couple of weekends ago , they both were jumping off the diving boards and swimming on their own in the deep end (with life jackets of course)> Tyler would happily drown if you let him, he has no fear what so ever of jumping in with no life jacket and just letting himself drown so we definetly keep his jacket on! It's amazing to see them swim around in the deep end of a pool, they look so grown up.

I had a dream the other day that Tyler could talk. And even though I have this type of dream often, this one was different. Usually Tyler just says one word or one sentence, this time he was speaking in whole sentences, as if he'd been talking his whole life. It was amazing. Felt so good, I was crying in the dream, I remember it all so vividly and then I woke up and felt an overwhelming sense of sadness. Earlier that day, I had picked up Ty and we had been in the car for about an hour, he was watching a movie. WHen we got Ben, Ben pointed out to me that he wanted to watch the movie but couldn't because the screen hadn't been pulled down. I felt really bad for Tyler. Poor guy had been listening but unable to watch his World Music Video because i didnt realize the screen was up and he didn't have a way to tell me. It's little things like this that make me crazy that he can't talk. Yesterday, Ty was not feeling well, I knew it as soon as I woke up, he just seemed off and then wasnt' eatin gwell. I had to work and Ty fell asleep on Steve's lap, not lik e him at all and then he slept for 3 hours in the middle of the day! And another 12 hours last night. He's definetly under the weather but I hate smoetimes that he can't tell me what's wrong, what hurts, how he's feeling, what's going on. It's always a crap shoot, he doesn't have a fever so to pin point the problem is tough. I just wish beyond wishes he could talk to me, you have no idea what it feels like to not have him be able to tell you the simplest things.

Speech has also been going amazing this summer. Carol says she doesn't know what we've done but to keep up the great work. Good news to us cause we are trying to limit his supplements. Oh, and we are down to only 1 shot, sigh, and are not wanting to find another DAN doctor right now so we are still working with Ty on the suckers. We have the B12 suckers now and i tried one the other dya and could definetly feel a difference. So we plan to give him a shot tonight and then start working on the suckers again. He just gets bored before it's gone and the whole goal is to let it seep in, not crush it and drink it so to speak so we need him to suck on those darn things til they are gone, so far he's not overl

y interested but he will tolerate them so we hope he gets better.

The good news and bad news

The bad news is.. pretty sure i"m on the very of losing my mind lately. If it weren't for some amazing family members, it may have already been gone! My mom has been amazing. She's stayed with Tyler the last two weeks during the day. She's got him going on the potty really well and also got him to like suckers! This is huge for us. You know he gets methyl B12 shots well B12 also comes in sucker form, we have order our B12 suckers and hope we have the same effects as we do with teh shots. We'll soon know! The suckers actually end up being slighly more per month than the shots are, however it's a lot less stressful, easier to transport, no pain, and a special treat for Tyler. We've tried a couple of times not giving Tyler the shot during my mom's stay with him so she can track his progress, we never tell her when we didnt' give it though. She would jus ttell us when Tyler would ahve an off day or what was going on and then we'd give a shot and voila next day Tyler was more alert, interactive, and less stimmy. We know they work and are happy that we may have found a much more fun alternative.

The boys alos had their first densist cleaning. Ben did absolutely amazing. See him in the pic above smiling away. he was a total ham and never wimpered or complained once. Which isn't exactly his personality! He was such a good boy. Tyler on the other hand really struggled. I was so glad that both my mom and Steve and I were tehre. It took both Steve and I to manage Tyler so the doctor to get in his mouth, we literally had to restrain him adn if you've ever tried ot restrain Ty, he has the strengh of a 100 lb child I swear! My mom then watched after Ben int he waiting room. Remember Ben needs antibiotics before dental appts. I had remembered to fill the scripts and pick it up, however I had forgotten to tell my mom to give it to Ty before the appt. SIGH. So teh doc had to administer it there and then we had to wait a bit for his appt until he had those meds in his system. Anyway, it was stressful and thank goodness Ben has the worst teeth of the two (sorry buddy all myf ault) because Tyler is going to be a handful just get his teeth flossed. It's steve nad my taslk to really start workign with him on getting into those teeth, etc. and hving him slowly accept it. He's fine with teeth brushings thank goodness!

Ok I'm in a hurry so i will wrap it up.

So the good news.... we received our first grant! It helped us pay for part of Tyler's summer pgramming and we are super excited. The bad part is we have no idea how to manage TYler' sschedule right now. My work has had layoffs... I'm now doing the job of what 4 people once did and we are in the midst of (next week actually) using all new financial software in the city and my departmetn is training on new staffing software which I've been responsbielf for this project so my plate at work is more than full. Steve has a lot of pressures on him right now at work and begnning next week. For 3 days of the week, Ty goes from Splash camp, to summer school, to Annie's presschool... He's in presschool 3 days a week adn splash camp 5 days a week. All programs are great but the amount of running around we have to do in the middle of the day, well all day really, has our mind boggled with all the other pressures we have going on at work, home, etc. Did I mention we are hoping to move early fall and need to get things in order for that? So anyway life is crazy and somehow we are getting through it all and figuring it all out. Thanks to all who help us!

Love to all and happy 4th.