Game 4

Words cannot express how proud I am of Jackson. He did so incredibly well tonight. He had a new buddy tonight; Mike said he had to miss some Tuesday games. I was a bit nervous about how Jackson would handle the change. His new buddy for the night, Kelly, is a Kindergarten teacher, so she knew what to do. She had to chase him a bit, but he swung the bat with little help, ran the bases with some help to stay on track and there were no tears at all. I love this kid.

This is a busy week. Check up tomorrow for J and then he starts first grade on Thursday. This summer went so fast.

Object du Jour: MG and some binoculars.

Game two.

Jackson had his second game yesterday. Max wasn't there. I really hope we didn't scare him off. J had a new buddy, Mike, who handled J
like a pro and Randy and I didnt need to take the field at all.

For this game, they started out with the players lining up along the baseline for the National Anthem. Then each player's name and hometown was announced before every bat. It was very professional.

We decided that J is an awesome "utility player." He played every field position in one inning. Even Prince Fielder can't do that!

Jackson has been asking to go to school daily and asking for the teachers who left. Hopefully, all will go well when he gets to school next week and meets the new teachers.

Next Wednesday, J has his 7 year check up and Thursday, school starts.

Object du Jour: MG and the letter X.

Crap.

Four boys went on a wagon ride last night and only three returned. BUMG is gone. Looks like back to Target I go.

Object du Jour: An orange plastic letter X. There is a nuclear meltdown if it gets misplaced. At least we still have original MG.

Monkey George is broken.

He's on to us. We have two MGs. We got the second after two ugly episodes. The first was when J threw up on MG and couldn't sleep until he was clean from the dryer. The second was when MG stowed away in the back seat of the car while Daddy was driving to Chicago. That was a rough night. I went to Target and got BUMG (Back up Monkey George).

When MG gets dirty and can pretty much stand up by himself, he gets tossed in the washer and BUMG comes out. J can totally tell the difference between dirty, smelly MG and clean, Downy fresh MG. And, it's not pretty.

For at least an hour after BUMG comes out, he's kicked and thrown around and I'm told over and over that, "MG is broken." He told me this morning, "Don't want MG with a broken mouth." Hmmmm, that's a new one. When I said, "OK, I'll put him away," he immediately said, "I want MG."

So, he's torn. I much prefer fluffy, clean MG, but J prefers stinky, dirty MG. He's currently standing on MG watching Curious George on TV. I guess whatever it takes.

Object du Jour: The new pop sensation: MG and the BLUE harmonica.

Turns out, Tom Hanks was wrong....

There IS crying in baseball.

Jackson had his first game yesterday. It was raining pretty hard when we got to the field, so we weren't sure if the game was even going to happen. J figured out where we were and started yelling, "Run the bases!" I thought all was going to be hunky dory. Buzzzz, wrong answer, thanks for playing.

The Brewers were out in the field first. J was paired with his buddy Max, a high schooler, who was talked into coming by his older brother. Bless his heart. Poor Max chased J all over the outfield and tried engaging him as much as he could. Then J decided to just walk off the field. He saw me and started to cry. So, Daddy went out onto the field with Max and J. It went pretty well after that (with a lot of chasing done by all). Even though J wanted nothing to do with any balls that came his way.

Then the Brewers were up to bat. J didn't want to wear the batting helmet. Fine. So, Monkey George, Max and Daddy helped J bat and then he finally got to run the bases and score! Hooray!

Then, ugh, back to fielding again. He cried and didn't want anything to do with going back out there. So, this time I went out with him. I tried telling him that Corey Hart's mommy doesn't hold him in the outfield. Yeah, no dice. He screamed, he cried, "I want to get in Daddy's car!" Poor Max just stood there with his hands in his pockets. He did try many times to engage J and I do give him major props for trying.

To be fair, J wasn't the only one having a tough time. One child kept yelling, "GET OFF ME!" at his buddy. Another got just past first base, sat down and refused to get up. Another wandered the field when his team was up to bat with his buddy trailing behind.

But, some of the kids were so darned excited to play! Whether they were in walkers or wheelchairs, they were out there doing it! Some batted off a tee, some were pitched to, and some like J, just skipped batting all together and just ran the bases with Monkey George, Max and Daddy all running behind.

What was so wonderful was the support the kids got when they were up to bat! The director announced each child's name when they came up to bat and the crowd cheered, "Go Jackson, way to go!" J and all the other kiddos got many, many hi-fives, pats on the back and words of encouragement.

So, I think the first game went pretty well, all things considered. I'm hoping this will just be a learning curve for J and once he knows what to expect, he'll be OK. I know I can't wait to do it again, the jury is still out on J, even though he woke up this morning asking to run the bases.

Object du Jour: MG and the pink harmonica. (Sound like a pop group!)

Read this.

http://www.schuylersmonsterblog.com/2011/05/just-word.html?spref=fb


I don't know how to do that fancy clicky linky thingy. But, what I do know is what is written in that link is the most articulate piece I've ever read on why it's not appropriate to use the "R" word.

Announcing the newest member of the Crew....

Jackson! We went to the Miracle League field tonight to check it out and pick up J's uniform.

He was acting really squirrely in the car and I think it's because he knew we were going somewhere for him, but he didn't know what to expect. He kept covering his face with Monkey George and asking me to play "AAA" on "Mommy's Green iPod" over and over. (AAA is Vampire Weekend's song "A-Punk, I'm pretty sure he's into it strictly for the alphabet reference.)

We got to the field and checked-in. Jackson was given a Brewers jersey (#3 Betancourt) and a hat. The bigger kids got Phillies jerseys. Nothing against Philly, but I'm glad J's a peanut! ;)

The kids got to run around the bases, which J loved! He kept yelling, "Run the bases, tag up!" He stepped back and watched the other kids, most were wearing their jerseys, and said, "Want to wear the shirt." I put his shirt and hat on him and off he went. That gave my heart a little squeeze! He looked like such a big boy!

There is such a wide range of abilities in the kids. Some have walkers, some wheelchairs, some walk independently. I can't wait to get started; they were all so excited to be on the field!

The director gave a little speech thanking everyone for coming and Jackson is yelling, "Want to have the microphone!" People around us were giggling. Only my kid.

Go Crew (big and little!)

Object du Jour: I cleaned out an air vent today. I found: a crayon, a penny, the letter x, a peg for the pegboard, 8 Fisher Price apples for the town, the plug for the piggy bank and a Matchbox car. All because J screamed need the X for a half and hour until I finally figured out what and where he was talking about. Good Times.

Cover the shylish!!

OK. This refusing to eat if my mole, scar or shylish (toe nail polish) is getting out of control, so I called the feeding team's Behavioral Psych for backup. He told me to give him 15 minutes to eat or be fed and if he continues to refuse he's done until the next meal. Oh, boy. This could get ugly.

Jackson is a grazer. He will munch on things all day long, but never really finish anything. This isn't helping him with his weight at all. So, I also talked to the BP about getting some menu planning going. I need help to plan meals for him that meet his caloric and nutritional needs as well as his pickiness. I need a schedule. I just need help. So, he's going to put Jackson on the team meeting schedule for Tuesday and then he'll call with some ideas.

G-tube update. I asked the VNA if there was anything other brands I could try, nope. So, she said I could try MIC-key extensions, instead of AMT extensions with my Tuesday delivery. No leaks or disconnects all three nights since we got them. Hmmmm. I don't understand why we can have the MIC-key extensions, but not the button. At least we had a pretty dry week, I'll take it! I found out what AMT stands for: A Mess Tonight! Thanks for the laugh Debbie! I needed it!

Next week, Jackson will be starting baseball with the Miracle League. It's a baseball league for kids 4-18 with disabilities. The field is rubberized for safety. Each kid gets a buddy that helps them bat, field and navigate the bases. I can't wait for him to start. My guess is that he's not going to be happy for the first few games, but I really hope he ends up liking it!

Object du Jour: A bag of clothespins from Ikea. You can clip 'em to anything! Good times.

Coffee and Genetics and a Magnifying Glass!

Can I just say I love my Genetics team? Dr. B is awesome and the genetics counselor is pretty cool too!

We had a nice discussion about J and how wonderfully he's doing. We talked about moles and feeding and the wonder of chromosomes and Monkey George. They also let Jameson have a Reader's Digest, a Snoopy sticker and 3 paper measuring tapes, for keeps!

They both gave me their e-mails so if I come across any questions from the blog that are posed to me, I can call for back up or if I have any questions with anything going on with J.

Jackson came running to me yelling, "Get the coffee!" He threw the coffee pot half full of coffee down the stairs and it dumped all over the landing. At least it wasn't hot. I've learned to unplug the coffee pot as soon as I make it and then just warm my coffee in the microwave. He's also fascinated with coffee grounds and has held his own ticker tape parade in the kitchen with grounds right from the container. My vacuum cleaner smells like Starbucks.

He's taken the spell things up a notch. I now have to spell into a magnifying glass which then sends J into fits of giggles.

Object du Jour: MG for the doctor visit and the magnifying glass the rest of the afternoon.

Spell a-m-a-z-i-n-g!

Whoa. I know Jackson has a spelling obsession. He asks me to spell words all.day.long. It's exhausting; I'm probably spelling words in my sleep.

So today I got tired of spelling and turned it around on J. I asked him to spell the words he normally asks me to spell. He can spell out loud: Jackson, our last name, Jameson, cat, kitty, mommy, daddy, up, down, on, off, light, radio, exit, news, car, no, Monkey George, truck, cup and he spells "coffee" ffee. He even recognizes a lot of the words written on paper. Buddy, you just raised the bar!

(I so needed this after the g-tube debacle!)

Object du Jour: A harmonica. Oh, the harmonica. I'd rather spell things.

The one in which I rant about the joys of a g-tube...

He needs it. I get it. J's oral intake isn't enough to sustain him. Between the texture aversions, pickiness, food allergies and just plain general disinterest in food, he's not gaining enough weight. This is where the g-tube comes in.

We got the tube placed when J was 18 months old. Jackson is hooked up to the pump every night to (fingers crossed) get 500 ml of formula. Ever since the powers that be at the hospital and VNA decided that the AMT mini was a "much better option" (read: cheaper) than the MIC-key button, my life has been all kinds of hell. I wonder if there was parent input into this decision? The nurse who did the inital swap between the MIC-key and AMT, extolled the virtues of the AMT like it was a shiny new Chevrolet. "Ooooo, look! The balloon is apple shaped and not round like that nasty old MIC-key."

Imagine stripping a bed (and child) up to three times a night. Imagine all that laundry and lack of sleep, which makes all that laundry so much more fun. Also imagine, a whiney, sleepy child, who has been dragged out of bed to be stripped, redressed, retubed. And, even without the disconnect, imagine how much a tubed kiddo can pee, so even with night diapers and diaper cover, the bed still needs to be stripped at least once per day.

Almost every night since we got the new, amazing, waaay better new button, Jackson has been unhooked from the pump multiple times a night...which means the bed gets fed more than Jackson. As far as I can tell, the bed's weight is right on target.

And then there are those who mean well (I hope), but just don't get it:

"Oh, if he gets hungry enough, he'll eat on his own."
"Gee, I wish I had to tube to feed me, ha, ha, ha."
"He really doesn't just grab food off the table and eat it? He must be so hungry?"
"Oh my gosh and golly, I know just what you are going through, I can't get my son to eat broccoli for anything." Riiiiight.
"Can't he just have a teeny, tiny bit of ice cream? All the other kids are." (Sure, if you want to administer the Epi and call 911, go for it.)

So, yes, I'm going to talk to GI and the VNA. Maybe there's some magical step I'm missing, even though last night I pinned that tube to J's jammies within an inch of it's life and it was STILL unhooked this morning.

I want my MIC-key back.

*end scene*

So how old is Jameson's younger brother?

I knew it was coming someday, but that didn't make it any easier. We were at a friend's party last night and there was a woman there who had met Jameson before, but not Jackson. I don't blame her at all; Jameson is a filled-out kid, who's a bit tall for his age. Jackson is my skinny little minnie boy.

I wish I had a quarter for every eyebrow that shoots to the sky when I answer the question, "How old is he?" Again, I knew it was coming...

Jackson turned 7 on the 30th! How did that happen? He finished summer school the day before and we've been running every day since. We had a birthday party at Grandma and Grandpa's and Jackson had a awesome Thomas the Train cake (which he refused to try.) We finally decided to get an iPad and download the apps they use at school. It was expensive, but if it helps him, I'm all for it!

He loves staying in hotels and swimming in the pool! We've been to parties, the air show at a friend's condo, State Fair and the Mall of America. He has now gotten to the point where he takes it (mostly) in stride. We've haven't used the ear phones at all this summer!

And, (for me) one of the biggest steps forward has been eating in restaurants! We had gotten to a point that if we wanted to eat out, we had to bring it home. I think restaurants were sensory overload for J. We've eaten out a few times recently and he's done really well!

Now, on the flip side, some things are still pretty rough:

Eating. We've really had to up his intake at night because during the day it's really been a fight. He's decided he won't eat if my toe nail polish, the mole on my arm or the scar on my leg are visible. We've tried having Daddy to feed him, but he wants me to do it. Bit 'o manipulation going on, I think.

The car seat clip. He unbuckles the top clip of his car seat and gets his arms out to try to reach things around him. On the recent trip to MN, I can't tell you how many times I had to climb into the back to buckle him back in. I got some ideas from another parent to try; I'll report back.

Wandering. If Jackson sees an open garage door or something else he wants, he leaves. He scares me to death because he doesn't show any fear about losing us. At the party last night in a friend's backyard, Jackson saw a neighborhood full of open garage doors. Randy and I had to tag team to keep him where he was supposed to be.

Because of the wandering, I've been trying to get Jackson to wear a medic alert bracelet. I got it from a running store online. http://www.roadid.com/ These bracelets are meant for runners in case of emergency. I went with this bracelet because it was less expensive, more adjustable and I could put more information on it. Sounds lovely, right? He won't wear it. Freaks out! Sooo, I found another company called http://www.tigtagz.com/ The nice thing about these is that they are disposable, like paper bracelets at the hospital and they have monkeys on them (score!) He's not thrilled about wearing it, but he tolerates it. I made it super simple, the top line says, "I have special needs" and the next two lines are my cell and Randy's cell. I even put one on Jameson at State Fair and crossed out the top line. I told Jameson if he gets lost, to find a mommy and show her his bracelet.

Genetics this week. Can't wait for Dr. B to see how much progress J has made in the last two years!

For Heidi: http://www.sunbutter.com/ :)

Object du Jour: Fruit crisps! J loves dried fruit from http://www.brothersallnatural.com/ (it's the blog of links today!) I found some at the grocery store last night and when I showed the bag to J he whispered, "Fruit crisps." I just wish they had more calories in them!