Microwaves, Rectangles, and Ellen

Boogers and Ear Infections and Amoxicillan, OH MY!

2012-02-07T08:57:00.000-06:00

The plague has hit this house hard! Jackson was sick two weeks ago with a horrible cold. Last Sunday, he started complaining he didn't feel well. After fevers on/off and being sent home from school with a green nose faucet, I took him in to Urgent Care. Raging ear infection. After a week of "Does your ear hurt" today was the first day he was acting like himself.

The pic above is a little boy who crawled between my back and the couch to play with my hair and promptly fell asleep on my shoulder. What you can't see is the line of drool running down my back. When he would get sick when he was younger, he would crawl off somewhere like a wounded puppy and fall asleep in the oddest places. Now when he doesn't feel well, he will only sleep in his bed or on me. Poor guy.

This week is Feeding Tube Awareness week. Jackson has had his g-tube since he was 18 months old. It's scary to think where he'd be without it. He's still a skinny minnie, but at least I know that he's getting a large part of the nutrition he needs while he's sleeping. Now that's talent!

Object du Jour: J had to take Monkey George to school today. I hope they remember to send him home. Bedtime would be ugly.

Link

2012-01-20T13:47:00.001-06:00

Link to Amelia Update on babble.com This link clears up some questions and concerns people have expressed. It also shares the big name supporters of Amelia's fight.

Self Portraits...

2012-01-19T22:05:00.001-06:00

The return of the Plague

2012-01-19T10:27:00.001-06:00

Yay, the Plague is back. Coughing, sneezing, sore throat, headache; all the good stuff. So far, only Jackson and I have it. Here's to hoping the other two stay healthy and that J's ick doesn't migrate into a fun-filled croup adventure at the Chateau. J missed school yesterday and I sent him today. The high is only supposed to be in the teens. At least school doesn't let the kids outside when it's that cold.

I don't have any newer updates on Amelia's situation other than the transplant team is going to meet with the family. Here's to hoping.

Potty training has been so-so. He still loves to sit, embraces the new seat, but hates the footstool and the timer sends him over the edge. The shower curtain must be closed and he needs to be completely naked, NO SOCKS. (This could make using the bathroom at, say, Target, a bit awkward.) He's also been pushing me out of the bathroom and shutting the door. So, it's still a work in progress.

Object du Jour: The iPad.

Team Amelia!

2012-01-17T10:54:00.001-06:00

View more videos at: http://nbcphiladelphia.com.

Recent news update about Amelia and her family!

WTF?

2012-01-16T11:00:00.000-06:00

I read an article recently by a mom whose child was denied a kidney transplant at CHOP because the child's IQ is too low and her future "quality of life" is low. I have insufficient words to describe how positively furious this makes me. Who determines quality of life? Should we only give life-saving medical treatment to those who provide the biggest contribution to society with their brilliant minds? Is this some cruel form of doctor-directed natural selection? Why provide medical treatment to people with low IQs at all? Why bother? They aren't pulling their societal weight like the rest of us rocket scientists. Where do we draw the line?

Link to Article and Link to Petition

What I also need to mention is that this child has Wolf-Hirschhorn syndrome. In short, it's the "opposite" of what Jackson has. Jackson has a duplication of the short arm of his 4th chromosome, Amelia has a deletion of that same arm. So, in an odd way, I feel like this issue really hits home. Not just it's another child with special needs, but with a small chromosomal twist, we could be in the same boat.

Please read the article and sign the petition to help Amelia get the surgery she so desperately needs. Think about those you know and love who may not qualify for this surgery under CHOPs standards. If you don't have anyone directly in your life, think of Jackson.

Potty all the time

2012-01-10T12:50:00.000-06:00

Met with Beh Psych about potty training. His suggestions were:

get rid of the little potty
buy a small seat that fits onto the big toilet
make sure Jackson has a foot stool when he's sitting (when you balance, things, um, clench, so it doesn't make things very, um, productive)
give him small things to stay entertained while he's there, books, bubbles, toys
set a timer for 3 mins. When it goes off, he's done whether he went or not. Set timer for 2 hours, try again.

So, pretty straightforward. He loves sitting there. Embraced the new seat without issue, but hasn't gone yet.

Eating has been hit or miss lately. He's decided the cool kids don't eat sandwiches anymore and they've been coming home uneaten. But, he asked for and ate one this morning before school, so maybe that's changing. Again. I've been slipping things in his purees, whole potato/sweet potato, mashed banana, peaches, pureed chicken and for the most part, he's been tolerating it. Every little bit helps.

I'm pretty sure I have the only kid on the planet that asks to do homework. Here's to hoping that doesn't change! It is a little disconcerting when he brings home math work and I can't figure it out. I have two degrees (granted neither are in math, but still) and I can't figure out first grade math. And the really sad part is, if the homework goes back to school done incorrectly, I'm pretty sure the teacher is gonna know that Jackson didn't do it alone. lol

Jameson turned 4 last week! That means he'll be heading off to school before I know it! He chose Red Robin as his lunch destination, I'm pretty sure he's just in it for the balloon. Then on Saturday, we went to Chuck E Cheese. Holy over stimulation Batman! (I'm talking about me here). The kids had fun though (Jackson took 800 pictures on the camera of random people, he couldn't care less about the games). It was really crowded with kids running everywhere. I haven't been in a CEC since Jackson's birthday a few years back and I don't remember there being armed guards at the front door. Scary the way some things have to change.

Object du Jour: The iPad.

trisomy 4p

2012-01-05T08:23:00.000-06:00

I found a Facebook group of families affected (effected? darn it) by 4p! When I joined a few weeks ago, there were less than 20, now they are up to 28! I never, in my wildest dreams, thought I would see that many of us in one place. If you a are 4p family checkin' out the blog, drop me an e-mail and I will get you the link. wjo4244 at gmail dot com

It's been absolutely amazing chatting with other families who know exactly what we go though. And, it's a little freaky seeing 20+ other children who look so much like J!

J has his first of three "potty training sessions" with the Beh Psych today. We'll see how that goes.

Jameson turned 4 yesterday! How did that happen? We took him to the restaurant of his choice for lunch (Red Robin) and on Saturday we're heading to (Lord, give me strength) Chuck E Cheese. I don't know how J will feel about it, but the boys' cousin will be there and they love her, so that may help.

Object du Jour: Dr. Suess's ABC book. That book had a good run earlier in the year and now it's back. I literally have the whole book memorized. It's scary....Big A, little a, what begins with A? Aunt Annie's Alligator, A, A, A. Like I said, scary.

2011-12-29T15:00:00.001-06:00

Jackson spells! Ignore my kid modified bedroom!

Stuff

2011-12-29T14:51:00.001-06:00

J has been a busy bee since school let out. Christmas trips, illnesses, doctors appointments; it's no wonder he keeps asking to go to school.

Poor J woke up Christmas Eve throwing up, after a fever the night before. It's become an annual tradition, I think. All he wanted to do was sit in my lap and cry, "Are you throwing up?" I gave him some Zofran, once he starts he can't stop heaving, and he was better by the time we were ready to open presents with my family.

On Christmas Day, he was much better and he and Jameson tore into their presents. Jackson's fav was his Fisher Price work light and Jameson loved Dr. Drill and Fill. Love that the simplest gifts make them the happiest! We then headed off to the other Grandma and Grandpa's where Santa left a box of Lincoln Logs (and his hat) on the porch.

J wasn't super cooperative at his eye appointment last week. A new person was training and he kept looking at Veronica (our usual orthoptist, aka Veronica Harmonica) for direction. He did a little worse than usual, so if it stays that way at the next visit, we may have to start patching again. I'm sure he will love that. Hopefully, it was just the new person throwing him off.

This week we went to dental clinic and we saw Veronica in the waiting room with her daughter. I said, "J, look who's here" and he looked at her and reached up to feel for his glasses (which were laying on the kitchen floor).

J really, really dislikes the dentist. But, I have to say, this is the best he's done. He allowed back x-rays to be taken, which we haven't gotten to do in the past. And, the news wasn't good. The Dr. found another supernumerary tooth on the left side (he also has one in the front) and his right 6 year molar is growing into the tooth in front of it. All three will need to be pulled at some point. The Dr. was going to consult with his attendings and see what their thoughts were. He said usually they consult "the literature" for guidance for kids with rarer syndromes, but he doubts there's anything out there on trisomy 4p. I told this dentist this was his chance to be published! I'm terrified about how J will handle the extractions and if it will impact his eating. He's surprised me before.

Object du Jour: The iPad. Christmas toys are way fun, but not as cool at the iPad. I just cleared 983 of J's self portraits from the iPad this morning. Maybe I'll post some, they are pretty darn funny!

J sings the Chipmunks...

2011-12-15T16:49:00.003-06:00

Monday was J's Christmas program at school. I was told he would be participating, but I was really nervous about how he would handle all the stimulation of the singing, the audience, standing on the stage...all that fun stuff. My child rocked it! Well, he stood there with his fingers in his ears, didn't cry, didn't attempt to take off running, so in my book, that's rockin' it! I'm so proud of him! They sand the Chipmunk Song by the Chipmunks and J thinks it's really funny that I know the words to that song! Also, the word "Hula Hoop" is hysterical! Unfortunately, I don't have any pictures because I was in the very.last.row. Drat. But, I did order a DVD from school of the program, so maybe I'll be able to do something with that.

Getting ready for Christmas! Jackson keeps telling me he needs a mirror and a garage for Christmas. Hmmm. Jameson just wants everything. He's getting to the stage where he wants everything he sees on TV.

The tree is up and Jackson makes sure to remind me to turn it on every morning. He's done so well with leaving it alone and not pulling the ornaments off. This is the first year for that!

Eye and dental clinics coming up in Dec.

Object du Jour: The iPad. The child is obsessed and works it better than I do!

Woo Hoo!

2011-11-12T10:24:00.001-06:00

GI this past week...J gained almost 4 lbs and is now at 93% of his ideal body weight! I'm so thrilled! Those Sunbutter sammiches are totally paying off! Granted, we still need to expand those food horizons, but for now, I'll take it!

We spent the last few days at a hotel with a waterpark near my hometown. The boys were in heaven! Their cousin came over and all three went "swimming" in the jacuzzi in our room. Jameson didn't understand why they had to wear swimsuits in the "big bathtub."

Then we went to visit my parents and their new Border Collie puppy. What a cutie she is! Unfortunately, I think I'm allergic. She licked my neck when I held her and ended up with a necklace of hives.

Today we're off to Trainfest. Jackson is so excited. He asks to go whenever the commercial comes on, but first it's off to Whole Foods to spend my Groupon on as many jars of Sunbutter as I can!

Object du Jour: Eric Carle's Brown Bear book. He loves it!

You say it's your Birfday....

2011-11-09T11:37:00.002-06:00

J was messing around with his Magna Doodle this morning and I looked down and he had written the number 10, all on his own. I asked him to make an 8 and he did! He also made a 7 on request. Wow. This kid never ceases to amaze me.

Randy took the boys to the VFW the other night to see some friends we haven't seen in awhile. I stayed home, just to bask in some silence for a few hours. Jameson came home yelling, "MOMMY! I went to the EFW with Daddy and Elvis showed up. It was creepy! Next time we go see Amy, we're going to have Stir Fry with a fish on top." I guess J tried to swipe Elvis' mic, which didn't go over well and Jameson also came home with a pocket full of screw off wine tops and 2.00. Only my kids.

OK. So according to the site I use to see where people are coming from to look at my blog...many of you are finding me because you are Googling the definition of the word "birfday." I used it in one post, a few years ago now, to show how J pronounced the word "Birthday." According to urbandictionary.com, there are a few other meanings I was unaware of. So, if you are looking for more detailed info, pop on over there. You're welcome. And for the person looking for "Whole Foods sneeze into hand, " I can't help. Sorry.

Object du Jour: Various magnetic letters and the Magna Doodle.

MG, Ryan B. and The Man with the Yellow Hat

2011-11-03T08:17:00.002-05:00

You don't know me and stop pulling my hair!

2011-11-02T10:44:00.000-05:00

Jackson just loves school. He's an uber-speller, getting 90% on most of his spelling tests thus far. He's been learning Spanish. I wondered how that would go, but he's coming home singing songs about "Donde esta?" and stating proudly, "Me llamo es Jackson!" On the flip side, he's started pulling hair. According to his teacher, he will cross a room at school to pull a child's hair. And, he's now doing it to me at home. J comes at me with hand outstretched saying, "Don't pull hair." If he's lucky enough to get a handful, he follows it with, "Pulling hair is naughty." No one seems to know how this started or how to stop it. At home, he doesn't like me walking away from him and it usually stops the pulling.

For Halloween, the boys were "Monkey George and The Man with the Yellow Hat." We even dressed MG up as Ryan Braun. They were so cute! I'll post pics as soon as we get them off the camera. Jameson loved it! He walked up to the first house and said, "I would like to have a piece of candy, please." The lady just laughed. We shortened it up to just "trick or treat" after that. Jackson followed the protocol of "trick or treat" and "thank you," but could've cared less about the candy. He did latch on to a piece of licorice that he found very entertaining for some reason.

Here's my rant for the day: Because someone has bred more or has had children longer, does not make them a superior parent. I made the mistake of asking advice on a situation with Jameson on Facebook. A woman who I only know from trisomy circles told me to because she has 5 kids, one a trier, I essentially just need to "toughen up, I have a lot of parenting ahead of me." Yep, I get that, but I'm amazed that I got so offended by someone I've never met. It made me want to go all Springer show and yell, "You don't know me!" I had to go and ask the question, didn't I?

GI/feeding team follow up next week. Hopefully, J has packed on some pounds with all the sandwich chomping he's been doing lately.

Object du Jour: J loves the "Biscuit" books he brings home from the school library.

The one where Monkey George gets left at Meatballs.

2011-10-18T11:01:00.001-05:00

After J's game a few weeks ago, my brother, his daughter, the boys and I decided to go out to lunch at Noodles and then to Yo Mama for ice cream, then home to watch the Brewer game. J had a bit of a runny nose, but seemed fine.

We eat lunch, J had a cup and some crackers and decide to walk up the street to the ice cream shop. As we're walking, J starts coughing and within seconds, he's barking, wheezing and retracting. I scoop him up and run to my car, toss Jameson's car seat into my brother's car and head to the Chateau.

It was a packed house for a Saturday afternoon. The ONLY good thing about breathing issues is that we get VIP service to the front of the line.

We're taken back to a room and a med student comes and asks a bunch of questions. The nurse comes in and starts to administer the breathing treatment which I mistakenly assume to be a Racemic Epi. Jackson barks and the nurse says, "Does he have croup?" I say, "Yes, that's what he's usally dx with when we come in." The nurse whips off the mask and says that she's giving him the wrong medication based on the med student's dx of asthma. At least we figured it out early.

This is about the time I realize (or should I say Jackson realizes) MG is not with us. I didn't remember seeing him in car, so I call my brother and ask him to call the restaurant. They say the don't have him, but my brother gives them his number in case they find him.

Jackson in hysterics without MG, that he freaks out anytime any of the staff approach him. The pulse ox and breathing treatment didn't help that.

My brother calls back about 30 minutes later saying the restaurant found MG under the table and they will hold him until we come back. Hallelujah!

Jackson responds well to the meds, so we don't have to stay overnight. We hop in the car and head straight back to Noodles and MG is sitting on a shelf behind the counter. Jackson yells, "Monkey George was waiting for you!" The look of relief on his face was so sweet. I tell the cashier, "We're here for the monkey" and he starts to laugh.

We get home and Jameson says, "Did we leave MG at Meatballs, Mom?"

Alls well that ends well.

Object du Jour: MG

Baseball!

2011-10-13T15:46:00.003-05:00

Last day of baseball! Look at that face! (He got a haircut on Tuesday, so now he can actually see!)

wow.

2011-10-13T15:36:00.001-05:00

I missed a whole month! In that time, J has started first grade and finished the baseball season.

School is going well so far! For the most part, he's excited to go and they tell me he's happy most days.

Jackson's strongest subject at school is spelling. He's gotten 90% on his first three tests! I'm nervous about this week's test because most of the words are four letters and he wasn't thrilled about spelling them for me. It's really amazing to me that he just learns the letters from me spelling them to him and reading simple stories that contain the spelling words in them. He then takes the tests at school orally because his writing isn't close to a first grade level yet.

New this is year is homework. J was really excited the first few times and now he runs from me when I tell him we have homework to do. We have to do most of it hand over hand, but he's brought little trinkets home every week for having his work done at the end of the week.

We have his first parent/teacher conference tonight. We'll see how it goes!

He's still getting to swim every week with the adaptive phy ed teacher and classroom aide once a week. They said yesterday he kicked around the pool on his own with a floatie thing around his waist holding on to a pool noodle. Never thought I'd see the day!

Baseball ended so well! He wasn't happy to be there at first and then it got to the point where he was asking daily to "run the bases." I think it helped that after the first few games his buddies were always Vicky on Tuesdays and Mike on Saturdays. They were both so good with him. There was an award ceremony at the last game and Jackson got his first trophy! 7 years ago, if someone told me my kid with "trisomy 4p" was going to someday earn a baseball trophy, I wouldn't have believed it!

Eating is still chugging along. The State (in their infinite wisdom) decreased Jackson's feeding therapy from 1 time per week to 1 time per month. My 7 year old is mainly existing on baby food and formula. We're hoping that for the next eligibility period we can get them to up it, at least a little.

Object du Jour: MG and tons of plastic letters.

Game 4

2011-08-30T22:25:00.002-05:00

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.

2011-08-24T09:44:00.003-05:00

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.

2011-08-23T09:28:00.002-05:00

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.

2011-08-22T08:38:00.005-05:00

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....

2011-08-21T13:26:00.011-05:00

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.

2011-08-19T17:01:00.003-05:00

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....

2011-08-16T20:57:00.002-05:00

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!!

2011-08-12T11:29:00.003-05:00

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!

2011-08-11T13:47:00.003-05:00

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!

2011-08-09T17:32:00.003-05:00

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...

2011-08-08T08:43:00.003-05:00

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?

2011-08-07T07:03:00.004-05:00

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!

Did he have a clown in a head lock?

2011-07-11T18:18:00.003-05:00

I picked J up at summer school last week and he had a wad of purple, green and orange fuzz in the armpit of his shirt. I asked the teacher if Jackson had a clown in a headlock at school that day. She stared at me and said that it was from an art project. I'm pretty sure she doesn't think I'm funny.

Jackson is fascinated by the fact that letters can be put together to make words. He makes me spell things all day long. He's even starting to spell things on his own. My suspicion is that J may not be a phonetic speller/reader. I think he may take the whole language/memorization approach. Only time will tell. But, I know he'll get there!

Follow up on Friday with the ENT. He feels J is doing really well and doesn't see a need at this time to repeat the bronch. I'm happy about that. The recovery from bronchs/endos is always really rough for J.

Dental appt. Finally got a good set of x-rays. The dentist is pretty sure J has some missing teeth and he also has a "false tooth" which will need to be pulled when it comes in. The decision as to how to handle all this will be made as the teeth start moving. My hope is that because his jaw is so small, the missing teeth may not matter so much. We'll see.

J has been making excellent progress in the eating arena. He loves Sunbutter and jelly on toast and in sandwiches and is doing a great job eating mixed textures. He's still pretty rigid on some things, but I'm happy with the progress he's making.

J's sound aversions have been really improving. We've gone to some local festivals and haven't needed the headphones. Monkey George has been J's buddy in handing the hard stuff.

Jameson is something else. He's hard-headed and wants to do everything himself. But he can be so sweet and funny, it all balances out (most of the time). He wants to use scissors and glue sticks, write letters and help in the kitchen. He loves sandboxes, swimming and making friends at the park. I have awesome kids!

My leg is slowly getting better. It's still really tight in the mornings and I have frequent "charley horses" and I'm pretty sure my scar scares old ladies at the pool. Back to the neurosurgeon for a repeat MRI in Sept. It the tumor comes back, we'll probably do radiation therapy.

Object du Jour: Monkey George and a bucket of Blue's Clues toys. J's been all about BC lately.

I'll post some new pictures as soon as I can.

Ch-ch-ch-changes

2011-05-29T21:37:00.004-05:00

So, Jackson is finally better. He still has a wet sounding cough, but he's back to eating and playing normally. He's been saying, "Go for it!" all week. Not sure where that came from. Got his next appointment scheduled with the ENT for July, so we'll see where we end up then.

Some bad news from the week: Both J's primary special ed teacher and his adaptive phy ed teacher are leaving. He loves both of them so much, especially Mr. S. I've met the new spec ed teacher, but don't know who's going to replace Mr. S. It's a good thing J doesn't really understand what's going on. J's swimming is up in the air now. I don't know if the new adaptive phy ed teacher will continue that or not next year.

Object du Jour: A box of flashcards of nouns and verbs that J loves pouring over. I cleaned out a closet today and he's so happy to be reunited with his cards!

"The ambulance scared you."

2011-05-26T09:38:00.004-05:00

Soooo. It's been a long week. On Monday, Jameson and I decided to head to the mall. The boys needed some t-shirts for summer, Daddy needed socks and I wanted some new Old Navy "Slip Slops" as J2 calls them. We shopped, played, ate lunch and headed home around noon. What I didn't know was that my phone was "blowin' up yo" in my purse.

We got home and I checked my Facebook page. There was a message from my friend Cathy saying, "Where are you? There's been an incident at school and they ambulanced J to Children's." My heart starting racing and the phone rang and it was the ER doctor from the hospital telling me I needed to get there right away. Randy was in a meeting in Green Bay and his phone was off, so no one could get ahold of him.

Raced to the ER, of course everyone in front of me was doing 2 mph (or maybe it just felt like it). Left my car in the valet lane and found the admitting nurse. She took me back to J's room and he wasn't there. The ER doc and ENT met me and explained that he had gone for a chest x-ray. A few minutes later, J came back, carried by his most wonderful classroom teacher and she filled me in on what happened.

At lunch, J was eating his Pringles sticks and he choked on one. They tried everything they could to get it out, but his voice was getting raspier and he was having trouble breathing. The principal made the decision to call 911.

The ER called J's regular ENT tp come down to check him out. Dr. R wanted to take J up to surgery to do a bronchoscopy to make sure there was nothing in his lungs that could cause all sorts of issues like pneumonia. They had J prepped and ready to go pretty quickly. J was still wheezing and barky coughing.

He was in surgery about 30 minutes and Dr. R came out and told me that J's airway is very swollen. He felt that J was on the verge of a croup episode, so his airway was probably mildly irritated and the pretzel stick made his airway react violently. Dr. R decided to keep J overnight for observation and put him on a 3 day course of steroids to keep his airway calm. He wants see J back in a month and repeat the bronch to see what J's airway looks like when his healthy. If there are any issues at that time we'll decide what to do then.

Wow. I hope I never, ever get a phone call(s) like that again! J was such a trooper. The IV made him horribly angry, but he took everything else in stride. I can't thank the wonderful staff at his school enough for taking such good care of him and treating him as their own. I made them all cake pop bouquets as a thank you, but that can't begin to express how thankful I am.

Poor J keeps talking about the ambulance and how it "scared you." His teacher went with him in the ambulance and she said he kept telling her, "Jackson and Mrs. W go for a ride?" I'm so relieved she went with him and he didn't have to go alone. She said he didn't cry at all until he saw me in the ER. Isn't that what we all do? We don't cry until we see our Mamas, because then we know we're taken care of and it's going to be OK.

Object du Jour: MG. The floor staff gave Jackson a pillow pet, which I think is a hamster, bear or odd looking cat. Jackson was having none of it and kept tossing it on the floor. Daddy's first order of business when he arrived at the "hobstible" was to fetch MG from my car. Seeing MG put the first smile on J's face I had seen our whole time at the hospital.

Monkey George

2011-05-17T10:35:00.002-05:00

Is this not the sweetest picture? Monkey George goes everywhere we go. He rides to school with us in the morning and waits for J in the car until it's time to come home. MG plugged J's ears at the Syttende Mai parade on Sunday to keep the noise out. I don't know what we'd do without MG.

GI and Allergy last week. Jackson passed the "baked in dairy" challenge and can now have foods with dairy baked in them. Still no raw dairy yet, but we'll do a challenge for that in August and see where we end up.

GI went pretty well. His weight is down a bit, but they aren't unhappy with it. He got his MIC-key replaced with a new AMT button. The speech therapist thought J's breathing was too noisy, so we were sent to have a lateral head x-ray done to see if there is anything causing a problem. Nope, everything is clear. Just one more thing to add to the day.

Object du Jour: MG.

"Mommy, how did your butt get so big?"

2011-03-17T10:28:00.002-05:00

Sigh. Kids say the darndest things don't they?

Jackson is finally, finally better! He went swimming yesterday with the adaptive phy ed teacher and friends from school. He missed last week, so he was happy to be back! J absolutely adores Mr. S. He talks about him non-stop. I'm nervous with all the budget cuts in our state, that J may lose Mr. S. I really, really hope that doesn't happen. I'll be standing in front of the capitol with a giant sign!

J has GI today and eye clinic tomorrow. Hopefully, good reports on both fronts, but I'm nervous about the weight loss.

Jameson has been a steady stream of questions lately. If I give a dismissive, "Uh-huh" while I'm doing something, I hear, "Mommy! Put your face at me!" Meaning, look at me and give me an answer. The barrage of questions only stops when he's sleeping.

Object du Jour: MG

Mystery Diagnosis: Solved

2011-03-12T14:15:00.002-06:00

Strep Throat and Scarlet Fever. J was sent home from school on Thursday with a 99 degree fever. He was crabby, runny nose, bit of a cough. He didn't seem too horribly sick. He slept a bit and woke up vomiting. Poor guy couldn't stop. He was burning up. Took his temp, 101.5. Changed his pukey clothes and found a red rash all over his belly and arms. He was drooling like crazy too.

Called the ped. She told me to take him in to Children's. By the time we got there his fever was up to 102.5 and his heart rate was in the 160s. The PA swabbed his throat and gave him some zofran to stop the vomiting. She came back a few minutes later and that the strep test was positive and she also said he had scarlet fever. We came home after 4 hours with more zofran and amoxicillian. Poor Jackson can't catch a break.

He's much better today, still has a runny nose, but no fever. Now we just need to work on regaining the 2 lbs he lost.

Object du Jour: MG and the two baby MGs that were supposed to be for Easter, but Jameson open the package when it came.

Tell the Easter Bunny I need a laptop and a tent.

2011-03-08T13:11:00.005-06:00

Poor J can't seem to shake whatever illness he has. He threw up several times over with weekend and had a low grade fever. He put himself to bed Saturday afternoon and yesterday after school. I'm really worried about weight loss, but I'm keeping him tubed at night and he hasn't gotten sick.

We decided after he fell asleep that germ laden Monkey George needed a trip through the washer. J woke up about 8:00 in tears because MG wasn't in the bed. I felt horrible. Randy ran to Barnes and Noble to get another one (we thought it was best to have a back up), but they didn't have any more. So, I tried to keep J calm while Randy ran MG through the dryer. J fell asleep as soon as MG was back in his arms. I've never, ever seen him so attached to anything before. He's had week or two runs with certain items, but MG hasn't left his side since Christmas. I went on ebay and found an auction for two brand new mini MGs. They look exactly like the one he has except one has a yellow shirt. I'll stick those in his Easter Basket. I think they will make smaller, more portable MG (I hope).

Jameson started asking questions this morning about the Easter Bunny after seeing a story on the news. I told him to make a list of the things he wanted the EB to bring. He told me candy, a new MG, a laptop and tent. Hmmmm, I don't know how the EB is going to fit a laptop and a tent into that tiny basket.

J went on a fieldtrip today to an indoor play area. I hope it goes well. This afternoon we have his 3 year IEP and Jameson's second trip to the dentist. He's all about the free toothbrush!

Object du Jour: MG.

Maybe I should shoot for once a month?

2011-02-27T07:11:00.006-06:00

Wow, it's February already. Where does the time go?

Jackson has been doing so well in school! He loves the Kindergarten class and has made a bunch of little friends who put notes in his backpack. I can't read what they say, but I'm sure they are pretty important!

Jackson has made some leaps in the eating front! He will now eat a whole sandwich with Sunbutter and jelly. I never thought I'd see the day! He's also eating more mixed texture soups and chunkier stews in therapy.

It's finally happened: Jameson has passed Jackson in the weight department. J2 is now 33 lbs and Jackson is 32 lbs. J still has a bit of an edge in height, but I'm sure not for long. The "are they twins" comments are coming at us fast and furious. "Oh, look! Twins, a boy and a girl!" Let's just say J2's haircut last week was not a success. He's got sort of a blonde bob going and he looks like he's channeling Darla from The Little Rascals. I think we're going to need to go in for a revision this week.

Poor Jackson ended up in the ER again a few weeks ago. I got a call from school saying that he'd had an accident and I need to come get him ASAP. I flew to school and found out that he had been running down the hall and ran full speed into the bubbler (water fountain for you non-cheeseheads) and then fell straight back on his head. So the poor guy ended up with huge lumps in the front and back. He was really off in the car and kept saying, "Help me" over and over. I took him in to Children's, they looked him over and no concussion, give him ibuprofen and he'll be fine. Every time he falls, he hits the same spot on his forehead. The upper right corner is all kinda lumps, bumps and scars.

He's been pretty healthy this year except for a icky cold this past week, so he missed a day of school.

I had a fun surgery last week on my knee. I went to the doctor with calf pain that I'd had for months, thinking I had a blood clot (thanks drug commercials running non-stop on CNNHLN!) My doctor ran some bloodwork and took an x-ray. Didn't find anything with the x-ray, but the bloodwork came back off, so she sent me for an ultrasound on my leg. The tech found a "cyst" behind my knee, which the MRI showed to be a Peripheral Nerve Sheath Tumor. Fancy, huh? Saw a neurosurgeon who said it had to come out before it took over my whole knee. They removed it last Tuesday and found that the little bugger was the size of a golf ball! I have a pretty awesome 8-9" incision on the back of my leg, which I'm sure will end up being a crazy wicked scar. A big concern was how the nerve and tumor were put together. If the tumor had invaded the nerve, I might have lost some function in my foot and had to wear a brace to walk. Thankfully, that doesn't seem to be the case so far. I'll start PT next week, walking has been really hard. They don't think the tumor is cancerous just by looking at it, but we won't know for sure until it's biopsied.

The moral of the story: Sometimes news channel drug commercial induced hypochondria isn't such a bad thing.

We're off to the Kalahari for some R&R. I can't swim with my stitches, but the boys are excited to do something fun.

Object du Jour: Flashlights and Monkey George. J2 got a stuffed Curious George for Christmas, which Jackson claimed. He sleeps with it, takes it everywhere and asks for it first thing when he gets home from school. I've never seen him have an type of attachment to a stuffed animal before. He tells me that Monkey George doesn't like the fire drills, but doesn't have any issues with going to school anymore.

I'm a slacker!

2011-01-06T09:26:00.003-06:00

Oh look at the adorable turkeys! Gah. Sorry it's been so long! I'm glad the holidays are over and now I get to listen to cacophony (how's that for a .50 word?) of noise from all the talking toys the boys got.

Jackson got a cool Fisher Price kid's iPod type thingy and a digital camera which he loves! Jameson got his walkie talkies and his Jeep, so all is right with the world!

Jameson turned 3 on Tues, where did the time go? He keeps me laughing every single day! We're working on wearing underwear and he told me, "Mom, these underwear live on my butt and there's a pocket for my phone in front."

Jackson has been pretty healthy. He has his endoscopy done last month and they discovered "moderate esophagitis", so they upped his meds and I've noticed a big difference in his eating and he doesn't tell me his belly is "itchy" anymore.

J's conversation skills have taken a huge leap. He's asking more questions, using pronouns and generally more engaged with us. Yay!

Eating is improving too. He's handling more mixed textures in therapy, but the transition to home is still in progress.

Object du Jour: Calendars. J is nuts for calendars! I made him a "star counter" like they have at school and he practices counting off the days. He's also madly in love with Curious George lately. He had to take the stuffed "Monkey George" to school for sharing time this week.

Don't like the fire drill.

2010-11-24T09:43:00.003-06:00

Long few weeks! Spent some time in the Dells, had J's parent/teacher conference, lots of doctor's appointments and just general driving around craziness!

Parent/teacher conferences went really well. His special ed teacher and K teacher are very happy with all that J is doing. He's starting to read/match sight words, put numbers in order and match rhyming words. I never thought I'd see the days when he would do any of that! He's also doing a great job interacting with peers, but needs some help to stay with the group and not wander off.

The only issue is the fire drill. One happened while J was in PT and since then, he hasn't wanted to go back into the PT room and now it's starting to effect him wanting to go to school at all. His team and I have come up with some strategies for him, so we'll see if any of them work. Poor guy cries and clings to me when I drop him off, all because he's terrified there might be a fire drill.

Jackson has met with the special needs clinic (officially discharged!) and had a feeding session with Behavioral Psych and speech. We're trying to get him to try a wider variety of foods. He's not happy about it, but he's now eating toast with Sunbutter on a regular basis.

Special needs clinic referred us to the Developmental Clinic, although I can't get a straight answer from them about what exactly J will be going there for. So, now I'm waiting for a call back next week.

Monday, J has his endoscopy. ENT said they don't need a repeat bronch, and dental didn't return GI's calls (go figure), so we'll be seeing them separately in Dec. Think good thoughts; I'm always worried about the aftermath.

J's adaptive Phy Ed teacher called last night and wants to start taking J with a small group to the Y for swimming on Wednesday ams. Yay! J loves Mr. S so much, he talks about his non-stop. This guy must be a miracle worker if he can get J to kick a ball in order to get a reward of running up the hill behind the school. My child kicked a ball and wants to run? Up a hill no less? Go for it!

Object du Jour: J is currently running around the house with a clear plastic bucket over his head, giggling like a fool.

Open the garage door!

2010-11-03T10:56:00.003-05:00

I think we're finally over illnesses! Jameson had a bloody ear and I took him in with an ear infection, he still coughs at night, but seems better.

Trick or Treating last Saturday night. Jackson told me he wanted to be an iPod, so I made a cool green iPod outfit. At the last minute, he decided he wanted to be Thomas the Train for the 3rd year in a row, so I wore the ipod suit (an older lady thought I was a remote). Jameson was Handy Manny, but he took off the hat and tool belt about 6 blocks in. People would ask what he was supposed to be and I said, "Guy in green shirt." They didn't think I was funny.

Jackson is finally back in feeding therapy after waiting several weeks for authorization of payment from the state and working a schedule with the therapist because the old time was when J was in school. He did really well and ate Sunbutter and a few chunks of fruit. Very reluctant with the fruit. Toast is still going strong.

We have GI/feeding team this week to talk more about feeding and our yearly following up with the Special Needs Clinic.

I'm off Children's on Thursday to talk to interns about what parents expect from their child's doctors. Should be interesting. Busy week!

Jackson has been obsessed with the garage door across the street. He cries when it's closed. I'm sure the people who have only lived there a few months would love to see me knocking on their door telling them that, "My child is sobbing because your garage door is closed, would you mind leaving it open? Kthxbye."

Object du Jour: The garage door.

Is it Thursday?

2010-10-15T12:25:00.003-05:00

Poor J got sent home from school on Tuesday with a 100 degree fever. I can always tell when he has a temp; his cheeks become bright red circles. He ended up staying home Wed and Thurs too with a cough and a faucet for a nose. "Go to the hopstible, they fix you right up!"

On Wed afternoon, he came to me and said, "Is is Thursday?" I asked him if something important was going on Thursday and he said, "Jackson do calendar Thursday." I felt bad that he was too sick to go to school and he missed calendar. I talked to his Sped teacher and she said J loves calendar, but didn't know of anything special on Thursday, so she was going ask the Kindergarten teacher if there was something going on in there.

Today J is much better and got to go on the field trip to Green Meadows farm with his class. All morning long I heard, "Go on a hay ride!!" Daddy has been posting pictures on Facebook, so I get to see all the action!

Object du Jour: Calculators!

Haaaaaay!

2010-09-29T21:57:00.004-05:00

J lost another tooth. It was one of the bottom center two. It was turned totally sideways. Don't know when he lost it, I just noticed the hole over the weekend. I talked with the new dentist today and he's going to try to get in on the endoscopy action and do a full cleaning and x-ray while J is out.

Over the weekend we went to Harvest Fest with Uncle Mike and Cousin Maddie while Daddy was out of town. The boys, especially Jameson, love Maddie and follow her around like puppy dogs. When Jameson woke up the next morning, he asked where Maddie was. I told him she went home and he said, "But I just wanted to give her a hug." Awwww.

At the fest, there's a giant area covered in hay. I think it's partly for the kids to play in and partly for people to use the hay to make a scarecrow to take home. J was unsure of the festival until we got to the hay area. He absolutely loved it! He kept yelling, "Haaaaaay!!!" at the top of his lungs. He rolled in it, filled our wagon with it, jumped off the hay bales, and tried to chew a piece or two. Talk about a sensory experience! He was sad to leave. I'm pretty sure he would've played in it all day.

I'm so thrilled with my decision to keep J at his current school. The staff is wonderful, they seem to genuinely enjoy working with him. He's made such great progress since the beginning of the school year. I talked with his OT and one of his aides today and they had such glowing reports for me.

J woke up coughing quite a bit last night. I rubbed some Vicks on his chest which did the trick, but before that, J kept telling me, "Go to the hobstible, they fix you right up." Then this morning he told me, "I got the chest medicine." I'm amazed at his memory and understanding of things.

Object du Jour: Back to the Cleesus.

You Should Be Dancin', Yeah!

2010-09-16T07:09:00.010-05:00

So it's been almost a month since I've written, whoa! So much has happened, I don't know where to start!

J has been to the ER twice with croup/stridor. He got the racemic epi and steroids and we waited the required 4 hours and then they sent us home. At our GI visit last week, the dr. decided that we should schedule an endoscopy to see what's going on in there. She's going to try to schedule with ENT to see if he needs to do anything in there while J is out. I want to try to get dental in there to do a thorough cleaning and x-ray too. Might as well kill three birds with one stone, huh?

J's now up to 3'2" and weighs between 28-30 lbs, depending on whose scale we're using. He's gained, so I'll take either one. Now that he's maintained a level of 90% ideal body weight, we're going to start working with the speech therapist and behavioral psych at the hospital on a more regular basis to expand his food horizons. Man cannot live on sweet potatoes and cracker snackers alone.

J started Kindergarten this year. He's split between K and the special ed classroom depending on what's going on in K. J is adoring school so far. He asks to go every day, even on weekends and bank holidays. I'm so relieved he's loving it. This is his first experience with all day, so he's exhausted when he gets home. Some nights, he's slept 12 hours! His teacher says J is doing really well and trying everything.

This is his first year eating lunch at school and so far, so good. He eats with his aide from last year and then they go read a book in the cafeteria to get J used to the noise level.

Above is his K5 pic. He's got a bit of a Barry Gibb vibe going on. Add a polyester suit and some gold chains and hello 1974! (He did get a haircut this week finally!)

J2 and I were having a bit of a chat one day and I asked him what he wants to be when he grows up. He told me a doctor because he wants to help J talk better. Aww, this kid can be so compassionate when he's not wanting to knock his brother over to get a toy.

We went to a friend's housewarming party a few weeks ago. They live on a farm with a huge well-stocked fish pond. Jameson was raring to fish with his Godfather's help. J wasn't so sure. He watched Jameson catch two fish and said, "I want a fish. I want to give it a shot!" On his first cast, he caught a little fish. He was so excited. I'm always happy to see J trying new things!''

This week I got to finally meet another trisomy 4p mom in person! We met through J's blog and she happened to be near where I live for work. We met for dinner and had amazing conversation. It's wonderful to meet someone who knows exactly how I'm feeling and what I'm going through with J. I never thought I'd get the opportunity to meet another mom with a t4p kid and I got very lucky to meet the one I did! Hope we get to do it again soon!

This weekend we went to the county fair by Grandma and Grandpa's house. The boys loved it! Jameson went on some rides and won a huge stuffed monkey in a fishing game. Jackson won a cool water game at Pick-a-duck. We picked up a yard sign for our chosen Gubernatorial candidate. His name is Scott Walker and Jackson thinks we're saying Skywalker. We sampled the fried cheese curds and lefse and headed back to Grandma and Grandpa's house.

Object du Jour: A pair of 2.00 calculators kept the fellas busy on the car ride!

Night at the Chateau, v.398954987.2

2010-08-19T07:06:00.004-05:00

Monday night at dinner, things were totally fine. Jackson started talking in this funny deep voice and then laughing at himself. I thought he was just being silly. Less than a minute later, he said he wanted to throw up in the garbage. I got him out of his chair and he threw up. Literally, seconds later, he couldn't breathe.

The poor guy would try to take a breath in and when he couldn't, he'd panic and run to the other side of the house yelling, "Gotta go to the hopstible." I called a neighbor (thanks, Lisa!) to take Jameson and J and I ran to Children's. He really freaked me out in the car because he was glassy-eyed and staring. He wouldn't (couldn't) talk to me.

We get to Children's, no spots in the ER lot. Dinnertime on a Monday must be primetime. I literally pulled up to the door, scooped him out and left the car right where it was. (Thankfully, the nurse gave my keys to a valet who moved it for me.) That same nurse heard how hard J was working to breathe and took us right back to a room.

The doctor came in and said that J must be having an allergic reaction or choking and she wanted to do an x-ray. I knew that it looked and sounded like all of our previous visits, although it came on faster than any other time I can remember. I don't think he had actually eaten anything yet, anyway. I asked her to do the epi and steroids first and then if he still needed it, we could do the x-ray.

J didn't fight the mask at all this time. I think he knew how much he needed it. About an hour after the mask and 'roids, he was almost back to normal, with a bit of croupy-type cough and a tiny bit of wheezing. They made us stay a full four hours after the treatment to make sure he didn't need another one. My fingers were crossed that he didn't need another one because Daddy is in Lamptop (Atlanta) for the week and Jameson would've had to stay at the neighbor's with J's admission.

We watched Elmo and Madagascar while waiting to go home. J kept asking for Cars, but they didn't have it.

Thankfully, the rest of the week (so far) has been much quieter. Except for this exact moment where Pete and Repeat are fighting over serving dish lids. Really.

Object du Jour: Microwavable serving dish lids. Whatever works, I guess.

2010-08-11T23:32:00.004-05:00

Gah, it won't let me comment under the Giant Slide video below. Look at how fast these people come down! I'm scared to try it myself, but my boys (all 3 of them) love it! While waiting for my guys to come down, I saw so many kids get to the bottom in tears. It looks like quite a ride! Note J's plugged ears.

The Giant Slide at the Wisconsin State Fair 2010

2010-08-11T23:30:00.001-05:00

State Fair Pics

2010-08-07T15:52:00.003-05:00

1. Jameson enjoying some "Irish Nachos" at Slim's.

2. Jackson chatting with his duck friend.

3 & 4. The crazy giant slide. Note J's plugged ears.

5. J2 wearing Daddy's "Rock of Love" hat.

Steak Fair!

2010-08-07T10:34:00.003-05:00

Took the boys to the State Fair yesterday. I knew Jameson would love it. I wasn't so sure about Jackson. He did surprisingly well and only wore the ear phones for a very short time.

The fair has a giant slide (I'll post pictures once they are off the camera) and Jameson saw it on TV and said, "I want to go there!" When he saw it in person, he was in awe. Daddy took him up the slide and Jackson watched them go up the steps and come flying down. Jameson was giggling his fool head off, so cute! While Jackson watched all this, he jumped up and down yelling, "Wanna go wheee, wanna go wheee!" I didn't think he would want anything to do with it. So, when Daddy came back with J2, I told him J wanted to give it a go. Jackson had his fingers in his ears the whole way down, but he really seemed to enjoy himself!

The other big hit of the fair, was the "gucks" aka ducks. Both boys were very excited to see the ducks. No clue why they were more exciting than the other animals. J had some sort of connection with a big white duck, who looked to be wearing a poofy wig. They chattered back and forth to each other and the duck would cock it's head every time J said something to him.

We saw lots of friends we haven't seen in awhile and tried lots of horribly unhealthy food. The Reuben Rolls were fabulous!

Object du Jour: "Cracker Snackers" J has always been a big fan of Club crackers. They now make little mini ones, that for some reason J has taken to calling Cracker Snackers. We brought a bag to State Fair and he happily munched away, he probably ate the healthiest of all of us.

Life is dream (and a highway). Sh-boom Sh-boom

2010-08-02T18:06:00.005-05:00

J turned 6 last Friday! We gave him his gifts when he woke up in the morning and I honestly think he had no clue what was going on. Jameson got it and wanted to open all the presents. Once Jackson got into opening up his goodies, he was very happy. He got a Chick Hicks hauler, a Cars case for all his cars, a Toy Story alien game and a lunchbox for school. Jameson picked out the lunchbox (Toy Story of course).

Jackson didn't have a birthday cake this year for two reasons. The first is that I couldn't find anywhere to make him a dairy-free cake without the fear of cross-contamination and the second is our stove went Kaplooey (awesome word) and I couldn't bake him one myself. The new one is coming tomorrow. Sooo, I went to Whole Foods and got J his first dairy-free/nut-free chocolate bar. He liked the fact that it broke into rectangles and was willing to hold it and lick it. That's as far as we got, but I'll take it! As for the chocoholic's (me) verdict on the bar: it wasn't half bad. It's the Enjoy Life brand and they make all sorts of things that are free of eggs, dairy, nuts, and gluten.

We've been listening to the Cars soundtrack over and over and over. J tells me daily that, "Life is a dream, sweetheart." So cute! Sh-boom, Sh-boom!

I can't believe how fast this summer has gone! It's August, wow! State Fair aka "Steak Fair" starts Thursday and both boys are very excited to go.

We got his school info for the fall last week. J will spend part time in the special ed class and part time in the regular Kindergarten class. The Kindergarten teacher is male. This will be the first male teacher/therapist he's ever had in his 6 years. He's had male doctors, but doesn't see them weekly, let alone daily. I'm really interested to see how this works for him.

Object du Jour: Anything Chick Hicks or Cars. Toys, movies, music, stickers, whatever he can find.

Just call me Slacky McSlackerson

2010-07-16T07:13:00.002-05:00

Sorry! I've been neglecting my blogging duties lately!

Jackson has two weeks left of summer school. He's still dodgy about going, but it's not as much of a fight when we get there. I'm sure once he's done, he'll ask to go 20 times a day! He hasn't had any appointments lately, which has been really nice. I just made his 6 year (!) check-up appointment. Whoa, back up the bus! When did my sweet, teeny, tiny little baby get that big?

I took Jameson to see Toy Story 3, his very first movie! He loved the popcorn and the springy chairs. He loved the movie until about halfway through when he stood up and yelled, "I want to go home!" at the top of his lungs. I convinced him to stay and he spent the rest of the film on my lap. I think the scene at the dump was a little intense for him.

I really wanted to take J to see the movie, but I was afraid it would be too overwhelming for him. Jameson was even telling me that it was too loud. The theater occasionally presents "Sensory Friendly" shows. The lights are left on and the sound is turned down. I'm hoping to take J to one of those showings and see how he does. At least he won't stand out there. He is a HUGE fan of the movie Cars. He loves Chick Hicks! Cachigga Cachigga! I downloaded "Life is a Highway" and "Get Real Gone" from iTunes and if it were possible to wear out songs on an iPod, we would've done so by now!

It's official: the boys are now wearing the same size clothes. I knew this day would come. J is still one shoe size bigger, but Jameson is closing in fast. Hand-me-ups aren't that far down the road, I'm afraid.

I gave away some baby "stuff" yesterday to a friend who's having a sale to raise money for cancer. It was mostly the bigger things, bouncy seat, car seat, swing...I thought it would be harder. I thought I would feel a sense of sadness, but I didn't. Maybe it's because those aren't the items that hold the fondest memories for me. I did keep two buckets of clothing that I can't bear part with. I have sweet memories of what was going on while they were wearing them. Each kiddo has a small keepsake box of little things that hold memories for me. Someday when they are older, I'll give them the box and tell them why each item is there.

Object du Jour: The "dark" iPod. J had me draw an iPod on a dark green piece of paper with a white pencil. He even slept with it last night.

I'm a slacker!

2010-07-02T21:08:00.004-05:00

Geeze, we've been so busy, I haven't been posting very regularly!

Let's see...the birdies grew up and flew away last week. They ambushed me when I was getting the fellas in the car one day last week. I'm amazed at how quickly they went from eggs to flying away. *sniff*

Jackson is still iffy about summer school. He asks to go, but when we get there, he doesn't want to stay. I haven't heard about any issues while he's there though.

We spent two days this week at Summerfest. It's a large music festival with food and lots of stuff to do. Monday was Kid's Day and there was several kid friendly activities. Jameson's favorite part was the milk carton shaped key chain he was given when we bought him some milk. Easy to please, he is. I was worried that Jackson wouldn't be comfortable with the sound level there. I brought the headphones and he asked to wear them within a few minutes of being in the park. About halfway through the day, he took them off and handed them to me. No crying or upset. He's asks to go back daily. Hopefully, the 4th of July festivities will go just as well.

The fellas are in love the the talking Buzz Lightyear at Target. We have to go check him out every time we make a Target run.

The next two pics are from Summerfest. J wearing is earphones enjoying contraband pretzels and J2 sampling some chocolate/strawberry Dippin' Dots.

Object du Jour: Chip Clips. J's been carrying them around today. He's very happy with the blue "rectangle clip."

Go to the up!

2010-06-21T11:35:00.007-05:00

It's been awhile since I've posted. Busy few weeks!

Jackson finished 4K/EC. It was sad because he'll be moving on from the people he's been with for the last 3 years. He'll be at the same school next year and move between the special ed room and 5K. I really think we made the right decision keeping him where he's at.

We spent the last week at Grandma and Grandpa's house as Grandpa had surgery last Tuesday. We helped Grandma around the house and got her back and forth to the "hopstible" to see Grandpa. Hopefully, he'll be home in the next few days.

Today is the start of summer school for J. He'll be going half days, M-R, for six weeks. J cried when we left and didn't want to stay. When Daddy brought him home, J said, "Go back to school!" all the way home. He's with one little guy from his regular class and when J saw him come in, J visibly relaxed a bit.

J had dental clinic and things look good. There's some concern with the size of his lower jaw and how that is going to affect the big teeth when they come in. We'll cross that bridge when we come to it, I guess. His dentist is moving out of state, so we'll have to see someone new at our next appointment.

When J wants to be picked up or put down, he says, "Go the the up!" Don't know how that started!

Mama Robin decided to build her nest in the bush right outside our back door. This is her second year with us. There were two eggs when we left for Grandma and Grandpa's house and now there are two sweet babies.

Object du Jour: We love cruising the sale aisle at the Walmart by Grandma and Grandpa's house. On this visit we found a big Handy Manny doll with his tools and toolbox for 5.00! The fellas love it! He fits into the HM pickup truck J got last year for his birthday. Score!

Jameson decided on a small Woody from Toy Story. When we got home, J flipped Woody over and looked at the bottom of his feet. He handed Woody to me and said, "No name." I was absolutely shocked that he noticed that the doll didn't say, "Andy" on the bottom of it's boot. When TS is on, I didn't think Jackson was paying that much attention. Wow!

May I see your license and registration, please.

2010-06-05T21:24:00.003-05:00

We went walking around our neighborhood today for the annual neighborhood association rummage sale. We didn't see anything we could live without until we came upon the Little Tikes Cozy Coupe Police Car! Both fellas jumped out of the stroller, Jameson jumped in it and Jackson made a beeline for the light up talking radio. There was no way they were leaving without it. The sellers were asking 25, we asked if they would take 20, they said, "Sure!" Wow, that was easy! It's in excellent shape and the boys are in love with it. It goes nicely with the firetruck we already owned.

Tonight was the very first meal I served (in the history of ever, it seems) that Jackson was able to try a bit of everything the rest of us were having. I gave him a plate with homemade sloppy joe meat, snap peas, and french fries. He actually tasted a bit of all three, but mainly stayed with the fries (naturally), but I'm so proud of him for trying everything. It was wonderful for the whole family to be eating the same thing! After a bit of coaxing, he also ate a bowl of Jello for dessert.

Object du Jour: The police car.

Potty Training, I DO IT (Hold me!)

2010-06-03T09:38:00.003-05:00

We've begun potty training in earnest with both fellas. Jameson gets it. I bought him a pack of Pull-ups yesterday (Toy Story - score!) He understands to pull them up/down on his own and he tells me (for the most part) when he needs to go.

I'm pretty sure that Jackson just likes being naked. He'll ask to go potty and then just want to run around with his tushy hanging out. He's gone on the potty twice, but I don't think it was purposeful. We'll keep trying.

Jameson has entered into the, "I DO IT" phase. Oh, joy! I'm happy he wants to do things for himself, but it takes him a half hour to put his slippers on. LOL

Jackson only has a week left of school. This year went so fast! He's not going to understand why he doesn't go anymore. J loves school so much! We'll start summer school two weeks later, so that will help.

Object du Jour: The Phyllis Root library of books. Seriously, the fellas love her books! We've gotten from the library: What Baby Wants, Rattletrap Car, Kiss the Cow and we own One Duck Stuck. I bought Rattletrap Car from Amazon; it's become such a favorite. Her books are full of funny made up words and they often rhyme. Jackson loves this! And what I find even more wonderful, is he is starting to predict lines in the books and says them along with me. I will do whatever it takes to make sure I raise readers that love books as much as I do! So far, so good!

On The Air!

2010-05-28T12:43:00.004-05:00

Jackson's radio debut! He we all are at the WKLH Miracle Marathon for Children's Hospital. We shared J's story and hopefully it inspired people to donate big! Honestly, it was such a blur, I don't really remember what I said.

Jackson was fascinated with the "On the Air" light. One of the DJ's told J he could ask for it to go on or off. J did and the DJ turned it on/off for him, but then J didn't stop and was yelling, "Turn the square light off!" during the interview. Randy took the boys out so I could finish talking.

They gave each of the boys a toy, Jameson got Buzz Lightyear and Jackson got a shape puzzle. The whole family got admission to the art museum. When the interview was over, we were sent upstairs to get a family picture taken. The photographer said that our picture might show up on a billboard someday. Yikes!

It was wonderful to see the other members of the Family Advisory Committee that came down to support us. Thank you!!

Some of the stories from other families I've listened to over the past few days have been heartbreaking. I'm amazed and inspired by the strength of families who have lost a child. Injuries, multiple surgeries, heart defects, cancer - I continue to remind myself no matter how hard some days get, how lucky Jackson truly is. He is defying every odd we were initially given. And much of that is due to the care and support we've gotten from the hospital staff.

Object du Jour: The shapes from the puzzle.

iPad and Miracle Marathon

2010-05-26T13:07:00.003-05:00

When I dropped J off at school today, his teacher told me they'll be trying out an iPad in the classroom for the day. I know what we're going to be talking about for the next 3 months (at least).

On Friday morning, we'll be telling J's story on the WKLH Miracle Marathon for Children's Hospital. You can listen live at http://www.wklh.com/ Please donate if you can!

Object du Jour: The ABC book and a picture of a woman listening to a very old school radio. J has named it, "Listening to the iPod."

ETA: I picked J up at school and the whole way home he yelled from the backseat, "Go back to school!! See the iPad!!" So, I guess the practice run with iPad went well to say the least. I looked into them and they are about 500.00. A little bit pricey for us right now, but maybe they'll go down in price like the iPhone and iPods.

Ducks make fire drills

2010-05-21T13:50:00.004-05:00

Eye clinic today. The booger is now 20/30 in the right eye and 20/40 in the left. I really think his scores (aside from the wandering eye) are mainly based on interest in the items on the screen. The orthoptist started with the apple. Nope, he's not gonna do it. He's gone so many times that he's now shouting out requests. "Square! Rectangle! Microwave! Freebird!"

He saw a laminated card with letters on it and she asked if J knows letters. I said yes, so she brought letters up on the screen. No problem. Got them all correct, but kept asking her to show him the X. So, now I don't need to worry if the date of the visit is a "feel like talkin' about apples day," we can go straight to letters.

When we were finished, the orthoptist said J could get a sticker and a Beanie Baby. She put a few on the counter for him to pick from, a duck, moose, elephant, lobster and bear. No interest, but he did ask if there was a microwave in the bucket of animals. I chose a duck because he's been very into hearing stories about ducks lately (One Duck Stuck by Phyllis Root, check it out - compelling reading). We get out into the lobby and I show him the duck. J tells me, "Ducks make fire drills." Just in case you were wondering where fire drills come from. He happily carried the duck to the car, until I strapped him in the seat and he says, "Want the elephant." *sigh*

The end result: get him to wear the glasses as much as possible. J has been better about wearing them at home and will put them on by himself. Often times, upside down, but progress is progress!

Today is "Hippie Day" at school. J is clad in jeans and a Summerfest tie-dyed shirt. It's the same shirt that causes people to think Jameson is a girl.

Object du Jour: A Yo Gabba Gabba toy video screen.

Syttende Mai, Earphones, First Naughty Note and My Soapbox.

2010-05-19T11:11:00.005-05:00

Let's start with the fun stuff!

This past weekend we went to the Syttende Mai festival in Daddy's hometown. There's a parade, rides, craft fair, food and music. The parade part always concerns me for Jackson. He spent last year huddled under a blanket sobbing. This year, he watched every single second, commented on what he saw and talked about going back ASAP. The difference? The sound blocking earphones I bought a few months ago. They've been practicing wearing them at school, so when I first busted them out at the parade, J said, "Fire drill?"

New foods this past week include: Kettle Corn and bacon. J has been really rockin' the toast lately. Yay!

J came home from school yesterday with his first "naughty note." I guess at the band/chorus concert (which he thoroughly enjoyed while wearing the earphones, btw), he pulled a girl's hair. When the teacher told him not to do it, he did it again. Stinker! I read the note and had a little chat with him about being nice to our friends. He took it all in and turned to me and said, "Dot Com!" Glad he was listening and thinking about his behavior. The teacher said the girl wasn't upset, but hopefully, it won't happen again.

And now for the Soapbox portion of the program...Nothing bothers me more than to hear people refer to people with special needs as a special needs child or a Downs child or an autistic child. These kids are kids, first and foremost. You wouldn't say a cancer child or a heart defect child or chromosomal disordered child. Jackson is an adorable little boy who happens to have a diagnosis. The diagnosis does not define who he is as a person. I know I've posted something to this effect before, but it's worth repeating.

Object du Jour: The Yo Gabba Gabba pieces and parts.

Can I get a do-over?

2010-05-08T21:54:00.003-05:00

This has been a really long week...

My car died at J's school and the custodian had to come out and give me a jump. He really was not happy to do so. I'm pretty sure I need a new battery.

Then, we finally go out and get a new gas grill. Menard's had an awesome one on sale. We pick it up, take it home, Randy starts putting it together and we realize, it's the wrong grill. Gah! He talks to the manager who said they can only take it back if it's fully assembled. So, poor Randy had to spend the evening fighting with a grill we weren't even going to keep. We have the right one now (which is still sitting in the box!)

Then, the water heater died. I'm never, ever going to take hot water for granted again. I had to boil water to wash dishes and we ended up giving the boys baths in the sink with boiled water. But, the new one is now in and working. I just had the best bath of my life!

Then, last night I notice that the cat bite on Jameson's calf from earlier in the week has a lovely 3" red ring around it. I called the ped last night who told me to bring him in today. Yep, infection city. Now he's got a 10 day course of augmentin. His first prescription ever. If it doesn't work or gets worse, we go back in. Word of warning: If you ever visit my house, do not make eye contact or even think about the cat. She's just kind enough to let us live here.

Then, I show up for my haircut this morning and my stylist tells me that I wasn't on the schedule for today. She was in the middle of another haircut when I got there. Seriously? It's on my Google calendar, which I live and breathe by. She said she saw me on a few days ago, but then it was gone and thought I had canceled. Nope, not me. She's so darn wonderful that the squeezed me in anyway. I adore her. If you live near me and need a stylist, drop me a note. She thinks what happened is someone with a similar name canceled and they took me off by mistake.
On a happy note: We'll be telling Jackson's story on the radio on the Children's Miracle Marathon for Children's Hospital at the end of the month. Very exciting!

Object du Jour: A plastic letter X, occasionally known as the "criss cross" and the Dr. Seuss ABC book. He's sleeping with both now.

If you go to Carget for Elmo soap, don't forget your legs.

2010-04-28T09:18:00.003-05:00

We've been trying to give J a variety of sensory experiences to help him integrate his environment better. An OT suggested we let him play with funny foam in the tub. He absolutely hates it. If it floats near him, he starts to panic. J2 (naturally) loves it. They take baths together, so it's a bit of a challenge.

J2 asked for some "Elmo foam" yesterday in the tub (Elmo is on the can). I squirted the can and it was empty. J2 said, "Go Carget, get Elmo foam. Take Jackson and legs with." I'm happy he remembered his legs and his brother!

J has just been pouring over picture books lately. It's interesting to see what he zeros in on in pics. He sees things I didn't even notice were there. His favorite picture (lately) is on of me sitting on the couch holding a very newborn J2. He has titled this great work of photogeraphic ('member Bozo?) art, "Watch the news." I must watch a lot of news. LOL

I think I posted a few weeks ago (and frankly I'm too lazy to look) about J's teacher using a paper iPod with changeable pics on the screen of what J should be doing next. When she comes to get him from me when I drop him off, the iPod has a pic of the classroom on it. She told me yesterday that he responds so much more readily to the pics on the iPod than to verbal directions. She can repeat a directive several times and he won't move, but she shows him the iPod and he's on his way. I've always thought that J was much more visual than auditory. I guess this proves it!

J has started calling the Banker's lamp on my computer desk, "Elvis." Hmmm.

Object du Jour: The photo books and the letter X.

Gorman no more and hooray for toast!

2010-04-25T08:07:00.002-05:00

J finally got a haircut on Friday. We had to see someone other than Mr. Tim because he was out of town. This is the first time in the history of ever that J got a haircut from someone other than Mr. Tim. I think it was harder on me than on him!

Daddy got J in the chair and the stylist thought J was 3. No biggie, happens all the time, he gets into more events for free that way. Ha! She asked him what he wanted her to put on the TV and he said, "Watch the news." That's my guy, always staying up on current events! The cut looks nice, we've been keeping it a bit longer because they don't have to use the clippers that way, which freak J out.

I was talking to another SN parent at a SN parent meeting and she (Hi Jennifer!) asked if I noticed J's nails growing a lot faster on the formula. I hadn't thought of it before, but I do need to clip J's nails twice as often as I do Jameson's and he's now gotten two haircuts to Jameson's one. I think there is something to this theory!

I was making toast for everyone yesterday morning and J asked for a slice. I made one for him and cut it into rectangles. He ate almost the whole thing! Yeah toast! Now I'll gradually move to adding things to the toast like jelly or Sunbutter and see how it goes.

J came home from school on Friday with the mother of all iPods! It was huge! And, it had AAA written on it. He calls it the "giant iPod!" But even better, he came home with an Ellen mask. Someone at school made him a paper plate mask with a tongue depressor handle with Ellen's face on it. I laughed so hard when I pulled it out of his bag! I'll get a pic of J with it and post it.

Object du Jour: The Thomas ABC book from his Scholastic Book order. We're also very into Chica Chica Boom Boom and Dr. Seuss's ABC book. Noticing a trend here? LOL

See? (Missing the 'stache though)

2010-04-18T13:03:00.001-05:00

Forget the Beatles, we've now entered Gorman Thomas territory

2010-04-18T10:00:00.007-05:00

Yeah, so they both need haircuts. Mr. Tim, here we come!

We went to Kid's Fest yesterday with my brother and niece. Jackson cried at the noise for the first 15 minutes or so and then he was fine. He looked at many of the exhibits and commented on what he saw. That was great to see!

We got all sorts of goodies and Jameson won a cool purple soccer ball. J2 and his cousin had a great time together. They waited in line to get a balloon animal and shared their treats. It was fun to see!

Object du Jour: A piece of paper with T A X written on it. Why that's fun, no clue.

PS Look, it's a creepy Gnome! Just in time for Syttende Mai!

The Chateau v. 2890232098.2

2010-04-10T09:36:00.002-05:00

Off to the Hopstible last night with a little boy who was dancing on the kitchen floor in socks and wiped out right on his forehead. I don't know how we're going to teach this guy to get his arms out when he falls. The bump on his noggin was instantly huge, but he didn't throw up or lose consciousness.

I called the ped on call and he felt because Jackson couldn't tell us how he was feeling or if his vision was blurry, we should go into the ER and have a neuro exam done. The doctor at the ER felt J was doing OK and that we should bring him back if anything changes. Just give him ibuprofen every 6 hours.

He's fine this morning, but there's a nasty bruise right above his right eye. Poor guy. After it happened, he kept holding the big bump and yelling, "Get the medicine!"

Object du Jour: The Thomas blankey and an iPod.

A new fashion trend!

2010-04-09T14:51:00.000-05:00

Aaaand, this is what happens when I bring the laundry up from the dryer and leave the basket unattended. He was having a full-on phone conversation on a roll of parchment paper at the grocery store yesterday. It went like this: "Hello? Yes, yes. Packers!! Bye!" Oh, this child cracks me up!

Jackson is having a whiny day today. He keeps telling me he needs medicine. I hope and pray he isn't getting sick. He wants to go to school so badly. Poor fella asks every day if we are going. The weather wasn't so hot for his Spring Break. Snowing yesterday, but at least it's sunny today.

Object du Jour: The letter game. J keeps asking me to make it do rectangles and then gets very upset with me when I tell him it doesn't make rectangles. Good thing he's back to school Monday. He's getting a bit of cabin fever, I think.

Look at this face!

2010-04-08T07:57:00.002-05:00

How can someone this adorable cause so much trouble? I can't believe how big he's gotten so quickly! He amazes me daily with all the things he knows.

Object du Jour: A giant iPod on a huge piece of paper!

Stand in awe of the cuteness!

2010-04-01T13:17:00.003-05:00

Look at this face! Missing tooth, rectangle glasses and hair like a Beatle (or a Jonas Brother, you can pick your own reference!) He's so stinkin' cute!

Object du Jour: The rectangle game and all the rediscovered outdoor toys. It's finally warm enough to play outside!

Eyes, Milk and Peanuts, Oh my!

2010-03-30T13:39:00.004-05:00

Eye clinic today. J's eyes are still 20/50, which the orthoptist is happy about because he hasn't gotten worse. So, we'll decrease his patching to two days (4 hours total) a week and check again in 2 months to make sure the level is still consistent. Then we'll go down to 2 hours a week and if he's still doing the same, we'll stop the patching and he'll only wear the glasses.

Got the written results of the allergy labs in the mail today. Haven't gotten these before, so it's interesting to see the actual levels. The items tested are rated 0-6 (absent to very high) depending on the blood levels. He's "moderate" in milk and whey and "high" in peanut. He's very close to "very high" for peanut.

Got to break out the sidewalk chalk, bikes and lawnmowers for the fellas this afternoon while I did some yard work. I roped J2 into picking up pinecones for me for a bit until the novelty wore off.

J is "Star of the Week" this week at school. We made a poster with pictures of J and his family, his favorite song and color and things he likes. So we glued on pictures of iPods, Ellen, the Elmo microwave, toy catalogs and Yo Gabba Gabba. He did a great job coloring it and helping me write his name and mark his age by drawing candles on a cake.

Object du Jour: We did take an iPod to eye clinic today, but he's been really loving that new Leap Frog letter toy.

2010-03-29T16:11:00.001-05:00

Doesn't everyone wear a Sombrero while checking their e-mail on the world's oldest laptop? Ole!

2010-03-29T15:40:00.001-05:00

The missing tooth!

2010-03-29T15:39:00.001-05:00

What do you mean I can only find 6?

2010-03-29T15:38:00.001-05:00

Yeah toast!!

2010-03-29T15:37:00.001-05:00

Guitar Hero! Note the backwards Pj's. If I don't zip 'em up backwards, I find a nakey baby in the morning.

Waitin' on the Tooth Fairy!

2010-03-27T13:18:00.003-05:00

J lost his first tooth this morning! I was pulling off his turtleneck and saw a bit of blood on his lip. I looked in his mouth and saw the gaping hole. It's the tooth that he hit on the shopping cart and the dentist told us it would probably fall out earlier than normal. J doesn't seem to be bothered by it at all. The hole unfortunately allows more food to fall out of his mouth, but hopefully he'll get the hang of it quick.

The Tooth Fairy is bringing J a Leap Frog letter game. He doesn't understand the concept of money, so at least this is something educational.

We went on an Easter Egg Hunt this morning. There were a lot of people there! J didn't seem to have a clue what was happening, but he didn't cry or panic. Jameson had to hold onto both buckets. He liked petting the real bunny and gathering up the eggs. Neither kid was a fan of the Easter Bunny himself. They both loved opening up the eggs they found and seeing what was inside. There were some really cool treats like an ice cream cone from Culver's, a kid's meal from Rocky Rococo's and a 5.00 gift card to Stonefire Pizza plus game tokens from Stonefire, candy, and little Easter trinkets. I'll post pics after we get them off the camera.

Object du Jour: J had to carry an iPod all through the egg hunt.

Don't snoozie or you'll miss the newsie!

2010-03-26T11:22:00.003-05:00

J started saying that yesterday. He thinks it's hysterical!

The doctor from the allergy clinic called today. No change in milk or peanut, so he's still allergic. She did say that the data on milk is older and there's a slim chance he could outgrow it by age 12. Peanut is probably lifelong. Peanuts are pretty easy to avoid for the most part. I would love to see him outgrow milk, as that would open up so many more foods to him. I guess we just wait and see.

J is "Star of the Week" next week in JK. He also has to bring snack, so "French Fries" for everyone!

J's new food: toast. He's fascinated by it. I made him a slice yesterday and he told me he needed "jelly" aka Sunbutter on it because that's what I was having. I put a thin layer on the toast and he nibbled a bit on it and didn't seemed bothered by the Sunbutter. Yay!

Going to bed has been really rough for J the last few weeks. He asks nightly to sleep in our bed. He starts out in his bed and one night we found him asleep on our floor and another night asleep in our bed. I'm not sure what the issue is; I wish he could tell us more. Nights when he's on the pump aren't a problem; he knows he can't get out of bed.

At school, J now has an "iPod." His teacher made a iPod that has changeable pictures from the PECS program that show J where he's supposed to go. When I drop him off at school, she hands him the iPod with a picture of the classroom and he goes straight there. She said so far it's been helpful at keeping him focused on where he's supposed to going or what he's supposed to be doing with minimal distractions. Hopefully, it continues! Clever idea!

Tomorrow we're going to attempt an Easter Egg Hunt with the fellas. I know J2 will love it, we'll see how it goes with J.

Object du Jour: "Mommy's Book" J's speech therapist made him a book last year of different rooms in a house with objects labelled. Jackson has really been obsessing over this lately. He calls it Mommy's book, but I have no clue why.

It's all fun and games until Elvis gets lost at the Hopstible

2010-03-18T14:32:00.003-05:00

GI today. 29 lbs, 1 oz. 38 inches. We saw beh psych, speech, nurse and nutrition. They are happy with his small weight gain considering the pound he lost when he was sick. We talked about food ideas, ABA therapy and how Jackson is doing in general. They thought that Beyonce as a motivator to try new foods was pretty funny. Surprisingly, they don't have any other Beyonce addicts on their patient lists.

Overall, they were pleased with how he is doing and were impressed with how well he ate the crackers he stole out of my bag.

After we met with the team, we headed downstairs to the lab for allergy and GI panel blood work. Poor J cried so hard and kept yelling, "Take it out, take it out!" She took 8 vials of blood! And to add insult to injury, she put a circular band-aid on the wound.

J had to bring a fistful of iPods along to the Hopstible and unfortunately, Elvis didn't make it home. We lost him somewhere between GI Clinic and the Lab. The woman at the lab looked at us like we were nuts with J yelling, "Finda Elvis!" over and over. I really wonder what the person who finds him will think.

On the way down the skywalk to the parking ramp, J kept collapsing and between sobs would yell, "Finda Elvis", "Rectangle Bamdaid", and "Make a new Elvis!" I made him a new Elvis and packed him up and sent him to school. Hopefully, all was right with the world at school.

Object du Jour: The iPods.

Happy St. Paddy's!!

2010-03-17T09:44:00.008-05:00

I have both boys dressed in green to celebrate their 1/4 Irishness! He was yelling "Uff Da" this morning in his green shirt; I guess to celebrate his 1/2 Norwegianness! Green is totally J's color. I didn't realize it at the time, but I dressed in him green for all 3 of his school portraits.

Jackson has just been amazing me with his language lately! He was sitting at dinner last night and he said, "Mommy, come over here." I know, it doesn't sound like much, but a whole appropriate sentence with perfect eye contact!

Eating has been going well! He tried a Beech Nut puree last night of sweet corn and rice. I mixed in some sweet potatoes to make it a little more familiar to J and he ate two jars! As I'm typing this he's standing here munching on "french fries" aka Veggie Stix. He still prefers dry and crunchy over everything else, but we're going to keep working on it!

Stopped at the health food store last night after hearing that there's such a thing as "dairy-free" mac and cheese in the frozen section. They didn't have any, but I did find a boxed dairy-free
mac and cheese to try. Hopefully, J will like it. I'm on a mission to find foods that J can eat for lunches next year that will not look too odd to the kids around him.

Just rambling today, I'm sure I'll more to say tomorrow after the GI visit.

Object du Jour: The Ellen and Elvis iPods. Good thing they're easily replaceable, J loves to chew on them. Sorry about the lack of pictures lately, the camera charger is MIA.

Apple seriously needs to look into making an Ellen iPod.

2010-03-11T14:13:00.004-06:00

We had J's 3 year update IEP meeting yesterday. I was very pleased with what everyone had to say about him (man, they all know him backward and forward!) The plan will be to have him go to summer school for education and speech and then stay at his current school next year for 5K and Spec Ed plus therapies. I really wanted to keep him where he is now and luckily everyone (all 12 of them, nope not intimidating at all!) agreed. He will be in school all day, which means lunch and recess and he will also get adaptive PE.

Sadly, his speech therapist is retiring and he'll have someone new next year. That's really a bummer because he talks about her a lot and she celebrates J's achievements just as much as I do. We'll really miss her.

I found out at the meeting that J actually has a few little friends in the JK class. It makes me so happy to hear that! There's Catherine, who was the peer in his class last year and I think J is crushing on her a little, Aidan, who he's known his whole time in EC, Victoria, who greeted J today when we got to school and Christian, who thinks coconuts are just as funny as J does. His teacher told me that the kids are all very careful and protective with J and slow down on the stairs when he's on them. I hope it stays this way and no one ends up being mean to him because he's different.

Allergy clinic visit today. Saw the new dr., she seems nice, but was in/out very quickly. Our old allergist moved back to Israel. We really liked him and I was sad to see him go. The plan is do another RAST for milk and peanuts and if, by chance, the peanut comes back negative, we'll do the skin test just to make sure. I'm going to hold onto the script and have the blood draw done when they do his GI panel; I want to minimize the sticks as much as possible.

GI/Feeding Team next week. According to the scale at Allergy, J is 29 lbs, 2 oz, so he's gained back what he lost when he was sick and then some. Hopefully he break 30 lbs soon!

J has been much more interested in food lately. He absolutely loves these Veggie Stick things that are a baked crunchy snack made out of vegetables. Between J and J2 (and maybe I helped a little) the bag is almost gone already!

Object du Jour: The Ellen "iPod." The resident asked J was he was holding and he said, "Ellen, Ellen, Ellen." I told her it was an Ellen DeGeneres iPod and she just gave me an odd look and went back to asking milk related questions.

The Magic Kingdom

2010-03-07T09:55:00.003-06:00

We just booked our hotel for DisneyWorld in October! I'm so excited! Jameson is going to love it! I'm worried about Jackson's reaction.

I ordered him a set of sounding blocking ear muffs, which came Friday and he wants no part of. Jameson has been wearing them on his forehead since I took them out of the box. My plan is to get J used to them over the summer at festivals and State Fair, places he normally says are "too loud." Visually, I know he'll love Disney, auditorily, not so much.

The boys played in the noodle bucket most of the morning. Jameson loves to scoop, dump and "cook." Jackson popped the dried noodles in his mouth the second I opened the container. He'll eat that, but not regular food. Now we're off to find something to do outside because it's supposed to be in the 40's today. Heat wave!!

Object du Jour: The Ellen iPod with a side of noodles.

In the interest of equal time...

2010-03-06T07:05:00.002-06:00

March is also:

Save Your Vision Month
National Kidney Month
Workplace Eye Wellness Month

and contains:

School Breakfast Week
National Problem Gambling Awareness Week (I need to have a talk with Jackson about this)
National Poison Prevention Week
and for the love of everything holy: National Root Canal Awareness Week *shudder*

Last night we went to watch a friend show his Great Dane, Lucy. Holy cow, that's a big dog and she's just a puppy! She stood a head taller than the boys, but is very sweet.

Jackson was afraid at first, and kept telling me the "Arf Arf too loud" whenever a dog would bark. (There were shows of different breeds all over the auditorium) I told him the doggies were talking to each other. He seemed to accept that and was pretty much OK the rest of our time there.

Poor Lucy got second place because she had a bit of a swollen foot and couldn't trot they way the judge wanted. She didn't seem to mind though and was happy to lay on the floor and let the boys pet her.

This morning both boys have asked to go back to "Lucy's house."

Object du Jour: Still the Ellen iPod.

Faces of Trisomy video

2010-03-05T09:33:00.001-06:00

Here is the Faces of Trisomy video from the 2009 SOFT Conference in VA. Pictures taken by Jude Wolpert. Unfortunately, we didn't make it last year, but I hope to make it to the meeting in South Dakota in July.

Object du Jour: Nothing cooler than an Ellen iPod.

TRIS

2010-03-04T08:49:00.003-06:00

http://web.coehs.siu.edu/Grants/TRIS/kidsofTRISDateOrder.html

Here's another great organization you may want to learn more about:

TRIS - Tracking Rare Incidence Syndromes

TRIS has been collecting data on kids with different types of trisomy and they make this data available to parents, doctors and other professionals working with kids with trisomies to increase the global knowledge base. This helps determine courses of treatment and therapies, but also helps show that a trisomy dx is not always, "incompatible with life" as some doctors like to say.

Jackson is on his 3rd year of participation in this project. He was also one of their featured kids in 2007. You can see his little two year old face in the link above. Wow, that seems like forever ago!

Object du Jour: I can now draw iPods in my sleep.

FYI

2010-03-03T07:41:00.003-06:00

http://www.marchofdimes.com/professionals/14332_1209.asp

For more information on chromosomal abnormalities, here's a link to the March of Dimes website. It's written in parent-friendly language, which many of the pages I find are not.

March is Trisomy Awareness Month!

2010-03-02T08:43:00.002-06:00

Please keep all these amazing babies, kids and adults in your thoughts and prayers. Not all trisomy children are as healthy as Jackson. We are very, very lucky and I remind myself of that daily.

Please consider a donation to SOFT:

Trisomy Awareness Month
Support Organization for Trisomy 18, 13 & Related Disorders
2982 South Union Street
Rochester, NY 14624-1926
(800) 716-SOFT (7638)
(585) 594-4621

www.trisomy.org

Same stuff, different day.

2010-03-02T07:29:00.004-06:00

We're wrapping up our last morning in the Dells. We ended up staying at the Great Wolf Lodge instead of the Kalahari because the Kalahari only had one night for us instead of two and they were sold out the other night. We haven't stayed here before, but it's pretty nice. I love the areas in the waterpark they have for the smaller kids. Jameson loved it, especially the play jet skis with the squirting handlebars. J wasn't a huge fan of anything. See the picture in a previous post with J with his fingers in his ears? Imagine that same pose only with a soaking wet child in a bathing suit.

He eventually came around on our second night and was OK if I held him in the larger pool. I had to sing parts of the Vampire Weekend song to make it more bearable. After a bit, he was smiling and laughing. He thought the giant water-dumping bucket was hysterical, if only a little bit too loud.

J didn't like the arcade much either. He stood with his fingers in his ears with tears leaking out of his eyes while Jameson played a game. J2 won a rubber snake out of a machine on the first try. I had to spend another 6 tokens to get a sobbing J one too. Maybe I shouldn't just let Jameson try again, he was much better at the game then I was!

This has been a nice little vakay! Back to reality this afternoon!

Object du Jour: I wasn't thinking and only brought one "iPod." It ripped in half after J sucked on it all weekend. He was not a happy camper after that. The snake has helped him feel a little better.

A snake says, "FFFFFFFF"

2010-02-26T08:27:00.002-06:00

Jackson has been playing a letter fishing game at school. He came home and talked about it non-stop. I asked his teacher about the game and she told me where it came from. When I looked into buying it, it turns out the game would be over 50.00 with shipping. Yikes! So I went to the local teacher store and improvised my own game. I bought a bucket of giant magnetic letters and we made our own fishing poles and it came out to less than 20.00.

But, the whole point of this is to say that I'm amazed/shocked/thrilled at how many letters he knows! And, not only that, but he knows about half of the letter sounds! For the first time, I actually feel like J could learn to read! I've been showing him how to sound out words (like Black Pepper on the infamous pepper box). He seems to somewhat understand it!

I showed him the letter F and asked him what it says. He said, "FFFFFF, like a snake." He just brought me a D and said, "D for Daddy." Holy cow! Who is this kid? We've got post its everywhere with words on them that he's asked me to write. We've got a long way to go, but I'm optimistic we'll get there!

Off to Grandma and Grandpa's on Saturday and Sunday and then to the Kalahari Sun-Tues. Can't wait!

Object du Jour: Letters, post its and words!

Check It Out Now, Funk Soul Brotha...

2010-02-23T09:13:00.003-06:00

I've now discovered that Fatboy Slim is a great motivator to get a certain someone eat scrambled eggs. "Eat" being a bit of a broad term, but he allowed three separate pieces of egg in his mouth briefly and then promptly spit them out. No gagging or tantrums, so I'd consider it a success! At first, he would blow the egg off the spoon and quickly stick the spoon in his mouth like he'd eaten it. Stinker. Hopefully with continued exposure, eggs can be a new food to add to the list.

I've been amazed lately with the continued expansion of J's conversational skills and the questions he's been asking. I've heard that he's talking more at school as well.

The boys are currently having a blast with a Handy Manny paint with water book. Who knew two small people could make such a mess with less than a 1/4" of water?

I got to head out on my girl's weekend this past weekend and no one cracked their head open or ended up at The Chateau. Success!

Object du Jour: Still the iPod pictures, but with a twist. I have to write out the whole alphabet on one side of a piece of paper, and on the other I have a draw an iPod with AAA or XXX on it. The AAA is for Vampire Weekend's A-punk song and the XXXs, I'm not sure. He calls them "criss crosses" though.

For everything bad I said about Walgreens...

2010-02-15T16:25:00.002-06:00

I just want to give a shout-out to Florence! She rocks!

Object du Jour: A picture of iPods from this week's Target ad.

If you like then you shoulda took a bite of it...

2010-02-14T17:53:00.010-06:00

I've have now found the best motivator for J to try new/textured foods...Beyonce. He adores the song "Single Ladies." Tonight I told him if he took a bite of his spaghetti (it's Gerber, but it's chunky with noodles in it), I would put on the song for him. He tried a couple fake out bites and I would play a second or two of the song. It went this way for a few minutes and finally he took a bite and got to listen to more of the song. Finally it got to the point where he was chowing on the spaghetti and boppin' along to the music. I'm just happy he's eating and trying new things. And if it takes 5 rounds of "Single Ladies" to get there, I'm all for it. I'll never get the song out of my head, but hey, it's worth it! (Lame post title I know. That's all I got.)

We went to a birthday party for J's cousin yesterday at an indoor playground. I got there a little early to let J acclimate to the new environment. He did ok until more people started to arrive. Then he walked around with his fingers in his ears. He eventually started to cry and kept running out of the main room. Thank goodness the boys' cousin was there, he took Jameson around and helped him on the climbing structures while I held J.

The first pic is J closing out the noise at the party, the second pic is J imitating the cat stretching in the sunshine, and the 3rd pic is J with his boatload of Valentines and treats from his school party.

The last pic requires a little more explanation. J loves the way light shines through things. On the bottom is a light up aquarium from Aunt Donna. J placed the Elmo microwave on top to see the light shine through and tossed in the kitchen timer for added measure. He put different things in/out of the microwave for a long time. Interesting to see how his mind works.

Object du Jour: J is loving his Handy Manny phone.

Best Buy's House

2010-02-11T20:05:00.002-06:00

For a 5 1/2 year old boy, you'd think Toys R Us would be the place he begs to go. Nope, Best Buy. Heaven on Earth! They have microwaves, Wiis, phones, and iPods all in one place! Amazing, right? He runs from thing to thing giggling the whole time.

We went to BB tonight to look for maracas for the Wii. When I met the teacher that J may have next year we started chatting about the Wii and how she uses the Wii Fit board in the classroom. (J doesn't weigh to activate the board) I told her that using the Wiimote has been hard for Jackson because there's too many things to push. She showed me the maracas and told me about the games they go with. The Wiimote fits inside the maraca and all he has to do is shake it. Sounds cool! They didn't have any at BB, so I'll have to order them online.

Then we went to TRU to find a b-day present for the boys' cousin. I also got them a little Valentine treat. Jackson will be getting a cool Handy Manny phone and Jameson will be getting his very own broom/dustpan combo and some candy. Exciting huh? I know J2 will flip over the broom, then maybe he'll leave my mop alone.

Object du Jour: Still the paper iPods. I tried to find a toy iPod at TRU with no luck.

Are you seeing this???

2010-02-09T10:07:00.003-06:00

Jameson has figured out to make a "fort" in the living room with the fold out Little People village. He blocks off the entryway by the front door and wants us to sit in there with him while he makes "foffee" in his kitchen set. When Daddy and I are busy, Jameson settles for strong arming Jackson into sitting in his fort. He'll grab J by the shirt and drag him to the living room. Needless to say, J is not a fan of this at all. After being manhandled several times by his brother, Jackson looks at Daddy mid-pull and yells, "Randy are you seeing this!??" We laughed so hard. Poor Jackson!

Things are in motion for next school year. Jackson will get rechecked at school in all areas and then we meet with the team March 10th to discuss the results and decide what the plan is for next year.

Up to 15" snow today. Ugh! So far, school is still on. Maybe we'll have to go for a sled ride later.

Object du Jour: Still the bucket of magnet letters.

Ahem

2010-02-07T20:44:00.002-06:00

ORTHOPTIST. Yeah, that's the ticket.

Object du Jour: A rediscovered bucket of magnet letters. J knows more letters than I thought he did.

P.S. Daddy took the boys to the children's museum today for 4 hours. Absolute Heaven! Got lots of stuff done and then just sat and enjoyed the silence for awhile!

We don't need no stinkin' apples!

2010-02-06T20:16:00.005-06:00

Wowza, this has been a long week. We somehow survived without too much damage to anything or anyone! Daddy came back last night, so we took the boys to the domes to see the trains and feel a bit of spring. They were having a Chinese New Year festival as well, so the boys got some chocolate coins for good luck.

J had a follow-up eye clinic appt this week. The opthortist feels that J's vision is 20/50 in both eyes; last time one eye was 20/50 and the other was 20/80. I think the test results are very dependent on how cooperative J is feeling that day. She asks him to label black and white block images of a circle, apple, house and square on a computer screen across the room. J doesn't feel any love for the apple picture and refuses to label it. I know that child knows what an apple is! He (naturally) loves the square and the house and will begrudingly label the circle. It didn't help (or maybe it did) that the peanut gallery, aka, J2, sat munching on a bag of veggie sticks and shouting out the correct answers. We now patch him MWF and he wears glasses only on RF. We'll go back in two months and see how it goes.

J's been getting a touch more adventurous in the eating department. He will actively chew and swallow peas and green beans without issue! He's OK with baby food meats, but had a fit when I mixed some ground beef into a puree. We're getting there!

J2 is talking so much lately! He's able to ID the sound of any animal. When he's asked what Daddy says, Jameson says, "Duuuude." When asked what Mommy says, he says, "No, no, no, no" while waggling a little finger in the air. Yep, I guess that sounds about right.

Object du Jour: An orange DVD case. Why that's fun, I'll never know.

Carns in my pockick.

2010-01-31T11:16:00.003-06:00

I think we're finally coming to the end of illness round 187.3 for the '09-10 winter season. Jackson has major green nose and Jameson has had a few croupy sounding coughs, but it hasn't become full blown. *fiercely knocking wood*

We tried Jameson out of the crib for a week. After a week of him running around the room, emptying drawers and jumping on J's bed in the middle of the night, he's now back in the crib. He climbs out of the crib, but at least I can catch him before he's totally out. We'll try again when he's say, 16 or so.

So, with both boys sick, the freezing cold weather and daddy gone for week, I've had to get creative to keep the boys occupied. J2 and spent a good hour coloring with half of that spent on him putting, "Carns in my pockick." I have a pocket on the front of my shirt that I now know can hold a lot of carns.

I've also made a boatload of iPods out of scrapbooking paper. I even got fancy and made green ones (just like mommy's) with pictures the the boys in the center. J is thrilled with these. He took his to school and I had to explain to his teacher what it was.

C'mon spring! Seriously, that groundhog better not see his shadow or we're going to have a problem.

Object du Jour: The pink suitcase. But apparently, I didn't find the right pink suitcase. I had no clue we had more than one. This is going to be a long week.

The Cough - yet again

2010-01-27T10:44:00.004-06:00

J woke me up at 5 am saying his mouth hurt. He's got "The Cough", but no strider or neck retraction. I'm keeping him home from school and I'll call the ped and see what she wants us to do. I really don't feel like a night at the Chateau. He seemed a bit better after sitting in a bath for a bit.

I really want to get whatever this is resolved ASAP, because Randy is gone all next week and naturally that would be the time for something to happen.

ETA: Appt with the ped at 1:00.
ETA2: The ped didn't hear anything concerning in J's lungs, but she did hear the cough. We have a prescription for orapred and J will get that for 3 days. The cough is still pretty icky, but he's acting fine. Keep your fingers crossed that we won't have to venture out this evening!

Object du Jour: Mommy's green iPod.

One of my most favorite pics!

2010-01-24T16:21:00.000-06:00

Coconut Sit

2010-01-23T21:29:00.005-06:00

Random pics. The top one is J and the little pink camera that appeared out of nowhere. The middle one is J figuring out how to shine the flashlight through the most awesome Pinpression. And the last pic is the blue-tongued birthday boy.

J has been wandering around saying, "Coconut Sit" all day. Yes, I'm sure it's "sit." I have no clue where that came from or why it's so funny. Lots of coconut talk lately.

I went to a new support group today. I was invited by a mom of a kiddo in J's class. Great group of ladies with kids with varying disabilities. Everyone was so friendly and supportive!

Tomorrow I think we'll head to the train show with the boys. J2 has been obsessed with trains lately and wants to know why the train isn't waiting on the tracks by J's school every day when we drop him off. Should be a good time!

Object du Jour: Still the JCPenney book.

ETA: Yes, I realize the boys are wearing the same shirt in the last two pics. Grandma got them matching outfits! :)

The Itchy Rock Star

2010-01-21T14:47:00.002-06:00

J informed me this morning that he's an "Itchy Rock Star." Alrighty.

Not too much going on around here. I've been joining some local autism groups looking for some parents to chat with. I doubt I'll find too many parents with kids with dual diagnoses, but maybe I'll get lucky. I'm looking for some ideas of ways to handle J's whining and quick escalation of upset. For example, if I don't hop to and fill his cup before the first request is out of his mouth, he's in tears. He often tantrums if I have the nerve to say, "Wait a second and I'll get it." Doesn't matter if I'm up to my elbows in dishwater or changing J2's diaper, he wants it yesterday.

J2 had his two year check up yesterday and his first dentist appointment today. Both went great! I'm so pround of how well he handles himself (when he's not coloring his shoes or the wall with a Sharpie!)

Object du Jour: The JCPenney catalog from Grandma. It has a full page of "Mommy's green iPods." (Randy got me a cool green iPod Nano for Christmas and the boys are obsessed with it!) That page looks like it's been through the washer.

We are puke free!

2010-01-14T10:28:00.002-06:00

J made it through the whole night without getting sick AND he was hooked to the pump! Yay! I ran it at 60 instead of the usual 75 and I'll work on getting it back up to 75. I know he's lost weight, which for him is never a good thing.

He seems finally back to his old self this morning!

The boys have been fighting quite a bit over toys. Jameson seems to want whatever Jackson is playing with. Jackson finally had enough this morning and asked me to fire Jameson. I got a big laugh out of that!

Object du Jour: The JC Penney Christmas catalogs from Grandma. I think we've finally found a replacement for the beat up Target flyer.