Turkey Day, Elmie and Grandma and Grandpa's House

Whew. Long weekend. We crammed in as much as we possibly could!

On Thanksgiving, we went down to a resort near my hometown to have brunch with my family. The resort is decorated to the hilt every year. Last year, it was a Peanuts theme. This year, it was storybook characters like Wizard of Oz, Cinderella and Alice in Wonderland. The boys loved looking at the houses in the Gingerbread contest. My niece was so enamoured with them that she wants to make one next time she comes to my house. I'm going to head out this week and see what kind of kits are out there.

On Friday, Jameson and I went to Elmo Live with my niece, her husband and their two kids. The kids had a blast watching the characters singing and dancing. Jameson was hypnotized through the whole thing (see last pic above). J2 also decided he's rather sit on the steps than in a chair. I think he could see better that way. He got a light spinner with Elmo on top and tried his first Sno cone. At one point during the show, he burst into tears. My niece said that Jameson was crying tears of joy seeing Elmo up close and personal. I like that!

I didn't take J to the show because I knew he'd freak out about the sound level. I wish I could take him to stuff like this. But, Daddy and I took him to see The Wiggles when he was two, so now it was Jameson's turn to see a show at two.

After the show, Daddy and Jackson picked us up and we drove to Randy's parent's house to stay for the weekend. The boys were super excited to hang out at Grandma and Grandpa's house. Mommy and Daddy even got a night out with no kids. That doesn't happen very often at all!

On Saturday, it was 52 degrees outside, so we went for a drive. The boys sat on the lap of an unusual looking Santa at Walmart, they tore through the toy aisle, making it very clear what they neeeeeeded for Christmas. We then headed to a cool park with lots of swings, slides and things to climb on. Amazing that it was warm enough to spend the day at a park after Thanksgiving!

Since the hospitalization last week, J's nose has been running like a faucet. My niece gave me a pack of "Boogie Wipes." These are saline wipes for runny noses. Awesome invention! We used up the pack she gave us and went to Walgreens to get more and they were on sale! Score!

We drove back last night and now we're back to another fun-filled week of reality!

Object du Jour: All the flags at Grandma and Grandpa's. J loves the flag night light and flags on a stick. He also loves the battery operated candles. Fun stuff. This morning the Fisher Price catalog is a big hit!

Just because I haven't posted a pic in awhile...

WEAP Eval

J was evaluated today at the WI Early Autism Project. He did well and was cooperative for the most part. The two doctors watched him play and asked me a ton of questions. The bottom line is that the testing done today shows that he falls right in the middle on the autism scale in the mild-moderate range. This is the same result as the initial testing in July. The only difference is that this doctor may choose to put the label PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified) on J rather that autism. The doctor feels that he would benefit from therapy, which can be up to 35 hours a week in our home.

Now comes the really hard part, the funding. I'm going to call our insurance and see how much, if any, of the treatment they will cover. If the won't cover any of it, we'll have to wait until J comes up for waiver funding sometime next summer. It's really, really expensive and there's no way we could pay for it out of pocket.

Object du Jour: The doctor had one of those rectangular peg thingys (I have no clue what they are called) where you can put it over your hand and the pegs form to your hand. J was in love. When she left and had to take it with her, he wasn't happy. All the way home in the car, he kept saying, "See rectangle later?" I think I know what else to tell Santa to bring this Christmas!

ETA: It's called a Pinpression. It took me tons of Googling to figure that out! But, now I know that Target has them (according to their "Find It at a Store" button.

Yet another night at the Chateau

J woke up last night at a little before two and was screaming, "Fix it mouth!" He was struggling to breathe with strider and a croupy cough. I quickly got dressed and scooped him up and ran to Children's. After a racemic epi and a round of steroids and many, many viewings of the same Blue's Clues tape, they let us come home around 8 am. The doctor gave me a script for steroids, so hopefully, we won't have to go back any time soon because out of 10 (!) ER visits for croup, this is only the second time we've gotten to come home without an admission. *knock wood*

I was really pleased with how well J did with everything this time. He accepted the mask with little fight and was content to watch Blue's Clues from the hospital bed, even with the pulse ox on his toe. I guess it is a little sad when ER visits become routine for a little guy.

He had a dirty diaper while we were there and I asked him if he needed a new diaper. He looked me right in the eye and said, "Take a look." J has really been throwing me for a loop lately with his vocabulary and sentences!

I got a good nap in when I got home (thanks honey!) and now the boys are down for a nap. I hope J sleeps because he was so crabby!

Object du Jour: Blue's Clues is always the cure for what ails ya!

Little Willie...Willie won't go home!

While we were cleaning today, we had the radio on. The song "Little Willie" by Sweet came on. Randy came into the kitchen and told that the band had played somewhere near here recently. End of discussion. At dinnertime, we had the radio on again and J came to me and said, "Oh Sweet." I thought he was just making conversation and he then said, "Oh Sweet on the rectangle music." Wow. I didn't even think he was paying attention to the earlier conversation. He just continues to surprise me daily.

We had parent/teacher conferences on Friday. Overall, the team is pleased with what J is doing, but I hear the same thing over and over...he prefers to do things on his own terms rather than on request. Yep, that's the J I know and love, Mr. Hard Headed. He needs to practice horizontal and vertical strokes, recognizing letters and numbers, rote counting and his conversation skills. He's doing well integrating into the JK class, but needs direct one on one instruction to complete the tasks presented. J is staying with the group during stories and is interested in what the other kids are doing at table time. They said he handles the noise level pretty well, unless it's a sudden outburst.

We also talked a bit about what the plan is for next year. The original idea was for him to come back to our home school for K, but it's all day with no pull-out services. I'm pretty sure we're going to have to rethink the plan as it gets closer to the end of the year. I just don't know if he's ready for that yet.

Tuesday is the WEAP (autism) eval. I'll report back on how that goes.

Object du Jour: Daddy brought the boys some neat gadgets from his work trip last week. A cool wireless mouse that lights up and a hand crank flashlight. Fun stuff.

Dear Ellen...

My life would be a whole lot easier if you put your name back in the rectangle in the lower left corner of the screen. According to J, the name without the rectangle just isn't cutting it.

Love,

Me

4p12p16.3

Got J's microarray results in the mail. They may as well be written in Greek, because I don't understand a lot of it. But, in talking with the Genetic Counselor, she says that there is nothing concerning in the duplicated region. According to the written report, his duplication includes 279 genes and is 43-Mb (megabases) in size, which is quite large. It also states that he has "pure" trisomy 4p, meaning there aren't any other chromosomes involved and that this is usually the result of a rearrangement in one of the parents. This isn't true in our case, Randy and I were tested and we are both "normal" (which is open to debate, depending on who you ask!) Interesting info, but I guess it doesn't really give us anything new.

Object du Jour: I went downstairs to swap laundry and the boys found a big basket of toys that they haven't seen in awhile. I brought it upstairs and they dug through it for the longest time. It was like Christmas! Jackson found a disposable camera and has been playing with that most of the morning. He had to take "Chick Hicks" and "The King" to school with him this afternoon.

Just found out that J's little trisomy 4p buddy, Gracie, lost her battle with H1N1 yesterday. Please keep her family in your prayers. They now have a beautiful little angel watching over them always.

Happy. Birthday. To. Yoooouuuu.

We went to a cool place yesterday for a friend's birthday party. It's an awesome indoor playground. I wasn't sure how J would do, but once we let him check the place out for a few minutes, he loved it! Jameson had a blast the second he stepped foot in the door. There's a giant play structure with slides, a smaller little kid friendly play structure, baby toys, bikes, balls and basketball hoops. I think it helped that aside from kid noises it was quiet and we had the whole place to ourselves.

We all sang to the birthday girl and then sat down to have cake. J sat down with his juice box and quietly sang, "Happy Birthday. To. Yoooou. Happy Birthday. To. Yoooou." I've never heard him sing like that before. Randy and I just stared at each other with our jaws hanging open. He looked at us like, "What? I'm singing here."

J is also back to Blue's Clues car wash. We lost the episode we had saved when the DVR died. The new DVR was set to record BC and found the car wash show. "I'm waterrrrrrr and I'm soap. And I'm a car, car, car!" I'm pretty sure I can hear Patti LaBelle wailing, "Boogie in the baaaaack seat!" in my sleep.

Object du Jour: Pictures! J has been obsessed with little albums of family photos. It's not the people that interest him, it's the stuff in the background or the block he's holding or the square light above the garage...

Shots, Trains and Snaaaaaakes!

J finally got the first dose of the H1N1 vaccine on Friday. The school nurse arranged for the Health Dept to come to school and vaccinate the high risk kids. J did really well and didn't cry at all. Now we need to find a second dose in 4 weeks. Hopefully, they will be more plentiful by then.

We all went to Trainfest yesterday. It's model railroads on display and all things train related. The boys loved it! The biggest hits were the train races and the giant floor display of bigger train sets with cartoon characters riding in the cars. I saw lots of stimming noises and movements from J during the train races. He was so excited! When we got to the giant track set up on the floor, J kept saying, "Get in! Move that gate!" He so wanted to climb in with Thomas. Jameson got to go for a ride on the kid-sized circus train. J wasn't having any part of it.

Today we're going to a birthday party for one of Jameson's little friends at an indoor playground. Hopefully, Jackson will be OK with it.

Object du Jour: A plush snake. Jackson has it draped over his shoulders and is making hissing noises at everyone. He then laughs hysterically. Goofy kid!

Random thoughts...

J will finally be getting the H1N1 vaccine this week. We originally planned to stand in line at the Health Dept tomorrow afternoon, but the school nurse called and said that they will be doing a special vaccine clinic at J's school on Friday for the high risk kids. J will definitely get the shot and we won't have to stand in line for hours.

J got a new pump on Friday with an updated door. The pump he had was notorious for the door flying off if it's pulled too hard. We had to exchange ours about a year ago for that reason. The new pump is so much quieter than the old one. I can't hear it running in the middle of the night now.

Tomorrow the Katie Beckett rep will be doing the bi-annual home visit to re-up J's Medicaid for the year. I had lots of paperwork to fill out and lots of copies to make, but we're all set now.

We're going to head up to the Dells for a mini vakay later this week. We could all use a little fun and relaxation!

Object du Jour: The Target toy flyer out of the paper on Sunday. J has just been pouring over it. He asked for a pen and he almost seemed to circle the things he likes. Or maybe he was just scribbling...

Mirror mirror on the wall...

More errands today. First we went to Tarjay to get junk. It seems like we run out of everything at the same time. We were in the store for 2 minutes and Jameson lost his "kiki." This is a strip of Mickey Mouse fleece fabric that was leftover from the blanket I made for a friend's baby. I retraced our steps and didn't see it. At the end of the trip, I went to the service desk to ask if anyone turned it in. The woman said, "It's just a piece of fabric, right?" She disappears behind a wall and comes out with kiki pinched pinched between her thumb and forefinger at the very corner holding it as far from her body as she can. Not that I expected her to give it a snuggle and a kiss goodbye, but it wasn't contaminated. Sheesh!

Then we stopped to pick up the rectangle glasses. Fast 3 weeks, huh? I guess they sent the order to their lab by mistake, so they called and said we could get them. J allowed the lady at the store to put the glasses on him. He looked absolutely adorable in them. He turned to the woman and said, "Rectangle glasses look in mirror." Of course he needed to check out the handsomeness for himself! After a quick look in the mirror, that was it for the rectangle glasses. They have a band that goes behind his head and he's not so sure about that. We'll keep at it.

My parents came over to watch the blond tornado and J and I went over to the Special Needs Clinic at Children's. (I was told it's called Physical Med and Rehab, but that's not the case, I guess.) The dr. was really nice and we talked about J's muscles, tone, w-sitting, falling down, mottling and tons more. He thinks J is doing great and feels that we should do more therapy ball work with him and some more pool therapy. When I asked about the mottling, he told me he sees it quite a bit in kids with cerebral palsy and unfortunately, there's nothing to do but keep him warm and well-dressed. I was pleased that he felt things with J were going well; we don't always get to hear reassuring news. We'll go back in a year.

While J and I were going over the sky walk from the parking ramp to the hospital, he labelled all the EXIT signs. He does this every visit. J stopped when we got to the big HOSPITAL sign hanging from the ceiling. He pointed to it and said, "Says appointment." Whoa. Didn't see that one coming. This kid continues to amaze me every day. He must've heard me talking to my parents about his "appointment" and somehow that word stuck in his head.

Object du Jour: Bristle blocks. J can play with those for hours, especially the ones with the hole in the middle. Those are "windows."

Cindy C, Claudia S and J

They've all been photographed by Rick Guidotti! Today was the photo shoot. It was really fun and exciting. There were about 20 kids and they were divided in groups of kids over/under 12. J sat at a table creating a masterpiece of crayon, paint, marker, glitter glue, and foam stickers while Rick took his picture. The kids were taken individually over to the window where more pictures were taken.

Rick had such an amazing rapport with the kids. He started to make funny noises while photographing J and J went into his adorable maniacal little giggle. I was amazed how quickly J warmed up. Got to see some of the pics on the camera, they look beautiful!

There was a little girl with long gorgeous wavy brown hair. A fan was brought in a make her hair blow around (very high fashion!) She kept running her hands through her hair and saying, "Wooooo!" So stinkin' cute! As J watched this, he leaned over to me and asked, "Fan blow Jackson's hair?" Not that J has a ton of hair to blow around!

Check out Rick's site and see all the wonderful work he does to show the beauty of kids with special needs. http://www.positiveexposure.org/

Object du Jour: A tiny pink camera I found in the Christmas decorations (yes, I'm getting out the Christmas decorations). I have no clue where it came from. There's a little wheel on the bottom that turns and inside is pictures of some odd cartoon cat. J's been obsessed with it the last few days.

All Done Steak Fair, part deux

Trick or Treating last night. J was Thomas the Train (again), but that's what he wanted. J2 was Balloon Boy from the news. I put a t-shirt on him that read, "Please give my dad a reality show" and tied a Halloween Mylar balloon to his coat. I was Mrs. Roper from Three's Company and Randy was General Zod from Superman 2. Three of the 4 of us wore recycled outfits from year's past, but I just didn't have the creative energy this year!

J2 was OK with Trick or Treating. After he got that sucker at the first house, I don't think he saw any point in continuing on. He gave me a, "Whadda ya mean we keep going? I got the most perfect, awesome sucker right here!"

J got out of the stroller at a few houses, but spent most of the night riding. He sad little pumpkin bucket had 5 pieces of candy in it at the end of the night. It's the process, not the product, right?

After we had been at it for about half an hour, J started telling me he was, "All done Steak Fair." I'm confused, because one one hand, he doesn't want to be there, but on the other, he asks to go to Steak Fair at least once a week.

Object du Jour: Jameson's balloons from his costume. The boys have been having fun holding onto the ribbon and then letting them go to watch them float to the ceiling.