Random pics

Christmas: Round 2 Santa's Busted

On Christmas Eve, we get the boys tucked into bed, telling them that Santa will come while they are sleeping and leave them more presents. J wasn't tubed because he had drunk (drank?) his allotment for the day (woo hoo!) We come downstairs, put the presents under the tree and sat down to watch TV. A few minutes later, a little brunette streak of light went running past the doorway straight for the tree. J stood there looking at the mound of presents and then back to us. When he moved toward the tree, that bleepin' Let's Go Thomas started yelling, "Hi, I'm Thomas! Let's go to Boulder Mountain! Let's go to Farmer McCall's farm!!" J's eyes got huge as he tried to figure out where the sound was coming from. Daddy scooped him up and put him back to bed. Disaster averted (I think), he didn't try to get up again and didn't mention anything the next day. I still think the whole Santa thing is still a bit confusing for him. Whew!

The boys got up about 6 on Christmas morning and we all went downstairs to open gifts. They loved everything they got, J especially loves his Leap Frog Learning Letters toy and J2 loves everything that was given to J. I think the Color Wonder markers set and of course the "Boom Boom" aka drum are J2's favorites. J finally got his Pinpression, which he's been using to mould around all the little toys he can find. It's especially hysterical when Daddy puts it on his face. They both love the Trio blocks set. I made a "Blue's Clues car wash" which kept them both entertained for quite awhile.

Let's Go Thomas has proven to be a dud so far. With the the trouble that thing has given me by yelling out of my Target bag, yelling every time I opened the closet, and of course the incident above which could've lead to Santa's downfall, and they couldn't care less about it. Meh. Whatareyagonnado?

We got a few inches of snow today, so Daddy loaded up each kid individually in snow gear and took them for a walk on the sled. Jameson didn't want to get off. He absolutely loved it! Daddy has promised them another ride tomorrow. (They can't go together because a friend borrowed one of our snowsuits for a trip, but this works out better to take them alone.)

One more round next Saturday and we are finally done! Jameson's second birthday is a week from Monday. How the heck did that happen!? Wasn't he just my ginormous, almost 10 lb newborn? It's going too fast!

Object du Jour: All the new "stuff." Man, does everything talk and take 3 AAA's?

PS Now that Christmas is over, I'm officially sick of snow! So, I decided to give the old blog a tropical theme!

Christmas: Round 1

My parents, brother and niece came over today for presents and lots of food! Special thanks to the local grocery store for cooking and carving the turkey for me! I made The Pioneer Woman's Buttery Rosemary rolls. Absolute Heaven! http://www.thepioneerwoman.com/ Her recipes are fantastic. She also has a cookbook out too.

While we were eating, one of the presents kept meowing. Jameson was fascinated and, I think, a touch concerned that someone wrapped up our cat. Turned out, it was a "Fur Real Kitty" for his cousin.

Watching kids open presents is always so much fun! Jackson finally got that Elmo microwave he's been pining for. That was the first present he opened and he took it into another room to enjoy it in peace. He couldn't care less that there were other presents to be opened. We had to keep bringing him back to open the rest. The Handy Manny fix-it TV is a close second favorite.

Jameson watched J open the microwave with a huge smile on his face. When he opened his first present, it turned out to be two pairs of jeans from Grandma and Grandpa. He looked and the jeans, put the top back on the box and said, "Bye Bye" while waving at the pants.

All was forgiven when he opened the kid sized drum kit from Uncle Mike. J2 has been banging away since it was put together.

Tomorrow we do it all again after Santa stops by. And then again with Daddy's family a week from Saturday.

Object du Jour: It's a toss up between the microwave and the tv.

Cash registers and Jello don't mix.

GI follow-up today. We only saw the dietitian and speech therapist. The dr. wasn't on the team today and the behavior psych had an appendicitis and was out for the week. Ouch!

J's weight is 28 lbs, 9 oz and his height is 3 ft, 1". So he's up on both fronts! Yay! No wonder his pants were getting too short. He's currently wearing 4T tops and 3T bottoms (they are adjustable waists and the band is pulled all the way to the end, but hey, the length works well!)

They are pleased with the weight gain and with the increasing variety of foods J accepts. Yesterday, he ate a whole bowl of peas, 4 squares of sweet potatoes and a cup of applesauce in less than 2 hours. Wow! Maybe he's having a growth spurt!

While we were waiting for the staff, J kept asking me where the air conditioner was. I told him probably on the roof. He was in hysterics over the word "roof." He'd say it in different voices and then just crack up.

We've now put J on Prilosec instead of the non-covered Prevacid. Tonight was his first dose. The pharmacy at the hospital is wonderful. The meds are compounded in a big bottle and they gave me a cool adapter so I can put the syringe in the top and draw out what I need. Fancy!

J got his second H1N1 shot at school yesterday. I feel relieved. Hopefully, we won't need to worry the rest of the Winter.

At feeding therapy on Monday, we ran into Santa on the way in. J just about jumped out of his skin. He ran the opposite direction so fast, I don't think his feet touched the ground! Jameson buried his leg in my thigh and wouldn't look. Santa gave them each a jingle bell from his sleigh and off he went. Neither one of them wanted to talk about it when Daddy asked them where they got the bells. lol

J2 brings me the toy cash register today and says, "Money broken." At first I couldn't figure out why the money wasn't coming out of the change chute. It was going in just fine. I flipped it over and figured out the problem. Somehow a huge chunk of finger Jello ended up inside the chute. Hmmmm, I wonder how that happened?

Object du Jour: A little pink rectangle Barbie boom box.

Milk, it does a body...in J's case, no good.

The boys have figured out how to dump the toy buckets and use them as step stools to reach things they shouldn't have. They both like to take things off the counter and sink to pretend to "cook." Jackson grabbed Daddy's empty milk cup from dinner off the counter and took off running with me in hot pursuit. The whole time he was running he had the cup over his mouth blowing raspberries into it. This was all of 12 seconds before I recovered the cup.

Daddy took the boys upstairs to get them ready for bed. He called me up to look at J's face. It was bright red and blotchy on his chin and right cheek. My best guess is that some of the milk left in the bottom of the cup touched his face and he was having a mild reaction. I, of course, start to worry that his tongue is going to swell or his throat will close up. I gave him some Benadryl and watched him sleeping no less than 10 times last night. He's fine this morning. But, I think we've answered the, "Is he still allergic to milk" question.

I think when J's GI panel is drawn in Jan/Feb, I'll have them recheck milk and peanuts and see where he's at.

Speaking of GI, we have a check-up Thursday.

Object du Jour: Still the toy flyers. He especially attached to the Target toy book from a few weeks ago. This poor thing looks like its been through a shredder. J wanted to bathe with it this morning. We had a long philosophical talk about the effects of water on paper.

And you thought I was kidding about the flyer obsession...

All the better to see you with, my dear.

Met with the opthortist (I think). Didn't get to see the eye doctor of the awesome name on this visit. Bummer.

J was a riot in the waiting room. We had the whole place to ourselves and Ice Age was playing on the TV. He asked for The Wiggles (naturally) and I told him we are going to watch this cartoon. He latched onto the word "cartoon" and tried it out in every voice he could think of. J was also giggling maniacally at the word "outlet." As in, "Please don't touch the outlet." *more fits of giggles*

But, the second we were called back, the giggles were gone. He kept saying, "Open the door, get in Daddy's new car." (Daddy got a new car from work two weeks ago, it will probably be the "new" car for a long time as far as J is concerned.) He sat on my lap and the tech covered J's right eyeglass lens with a patch and asked him to label an apple, circle, house and square on a computer screen across the room. J latched onto the house and square, but was able to ID the others too, in between sobbing and yelling, "Cover off eye!" Same story for the left eye.

The opthortist feels that J's left eye is 20/80 and that the testing wasn't accurate for the right eye because he was so freaked by the patch. But, if there ends up being a huge discrepancy between the two eyes on our next visit, we'll need to take stronger action. We're currently attempting to patch his right eye 2 hours a day in order to get that left eye to work better. The concern is that if he relies too much on the right eye (which is ironically the one that wanders, but the left eye is the one with ptosis), he'll lose function in the left eye.

If he continues to really fight the patching, we may use some drops to block that right eye. Typically, they use atropine, but it's contraindicated in kids with Down syndrome because of potential heart issues. J doesn't have any heart issues, but he does have the trisomy part. She did say that there are other drops to try, but they aren't as effective. We head back Feb 4.

Because the "blanket glasses" don't fit over the new rectangle glasses, I had to get inventive. I have the right lens covered with Kleenex, then band-aids and then a Wiggles sticker. The trick is to make sure he's not looking around the patch. But, with the new glasses fitting tighter against his head, it doesn't seem to be a problem so far.

Object du Jour: Toy catalogs! Wheeee!

Nothing New to Report

I haven't written anything lately, mainly because it's been pretty quiet around here. *knock wood* J has eye clinic tomorrow and GI on the 17th. I'm worried about where his weight is with all the illnesses he's had lately. The ER still had him around 28 lbs, which is close to where GI had him last time.

Santa is done shopping, but we still need stuff for the rest of the family. The boys are getting a "Let's Go Thomas", which talks, tells stories and rolls across the floor. When he talks, his mouth moves and his cheeks blush. I think he's adorable; Daddy finds him creepy. lol We'll see what the boys think.

Object du Jour: The flyers from the Sunday paper. J loves looking over all of his toy and small kitchen appliance options.

Green Boogies!

J was sent home from school yesterday with a case of green boogies. I'm keeping him home today too and I'm going to place a call to the ped. No fever or anything else, just the nose faucet. His face is red and chapped from being wiped so much. I don't know if this is a holdover from the croup episode or the H1N1 shot or something else. I have noticed that Jameson is heading down the same road. It really never ends, does it?

Object du Jour: Still the toy catalogs. Santa is bringing him a set of Fisher Price Trio blocks because he's been obsessed with the "cubes" in the FP catalog. They look like cube Legos that he can put together himself. They must be popular this year because I had to go to several websites before I finally found a set.

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.

Rectangle Glasses, Buttbeans and Swirleys.

Lots of errands today. Got J's hair cut, ordered his new rectangle glasses and now we're going to be heading to the grocery store as soon as J2 wakes up.

We were able to get J the Miraflex glasses. They come in circle or rectangle shapes; I don't even need to say which J picked. He was not very happy with the glasses we tried on because they come with a headband on them. Once he gets used to it, I think they will be perfect for him. The glasses come in every color of the rainbow; we picked a pearly dark blue. We should have them in about 3 weeks.

J2 is on a button kick. Elevators, phones, doors, crosswalk signals, if there's a button, he'll find it. The funny part is that he's taken to calling buttons, "Buttbeans." We're walking through the mall to get to the optical store and as we passed the elevators, J2 is yelling, "Buttbean!" I'm sure people wonder what I teach my children!

Poor Jeff Wiggle. I was in the boys' room changing J2's diaper. J leaves the room with Jeff Wiggle in tow. I later found J holding poor Jeff by his ankles and dipping his head in the toilet. What is with the fascination with the toilet? Now poor Jeff needs to go through decontamination.

Tomorrow is out neighborhood Trick or Treat. I'll post pics on Sunday.

J has his photo shoot next week and an appointment with Physical Medicine and Rehab at Children's. We're heading there to have them check out J's muscle tone, balance and pelvic tightness.

On a completely different note, one of J's trisomy 4p counterparts is currently hospitalized with complications from H1n1. She's been really struggling. Please keep her family in your prayers.

Object du Jour: The Thomas sticker from the haircut and the rectangle glasses (which we don't even have yet.)

Dance Dance Flag!

This weekend we went to Grandma and Grandpa's house and then up to visit J's aunt and uncle. J's cousin was home from Iraq for a visit, so we all went up to see him.

J fell in love with their "Dance Dance Flag." It's an American flag that waves and plays patriotic music. He cried for 45 minutes after we left because he didn't want to leave the flag behind. I've never seen him that upset over something. After he calmed down, we stopped at Wal-Mart and found a little snow globe with Frosty inside. It lights up and plays music and Styrofoam snow whirls around inside. This morning, the flag is all but forgotten.

The pictures above are J with the glorious "Dance Dance Flag," J trying on Uncle Dave's glasses, clutching a handful of Uncle Dave's dominoes and the last one is J's new awesome hat! J2 has a red and grey on just like it.

We made the attempt to get J an H1N1 shot on Friday. The ped's office says they don't know if they are getting any, so we tried the flu shot clinic at the Health Dept. The clinic started at 2:30 and I guess people were in line early that morning. We got there at 1. It was pouring rain, the line was hundreds of people long and there was no guarantee he would get a shot. So, we went home. There were still people in line when we went by at 5:30. I guess I'll call the ped this week and see what she recommends.

Object du Jour: Tons of Grandma and Grandpa's things. It's much more fun here than at home!

Rocks and Gingerbread Men

I joined a new Mom's group today on the recommendation of a friend. They were having a scavenger hunt with their kids, so I tagged along with Pete and Repete. We walked through the woods to find pumpkins, gourds, leaves, acorns, apples and harvest corn. Jameson had a blast. He carried his "punkie" under one arm while trying to gather up more stuff. Jackson wanted to get back in the car. When we went inside to play, Jackson wandered around and played with toys and would watch the other kids, but didn't try to interact. Jameson was really intent on watching what the other kids were doing. He and a little girl had a tea party and they poured and stirred and cooked together. It was really cool to see him interacting with a kiddo who played back. I think this group is going to be good for all of us!

J's favorite place lately is "Best Buy's house." We were looking for a new cell phone for me since J sucked on mine (again!) and ruined it. This is the second phone he's killed. He and J2 had so much fun looking at all the sample phones and trying out the Rock Band game and the Wii. I guess Best Buy's Wii is much more fun than the one we have at home! But, I now finally have a new cell with the same number (In case anyone wants to call me!)

J broke his glasses yesterday! Gah! So, I called Children's where we see the dr. he used to see in Mequon. They can't help me because, even though he's had his exams there, the prescription is from the other clinic. The Mequon clinic can't help me because he hasn't been seen there since '08. Clear as mud, right? So, the receptionist in Mequon is going to talk to the dr. and let me know what she says. http://miraflex.info/ I want to get him some of these because they are bendy and unbreakable. As an added bonus, they have rectangle frames! Woo Hoo!

Here's where I get sappy and philosophical: I read an article written by a SN mom a few years back. It was about how the people in your life, once you announce your child has SN, either become rocks or Gingerbread Men. The rocks are there for you through everything and the Gingerbread Men run, run as fast as they can away from anything having to do with your SN child. I was just thinking about my rocks and Gingerbread Men. And the Gingerbread Men weren't necessarily who I thought they would be once I started talked to people openly about J. So, to my rocks, Jenny, Jodi, Lisa and Melissa, I thank you from the bottom of my heart for listening to me and supporting me (and for all the drinks!) You gals rock! (Aaaand, now I want Gingerbread.)

Object du Jour: A cool laptop at our friend's house today. J had a lot of fun typing e-mails to Daddy in Chicago!

Baby it's cold outside!

Just some new pics to share! The one of J2 was taken at the school playground and the one of J is on the hay ride at the pumpkin farm. Aren't they just the cutest?

Object du Jour: Putting stickers on big sheets of paper. I found a smiley face sticker stuck to J's knee when I changed his diaper. lol

Late Breaking News...

Magic Erasers even get Sharpie off the walls. I'm so writing Mr. Clean a letter!

Further bulletins as events warrant.

Object du Jour: Back to the shape books with the awesome page of all things rectangular: crackers, a window, a door, a brick and a puzzle. He slept with it last night.

Anyone know how to remove Sharpie from a cell phone?

I talked to J's genetic counselor yesterday. The results of the microarray aren't back yet, but it seems that J's thyroid is normal. She didn't have any other suspicions as to what could be causing the mottling on his legs. The poor kid is so cold all the time.

Daddy went with J and his class to the pumpkin farm today. He said J wasn't so sure about everything at first, but loved the hay ride. J came home and told me "Hay ride, blue tractor!" He brought home a cute little pumpkin and a yellow gourd. I'm really glad he did well. I had the poor kid dressed in so many layers I'm surprised he was able to move his arms!

I'm in one room changing J's diaper. Boychild #2 is in the toy room (aka the living room) and he's vewry, vewry qwuiet. I get done with the diaper change and find that J2 stole a black Sharpie out of the desk drawer and scribbled all over the wall, mirror, my cell phone and a Mr. Potato Head. Someone please tell me this phase is almost over! He's not even two yet!

Object du Jour: The sticker from the pumpkin farm.

Astrounauts and feeding pumps

J brought home a book of "A" words he had colored at school. Apple, ax, astronaut, alphabet and alligator (An ax? Were they out of "A" words?) Jackson took the booklet out of his backpack and pointed to the astronaut and said, "Astronaut, Jackson's pump!" There's a line coming out of the astronaut's belly area and a square with buttons on his chest. J thinks that he uses the same feeding pump. I wonder if it's an Infinity? J carried the picture around and just stares at it saying, "Jackson's pump" over and over. I think it's great that he can find something relatable in a novel picture.

I worried for a bit about how Jameson would handle J's g-tube "stuff." J2 points at the pump and says, "Daxdon's!" He has also taken J's medication syringes and tried to find the button in his own belly to put them in.

J has become a parrot. He will repeat the same phrase over and over and over. His favorite is "Pincha fingers in the rectangle." No clue what that means, but I think he says it close to million times a day. "Letice" and "Cleesus" are also two favs with unknown meaning.

He's also started screaming at the top of his lungs and then laughing at himself. Oh joy! The poor cat practically climbs the walls when he does it. I told him not to scare the kitty, she might bite. When he screams now, he'll say, "No 'creamin', kitty pincha fingers." He gets it in his own little way!

ETA: Figured out tonight the screaming is to get the lights on the baby monitor to go full tilt. Here's a boy that wants it to go to 11 (obscure reference!)

Object du Jour: The "A" book.

Ooo, spellcheck loves me today!

*Cough*

Now I have a horrible sore throat. Really? Is this ever going to end? I hear poor J2 up there coughing in his sleep. Randy is hacking away too. Out of the lot of us, Jackson is the healthiest. That defies logic, but I'm not complaining one bit!

I think someone broke into our house, armed with a blue crayon and decided to vandalize the walls in the kitchen and dining room. Couldn't have been either one of my angels. Although, if I had to guess, I think the culprit's name rhymes with Bameson. Magic Erasers have become my bff.

Jackson's eating has been great lately! He chewed and swallowed parts of a fruit rope and ate smooth/crunchy textures mixed together at therapy on Friday. His intake volume of solids has gone way up lately. He's also requesting mini-saltines, aka "Squackers," as in, square crackers. Tonight for dinner, I tried to get him to try a slice of pear and a cooked baby carrot. No dice, but at least he touched them and smelled them without gagging or getting upset. J is really loving dehydrated apples, but just to suck on and not to chew and swallow. We'll get there.

Jameson is really into fingerplays lately. Tonight we sang "Itsy Bitsy Spider." His face just lit up when he figured out how to copy me. We I sang the "down came the rain" part, he yelled, "RahRah!" His word for water. Excellent connection!

Object du Jour: The box from Daddy's new hedge trimmer. Awesome!

Saturday musings...

I think everyone is slowly getting better. Jameson has still had a fever on/off all week, albeit a low one. Jackson has just kept the runny nose. Randy and I have also been sick over the last week, but we just had cold-like symptoms. I'm so ready for everyone to be plague-free! I'm really starting to lean toward getting the H1N1 vaccine for J. His clinic doesn't have any yet, so I still have some time to mull it over.

The monkeys are getting stir crazy after being trapped in the house for so long. Our outside time is limited due to illness and now the weather. The forecast called for the 20's tonight and possible snow. I'm so not ready for that yet.

J came to me yesterday and said, "Dave?" I asked him "Dave, who?" and he said, "Dave!!" I told him I didn't know who he was talking and he put his hand on my cheek and said, "Dave and Donna!" So, Aunt Donna, just know J is thinking of you guys!

I'm such a klutz. I took J's pitcher out of the fridge this morning to pour him a cup and I dropped it. It shattered all over the floor. 40+ ounces of sticky liquid everywhere! After the boys go to bed, I will have to move the fridge and stove and clean underneath. Can't wait! I may be a klutz, but I'm not crazy enough to attempt this maneuver with an audience! But, on the plus side, I now have an excuse to go to Target!

Object du Jour: A car ad in my Oprah magazine. It's got a great picture of the dashboard and radio. J has been talking about it all morning.

In patient stays...the gift that keeps on giving.

Jameson went to the ped yesterday for a follow-up from his hospitalization. His lungs sounded clear, but he had a temp of 102.1. The dr. felt that he may have picked up another virus while at the hospital and to just give him Motrin. This morning his temp was 101.9, but he's in much better spirits and back to his silly self.

J went back to school on Tuesday. He was so excited to be there. He's been asking since he woke up this morning if he's going today.

The temp has really dropped here and they've mentioned the "S" word a few times in the forecast. I'm so not ready for that! Plus, we're not getting the new furnace put in until next week or the week after!

Object du Jour: A little tiny pink heart sequin. It must be left here from J's cousin, because I can't think of anything else it would have come from. J's been calling it M's heart. He's been carrying it around most of the morning.

The other big obsession is that we've rediscovered The Wiggles on the Sprout channel. They disappeared from the Disney channel quite awhile ago. Now there's a disagreement as to whether we watch The Wiggles or "Elmie" before lunch/school.

Home again.

We are all home and finally under the same roof! Jameson seems better, he's still really crabby. We have a prescription steroid he needs to take two doses of and then we head into the ped to have him listened to. I gave him the first dose tonight and he promptly threw it up all down my back. Both boys are finally sleeping, but I'm hearing coughing from both of them.

Off to bite my nails down to the quick watching the rest of the Packer game!

Object du Jour: J and I went to Target to get Jameson's prescription and general junk. We made a stop in the toy area (my mistake) and J fell in love with an Elmo microwave. I think he said, "Elmo microwave, have it" about 1,000 times during the rest of our Target visit. I just couldn't make him understand that it was too much money to buy today and maybe Santa would bring it. Instead we came home with a Handy Manny paint with water book and that kept both fellas occupied for quite awhile this afternoon.

I want my toaster!

Jameson was admitted to the hospital yesterday through the ER. He was still struggling to breathe and coughing so hard he would cry from the pain. I was hoping he'd be able to come home today, but he's still working hard to breathe, so hopefully tomorrow will be the day. Randy is staying there tonight and I'm home with J.

Seriously now. Enough is enough. I'm exhausted and stressed and it's not even winter yet. I pray that this is it for us and everyone will stay healthy.

Object du Jour: No clue. I only saw J long enough today to put him to bed. He was thrilled that he got to come home with me and not stay at the hospital with Jameson and Daddy.

Chateau stay v2.0 with Jv2.0

Here we go again. Jameson woke up last night about an hour after he fell asleep and threw up all over me and the floor. Got him bathed, put him back in bed and then he started with the wheezing and coughing. I tried hot steam, the humidifier, and opening the window for the cool air. Nothing worked and then he spiked a low grade fever. I called the ped and she heard the wheezing when she picked up the phone. The first thing she said was, "Croup and strider?" She told us to head to the ER for a breathing treatment and steroids.

We got to our room in the ER and found out that we were seeing the same doctor and nurse from Wed night. I told them that my "Frequent Flyer" card is one punch away from getting the toaster. Woo Hoo! (Thank goodness they thought I was funny!)

J2 and I got there at 5 am and they let us go about 9. I'm really happy that the breathing treatment worked in one dose. He still had a little fever and is now upstairs sleeping. Poor little guy. The people that worked with him were so pleased with how cooperative he was. Jameson was fascinated with the pulse ox (which usually causes J great distress), took the mask like a champ and opened his mouth for the meds like a pro. This is kid is Michigan J. Frog. When the staff was in the room, his halo was blinding; the second they stepped out he was climbing furniture, trying to call China on the phone and jumping on the bed.

Lets hope this was our last visit to the Children's ER for awhile. Sheesh, and it's not even winter yet!

Object du Jour: Magnet wands and Snapple caps. Great fun!

Our Stay at the Inn

Randy got home at 12:30 am and at 3:30 am, the strider kicked in full-force. I scooped J up and off to the Chateau we went. Two Racemic Epis and a round of steroids later, they decided to admit us. They said there was no room at the Inn, so we had to wait quite awhile. After we got to J's room about 8 am, his ped walked in. Coincidentally, she was doing rounds at the hospital. She felt that if J was better by the afternoon, we could go home. Yay! So we hung out until 4:30 and we got the go ahead to come home. I'm still hearing "The Cough" off and on, but no more strider. I'm going to keep him home from school the rest of the week, just to be on the safe side.

We got to experience the new patient tower first hand. It's really, really nice. The patient and the parent have separate areas with two TVs. There's an outer room for the nurse/doctor to chart, so there are two doors you need to go through to get to the hall. Makes the room much quieter. Each bathroom has a tub, so if J would've stayed longer and needed a bath, I wouldn't have had to do it in the hallway like in the old tower. (OK, not literally in the hallway, it was a small room that sorta looked like a janitor closet with a tub in it).

As nice as it was, let's just hope we don't need to go back any time soon. Now I'm off to take a hot bath and get some zzzzzzzzz...huh...what...where am I? I'm so stinkin' tired. zzzzzzzzz

Object du Jour: I tossed the Magnadoodle and Etch a Sketch Freestyle (fancy word for an EaS with a joystick instead of knobs, so one can actually draw circles!) in my bag. J spent the afternoon guessing what I drew on them. He's a pretty good guesser! He wasn't happy that the shoe I drew wouldn't fit on his foot and help him get the heck outta there! lol

The Cough

J has had a runny nose the last few days. Last night I heard "The Cough" a few times in the night. Randy is gone, so I spent most of the night laying awake trying to figure out what I would do if we needed to book a night at the Chateau (Children's, but Chateau sounds much fancier, doesn't it?) and what I would do with J2. J is sleeping now, but The Cough is much worse than last night. I went up and watched him for a bit and I'm not hearing/seeing the breathing problems. Randy is on his way home now, so hopefully if we do need to run over and book a room, he'll be back by then. *knock wood* *fingers crossed* all that good stuff.

Object du Jour: The Lego windows and doors. J loves the little Lego doors and windows that open and close. They are fun to play with and as and added bonus, they're rectangular!

What I found most interesting, is I had only given him the bigger parts of the Lego set that were safe for him to play with. I gave him the frames for the door and windows, but not the inside parts because, honestly, they were in a separate bag and I didn't think of it. The rest of the pieces I kept in the closet. I did give him the book that came with the set. He sat pouring over it this afternoon and brought it to me saying, "Need a black door." J actually figured out that the door frame was supposed to have a black door in it just by looking at the catalog. I went into the bag of pieces in the closet and sure enough, there it was. He's been in Lego Heaven ever since. Wow.

Random thoughts...

J: "Go Steak Fair?"
Me: "You want to go to State Fair?"
J: "Go Steak Fair."
Me: "I thought you didn't like it there, remember you said it was too loud?"
J: "Get in Mommy's car, go Steak Fair!"

Where the heck did that come from? Didn't have the heart to tell him we'll have to wait another 11 months! lol I wonder what he was thinking about when he brought that up?

J is doing a great job keeping the glasses on. I still need to get the patch on them, but I'm just happy he's wearing them without too much problem. (When mommy doesn't leave them at school over the weekend. *ahem*)

Object du Jour: A picture from school that his speech therapist put together. He loves those books she makes.

Mad for plaid (and stripes)!

We have pee on the potty! It's not J though, it's Jameson. 21 months and he's getting the potty thing. I bought Jackson a froggy potty that is all one piece. He was getting too obsessed with playing with the parts of the training potty that had a lid and seat like a real toilet. J will sit on the new potty, but hasn't actually gone yet. Jameson knocked J off the potty this afternoon, whipped off his diaper and said, "Pee Pee!" and totally went! We clapped, we sang, we danced, but the big excitement was flushing the "pee pee" in the big potty. Jackson got back on and gave it another go, but nothing. We'll keep trying. I never thought they'd be training at the same time. And I certainly never thought, J2 would get it first. But hey, I would be thrilled with one or both of them out of diapers. I'll have to make a trip to Target and get a second froggy potty.

I had a conference all day today, so Randy got the boys up and going and got J to/from school. I now learned that there's a reason I'm in charge of dressing the boys (and Randy too for that matter). He put both boys in striped polos and plaid shorts of opposing colors. It wouldn't be so bad if they were just hanging around the house, but J went to school like that. I couldn't help but laugh when I got home and saw how they were dressed. Hopefully, they won't inherit their father's fashion sense!

J has been really whiny and demanding lately. But today when Daddy and J2 went on an errand and it was just him and me, we had a blast together. We danced and sang to ELO songs while picking up toys and giggled while repeating each other's words in funny voices. I think he was happy to have undivided attention. I think Randy and I need to make a point of giving each kiddo some time with us alone.

Object du Jour: The Magna Doodle. J would tell me what to draw, so there were lots of microwaves and "rectangle music", which is what he calls the satellite radio.

Cancer Sucks!

We have a friend who was diagnosed about a year ago with 3 brain tumors. The treatments and therapies have left their savings pretty much depleted, so a group of people held a fundraiser for him yesterday. There was food, music, a cake auction, raffle prizes and a performance from ComedySportz. The organizers did an incredible job! It was really heartwarming to see how many people came out to help this family.

Randy won a fruit basket and a necklace (he looks fabulous in it!) and I won a Brewer's basket with 10 bobble heads (I'm thrilled to now have a Yount to go with my Molitor!), 3 shirts, 2 hats, a cooler, a pennant, and a ton of Brewer's baseball cards. I also won a wonderful Red Velvet cake. Yum!

The event was held at a bowling alley and Jameson had a blast! He explored every inch of the place. Jackson was not happy to be there. He kept telling me everything was too loud. By the end, he was doing pretty well, but he needed to keep a fleece winter hat on his head through the whole event. He got some funny looks, but hey, I'm game for whatever it takes. Never mind that it was 70+ degrees yesterday.

We went to the ped this morning to get J's booster flu shot. He took it like a pro and immediately asked for his sticker. lol Pavlov's theory can also be proven with little boys and stickers.

Object du Jour: A toy phone and the sticker.

It's all about conditioning.

Got a letter from the insurance company saying that "coverage is available" for the microarray testing, so off to Children's we went Friday to do the blood draw for that and the thyroid. He loves running down the skywalk from the parking ramp and labelling all the exit signs.

We got in the lab waiting area and he kept pointing to the door to the office and saying, "Open it, door." When we finally got called back and sat down in the chair, he burst into tears and starting yelling, "Stiiiickers!!" I think he's finally figured out that each visit to Children's no matter what it's for results in a sticker or two. He handled the blood draw like a champ and happily bounded out of the office with a Blue's Clues sticker in one hand and Spiderman in the other. The major trauma was the "Bamdaid" that covered the poke. He made me remove it before we left the parking ramp.

J is on a Playdoh kick. That's all he wants to do lately, so we made a special trip out to go buy some 'doh. When we got to the store, I noticed that all the clearance toys were 20% off, so we also came home with a Handy Manny fix-it radio. The back comes off and there's giant pretend screws that can be "fixed" with the screwdriver that was included in the box. It talks and tells you what part to fix. He loves that thing! He's doing a really nice job of using the screwdriver appropriately and turning it one-handed. I'm going to regret this, aren't I? So, when the time comes that I blog that he's taken the microwave or a lamp apart, you can be the first to say, "I told you so!"

I'm still working on Halloween ideas for the boys. I think J would like to be Handy Manny and J2, Elmo aka Elmie. Although, I'd love to get Jameson into Jackson's old Elvis jumpsuit. How awesome would that be?

Object du Jour: The Handy Manny radio and the Playdoh.

Blanket glasses and a red espresso machine

Back to see the eye doctor with the awesomely (is that a word?) fun name to say! I think J thinks the whole hospital is named after her.

The office has been remodelled and now when the door to the staff lounge is open, one can see a fabulous white microwave and red espresso machine. I couldn't keep the kid out of there. I was reminded several times about how white the rectangle microwave and how red the espresso machine was.

We were called back by an intern who did the initial exam with J. We saw him last time too. He said this was the day he was going to get Jackson to like him. lol Jackson was doing great until the dr tried to examine him. The dr wanted J to match the shapes on the tv screen to a laminated sheet with the same shapes on it. J wasn't having any of the matching, but he'd sob loudly, "hooouuuse" or "aaaaapple." As soon as the intern left to get the doctor of the awesome name, J was back to his old self, dancing around the room and trying to get the laminated "game" out of the drawer. He's never going to win an Oscar for his acting.

Overall, Dr. C feels that J doesn't use his left eye as much as his right (the wandering one). His left eyelid has always been a little droopy (ptosis). She wants him to wear his "blanket" glasses two hours a day over the right eye and then we'll go back in two months. The blanket part of "blanket glasses" is a little fleece patch that slips over the lens, so J doesn't have to wear the sticky patches over his eye. That was a nightmare!

I ran into one of the parents from the Family Advisory Committee and we had a nice chat while we were waiting. This was their first time seeing Dr. C; I told the mom she'd love her.

Ironically, J hasn't worn his glasses regularly since the last visit. We've made several attempts, but I find them in the back of the dump truck, in the play kitchen microwave or in the hot little hands of a tornadic curly headed toddler. This morning when I got the case out, J said, "Glasses!" He wore them from the time I put them on him, through his appt and until Daddy delivered him at school. Yay! We'll see what his teacher says about how long he kept them on at school! Progress hopefully!

Object du Jour: The glasses, the doctor's "shape game" and a super keen Elmo sticker.

Sunday Night Randomness

Random pictures from the last few weeks I've mentioned, but didn't get posted. Some I haven't mentioned; meh, enjoy anyway.

1. Could he be any cooler? (said in my best Chandler Bing voice)
2. There's a giant what behind us? Mmmm, fingers.
3. My favorite Christmas present at 18 months old.
4. The best part of J's school.
5. First day of school.
6. First day of school with Jameson smelling the bush. Don't ask.
7. Oooo, Steak Fair Sky Glider. (Sidenote: Everytime he wears this shirt I get compliments on how cute my daughter is.)
8. A boy and his best friend. J was having a full-on conversation with his shadow.
9. The most awesome part of the birthday house...the doorbell!
10. Mmmmm, birthday cupcakes!!

I made a fringy blanket today for a friend's baby who had surgery recently. J was practically drooling on the table on the hope that the blanket was going to be for him. He kept trying to pull it off the table as I was tying up the sides. I told him, "This is for Baby Christian." He wasn't having any of that and said, "Baby Kitchen?" while trying to sneak it off the table. I had to quick wrap it up when he wasn't looking. Like we don't have 27 other fringy blankeys (or KeeKee's as J2 calls them) in this house!

Object du Jour: The chalk board on the easel. I drew air conditioners, microwaves, doors, light switches and Rectangle Ellen until my fingers were totally pink and orange. Anyone seeing a theme here?

Positive Exposure and Rescue 911

We got a letter in mail today that Jackson is one of the children chosen from the Genetics Clinic to participate in a photo session with Rick Guidotti. He takes pictures of people with different disorders to promote a positive self image and so they can be looked at as a child and not their diagnosis. Here's his site: www.positiveexposure.org I'm so stinkin' excited about this!

On a bummer note this week, J's feeding therapist has moved on to another job. I don't know how I'm going to explain to him that we won't be seeing her at "Elissa's house" anymore. Good luck and we'll miss you!

GI Clinic today. Weight and height up! Yay! Met with ST, Beh Psych, the Dietitian, nurse, OT, and GI dr. They are all pleased with his gains. We'll just continue on the same course and tube him at night as needed. I discussed the Prevacid issue with the dr. and she said that Prilosec could work for J after it's compounded in the pharmacy. So, I guess if we get rejected by the insurance company, that's what we'll do. She also didn't see a need to do the Ph Probe at this time. Whew! We got back in Dec for a follow-up. Eye clinic next week.

Jameson decided that he doesn't provide enough excitement in our lives and called 911 this morning. The phone rang and a woman said, "This is Cheryl from the city 911, is everything OK?" Thank goodness she was understanding and didn't need to send a squad or firetruck.

Today he's also taken off his pants in the backyard, slipped through the fence and colored all over the neighbor's picnic bench with sidewalk chalk and broken the child lock on the cabinet. I can feel my hair turning grey as I type this.

While we were playing the yard yesterday, he watched the roofers working two houses down. One would yell down, "I need another palette!", to which Jameson would stand at the fence and reply, "What!? What!?" Like they need his input on their roofing job.

Object du Jour: The Halloween place mat that I got on clearance last year at Kohl's. Can't beat 90% off. It ended up being a whopping .39. We had to take it with us to GI.

I had a great day in 4K!

J came out of the school today wearing a big blue paper hat decorated with stickers. Written across the front was, "I had a great day in 4k!" It was so sweet and he was so proud of the hat; I almost cried. His teacher said that he handled the big group well, but needed quite a bit of help to focus on the project and get it done. She said he freaked a bit when they took a group pic of everyone wearing their hats and the class yelled, "Cheese!"

J started school on the first. He's in the PM class with two other kids. The plan is to slowly integrate them in the JK class (there are 24 in there!) and pull them back to the EC classroom when things in the JK class are too overwhelming or if they need a lot of help with an activity. Some "typical" peers may also be brought back to the EC classroom as models. J cried when I dropped him off the first day, but yesterday was much better. His teacher, aide, OT, PT and ST are all still the same, so I think he'll fall into the routine pretty quickly.

Jameson has definitely entered the terrible two's a few months early. The experiences I've had with Jameson at two are worlds apart from Jackson at two. J2 is climbing everything. He hooks his toes on the knobs of the drawers in the kitchen to get on the counter. I put him back in bed after he climbed out of his crib 8 times last night before he finally fell asleep. This morning, after Daddy got him dressed, he climbed back into the tub with Jackson when I turned my back for 3 seconds to get the shampoo for J. This kid is quick and quiet like a Ninja. Peeling wet clothes off of a howling, squirming toddler is great fun. When I reprimand him, he'll either flash that little grin at me or give me his infamous two-eyed wink. This will get easier, right? Right? Because it's getting harder to put things out of the Billy Goat's reach!

I got a copy of the letter that the geneticist sent to our insurance company regarding covering the chromosomal microarray analysis. Hopefully, we'll hear something soon. We'll do the thyroid check at the same time. I'm noticing more mottling on J's legs now that it's chillier outside. Still waiting on the Prevacid determination.

Object du Jour: Lego squares.

Here's a few fun pictures from our trip! The top pic is the boys fighting over who gets to drive Fred Flintstone's car. Jameson was screaming, "Driiiiive!"

The second pic is Jameson posing for his place as the 49th President at Presidential Park. I didn't have the heart to tell him that I don't think he'll make the 35 year old age limit though.

The next pic is Jackson playing at the water park.

The last one is the boys at the Corn Palace.

The roughest part of the trip was when Jameson had had enough of the hair pin turns in the Black Hills park and threw up all over himself and his car seat. That was quite a clean up, and he rode back to the hotel in only a diaper, but we all survived!

South Dakota!

We're currently driving home from a night at Grandma and Grandpa's and we'll be in our own beds shortly! Yay! Isn't technology great that I can blog from the car?

Monday we went to Sioux City.

Tuesday: Wall Drug, The Badlands and The Corn Palace.

Wednesday: Mount Rushmore, Deadwood and Sturgis. We also drive through the wildlife trail in the Black Hills park and saw Buffalo, Prairie Dogs, Deer and some other horned creature that I had never seen before. The donkeys walk up and stick their faces right in car looking for food. I screamed like a little girl. lol

Thursday: Custer to Bedrock City and a quick look at Crazy Horse. Back to Deadwood and Lead to see the Presidential Park.

Friday: up to Wyoming to see Devil's Tower, then back to the hotel to play at the waterpark.

Whew! We got a lot done in a short time! I was so impressed with how well the boys handled the car rides and all the new stuff. They both HATED the T-Rex at Wall Drug. Jameson was impressing the Amish with his dance moves there though.

Jackson was hesitant at the waterpark at first, but then had a blast! I can't tell you how thrilled I was with how well he handled all the sounds and changes!

I'll post pics when we get home. Those of you who are my Facebook friends can see some of pics there.

Object du Jour: Grandma's fake light-up candles. He loves those things!

Check Ups!

The boys had their annual check-ups last week. J is 28 lbs and 36 3/4" and Jameson is 24 lbs and 34". J2 is catching up quick! They are wearing the same clothes for the most part, J's feet are one size bigger. My twins! lol

I chatted with the dr. about the swine flu vaccine. She thinks J should get that and regular flu vaccine. New vaccines make me nervous, but with J's history of landing in the hospital with every respiratory bug he gets, I don't want to take any chances. Plus, with the larger class size this Fall, I'm sure he's going to be exposed to all kinds of fun stuff.

Monday, we are heading to South Dakota for the week. We're going to do as much touristy stuff as we can find! Our last big trip before school starts Sept 1st. Where did summer go? It's so chilly today, it feels like Fall!

The quest for the Elmie fleece (or heck, just a pre-made Elmo throw) continues. I never thought I would have so much trouble finding something. I've tried Walmart, Kohl's, Target, JC Penney, Sears, Joann's, Hancock, and Google. I did find a 4 pc PJ set at Kohl's for 12.00, so I snapped that up. Anyone have any suggestions?

Little update on the med mess. I finally talked to the GI nurse. She said she had the same go-round with another family's insurance. The one med on the list of 4 that our insurance will pay for that could possibly work is no longer being made by the manufacturer. Wheee! So, we will go forward with sending in the appeal letter, with this new tidbit of info added. The nurse said that we may want to do the GI probe as additional proof that J needs this medication. For now, the plan is to send in the letter of appeal and meet with GI the second week of Sept to discuss our options.

Object du Jour: One of my make-up brushes. I found J brushing the cat with it. Ew, they can have it.

Out of sorts, sort of...

Jackson has been so "not himself" the last week. I don't know if he's missing the routine of school, is having trouble with too many new people and places, is bored and/or may be getting sick. He's been self-stimming by making lots of repetitive noises and sounds. Echoing phrases said by others in a high-pitched voice is also something new. He's back into mouthing toys like crazy, which he wasn't doing as much of recently. J has also been more into himself and not as interactive as he usually is - even with me. Which is highly unusual for him, the interactions he has with me are usually pretty consistent. J's OT and ST agree that he's out of sorts, but he did have a pretty good day in feeding today.

We were supposed to meet with the rep for the autism waiver today, but she got the time wrong and didn't show up. I called her and we rescheduled for tomorrow. Now I have to re-clean the mess the boys made in the living room.

Still waiting on Randy to upload the latest pics. *toetap*

Object du Jour: J and I went to Joann's and Half Price Books after feeding therapy. I wanted to find some "Elmie" fleece (as Jameson calls Elmo), to make him a fringy blanket of his own. No Elmo fabric, but plenty of John Deere and zebra print fleece, what's up with that Joann?

So, we headed to HPB and I got a few books I've been looking for and I also got a book light, so I can read when I sit with the boys waiting for them to fall asleep. Jackson played with it most of the afternoon. He put the light behind every toy he could find to see what would happen. (Ironcially, J was totally his old self at both Joann's and HPB. Hmmm.)

Our Brush with Greatness

Busy weekend! My brother and his daughter were here Friday and Sat, Randy's sister and her husband stopped over for a bit on Sunday (HI Aunt Donna!) and we headed back to State Fair on Sunday afternoon. And on Saturday, Randy and I volunteered to work at a Brewer's autograph signing. Trevor Hoffman! (Yum!) We left the boys with my brother for the latter. It was too hot out and we were too busy running around.

I found out first hand how nutty Brewer's fans can be. "Can I have that case of water the players didn't drink?" Um, no. "Can you grab a bunch of Ryan Braun's photos for me?" (This was while he was signing for the people that had waited since 4 am to see him). Again, um, no. "What do you mean I can't show up 5 minutes before the players arrive and still get a wristband for an autograph?" Sheesh. Some people had gotten in the line for Braun and Hoffman at 9 pm the night before! I love getting yelled at by strangers for things I have absolutely no control over. Good times. But I got some great pictures and a cool t-shirt. Randy was very excited to be "stage security" for the players during the Q&A session. lol

Jackson was a little better on our last trip to Steak Fair. He seemed to be enjoying some parts of it. Jameson loved the lemonade!

This week we have the boy's annual check-ups and then it's off to MN for a little vakay for me and the boys and a little work for Daddy. Jackson will be thrilled, one of my goals is to get him a new potty from Ikea.

Finally got a call back from GI regarding the meds and ph probe. We weren't home, so now we're playing phone tag. Not it!

Object du Jour: The rectangle mirror. J loves this little mirror that we used to see them in the backseat while driving.

I think my next post will be pretty photo laden. We still have a ton to upload.

Elmo says, "What?"

Jackson brought the stuffed Elmo to me this morning, pointed to his head and said, "No ears." Amazing that he noticed that.

*sigh* Here we go again with Walgreens, insurance and drugs. Will I never learn? Turns out Walgreens has not been billing for J's Prevacid correctly over the last 8 (!) months. Our insurance doesn't cover Prevacid and it's 185.00 a month. Ouch. The 4 medications for reflux they do cover are adult meds and J can't swallow a pill. According to our ped, they are not good drugs to try to dissolve to put through the tube. Sooo, now I have to write an appeal letter and try to get the meds covered. Fun stuff! Our ped has been wonderful in helping us try to navigate this maze.

J was off the meds for 4 days because we didn't have any. The poor kid was crying last night saying, "belly itchy." I found two pills in his overnight bag and the ped is going to get us some samples to tide us over until we can get this mess straightened out.

The ped also said that in a note from the GI dr, it was mentioned that GI wanted to do a PH Probe on J to see what the levels of acidity in his stomach are. I guess depending on the levels, there could be concern for the erosion to turn cancerous later in life. This was never brought up to me before, so I asked what the test entails. Basically, they would put a probe in his nose down into his belly and leave it there for 23 hours. We'd have to stay in the hospital overnight. I have a feeling if we have to do this, it will be the longest 23 hours of my life. I have a call into GI to see what she says.

Daddy is taking J to dental clinic today. He's better at holding him down than I am. Hopefully, all will go well and they will both make it out OK with a new toothbrush and sticker.

Object du Jour: A magnet from the fridge that has smiley faces with different expressions. There's one with wide eyes, mouth open and hair sticking up. Jackson calls this one, "Too loud." lol