Read this.

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


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

Announcing the newest member of the Crew....

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

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

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

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

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

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

Go Crew (big and little!)

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

Cover the shylish!!

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

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

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

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

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

Coffee and Genetics and a Magnifying Glass!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I want my MIC-key back.

*end scene*

So how old is Jameson's younger brother?

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

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

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

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

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

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

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

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

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

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

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

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

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

Did he have a clown in a head lock?

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

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."

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

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?"

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

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.

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?

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.