Thursday, January 29, 2009

the surgery is postponed until next tuesday, the 10th, because it's more convenient to miss work that day. i'm glad; i need more time to adjust. even though it's a super-simple procedure and we've been through it twice before, i'm more nervous than i have been before.

in other news, he took his new handy manny phillips-head screwdriver and tried to fix the vent. imaginative play is a rarity around here, and usually he repeats a play scheme he's been shown by an adult. this time he tried to unscrew the screws on the vent. sometimes the tools even talk to each other (they talk on the show). he's so stinking cute.

that's all for now. it's a stop-thinking kind of night.

Wednesday, January 28, 2009

third time's a charm?

punkin has to get tubes in his ears. AGAIN. this is the third time, the first set being put in when he just turned one. the ENT said that if these don't stay in, he'll put in ones that are meant to be almost permanent. grrr.

i am mostly "grr" about this because we had to wait an hour and a half to see the ENT, who read the report from the audiologist and looked in each ear before telling us he needs surgery again. AN HOUR AND A HALF. then we were expected to go pre-register immediately for the surgery scheduled for TUESDAY. don't know what time, we'll find that out sometime monday.

punkin was so well-behaved, but i had nothing to entertain him and the appointment blew his schedule to pieces. of course all of this made for the perfect excuse to eat dinner at my favorite place for pizza. i just can't imagine what it would have been like without the clonidine. life is now divided into two sections: before meds and after meds. meds are by no means a cure-all; they did, however, give him the ability to focus his attention between the fish tank (with nemo and dory fish) and one of those pathfinders (the beaded things) so i could fill out paperwork.

now it's time to decompress with leftover birthday cake and law and order.

Monday, January 26, 2009

why is there no wine in this apartment?

The rules for this award are as follows...Choose a minimum of 7 blogs that you find brilliant in content or design.Show the 7 winners' names and links on your blog, and leave a comment informing them that they were prized with "Honest Scrap." List at least ten honest things about yourself.
1. The birthday decorations are still up. Last year, they stayed up for 9 months.
2. I didn't listen when he said "uh oh" after I put him to bed and therefore found myself cleaning up poop 10 minutes later. I found out when he ran out with some in his hand and plopped it rightfully into the toilet.
3. I now have this bookmarked so that I can go back and read it after a long day. I highly suggest looking up Britney Spears as well.
4. I have size 10 wide feet. This makes finding shoes difficult. So if you see me wearing ugly shoes, chances are I know they are ugly but they are better than my other option, which is usually along the lines of nurses shoes. This is also why I wear flip flops until the snow falls.
5. I really hate going to the Post Office, especially now that I moved and there's no automated postal center and the people in my neck of the woods tend to be a little stinkier than the people in my old neck of the woods. I know this is an unfair generalization, and yet I insist on making it. Because its true. And because I am bitter about losing the automated postal center.
6. I fear the phone. You can call me (usually), but I will most likely never call you. Unless your name is Oma, in which case I will call you every 5 minutes.
7. I got a D in statistics and an A in Virginia Woolf. A 31 on the verbal section of the ACT and a 17 on the math. This is my Fragile X talking -- not adding.
8. I wanted to turn around and break into the large motor room at the OTs office today to let Punkin play in the ball pit. For whatever reason he didn't get to play in there today and he was completely devestated. He handled it very well, but it was obvious he was disappointed.
9. I really wanted to throw away the present Punkin's dad sent today. Of course I didn't, because I am not mean -- but I wanted to. He made no mention of FORGETTING CHRISTMAS. Glad he could remember the day I spent pushing a baby the size of a small watermelon ..... never mind. (It was Lincoln Logs and a gift card, by the way. The logs are on a top shelf, as they would otherwise become weapons.)
10. I gave up a WIC appointment tomorrow to get my checks for the next three months so that I wouldn't have to miss my respite time. I am very selfish about my respite lately. I did reschedule for the 11th, though, so I'll let you know how that goes. Always a delight! The things we do for free milk and cheese. Oi. I once sat through a video informing me not to PRECHEW my son's food. Srsly.
I am not tagging anyone, unless Lion, D, and Boo want to participate.

four years old!

BUBBLES! His OT had him use his pointer finger to try and pop them today. It was a cute idea that we will be attempting at home with the crazy-awesome bubble wand from our friends. These same friends gave us a police car from CARS. It has a siren. It also has an "off" switch. 'Nuff said. (I really do like it guys, and so does he.)

LOL! Best card ever. Don't worry -- the bottle was tightly closed, and maybe even empty.

The balloons that came with a super-cheap, super-cheesy party decorating pack were perhaps the biggest hit of the celebration. He would approach my friend, hold the balloon up in the air and yell, "READY?", chuck the balloon at her face, and then run around shouting "I GOT IT! I GOT IT! I GOT IT!" after she tossed it back his direction. I guess "shouting" isn't really an accurate word, though, considering that Oma could hear him out in the parking lot.... oops. My neighbors already know about our lack of volume control, I guess.

This photo has nothing to do with his birthday, but seriously are you not smiling right now? Oma and I found a new Woody doll on Ebay. He has to "SIT!" and wear his "SEAT BELT! I didn't even know he knew the word "seatbelt." Safety first!

This was easily the best birthday yet. I don't know how he knew what to do, but he did. I keep telling people, even people who aren't ever really around him, just wondering if perhaps they were the one to whisper in his ear, "Now you choose one present off the table, go sit in the middle of the room, open it all by yourself, delight at the surprise inside, and go fetch the next gift." And later, "Just climb up on that chair, even though it's not actually your chair and you never sit anywhere but your chair, listen to us sing Happy Birthday, and blow out the candles on the cake without being told." WHO? Who was it? I HAVE TO KNOW because you are MAGICAL. Can you tell him to poop in the toilet?

He loves this toy. They dance -- DANCE -- and sing!!! He also got a magical star wand (thank you, Aunt K), Handy Manny shoes (Oma and Opa), art supplies (Auntie Em), and a kid's mp3 player. We have some awesome friends and family -- love you!

Wednesday, January 21, 2009

25 things

I was tagged to do this on Facebook, but I thought I'd rather post in on here since I'm feeling "meh" and making lists generally cheers me up.

1. This guy on Law and Order reminds me of a friend from college. I don't know what it is. But it makes me crazy because we always used to hang out at the bar together. So now every time I watch Law and Order I crave a beer.

2. No, just to maintain my dark and mysterious nature, I will not disclose whether or not I gave in to the nostalgic craving this episode.

3. Punkin has taken a few steps backwards in potty-training, which may or may not be partially my fault for not being diligent. He has, however, taken a giant leap forward in his ability to clean up. I told him to clean up his toys, walked away, and came back two minutes later find the blocks back in the bucket! Oh YAH. I thought it was a fluke, so I tried it again today WITH THE SAME RESULTS.


5. The ex's mom is going to have us come visit this summer. We just talked for 50 minutes. Every time it gets easier. She is a very nice woman with a kind heart and good intentions. I just don't want to say the wrong thing about her son and then cause a huge rift. I don't need no drAma. She's really the one person from his family -- including Punkin's dad -- who seems to care the most about us.

6. I miss my college friends something fierce. FIERCE.

7. Where is my beloved Project Runway? Why do network executives bicker and take away the loves of my life? WHY?

8. I used to think HGTV was the TLC wannabe, but now I love watching House Hunters and My House is Worth What? Basically all of their shows are the same, but whatever.

9. Remember how I used to blog from Panera while enjoying one of their 1,000 calorie sandwiches? The one with asiago cheese and chicken and caesar dressing and a tomato because I am apparently odd and love tomatos on my caesar salads? I live really far away from Panera now, so I settled for reading a book at the library's coffee shop. They have some delicious hot chocolate. The machine that makes it sounds like an airplane taking off overhead, but it's delicious.

10. I missed Law and Order, and my beer turned warm (OH MAN, I gave it away!) because I was talking to The Other Grandma. So how was it? Anybody?

11. I love bathroom and kitchen cabinets that resemble free-standing furniture, with the little feet.

12. I also love big, antiquey -- antiquish -- antiquy -- antique res -- err -- rings that are either actual antiques or which resemble antiques.

13. Two of my coworkers wanted to buy Punkin a snack from the snack machine when he let out a pretty fake cry after I broke the news that I didn't have any money. So he got some Cheez-Its. The kid knows how to work a room.

14. The medicine at night seems to be helping with his overly emotional reactions. He's sleeping a little longer, though, and then not taking a nap at school. So far he rests peacefully (!!) but just doesn't sleep. Overall I think it's been a successful switch. His teacher is gone this week, though, so I'm anxious to hear what she says.

15. Birthday Saturday! FOUR!! He's gonna be FOUR! Wow. That's all I have to say about that. Except that I bought him a very obnoxious present. It sings and dances.

16. When I was pregnant I had a nightly snack of raspberry yogurt, dill pickles, and cheddar cheese. Are you barfing yet?

17. I don't like smoothies made with milk. Yuck. Yogurt is fantastic, but not milk.

18. When I visit big cities, or even small ones I guess, I love just wandering aimlessly. When I visited Lion in New York, I had the best time riding the subway to a new neighborhood each day and just watching the people. Well, and DSW was pretty nice, too. I didn't do the Statue of Liberty or anything. Another day. (I feel like I told you this already. Oh well, too bad so sad.)

19. Chocolate Chip Cookie Dough Blizzard at Dairy Queen, Oreo Shake at Whiteys. I do not like Oreo ice cream. I love vanilla with chocolate syrup and sprinkles -- the round ones. It's a good texture combination.

20. This post is a little heavy on the food. Speaking of, I like mixing hot and cold. Have you ever dipped a hot french fry into a Frosty? I recommend.

21. I derive secret pleasure over watching Punkin squirm when presented with kush balls and spikey things when we're at the OT. He wants to badly to please his OT and touch them, but he just can't bring himself to do it. After some time he'll grab one strand of the kush ball and hand it to her, making sure to keep it far away from his body. I just giggle; it's so darn cute.

22. I love watching the swearing in ceremony every election; I think it's the peaceful transition of power. It's amazing, really. I turned it on during lunch yesterday. The kids were a little distracted, but it was nice to hear the prayers and the speeches.

23. I rarely have pleasant dreams anymore. Ugh. Thank goodness for medication.

24. I love to read. I will read anything. The back of the shampoo bottle, a magazine about diabetes, I don't care. If it's there, I will read it, especially if I am waiting. I want to turn off my computer and read actual books more often.

25. I love school and writing papers. I mean, I hate it but I love it. I miss the discussions from college. I don't miss being exhausted, though, because it was exhausting! So funny that I'd say that now as a single mom of a special-needs preschooler, but it's true. At least now I usually get a full night's sleep!

Monday, January 19, 2009

the kid who loves elmo refuses to watch sesame street

funny pictures of cats with captions
more animals

SO, this one time I made a funny "NOM NUM NOM" noise while attacking Punkin's cheeks-- which are, by the way, the softest, squishiest, most bestest cheeks God ever made -- and now he curls up on the couch or crashes onto my bed and demands "NOM NUM!" until I comply. So sweet. One of those things, though, that may have to end before he's 15. =)

Saturday, January 17, 2009

disney on ice = success!


The show just started and he already had Fraggle Ears!! During intermission he kept asking "More? Cars? Mom? More? Der?" while pointing to the curtain. I think he liked Mickey Mouse and Donald the best, though. He got a BIG smile when he saw Donald come out.

The super-expensive cotton candy came with a rubber Cars hat. Of course, he wouldn't wear it on his head or eat the cotton candy -- so I did!

He couldn't take his eyes off this lady when she was flying around during the Tinkerbell part (which was a little long for my liking -- I would have rather seen more cars). I don't know how they skated in their outfits. They were CRAZY! I'll have to find more pictures on Oma's camera so you can see them. It was wild. For the voices they piped in stuff directly from the movies or from what I'm assuming were other recordings.

He was very tired by the end of the show, but all the excitement and MAJOR sensory input made for a restless night. So now he's happily napping after a quick trip to the grocery store -- we needed ketchup. Have I mentioned that I can walk hand-in-hand with him through the grocery store now? And he holds my hand. And he listens. He even picks stuff off the shelves that he wants. Like the cookies that I said no to just before we came home for his nap.

Man, I really wish I had a cookie. *Sigh*

Friday, January 16, 2009

he's so clingy, he even wants to rest his head on my shoulder when he goes potty. as if it's that taxing to sit on a toilet! boys!

three words: disney on ice. that is where we will be tonight, courtesy of oma and opa. it's an early birthday present. i can't wait to see how he reacts. Cars, Mermaid, Tinkerbell, The Lion King. EEEK. i just hope he isn't scared! i gave him 1/2 a melatonin to help him take a really long nap in preparation for the late night. the show doesn't start until 7pm, which is his normal bedtime.

the low today was -27 and the high is 3, so no school. again. i called the respite agency yesterday and begged them for even a few hours on saturday. i am not meant to be a stay-at-home mom.

Thursday, January 15, 2009

disaster averted

day two of staying home. punkin woke up at 5am, which was expected since he took a long nap yesterday. he stayed in bed with me watching cartoons until 6am when -- gasp -- the cable went out. and when the cable goes out, the internet goes with it. we survived by the skin of our teeth,* on only dvds and books, when at 8:34am all the lights on my cable box magically lit up again. phew.

* i don't actually have any skin on my teeth. just an fyi.

Wednesday, January 14, 2009

It's minus 27 degrees here with the wind chill. School was cancelled today because of the cold and heavy snow and by this afternoon they announced it was cancelled for tomorrow, when it will reach 40 below with windchill. Everyone loves the midwest.

Punkin's teacher let me know that while most of the past week or so has been an improvement, there still seems to be some issues. I think he's struggling because he's tired and in a daze. His behavior has in some ways taken a turn for the worse. He's less agreeable (some might say oppositional and aggressive) and definitely more emotional. So I called the FX Clinic (Which, turns out, I will have to pay for out of my pocket -- $500 to see one, albeit very special, pediatric neurologist). They suggested giving him his entire dose at night and nothing in the morning. So he's getting 3/4 of a pill at night instead of 1/2 at night and 1/4 in the morning. This still doesn't solve the logistical nightmare that is cutting a pill the size of a sudaphed into quarters.

I'm loving the days off even though my paycheck will take a big hit and even though I keep complaining about how Punkin insists on touching me every second of every day. I should be relieved and excited that he's bonding with me; instead, after 16 hours, I am annoyed. The good news? We only watched Elmo's Christmas 3 times. AND I convinced him to play with his Aquadoodle, some playdough, and some paint stampers after a few tears and general resistance.

Right now I am feeling blessed to be warm, cuddled underneath four strategically layered blankets. (You have to put the heaviest one on top.)

switching to digital tv

Tuesday, January 13, 2009

i really need to make him a new schedule board

So, I've pretty much ruined Punkin's entire afternoon. He is soooo dramatic. No idea where he got that.

We had just walked in the door of our building when he freezes on the stairs, "Uh oh! Fishit! (fix it) Oh no! Monna!" He's tugging on the laces of his shoes, desperate for them to be retied and tucked back neatly inside his shoe.

"It's okay, we'll take them off inside."

"Monna! OH NO! FISHIT!" He goes from desperate to dying in matter of seconds.

"It's okay. Let's go. Go up the stairs."


"Punkin! Go. UP. THE. STAIRS!!!" He completely disregards me, of course, and I walk past him to unlock the apartment. "Let's go. Come on."

"OH NO OH NO OH NO!" Arms and legs are flailing, smacking into other body parts as I lift him up on two feet and prod him through the doorway.

Now, this where things get really bad. See, like your children, Punkin has routines. And his after school routine is: take coat off, take shoes off, take socks off, yell 'help' when challenged with removing shirt and pants, run (or be dragged) to bathroom, pop popcorn, watch movie, drink juice.

And I was trying to have him remove the offending shoe BEFORE he even had his coat off. But he couldn't take his coat off because of the offending laces. In fact, he couldn't function at all because of the laces and their unruliness. But he wanted sooo badly to be naked and free and munching popcorn.

Tears and pleads and potty-time later, he is now happily watching Elmo's Christmas Countdown for the two-billionth time. (For real, we watched it 7 times in a row on Saturday morning. That's five hours of Elmo and his celebrity friends -- Jennifer Hudson, Jamie Foxx, the guy from King of Queens, Ben Stiller -- sing about the Christmas counter-downer and miracles and believing in Christmas. To those wanting a Christian Christmas movie, this is not it. =)

Gotta go. Respite is here and he's being a brat, I mean oppositional, because she's forcing him to do work. Must. Escape.

Sunday, January 11, 2009

money, money, money

So every time my sister or my mom drive my car they complain about the brakes. This has been going on for a couple of years. I've never thought it was a huge deal; in fact, I thought their breaks were super-touchy. You know? The kind that screech to a halt just by breathing in their direction. Anyway, I'm sure you can see this coming, I took the stupid car in yesterday. Turns out not only does it need SIX HUNDRED DOLLARS worth of work on the brakes, but it needs $280 for a sway bar kit. AND my dad saved me about $250 (mostly labor costs) today by replacing some belts, checking my lights, fixing a leaky windshield washer tube thingy, and reapplying two bolts for the fender (?) that were just rattling around for who knows how long. So far the sway bar has been fixed, but they had to order the part for my brakes. It's a power booster or something. Basically my actual brakes were fine because I was never really using them. I was simply coasting to a stop. That's safe, right? I'm sure I'll notice the difference (and the problem) after they're fixed. Might have to relearn how to drive. The good news is that Punkin does have SSI money in a dedicated account that we can use for car repairs. I can't use it to pay rent in an emergency (or a non emergency), but I can use it for car repairs. So eventually I should be reimbursed.

Punkin was super emotional and tired at church today. He also stood. STILL. In one place. For three minutes. On two separate occassions while he waited for me to talk to some grown-ups. The second time -- after church -- he seemed quite dazed, which is disconcerting. I suppose it could be from being tired. Or it could be because I have to cut the tiniest pill ever made (0.10mg) in half (0.05mg) for his night dose and then cut the remaining half in half again (0.025mg) for his morning dose. Even with a pill cutter, it is remarkably difficult to slice it evenly. Usually there's either a small piece and a big piece or it just crumbles.

I created a FXS Circle of Moms Group on Facebook a few months ago and then I couldn't ever figure out how to get back there and check it for members, ect. Honestly I didn't expect much. Well, I ended up there today and realized there are 16 members -- all strangers! I'd like you to join regardless of whether or not you are a mom.

My fourth toe randomly goes numb about three times a week. Discuss.

Friday, January 9, 2009


The meds are going really well. Each day has gotten better. I take this as reason to celebrate. Hey, it's almost 5:00!

Also, I found this completely addicting and mindless game.

Wednesday, January 7, 2009

a glass of reisling, stat!

The past two days have been much improved at school. Punkin's been a little sleepy, but otherwise seems, well, to have slowed down. I'm even seeing it at dinner -- he's using his fork. HIS FORK. Without being threatened. Love that.

I had his parent/teacher conference today. His teacher (HI!) and I talk every day, so nothing was especially shocking. She and I are both concerned about the development of more and more autistic behaviors. More self-stim, the loss of functional abilities (mainly those that require multiple steps -- ie: hand washing), sorting and lining up objects by color, lessened interest in socializing with his peers, more perseveration. One of his goals was to make a vertical, horizontal, and circular stroke. In September, he could imitate all three. Now, he scribbles uncontrollably and tears the paper to shreds. Hopefully the meds will help with this; time will tell. SIGH. It's not that he isn't making any progress, it's just that he's changed and it needs to be noted. But, like with so many aspects of life, I have to W A I T for more answers. Blah to waiting!

The diagnosis of FXS comes with some degree of autistic behaviors. So I guess I'm not sure why these developments weigh on me more than the diagnosis of FXS does. I guess I feel more helpless against these behaviors.

To end on a happy note, though, he sat for -- wait for it -- TEN MINUTES. In a row! At school!

p.s. I just went in to check on him. He must have heard me because he rolled away from me and said, "No no" with his eyes still closed. I think he thought I was trying to wake him up for school. Made my little heart melt. Oi.

Monday, January 5, 2009

what actually happened? the world may never know.

school was baaaddd. lots of tears. extreme sleepiness. so, we wait and see. maybe by the end of the week i will have some more answers.

the tv still smells like poop. and if i'm going to bring up the incident again, i have to say that i forgot to mention that a turd was in the toilet and his pull-up was in the trash. so he was really -- at least initially -- trying to do the right thing. somewhere in his head he's decided that as long as the poop eventually ends up in the potty, then all is well. i think i may be at fault for this one as well. i tend to dump and flush his BMs to reduce smelliness, so i think he is again being very literal in his interpretation of the world.

BUTT that's enough of that. monday was a bit of a shock to my system. i need to say goodnight.

Sunday, January 4, 2009

punkin painted my bedroom

so i have this really bad habit of falling asleep while punkin is watching morning cartoons. let's just say i may need to try harder to stay awake. a lot harder.

what brought about this sudden revelation?


all. over. my. bedroom.

my tv, my chair, my dresser, my LIBRARY book, and -- of course -- my punkin.

it had been there a while, too. cause it was getting crusty. and it was REALLY ground in to the chair. and i just can't quite figure out how to clean this particular chair because it has a wicker seat. so the more i clean it, the more the poop just grinds itself in to the wicker. it's now "stained" dark brown.

and in the process of cleaning my tv, i must have gotten some cleaner behind the buttons because now it just shows fuzz, then nothing, then fuzz, then the display screen, then nothing. it's lovely.

just thought i'd share my extra special experience with you. hope you're not eating breakfast.

UPDATE: the tv magically works again and the chair is in the dumpster.

Saturday, January 3, 2009

mommy brain

Something is seriously wrong here. I have forgotten 1) an OT appointment 2) to stay home and wait for an electrician to look at two outlets that don't work 3) to meet friends for drinks (well, i remembered but got distracted by a major poop clean up and a melting - down preschooler) 4) an appointment to have my breaks looked at/fixed 5) all of the questions I wanted to ask Dr. Elizabeth Berry-Kravis at our appt. Monday and 6) the rest of the things I forgot that I was going to add to this list. Vacation is bad for the memory and the belly, but oh so good for the soul.
Punkin is doing better. He's still clingy and emotional, but it's getting a little better each day. And honestly, I love all the hugs I'm getting. I think Haley may be right that part of it is just knowing that he's going back to school soon. The other part may be medication related. I say that because I've seen other kids come to school on meds for the first time with that lost/spellbound look on their face for about a week before they adjust to life at a radically slower pace.

Oma and Opa came over to help me eat the scrambled eggs with cheese and ham that I made for dinner. Punkin gave a clear NO to my creation and instead opted for leftover pizza. Once he went to bed we put in Little Miss Sunshine. (It's about time I see it, I know.) It was great; I highly recommend. A little strong on the language, but good stuff. We borrowed it from the library -- a last-minute adventure that didn't go very smoothly. Punkin is not impressed with books. *Heart breaks.* I WILL keep trying. I WILL keep trying.

Thursday, January 1, 2009

the kid is glued to me. i don't know if it's the holiday letdown or the meds, but for a while there it was a little crazy. he literally would not let go of me. i'd go to put him down and he'd just hold on tighter. he woke up in a sour mood, too, was cranky (really!) around mealtimes, and slept two hours this afternoon before i woke him up. it's only day two, so i know i can't draw too many conclusions yet, especially given the craziness of the past week.

in direct opposition to his turbulent emotional state, the kid is calmer overall. yesterday he stood and waited for me while i filled our sodas at a fast food place. then today he sat in the cart at the grocery store the entire time we shopped. and he is playing with toys a little more than usual -- and by playing i mean lining up blocks according to color rather than throwing them around the living room. so we shall see. i'm trying to make sure he gets to bed on time the next few days to prepare him (and me) for monday morning. but let's not talk about that....


I was in bed by midnight, how about you?
(9 months old in photo)