Ongoing as always

Today I got a call from my daughter's MD's office.  She lad a CBC and CMP done about 2 weeks ago when she came down with pneumonia (which of course she had to share with me).  Her T4 is 13.5

We have to do a Thyroid panel now. 

This would explain many things unless it is elevated from the bacterial infection, which it could be, but her white count was normal. 

 So, bully us.  I take her for labs tomorrow afternoon.  We talked about the lab draw today on the way to ballet class.  Zbug says "I am afraid of the dark and IVs"  I reminded her it's only a lab draw, not an IV.  She calls it a shot.  She can point out what veins are good- lol.  She likes to pretend she gives me shots.  I have to show her the correct place on the arm cuz she'd get me on my wrist- that would be painful.

We finally got word from PRC that Bub's augmentive communication device should be here in 2-3 weeks.

I started the process of getting this thing on Dec 10th of last year.  I bet a bent penny we will get it on Dec 10th (a Thursday).

Both kiddos have glasses now.

(Imagine pictures of my kids until either Chrome lets me access google sites or Explorer lets me upload images)

I am back to working Nights again.

Yeah, it keeps going that way.

school starts on monday

I try to sound like I'm kidding around when I talk about how excited Joe and I are about Bub going back to school on Monday so I don't sound like a terrible parent.  Then I self-depreciate myself about how I must be a terrible parent to say I'm excited to have Bub back in school.  This tactic usually gets me lots of praise about how much we do for Bub and the challenges we face.  But I don't do it for that reason.  I really do feel bad that I get so excited for Bub to be at school.  and I am happy with how much he loves the routine of school, and the experiences he has there.

But to be honest, I really look forward to the break of not having to be on point 24-7+ while he's home.  And that I think is what I really feel bad about.   I think about parents who have kids that are absolutely non-functional, children that weigh over 80lbs and have the mentality of a 3month old.  When they need a respite, people understand, and it makes ABSOLUTE sense.  and I'm absolutely jealous.
See, look at Bub: he can dress himself, feed himself, can make a few simple meals for himself if left to his own devices, can write a bit, ambulates, can use a toilet properly(when he feels like it)...in other words, he's pretty functional.  People don't really get that parents of kids like this need a break too.  We should be "fine"

And it's not like w/ normal kids, where you sweet-talk your friends to take your kids for the weekend in exchange for you taking their kids for them some other weekend.  If you ask parents who have a special-needs kid, you know how much MORE you are adding to their plate, so that's not an option.  You can't really ask a friend that has normal kids, because they have NO IDEA NO MATTER HOW MUCH YOU TRY TO EXPLAIN of what they will encounter while your child is in their care.  So that's out.  It's not really fair to beg your family either, they need breaks too.  so you have no one.  it really really sucks.  so you suck it up and hope the next week is a little better, and that there will be less poo to clean up off the floor.

or walls.


or ceiling.


I love my Bub.  I can't wait for Monday!!!!

not-cation

sorry, I've been kinda down, and kinda tired, and kinda overworked (by choice).  kinda had Bub throwing toys at me.  Kinda had family stuff to do.  Kinda felt like my life is being sucked out.

Joe's in the same "kinda" mode...only he doesn't leave the house to be overworked, he's overworked IN the house and leaves the house to relax.  I try to not leave the house if I don't have to work.

I've been really bummed out.  pretty much have been operating on: work, pass out, spend an hour with the kids while I try to wake up, work, rinse-repeat.

Yesterday Joe convinced me I need to leave the house, and the kids were bouncing off the walls *really*  so we got chinese buffet, Bub picked nuggets, shrimpies, fries, and an egg roll.  and grapes.  and jello.  Zbug was stealing Bub's jello.  Zbug wouldn't eat her ice cream.  Zbug only ate the jello and some grapes (also stolen from Bub).  I think Bub's shrimpies had milk in the coating bc Bub started the "inappropriate laughter" routine while we stopped in at payless to get Joe some tennis shoes and Zbug a new pair of  "Pretty" shoes, and the only pair that currently fits is her tennis shoes that light up.  while she greatly enjoys her flashy shoes, it doesn't really go well with her Sunday dresses.  so after sizing her (I worked shoes in HS, so I do this myself since sales-people and my offspring do not mix well)  I found several "pretty" and pink-colored shoes and laid them out for Z to examine.  she was torn between a pair of Disney(c) sandals that lit up.....some glitter shoes and then the new shoes that she picked......

Rejected by Zber

Rejected glitters

Dorothy Gale shoes rejected *sniff*

Her brand new "PRETTY!!!" shoes.

Crap. I just noticed, Why are all the model shoes size 7????

So the feeling I get about my youngest is that she likes pretty girly stuff, but it better be functional, tough, and easy to put on.

Bub got nothing except mommy drag-pulling-carrying him out of the store as he tried to put shoelaces up his nose while laughing   Joe and Zbug completed the purchase.  we got home, and both kiddos were put to bed.  Zbug slept in her new shoes despite my repeated attempts to sneak in and remove them.  Joe thinks this is funny as he accuses me of being a "shoe-girl".

I was a "shoe-girl" once, but I have like 4 pairs now...(excepting my work shoes) and they are all over 4 years old....one pair is around 15years old since it predates Joe.  Maybe I am a shoe-girl since I still own them.......but they are really cool....

Despite the lack of new shoes for Bub yesterday,  my son was HUGELY happy with the set of Hanes(c) Boxer-briefs I bought him this morning.  so happy that he pee'd on the floor enough times to be able to wear each pair today, thus modeling each color and "breaking them in" simultaneously.



yayee me.



Joe is currently out at the health club working off some steam, which will be followed by a round of beer at the local wetting hole with some buddies.  all that male-bonding stuff or something since there are no coffee-houses here with random jazz/poetry sessions for him to attend....(that gen-x stuff....)

I however will find my trusty benedryl and snuggle up with that.  In rock-paper-scissors, benedryl beats coffee.  I have yet to find anyone to argue otherwise.

nub

class party

I actually made it to one of Bub's class events this year...the very last event.  end of the year party.  I attempted to make some peanutbutter ricecrispy treats, but I thought they were pretty oogy, so at the last min, (after my 45min nap after a 12hr shift) I cut up a bunch of fruit and we whisked off to his school.  only 2 other parents showed upin the classroom-I thought that was kinda sad, but the kids loved fruit salad.  I shoulda done my wiggles songs collection for them.  lol.
Zbug was rather intimidated by all the "big kids" and hid behind Bub for awhile, well, until Bub decided he didn't want his kid-sister hanging on him.  Zbug got the hint and found a teenee tiny chair in the corner to sit in, and then found a rocking chair..rocking chairs are endless sources of amusement I gather....

His teacher got big baked potatoes from a local deli for all the kids which was a GREAT idea since there are very few people in the entire world who have a potato allergy.  lol. apparently Bub loved his w/ just ketchup...as always.

Bub will be going to school next week as a voluntary thing.  Here in smalltown ETX the last week of school is optional for kids who are doing fine or didn't miss too much school during the year, Joe decided Bub should get that last week in, I had an aside w/ his teacher to make sure it was ok.

Anyhow.  it's been a better few days, Bub has been controlling his temper better, plus he got over his tummy bug on Monday, so maybe that was the core problem...

who knows with the mind of bub.  After dinner when Z was in bed, me and bub played "Starfall.com" on the PC, he knows how to use a mouse now.  yayee!

Nubs

PS- Bub and Z didn't think the pb treats were oogy...they devoured the whole tray while I was asleep this afternoon.

verbalizing, gardens and crazy people

couple of things...
 
why in the world would anyone take their infant, 3 y/o and a preteen to walmart at 0200 in the morning?  what are you thinking?  I know I'm not mother of the year, but I value my children's sleep and HIGHLY encourage it on a regular basis.  And if the items bought were of an emergency-type nature, I could understand some sort of problem in the home/family that necessitated such a trip w/ little ones, on a school nite...but toddler clothes, and school/art supplies?  really?  wow.  that is a new one for me....

anyhow, I got my container garden going.  I have tomatoes, bell peppers, cucumbers, a couple types of lettuce,  spinach and 2 zucchinni going.  I have no idea if they will survive my ministrations.  my attempt at tomatoes last year was abysmal, although I could blame that on the drought if I tried at all.

Bub surprised me yesterday.  He wanted me to get something for him, and was trying to pull me up from the couch, I asked him what he wanted momma to do and he signed AND verbalized "go!"

I was so happy with that I don't even remember what he wanted.  I think it was kool-aid out of the fridge.  and then this morning, Joe asked him if he needed to go to the bathroom before Daddy, and he verbalized "no".

I am a pretty happy girl right now...pretty proud of my Bub.  yayee.

:)

Nubs

WOW! Thank you secret valentine! part 2

I am speechless at how thoughtful Ronja Zigler is.  completely.   Thank you SOOO much!

The pretty ring!

Fuel for my all things Gallifrey obsession!

Nicey-nice Eternity products & hand-sanitizer.  How did you figure out it's my fav?!?!?!?!

An awesome knitted sampler square

This is the BEST!  Like the Kit-Kat Commercial!!!!  LOVE IT

Do need to make a quick aside...I loved this so much I put it up on my fridge...however, Bub also liking the picture very much indeed somehow felt it necessary to sneak it off the fridge into his room where he felt he must add to the wonderfulness of this drawing by coloring in the first row of Dalek bumps.   Yeah, that's my Bub.  I have rescued this fab work of art and am now contemplating where I can display it w/o any chances of further embellishment.  lol-kinda.

Thank you so much, I have been in such a funk lately and your thoughfulness has really cheered me up.  :)

Nubs!!!!!!

well, that's another...maybe I should worry.

last week I was put on LOA all three of my shifts.  Thankfully, I was able to pick up one in the NICU, and another at my PRN job.  last night I got LOA'd again, but I will be picking up a shift tonight,...in the NICU.

sigh


Anyhow, I made up Bub's Valentine day party "Bags".  I got all the stuff to have a nice bag for the kids, and then forgot to get bags.  So they are in ziplock baggies.  I swear, I don't mean to be shabby, it just seems to happen.  But I got Bub to give starbursts (one of a few gfcf candies I can buy at a normal store), a valentine day eraser, a valentine stencil/ruler, and a card.  Plus wonderful Hubby Joe signed us up to bring plates, utensils, etc... for the party...last august...and I found out on Friday.  joy.

I hope whoever supplies the cake/cookies supplies something Bub can have, and the other kiddo in the class who is gfcf.  But I doubt it.  I think I will make Bub a treat for at home once Joe takes Zbug to the healthy-hideaway.

nubs

so where is the panic?

So the last three days I have been sitting up all night in my scrubs playing FF13 waiting for a call from work telling me there are enough sick kiddos in the hosp for me to work.  the last three days I have been on call.  Our unit has been on minimal staffing, which means, 1 charge nurse, and one PCT.  that's it.  me and another nurse have been just sitting at home, waiting to find out if we have to go to work or not.

I don't have enough PTO to cover this.

I am not panicking, and I don't know why I am not.  I am continuing to feel listless tho.

I told Joe we would pick up Turbo tax today and I'll do our taxes.  if it's like last year, we should be fine...no new dishwasher after all, cuz that's what we were thinking about getting with our refund.  (FYI- our current dishwasher is called "Nina and Joe"   It would be nice if our current dishwasher was called "Nina, Joe, and Bub", but all Bub does at the sink is play with bubbles and fill up cups with water of varying levels of volume.  ...and giggles.)

we also have to get new shoes for Bub, sometime yesterday he managed to rip the sole off the OUTSIDE of the shoe...we discovered this as he came home w/ a duct-taped foot.  the shoe was somewhere in the duct-tape.  Bub liked his shiny silver shoe and didn't want to take it off.  Z thought it was nice too.  Today Bub is sporting his 6month-ago shoes which thankfully are not TOO small for one day.  I don't think Bub gets PE, so he'll prolly be ok.

I am trying to get Zbug to count to two since she will be that old next week.  I can get her to point w/ one finger.  I can get her to verbalize "two"   (but it sounds more like "Towe")  I can't get her to do both fingers.  Bub gets frustrated with her lack of progress, he has figured out what I am doing.  (!!!!)  and he grabs little Z's hand and tries to make 2 of her fingers point up...which she doesn't like and then starts crying and bapping Bub which then concludes our little lesson for the day. 

Joe continues with his project: a chain-mail duster. (over-coat, trench-coat, whatever you want to call it.)  He shows me his progress everyday.  I can't lift this thing up anymore.  He says he's almost happy with the shoulders and collar.  He's as happy as a clam.  made me look at some clasps he wants to order for it when he's done.    I smile cuz he's happy.

nubs

she must have some sharp incisors...

So I'm helping Bub make orange koolaid.  even tho he won't hold up just 3 fingers when I ask him how many is three he stops getting more sugar after putting three 1/4 c. sugar into the pitcher.  I think I can safely assume he DOES in fact understand the concept of "how many is three"  (small flashback to the song on sesame street where the baker drops all his pastries over himself as he walks down the stairs...seriously...why would you carry 12 banana cream pies down a flight of stairs all by yourself?!?!?)song of three

Anyhow....While I'm adding the water Z comes over to see the action.  I didn't actually see this, but this is my interpretation of what happened, because I turned around to a double scream and Bub holding his pointer finger out like it hurt....

I think Bub decided to be naughty and stick his finger in Z's mouth.  Z has had enough of Bub sticking his finger in her mouth, and bit down.  hard. 

Bub's crying, Z is looking confused and I am trying so hard not to laugh, spill the koolaid, and call for Joe to come over and help, and stop Bub before he starts hitting someone or something with his hurt finger because that's what he does when he's hurting.

I fail at not laughing.

I succeed in keeping Bub from hitting people or things.   Bub is mad at me for laughing, but then decides to laugh bc Momma laughing is pretty funny.  (at least I don't snork when I laugh...)

Oh the joys of my kiddos...

My coffee gets stolen every day

My kiddo's are little coffee-grubbers.  They don't go after Joe's coffee very often, mainly mine.  Prolly cuz I put Silk and sugar in mine, and Joe prefers his black, mainly.

I get me a cup and sit on the couch, first comes Z pretending she wants a hug, but really she's just sidling up to sneak my spoon and then try to sneak out coffee w/ the spoon.  Then Bub realizes I have coffee.  He doesn't even try to be sneaky.  He just grabs the cup, giggles and takes a few swigs.

It's a good thing I don't drink beer.  lol

Joe has found a solution to the red permanent marker Bub decorated his walls with.  It comes off if you rub Shout Stain Stick on it and let it sit overnite.  It wipes off w/ a wet rag.  I tried everything on it, Magic Erasers, nail polish remover, scary recipes I found on the internet and Pintrest...use the stain stick.  I would have never guessed.  Joe is amazing.

Must go, I work tonight, and I'm going back to a wonder winterland of RSV+

Nubs.

As I wrote this, Bub snuck in the kitchen and poured out half a bottle of Dawn on the floor.  Mr. Man is now washing the kitchen floor since he has to clean it up anyway.  Sad part, he's still laughing as he's scrubbing the floor.  How can we really be mad about it?  :)

Little frog in my kitchen window.

There is a little frog that lives on the outside of my kitchen window.  He's been living there for about 2 weeks.  Every morning I go check to make sure he didn't die of "cold" (it's TX- it's not REALLY cold....) because I really don't want to scrape froggy corpse off my window before breakfast.  But he's just sitting there, suctioned to some section of my kitchen window.  He likes it there cuz we leave a lite on in the kitchen all night, so the bugs visit, and he gets free meals w/ no work.  He's a smart little froggie.

A few days ago, Joe and Bub were outside in the back yard burning leaves.  I tapped on the window (from inside) and pointed out the froggy to Bub.  He came over, wasn't sure what the froggy was, so he touched it, realized it was a frog, got scared and ran away.  Joe was watching this, thought it was funny, got the frog off the window and tried to get Bub to hold it.  Bub wasn't having any of that.  He is deeply afraid of all reptiles, amphibians, and birds.  I have no idea why. He loves mammals, we have yet to meet a marsupial.., but anyhow, he's afraid of the froggy, and runs away.  Joe puts the froggy back on the window (very relieved froggy, I'm sure...).  And then what does he do?  he pretends he has a frog in his cupped hands and chases Bub around the yard.

 loverly.

She sleeps all nite now

If I haven't mentioned it yet (I get this and my FB postings confused sometimes), Joe and I converted our overlarge walkin closet into Zbear's new room.  It is awesome.  She doesn't wake up around 3-4am anymore because either Joe or I snorked loudly in our sleep (to be honest...it's prolly ME that wakes her up...I am a wrecking ball when I sleep....Joe occasionally has to run away to the couch cuz I'm all over the place....)

Well, she just loves her new room, she likes to play in there by herself...Bub keeps trying to sneak into her room and steal the toys we have decided to make exclusively for Zbear.  Bub has toys he WILL NOT SHARE.  EVER.  TOUCH ONLY IF YOU WANT TO BE HIT.  yeah.  yayee autism OCD rituals based on toys.  Joe and I want to be equitable w/ our kids.  We will never be fair.  It will always be impossible to be fair when their needs and levels of expectations will always be SO incredibly different. (I will not kid myself about the differences in my kids...not gonna do it...)  So to be equitable, we have decided Z will have 2 or 3 toys that stay in her room, and that Bub can't play with unless she brings it out of her room for him to play with.


Now this resolve is kinda hard, because Bub and Z are starting to enjoy the same kinds of toys, but in different ways.  Bub still really enjoys toys appropriate for 18+ months, but then he also enjoys toys appropriate for his our age group (7 y/o), but he still has some toys from when he was 2 y/o that he will not let go...they are too important to him, the elaborations he sets up with them are too ingrained into his self-ness, I have replaced these toys several times w/ exact replicas as they got loved-on too hard (or covered in poo...sometimes cleaning is not a viable option.....)  So he's grabbing her age appropriate toys and doing his elaboration thing with them, Z is not getting what he is doing and does her deconstructionist act on his elaboration which then ends in multiple kids crying, small toddlers being picked up haphazardly and bounced on the couch, and a 7 y/o banging some portion of his body against the wall.   We like to avoid these activities when possible....  So we pretty much keep special toys in the appropriate rooms and have only generic non-attachment formed toys out in the living room and attempt to keep the siblings out of the other's room.  Not an easy task.  Sometimes Bub wants Z in his room, but then he changes him mind abruptly and she gets upset when he's pushing her out.

we stay busy while they are awake....can you tell?  But so far the new room for Z is working out splendidly.  We have a child-free bedroom once more and are pretty happy about it.

Happy December!  Nubs

Amazing Day, thank you Hartley Family.

Today Joe & I struggled w/ whether or not to brave a church service, and then if we did, what church to go to.  We have been struggling with this for a few months for various reasons, one of which that we publicly acknowledge is that the standard 10-11am service start times really wreck havoc on Zber's nap and the rest of our day is that much harder...and as I have stated before, Sundays are typically hard.

Anyhow, we decided to suck it up and go to our "home" church, mainly because I didn't feel up to being in "make new friends while struggling w/ my run-away son" mode.  it gets hard.  I have to be super cheery to do it.  I'm not super cheery lately.  so we get to church, Zber makes a dash for the nursery...what?  She really wanted to be in the nursery.  who am I to argue w/ my child when she gets a stubborn streak surpassing only her father's?  fine, the lady in the nursery is wonderful, and just loves Zber, so one less distraction to deal w/ while dealing w/ Bub.  I get asked if I want another cat.  ????  no.   Then I get into the sanctuary and note it is set up for a concert.  My whole soul drops to the bottom of my feet.  Bub does not deal w/ loud music well.  Grandma and Grandpa aren't here.  I prepare to leave within 5 min of the music starting.  I hate doing that.  I gear myself up for this, and I will be leaving almost as soon as I get there.

Here is the amazing part:  It was a family that played bluegrass.  Bub was completely mesmerized by this family and their music.  He sat the whole time and listened.  no fussing.  no screaming.  no trying to run away.  He wanted to hold both Joe and my hands.  He wanted me to help him clap in time w/ the music.  He clapped between the songs all by himself w/o any prompting that it was time to clap.

We gave them a large (for us) donation.

I was teary eyed watching Bub enjoy himself so much.

I am a sap.

The music itself was very inspirational.

I need to trust more that God is giving me the right directions, even when I don't feel up to following them and I'm dragging my feet.

After the service I brought Bub up to the leader of the family (the dad) and told him that Bub has never liked live music and has never sat thru an entire service w/o fussing, and that he loved the music so much.  I asked Bub to say "Thank you", and Bub signed "Thank you" and shook his hand.  He asked if Bub was deaf, and I had to explain that Bub has autism, and that he can hear and understand fine, he just can't/won't talk *we're still trying to decide that one*.  He gave us a CD, but I had Joe put some extra cash in the CD donation box.
If you can inspire my son that much, I will throw money at you.  Even tho I'm mostly broke.

If you get a chance check out their website....  The Hartley Family

As always Joe and I got into a "mock" argument about whether or not bluegrass is country.  My stand is that it isn't...bluegrass is to country as dixie is to jazz.    Joe laughed at me.  I know he thinks he's right.  I'll let him think it if it makes him happy, cuz right now...I am super happy.

Nubs.

Happy Thanksgiving!

This year is a year to be thankful about.  Zber is slowly beginning to verbalize, she now will "Moo" with me, and we are still hearing "up" and "no" and "byebye"  Bub is able to write his entire alphabet and 1-20 all by himself w/o any prompting.  Joe has started designing again, and I have a new job in a pediatric unit.

We are going to Grandma Dorlaine's and Grandpa Ken's for Thanksgiving lunch in a little bit. My contribution is broccoli salad and a dairy-free version of Chocolate trufle pie.  One of the BEST chocolate pies I ever had, thank you to Lindy Loo from "Yeah, that Vegan Shit".  but although we are not vegan (at all) vegan recipes are the best for us to use for deserts for Bub's food allergy to all and any milk products.

so I am off to shower and wake zber from her nap (she has been enormously crabby today).  Love you all, and God Bless us all!

Nubs

So, Joe tells me the kids drove him crazy today while I was at work.  I believe him.  They are both still awake and protesting bedtime.  Z goes to bed at 6:30 normally, Bub is in bed by 7pm.  it is 8:30 right now.  I just changed Z's wet diaper and rocked and sang to her.  She wouldn't settle down, and kept trying to play peekaboo, and pulling off my glasses.  Momma said, "no ma'am"  and put her back in bed. I also fed them before I put them to bed, as Joe didn't realize the pork chops I prepared (uncooked) was intended for him to pop in the oven to cook to feed the family for dinner.

This working days is not working well for me. My kids get hyper when they finally get to see me, right before the go to bed.  hyper and bedtime are not a good mix.

Bub started crying when he heard me get home.  I have no idea why.  then after lots of hugs and kisses, he got hyper that I was home.  after eating he got even more hyper.  he started settling down after we did his bedtime routine, but he is still up.  I hear him playing w/ his "Leapfrog refrigerator DJ" toy (previously referred to as "anni-oo" d/t song #3 on the alphabet 'channel'). He hums along w/ the songs.  his favorites are '20 little leapfrogs', 'Birdie bye bye', and 'the Uppercase letter song'.  He used to love 'Anni-oo' and drew pictures of the little guy dancing the "anni-oo" until momma started singing the song all the time and getting him to do the 'Anni-oo' dance with me.  Now when I ask him to play "anni-oo" he giggles and plays every OTHER song on this thing. 

anyhow.  long day.  I have 1 day off and then 2 more on.  I hope 1 day with momma is enough for the kids to be ok w/ no momma for 2. 

Nite & Nubs.

it's better today, kinda...

well, the dishes are done, most of the laundry is cleaned and put away thanks to Joe's helpfulness this morning.  Unfortunately the brakes on our car did something bad last nite while Joe was coming back from his nite with the boys.  No accidents or anything, but he's at Sears right now attempting to get them fixed.  Bub is at grandma's, and Zber is chillin w/ me, half watching TV and half playing w/ sidewalk chalk.  (alright...really she's kinda EATING the chalk everytime I turn my back....guess I'll be getting out some miralax for her tonight to counter the extra Ca2...puff)


I made Yabluchnyk this morning (Ukrainian Apple Cake), and we have 3 pieces left.  Bub kept sneaking off w/ apple slices while I was doing all the prep work.  I discovered that my egg-cutter also is wonderful for slicing peeled apples into uniform slices...and that Bub is able to help me cut apples now w/o my having to worry if he will slice off his fingers.  Yayee, one more thing I can let Bub help me with in the kitchen!!!

Little Kitty Masquerade and Zber tussle like puppies, and Bub gets concerned/jealous of/for Zber and splits them up which ends in massive Zber crying.  I tell Joe that I have no idea how he does it every day and that YES I WILL get him a membership to the fitness center associated w/ my new job....esp since it has free day-care while you work out and they have no issues/limitations with us bringing our son w/ non-verbal autism.  well...at this time they have no issues with it....that may change after a few times we visit with him....sigh,


Must dash.  Nubs all today.  :)

Good day w/ a brief bad interlude..

Today was my 1st day at my new job...so lots of orientation and sitting around getting lectured to...about stuff I really do need to know...but will never be able to entirely retain. 

Joe and I decided to go out to dinner WITH the kiddos...I really didn't feel up to cooking, and heck, we "needed" to celebrate my new job.  Plus since we don't do halloween, we wanted to do some kind of alternative for the kids...even tho Bub is oblivious to holidays except Christmas, and Z is still learning the whole holiday thing.  Plus I found 2 free kids meal vouchers for Texas Roadhouse that I won YEARS ago in a March of Dimes activity..so hey- kids eat free...I don't cook...we're all winners!

Unfortunately just before we go, Bub had some issues...having to rush out right after getting home from school to pick me up disrupted Bub's schedule of Mondays enough to have some sensory and emotional challenges.  Bub was getting a little too grabby of Zber to Joe's level of tolerance (I was in the shower), so after a few failed attempts to get Bub to stop, Joe picked him up and carried him to his room to have a cool-down talk about respecting other's space.  Bub got upset and head-butted Joe...not really hard, but he hit Joe's glasses in such a way that the glasses gauged a chunk of flesh off Joe's upper left eyebrow!  Bub ended up hurting the side of his head in this and both Daddy and Son were making lots of "Angry Bird" kinds of noises.

Fortunately, we were able to calm Bub down and maybe this time got it thru his head that he's a big boy now and can't just go around bonking people in the head when he gets mad and impatient. *hope hope hope*

After everyone was patch up (Joe's so lucky I love doing wound care...) we went to Texas Roadhouse, our server was awesome.  we typically don't get good service when we go out with the kids, we typically get rushed out and not a whole lot of understanding about special needs and restricted diets.  She was so helpful, I think we have found our new "family" restaurant (even tho we can only really afford going out 1 time a month typically). 

Now the kiddo's have full bellies and are settling down for bed, and I have a little time to myself before I go to bed. Yayee  for mostly good days  :)

Phone conversations w/ my Hubby while I'm at work

Me- Hi hon, how are you?
Joe- I'm ok now.
Me- How are the kids?
Joe- we're not talking about that.
Me- Oh sh*t, what did Bub do?
Joe- not talking about it.
Me- you need to tell me what he did.
Joe- Well, he wouldn't listen to anything I would tell him, Zber managed to pull off her pants and diaper in her crib and everything was wet and he kept sneaking in to jump on the bed while I was trying to clean her up-
Me- what?  didn't you put zber in a zip-up jammy?
Joe- no, I just used the dora ones from last night.
Me- but you know she did the same thing last nite...
Joe- I just grabbed it cuz it was there.
Me- ok....so what next.
Joe- I made him take a time-out in his room, and when I came back his pants were off and there was a streak of poo across the whole room.
Me- so he had a defiant poo.
Joe- yep.
Me- I'm sorry babe.
Joe- me too.


Ten years ago, I would have never believed this was my life....now, this is my "normal"

be kind to parents w/ special needs kids.  :)

SEE!!!! THIS is why I fear becoming a hoarder!!!!!

So two weeks ago while Bub was doing his horseback riding therapy, I was talking w/ one of the other moms there.  We were bemoaning how quickly the boys were growing and how people stop giving you hand-me-downs around 5 y/o.  Bub is older and considerably bigger than her boy, so I offered to give her some of his size 6 pants that he recently out-grew...not realizing I gave a bunch of them away already to my friend Crystal,  but not to freak out...my home-organizational skills are so crappy, I was sure I'd find some more if I really looked around.  Sadly...I was right.

You see, this week has been really odd for us.  I have 1 shift left at my job before I change to PRN and start my new job on Monday, so It's kinda been like a "crap!  clean and organize the house NOW cuz it will prolly be MONTHS before I have this much time off again!!!!"  kind of week.  I've got the kitchen nearly completely scrubbed down.  Joe deep-cleaned the bathroom yesterday, and Bub's room today...I'm working on Bub's non-functional closet (mainly because we keep it locked so Bub can't poo on the floor in there....)  and my closet, so I find all these bags and boxes of clothes and start sorting.
found:
2 small bags of baby boy clothes 3mo-1 y/o for a friend
2 small bags of size 6 boys pants/shorts for my horse-therapy-mom friend
2 HUGE bags of baby girl clothes 3mo-1yr  (goodwill unless I get a ref to someone nearby that needs/wants it)
1 HUGE bag of boy clothes 4T-6T

Sadly...I really haven't been keeping up w/ the kids clothes...Bub is nearly a size eight and I'm just clearing out the last of his size 4T stuff.  Tho, he did go from a size 5 last March to a nearly 8 this month....so I should get a little credit??  oh well.  Z is over 18 months, but still is too small for most of her 2T stuff...so I had to find that box and make sure it's ready for when she needs it.  I have a ton of clothes for her until she hits 5T, so I have to start hitting the walmart clearance racks for those sizes.  lol!  I got her Christmas dress for this year last May for a dollar.  I am so bad. 

And to make today even more fun, I verified when my insurance will end...before Bub can get a refill on his Risperidone.  I spent some time looking up the cost w/o insurance.  It's nearly $300 for a 30 supply.  BUT that's for the meltaways.  I can get the normal tabs for around $20 for 30 days...so now we have to find out: Will bub take them?  I think he will as they are so SMALL....but I think I can get him to if I bribe him with candy afterwards....maybe...  At least I am crafty and even thought ahead and planned for this outcome.   

Due to this 2 month lapse in healthcare coverage (No WAY I can afford cobra), my MIL is trying to persuade me to get Bub on Social Security for disabilities so he can be on Medicaid/Medicare... I have really not wanted to do that yet.  It's like slamming the book down on hope...like at the end of a Good Friday Service.  I rationally know I will need to do that for Bub, but I made the decision not to do that until he's 10 just so my heart would have a glimmer of hope the autism diagnosis may be altered in some way.  Or at least his expected outcome would be more functional.  And I'm not saying he isn't functional...because he IS very functional, on an ADL level...but they don't test for those things....and those things don't make a difference on any paperwork or rating scale or anything "officially" clinical, just to me and those that deal with and work with Bub on a daily basis.  and that sucks for my little heart.  

So in the next few months or so, I will be detailing my heart-crushing adventures of applying for SS-disability for my son.  Let me know if you have any pointers if you have gone thru it...and I know...don't be discouraged if you are denied the first time...just keep applying and maybe get a lawyer....  sad.

*I was hoping to include pictures...but we still are having uploading issues with the "cheap" digital camera we got Bub for his birthday*  *sorry*

Sundays can really suck...

The worst day in our house is typically Sat or Sunday.  Esp if Joe or I or both of us are sickly on either of those two days.  See...This is how it is btwn all of us....  I worked hard during the week and want to chill out and recoup from my job...Joe worked hard during the week and wants to chill out from the kids.  Bub had a hard week at school being in a disciplined scheduled and wants to not listen to anyone at any time to chill out from the week, Zber is super excited to have everybody home at the same time so She won't sleep during nap-time and insists on waking up at 3am to ensure all the playtime with us all she can cram in to a brief 48 hr period.

I had a mandatory vaccine in my rt deltoid on Friday for my new job.  Seriously...my arm is STILL killing me and I had what felt like a 3-day hangover all Friday and Saturday.  Joe had digestive issues all last nite and today...so he wanted (and did) to hide out in bed out of misery.  Bub wanted to poo on the floor a lot today...at least 3 times just today.  He really hates it when I scrub his fingernails...but like I tell him..."If you are going to touch it, I'm going to scrub it...I see you eat...you forget to use your fork sometimes!!!!"   Zber found a piece either Joe or I missed.  I threw up in my mouth a little...which is odd since I deal with a lot of poo at work too.  Maybe it was because she's my baby...I don't know...either way, puke in the mouth is just not a happy kind of thing.

But back to the vaccine thing...if one little vaccine can eff me up, I who am....(let's be kind...) ...rubinesque...imagine how it can eff up a little baby...and they want to do up to 9 different ones at once?  not to my babies...and not in Texas.  YEA for my philosophical right to refuse!!!  I'm an adult, and it made me have one of the worst head-aches of my life...and you're telling me it won't damage a baby's neurologic tissues?  I'll give the shots, but I sure won't let my babies have them on any one else's time frame but MINE!


grrrr......