I'm sure the girl named "Ryan" wished she could bomb me over the phone....

Currently on hold with an online pharmacy that I found that has affordable meds for Bub while we wait for our new insurance to begin in January.  I placed the order on 11/4/11.  On 11/10/11 I was told I should have it yesterday.  I don't.  I know to expect mixups and delays the 1st time using a new service...but come on.  Today is the last day I have his current meds.  I really don't want him to miss a dose.

The website says its being processed...but what does that mean?  that it will be shipped in another week?  It is madness.  All because Bub's med is not a highly used drug, and it's indications for use are limited and must be monitored w/ blood tests and such.  puff.

(Later)

What is really frustrating me right now is that this chick (she said her name was "Ryan", and I responded w/ "really?"  and she got pissed at me...lol) said the payment that I posted on 11/4 for this order didn't go thru until yesterday (11/14), however my bank statement says it cleared on 11/8???  something is not adding up here.  I called back to get an explanation from the manager/supervisor since "Ryan" was prolly lying to me w/ my mocking surprise of her "name", or to be charitable she was reading me a line of crappola that her upity-up told her to spew out at disgruntled part-time housewives like me (having been in middle management at telemarketing companies, I know this to be true since I used to be the manager coaching my employees to read crappola to customers when I knew it was a pile of crappola...which is why I am no longer in telemarketing...but I digress...) so anyhow, I call back, spend 20+ min on permahold, get thru, ask to talk to a supervisor, am told  I will be transfered to said supervisor and then am put on a nameless voicemail...prolly where they put the disgruntled part-time housewives that are barely refraining from swearing and usage of other creative conversational devices.  or maybe this guy had creative listening and thought I said "put me to a nameless voicemail box please"  maybe...I am told I have a MN accent....dontcha know.... puff.

(much later)

I tried to call back again...was again on permahold.  got tired of it and had to give up because I really needed to make dinner for my poor family who had been putting up w/ my dramatic sighs over this all day, plus had to get ready to take Bub to his horseback riding therapy (the only one we can afford right now), and be ready to drive immediately to my PRN job once I dropped him off at home.  so it was busy.  Now that I am home from my 1/2 shift, I logged on to the pharmacy site to see if there has been any change to the status.  SURPRISE.  nothing changed.  sent an offline "instant message" requesting enlightenment and a conversation w/ a supervisor to discuss "Ryan"s snippy attitude with me earlier, because as the day continued, I became more convinced it wasn't me, and I had been VERY patient with her and did not swear once at her...although I did do the record-player technique until I am sure she wished she could bomb me over the phone.

And so, sometime on Wednesday I will try to find a conclusion to this abysmal state of affairs.  meanwhile, I filled yet another week of the risperidone ODT for Bub for the "low low" price of  $70.00.  Yayee for me. Yayee for expensive not popularly used drugs that jack up the price.  puff.

Nubs to all anyway

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*

Meltdown: where the hell did that come from Bub?

Bub had -THE- biggest meltdown I have seen in a VERY long time this afternoon. 

I stayed up very late this morning after work, completing a document I had been working on for over a week.  I passed out on the couch watching Joe play "Angry Birds"....I don't get the allure..

When Bub got home from school around 3pm, I was still passed out on the couch...he attacked me w/ a big ol' smooch on the kisser, so he was in a very good mood.  I still didn't get awake until about 430 tho.  I went outside to grab the mail and heard such screaming coming from inside.

*Sometimes I think our neighbors worry about the noises coming from our house....*

I walk in to find Joe pinning Bub to the couch.  Bub's face is beet red and he's screaming his lungs out.  Joe says he had his back turned for a min, and found Bub attempting to hit Zber.  Obviously Bub and Joe are only intensifying eachother's anger, so I grab bub and convince him to hang out in his room with me.  I locked us both in.  Bub didn't like being locked in his room despite my being in there with him.  He tried to hit me, tried to hit and kick the walls and doors, tried to throw himself on the ground, tried to head-butt me.  I just kept stopping him and tried to distract him with his favorite toys, and getting him to copy momma doing deep breathing while signing "calm down" 

when he stopped screaming so loud and gave up on hurting me or himself, we went to the bathroom to get some APAP meltaways and brushed teeth and did the ACT rinse (tactile stimuli really helps, but it has to be "his" idea these days to make it successful).  so now he's smiling and we make funny faces at eachother in the mirror.

When we leave the bathroom, I announce to Bub that we are going to the kitchen to make his all time favorite dinner of chicken nuggets so he wouldn't remember his angriness and attempt to recapture the mood once he and Z came face to face again.  Momma's rouse was successful, I had bub help me make the nuggets.  He's really good at putting them in the microwave and setting the microwave, but he's always impatient and opens it up before they are done ad tries to eat the "raw" nuggets.

Thankfully, there were no more angry episodes before bedtime, and Bub helped me put new sheets on his bed after he tore his off and flung them on the floor during his meltdown.  He seemed to welcome the idea of bed, and he likes how Momma will play into his ritualistic-ness by setting up his blanket layers exactly right including putting the ani-ooh and camera in his bedding.

I think Zber must have tripped on Bub or did something that physically "hurt" him, because he kept trying to bang a specific body part on me and the walls...he usually only does that when he is actually hurting, not when he is just mad.  I have no idea why it escalated to such a high intensity today tho.  But it is Friday, and I've been at work Tues -Thursday nite. I wonder if this is happening at school.  I'm not getting any notes about it if it is tho.

Joe is worried his resperidone needs to be upped.  I have to remind him that Bub's med doesn't stop the anger and aggressiveness...it just tends to tone it down a bit so behavioral modifications have a chance to sink in.  my poor bub.  Autism sure can throw a loop on you very unexpectedly.

*FYI- Zber was not hurt by Bub...we keep a VERY close eye on things like this and protect both our children to the highest extent*

finally some rain!

it rain today for the first time in what seems like forever.  not anything NEAR enough what we need here in drought-stricken ET, but enough for Lil Miss Z to get her mud puddle on...

 After the muddy fun, we waited for Bub to come home from his 1st day of school.  It was a bigish day for Bub, he has the same teacher he had his 2nd year of school.  Plus he is now in a "life skills" class with kiddos up to 12 y/o.  Bub is no longer the biggest fish in the pond.  lol.  But with the way he's been growing, and how hungry the risperidone is making him...He may be catching up soon.  erk.

Home again home again, jiggity jig.

After he got home, we went out for dinner, I let Bub pick what he wanted to eat.  Lots of jello...and fries, and fish.  a few shrimp. and a cup of ketchup.  what a lucky little boy.

what I get for trying to be a nice momma

And today:
Bub started today in a good mood.  he let me make pancakes w/o being in my way.  This is a big accomplishment for Bub...as pancakes are a favorite of his.  He refused to eat his peaches tho.  Ha ha on him, Momma snuck bananas in the pancakes.  hee.

Then while Zbear was napping, I decided to make corndogs from scratch for lunch.  This is a big deal for me since I can not find any edible version of corndogs that exclude forbidden ingredients from the stores (milk products mainly)  The few that I did find, I couldn't gag down, Joe barely ate (and he's a corndog lover) and Bub walked away from, and Bub never walks away from any kind of hotdog.
It started well.  Bub was all interested in what I was doing...until I rolled the hotdogs in flour.  Oh, the wailing.  Bub was convinced I was destroying his beloved hotdogs.  normally I'm not phased by this, but I had a vat of hot grease going on the range near the fussing of this little man. 
Momma started to loose her cool, Bub protested by climbing up the cabinets to get corn chips in protest, and promptly was sent to his room to take a time out in his bed.  more wailing and moaning.
Then when I finished making the corndogs and french fries, he peeled the coating off.  !!!!  in his favor I will say he came back 10 min later and did eat the coatings, but by then, after I finished monitoring Zbear's eating of the highly minced corndogs, I felt SICK, and I didn't eat anything.  Joe said it was good, but I felt like hurling.  Took a bath, during which time Bub snuck off to his room and protested the whole affair by pooping on the floor.

yayee us.

After cleanup (Joe did the floor, I did the Bub) I meant to only rest for a half hour, but Joe woke me up just before 7pm.  I slept thru our free babysitting offer and we missed our date night.  I feel really bad for that, plus I still feel sick.

The pharmacy called and said they aren't going to be able to refill Bub's risperidone until tomorrow, and unadvertantly sometime during the adventures in cooking I knocked over the box with his meds and we had a 20 min freakout thinking Bub climbed up the stove and ate himself an overdose of a hefty anti-psychotic.  Thankfully, as I said it was just knocked over, and now I am trying to think of a different safe location to keep his meds.  There is really nowhere in the house I can guarantee Bub won't get into, he is a marvel at engineering feats.  He figured out how to unscrew his door off the hinges when he found Joe's secret stash of screwdrivers.

well, at least he is happily asleep right now, as is Zbear.  I'm hitting up the pepto and hoping to feel better in the morning, so I can be ready for what Bub dishes up for me next.

attempting to pose while wearing his sister's snuggly hat

Nubs

more of the world from Bub, and a monkey salad bowl

Bub has been doing really well on Risperidone.  Tomorrow will be a week on it.  next Thursday I need to call his Doctor and report on how he's doing.  Peeing in the potty has improved...pooping...not so much yet.  He has been VERBALIZING!!!  Grandma caught him on tape saying "Big!" as he built a lego tower that was taller than he was.  -I- heard him say "big" while he was building a plastic easter-egg tower yesterday...and he almost never verbalizes around me...lil stinker...  lol

I met with his school nurse on Tuesday to update her on his new med and side effects to look for (most rare yet possible- neuroleptic malignant syndrome)  she never heard of either the drug or the side effects.  REALLY?  not remember NMS?  I remember VERY well Ms Wyszynski going over that in Med Surg III.  telling us how to "snatch that patient from the grip of death"  as NMS is pretty fatal if you don't identify and address it very quickly.  Bub's Dr and I talked for a great while about how frequent that side effect had manifested in her years of practice (very VERY little).  I told the school nurse that if he shows symptoms of NMS call 911.  She said they don't like doing that w/o calling the parents first.   !!!!???!!???!  call me, I'll call 911 and meet him at the hospital!  Seriously...if you had a kid go into a diabetic coma (likely in a school setting at some point), you would call the parents before you dialed 911?  I have grave concerns about this nurse and her desire to protect her license....

ANYhow,
I was going thru the pictures on my camera and noticed some pictures I didn't take, and aren't in the style or nature of pictures Joe would take..(Joe takes pictures when I hand him the camera and say, "Just take a picture of me and the kids already!!!!!")  And Bub has been understanding the camera, and loves to turn it on while making his "elaborations" to watch the progress on screen, like he's on TV or something.  :)  it's cute.  But I think he actually took some pictures while he was viewing his progress.  I need to buy him a cheap $20 digital camera soon, so he won't keep stealing my pricey one!  lol

I took this picture of his geo-work  by the driveway

Self-portrait taken by Bub...how about them nostrils?  hee!

Rolly-balls!  Bub LOVES his rolly-balls!  Unfortunately, Zbear does too...

More rolly-balls!

And a while back...I posted about Zbear pulling out the Monkey wood salad bowl my parents got us.  I found the shot.  Click HERE for that post.

Monkey girl in monkey bowl!

Nubs to you all!  Good night!

meds for Bub continues

Like I said, we have a script for Risperidone for Bub, but we can't fill it yet (well, we could, but I can't I/D it) until after he gets his baseline labs drawn.  I'm a little frustrated with this currently.  After his appt on the 21st, I got super sicky and was not functional until that Friday after 5pm...so of course, Joe didn't call Bub's pediatrician (since that is the mommy/nurse job) *roll eyes*. So on Monday I called to ask whether we wanted to draw blood for Bub in the office while an unspecified number of us pinned him to the floor...or if they wanted to send us to a lab that has access to all sorts of wonderful restraining devices.  The RN I talked to (who I went to school with) sd she'd have to ask the MD.  ok, I figured that.

So it's Friday, again...and no one has called to let me know what the deal is.  So I call, start the story over again, am told I have to bring the script in before anything can be done.  ????
I already got the specialist's report in the mail...that means my reg Pediatrician did too.  In MY copy of the report it was stated that Bub needed a liver profile and FBS baseline b4 starting Risperdol...what more do you need to call me back to get things going?!?  I am seriously wanting to join in w/ Bub on the banging the head on the wall thing....maybe we can bang on each other's heads for a while....  SO I dropped off the script 1/2 hour before they close for the holiday weekend.  which means I prolly won't get Bub's labs drawn until the week of the 11th.  I'm a little flustrated about all this.  well a lot frustrated.  but I guess I will deal, what else can be done?

Me and Zbear played outside for a good while today before it got hot and before her nap (love that she still naps).  She insisted on eating dirt...twice.  apparently momma is not to be believed when momma sez dirt is nasty and ooky for the mouth.  maybe zber is convinced it's free chocolate waiting for whoever grabs it first?  well, that's what she acted like.

Nubs

sick on a day off :(

Don't you just hate that?  I have the worst stuffy nose that zyrtec & benedryl can't touch, plus I'm all achey and tired, and a temp over 100F  I just don't have energy for this.  Joe is being a trooper tho, trying to let me rest and not get frustrated w/ me.  I love him for that.  Zber is not so patient.

We had some "excitement" yesterday.  I came in from outside in the afternoon and forgot to lock the door.  about 20 min later Bub tries the door, figures out it's open and made a great escape.  I was on the couch behind the packnplay barrier we have set up to keep Zber out of the kitchen when Bub is doing elaborations in there, I'm hurdling this crib (barefoot), Joe who is behind the PC barrier is hurdling the trunk, Zber is hooting all excited.  I get out the door, and Bub is halfway down the driveway heading for the street.  That is the scary bit.  Our road has a 20 mph limit, but because we live in kinda nowhere off a couple of main country roads, NO ONE obeys that speed limit.  And Bub is heading for the road.  I'm barefoot getting my soles tore up on the rocks halfway to Bub as he is almost at the street, I'm screaming "Stop!  Sign Stop Bub!!!"  (cuz he is more likely to do a thing if he signs it), meanwhile, Joe in his cowboyboots passes me and grabs Bub just as Bub reaches the street, turns around and starts laughing hysterically.  Glad he sees something funny in this, cuz I just want to cry.

Needless to say, Bub was disciplined which lead to an hour of Bub protesting w/ loud screams and bangings of the wall with limbs and toys.  after he calmed down, Joe took him to Lowe's to look around.  Going to Lowe's is one of Bub's favorite trips.

As for his appt w/ his pediatric behavoralist, Bub now has a script for risperidol.  we spent a good 20min talking about side-effects and necessary blood work for this med.  Sometime today, I need to call his regular pediatrician and set up an appt to get a fasting blood test for Bub.  I am NOT looking forward to that at all.  Last time we had to draw blood on Bub, he was 3 and he was so freaked out and non-compliant we had to put him in a papoose restraint, and STILL have 2 more people help to keep him totally still.  I have a feeling I will be referred to the local hospital's lab to ensure the draw goes smoothly.  He will have to have blood tests every 6months once he starts this.  yea me.  But, if it helps him, I will do it.


Zber is now napping after breakfast and a "Ba-ba" (bottle), I will prolly join her soon, and try to fight off this virus.  I need to beat it by Saturday.  I am scheduled another 4day rotation.  I REALLY hope I get a different section this time around.

Nubs.

Meds for Bub

Fabulous appt yesterday.  Not so fabulous doing a forth 12h shift on 3h of sleep.  My head is still hurting, so I'm going to hold off blogging about the appt other than the fact that I am holding in my hands a script for Bub to start meds.

V. happy, just waiting for the sleep-deprived headache & allergy-like symptoms to abate.

Nubs.

so excited!

we got a call around 445 lyesterday asking if we wanted to take a canceled appt spot for Bub's Behavioralist Pediatrician which we have an appt for in Oct.  I don't think I said "yes" fast enough!!!  It's at 9:30 so I won't get very much sleep today, but it is my last night. so I think I'll be ok.  I'm very much happy right now even tho our power just went off from the rain.

Nubs