An Old FB note...but still fitting...from spring training 09

Jen wanted to know why I was on FB at 6 am this morning. Well, I had been up for hours. Now after all day I am so tired. I know that it is only 8:30 but I could sleep for the next 6 days, but can I go to bed? NOOOOO...I have to be up, all the time, at the beck and call of everyone. Waiting for my husband to figure out what he did to his isight camera, waiting for Tyson to stop talking and go to sleep, waiting for the next thing on Alexs' schedule. At some point my face is going to crack open, or my hair will fallout, or maybe (god forbid) I will become immune to the powers of a hershey bar chased by a Pepsi. You would think that the doctors would be concerned that I look like walking death and that I have to dispense a potentially lethal combo of drugs to such a little person, but they're not. They want more. More therapy, more medication, more research. Tyson's school wants more, be a parent helper, mandatory volunteer hours. Major League Baseball wants me to bleed for them. The fund is supposed to be private and anonymous. Not for me. I'm the damn poster child. be at the D'back's clubhouse at 7am on a sunday with 2 kids and full make-up...sure, why not? I'm going to do it again on Monday with the Rockies and hope to God that more of them remember me as Charlie's wife and not as the queen of the Orange Shorts (like some of the D'backs). It will be fine. But my husband will call and complain that he is so tired, his life is hard, that leaning in center field on a Fungo is sooooo hard. He leaves in a week from Port Charlotte to Puerto Rico, on a private plane, to a 5 star hotel, to an island that treats him like he's the pope. My job will be to say "poor you, it is hard, I understand" because at the end of the day it'll be funny...i'll go to bed...my eyes will burn when I close them because they are so tired...I will be unable to sleep..Alex will cough and choke, and dump his own saliva into his lungs. Tyson will hear it and freak out and come to sleep with me, and the cat,the wonderful cannibalistic cat will decide that since there was movement someone better give her a treat or she will bite the crap out of you. Alex will calm down, Tyson will snore, I will lay down...until the alarm goes off at midnight and 2am and 4am for medication and the feeding pump or the next oximeter tests that the docs want. I'll get up and get Tyson ready for school and get thru the day, every day, and stare at the moms at school that are making lunch plans and going shopping...they will smile and tell Alex they are praying for him and then ask me why I didn't make it to Mass. They will offer to help, until I ask them to, then they will disappear, busy, out of town, or just avoid the subject. Tomorrow is ash wednesday (Tyson told me), so for Lent I am parking my invisible jet and taking off the stupid gold bracelets (but I'm keeping the lasso for my husband) and I am giving up Not Sleeping. I'm going to try and give up panic, and worry, and maybe a little shortness of temper (but not to much....i'm still me). Or maybe I'll give up the hershey bar chased by the pepsi (and switch to a kit Kat followed by a coke.)

BIG PIMPIN......

They gave us a Hummer.  Well, I guess that "give" is the wrong word...lent, made available, begged us one....those could be better terms.  As part of Charlie' s deal he gets a car for the season from whatever sponsor they have.  It was Saturn (which doesn't really exist anymore) now Hummer.  It's huge!  I drive a Volvo, a little one at that...teeny, tiny,good on gas, easy to park...so the Hummer...eh.....not so much.  So I had to dive around Durham in the BIG PIMPIN HUMMER.  I got lost alot.  Not only b/c I haven't driven on a real freeway in for-ev-er, but because there ae so many damn trees.  Really people, how can you see around all those damn trees.  It's North Carolina not Yosemite....anyhoo...after trying to figure out the navigation sysyem I quickly gave up and used the google maps on my phone.  Now I am not an idiot but I could not figure out how to make the "voice" work...it just kept playing the radio anf showing me where i had been, NOT where I was going.  Lame, lame, lame...but it had a sunroof and I figured I could just run over the trees if i needed too so it worked out.  But I'm jumping around so I'll start at the...

AIRPORT
Now I am a good flyer.  I plan.  I pack.  I have all the appropriate prescriptions and doctors notes to get Alex on the plane as well as all of his crap.  I have movies and DS games for Tyson.  But what I don't have is a sign that says "Yes, I look fine but I can't walk...please do not descriminate against me b/c I am not 90...I need help to the airplane".  I don't have a sign like that so I had to do the whole thing without any major muscle.  Tyson was awesome...carried his backpack, lunchbox, and my purse.  I had the carseat, which we had to use on the plane, diaper bag, tickets, and the amazing non walking, heavy as hell kid!  Once we got thru it it was cool.  Charlie picked us up at the airport along with his younger brother, wife, and my 2 nieces.  Some one must have warned my sister-in-law..she was actually pretty subdued (LOL).  Luckily for Charlie, they were there so he had help with my bags...I pack well...not light.  My niece on the other hand is the queen of pictures.  She took about a million in the airport, flashing the "deuces" with Tyson...can't wait till he explains that a peace sign isn't a peace sign anymore...it's deuces....to the nuns....grrrreat!

GAME
The next day was the game btwn the Bulls and the Rays.  Tyson went to the field in the morning with Charlie to play, and get autographs from the big-league guys...which he never did!  He sat in Charlie's office and played video games...nice.  That's why kids in the US are fat...their dads are professional athletes with access to everything and they STILL sit on their asses and play nintendo.  What a dork.  I love him but he'll be mad at himself later in life so whatever.  AND let me clarify that Tyson is not fat.  He is actually so damn thin that I am trying to convince him that candy and Hagen Das are food groups. So before the game, Alex got to go out on the field and walk around with Charlie and people were yelling "go Alex" and clapping...it was awesome.  Then he went with Charlie to get his ring. Does anyone else think it's wrong that my husband is wearing more diamonds than I am?  (and I'm not counting my earrings but even if I am he still has more)  Holy Moly!  Twinkle twinkle big ass ring!  He's actually wearing this one which is amazing.  He never wears the AL ring or the Biscuits ring.  I know he has others from when he was a player but he has given them away to his family but they'll come back to our house at some point.  Anyway...game...hot...long...walked up alot of stairs...and had to be nice to the "prayer people".  Now I'm not going to get into the whole God thing again...we all know my stance but the prayer list does seem a little weird to me, but again...just me.  So I spent a good amount of time listening to old people tell me that they had put him on this or that list.  Thank you very much for your prayers and thinking of us but now I'm going to have to move on so the next 80 bjillion people can tell me how he was on a list in Timbuktu.  BUT I did finally get to meet some Rays big-wigs that I have only spoken to on the phone.  They didn't look like I thought they would...for some reason Chaim was blonde in my head but he's not...again...not the point.   After we went to dinner at Chili's and I was STARVING!!!  Maybe I wouldn't have been sooooo hungry if we hadn't had to go back to the apartment and Skype with P.R.  I personally hate Skype...it looks grainy and I don't think it's a camera issue.  Everyone should just have a Mac so we can Ichat with whomever.  But we had to Skype with the PR family (took forever...really how long does an I love you, miss you and hope to see you in person soon take).  So FINALLY we went to eat....yummy!

AFTER
Basically after that I hung out.  Tyson went to the field every day with Charlie.  I went to Moe's with Nicole (and alot of times without Nicole) and went to lunch at Mellow Mushroom with the wives.  Let me say in defense of the "wives" we are not stupid, vapid, or gold diggers.  We are highly organized people who have to be wife, mother, accountant, moving man, tax doer, and ego soother all at the drop of the hat.  Ego soother would probably #1 on the list....baseball husbands can act a little like babies, especially if they are losing or not hitting.  So we went to lunch....6 of us...2 babies...1 set of twins...and Alex.  Now Alex, much to my surprise decided that on this occasion he would......wait for it.....EAT AN ENTIRE PIECE OF PIZZA!!!!  I know...I know...how did this come to pass?  Who knows!  But he ate it, took over an hour but he did AND he didn't choke or gag.  Right there made him braver than Tyson when it comes to new food.  I was very excited the entire time even though I was trying to be cool about the whole thing.

After that, we flew home the next day, almost missed our connection and thankfully was picked up by the amazing driver who carried my bags without giving me any lip.  Now I have to do it again this summer......

Baby Jesus of the closet.....copied from the original rant

Baby Jesus of the closet is a statue or at least he was. Since Alex has been sick, people have been sending us "relics" and other holy, but gross things. Personally, I find it a little freaky that there are little cards with itsy, bitsy pieces of bone or clothes from a saint who lived 500 years ago. It also freaks me out that people actually buy them. Now if you are my friend you know that YES, I believe in God, but I am not big on RELIGION. I find them to be 2 seperate issues. ANYWAY, a few months ago I received a box at the house for Alex. Inside was a statue of the Peurto Rican baby Jesus. Now if you have never seen that particular baby Jesus, i can only describe it as pastel but neon at the same time. He looks like a little girl, blonde, floating in a pink (pastel but neon) dress. Also let me mention that the statue was 2 1/2 feet tall. That's right people 30 gloriouse inches of Pink Plaster Jesus. So this particular statue did nothing to enhance the decore of my home and it was huge...so...I put him in the closet. I actually put him in Alex's closet because that was I could tell anyone who asked that yes it was in his room. Well, when I was hanging up clothes and putting away the tons of medical supplies in his closet Baby jesus of the closet had an accident. He fell off the top shelf where I , honestly, had stuffed him and his head....broke...off. It was a pretty clean break, I could have glued him back together, but, alas, I did not. i took advantage of this accident and chucked baby Jesus of the Closet out in the trash so he became Baby Jesus of the land fill. Then my mother in law came to visit. She was not here for 10 minutes when she asked Charlie (not me b/c I don't speak spanish, but if I had known that half my family would speak spanish I would have taken the lessons instead of 800 years of french...moving on)) if we had received a statue of Jesus. She was sure that we had not received it because she knew that such a lovely statue would be proudly displayed in our Ethan Allen/Pottery Barn explosion of a home. Of course Charlie asked me and I said that Jesus had broken, that his head had come off. Now out of the corner of my eye I see Tyson, who feels like he is smarter than us all about to add his 2 cents. So I, not wanting to admit that it was a clean break, say the Baby Jesus "SHATTERED" into 1 bjillion pieces! So I thought that was the end of him. But NOOOOOOO!! Baby Jesus of the closet is haunting me. We went to the Neuro Surg. about Alex's neck which is all messed up from pulling against the ventilator for 6 months, but earlier that day I had lunch with Regina and told her about Baby J in the C. We were laughing about his unfortunate ending and when I went to the surgeon what did he say? "Stretch his neck and do it 5-6 times a day" now if you read the earlier note then you know that Alex turns blue and screams bloody murder to the point that I have to get the oxygen out. But that's what I get for breaking off the neck of the baby jesus and lying about it. But now kharma has gotten me again. 1 week ago we got another box. inside was another statue....the Virgin Mary. BUT, this Mary has a special quality. When you walk around the room her eyes follow you and they are painted with the glowy stuff so when you turn out the lights.......they glow. Who the hell makes a glow-y eyed Virgin Mary??? Anyway, Mary is now the Virgin in the closet (mine not Alex's or Tyson's) because those eyes would scare the living shit out of Tyson in the dark. So now I know that every time Alex has a step back with his neck it's my punishment for breaking the head off of Baby jesus of the Closet. BUT, that does not mean that I want anyone to send me another one or any other relic...your thoughts are enough. OR you can send them to Charlie and I can laugh when he has to stuff them all in his suitcase at the end of the season!

All Hail the Mighty French Fry.....

If I haven't mentioned it before, I have a $700 blender...yup I do...I'm super cool.  Actually it's a Vita Mix and it's supposed to make the best frozen beverages in the world but who would know about that in my house.  Since I have this golden blender  ( which I actually had a prescription for) I took Alex off the "box o' formula" that he has been basically living on for 2+ years.  Kind of scary right....hell yeah!  So now I blend (liquify) all sorts of fun stuff and jam it into his tummy via tummy button/connector/syringe.  Easy right?  Hell no...not easy because all my people (Cardiologist/Pulmonologist/GI/Feeding therapists and neighbors are all up in arms over calories.  "He has to have a certain amount of calories in a day" or "He can't lose weight"  those are my favorites.  Really he can't lose weight?  No dumb ass...I CAN'T lose weight....I try but I CAN'T.  Alex can lose weight because you people were so freaked out over the last surgery that you pumped him up with everything BUT steroids and he was a fatty.  But regardless they have me all freaked out.  I have measured and weighed everything.  I have now decided to feed him like a 2 year old just better.  So he has Cheerios or Raisin Bran, milk and 1/2 yogurt for breakfast.  It's about 200 calories...but he doesn't get all 200 calories b/c normal people don't have their breakfast stuck to the side of the blender.  Damn!  So now I have to figure out how to make 2000 calories worth of liquid food, that fits inside of 3 syringes over 5 times a day so thats about 450 per meal...math bad....AND then it hit me....MCDONALDS!!  I hate McD's.  It's not my thing.  Something that I do not enjoy...I also hate veggies so it's not a health decision but more of a foul greasy smell kind of a thing.  BUT that Sperlock guy got me thinking.  If Alex was "normal" he'd be chowing down on a happy meal on occasion...so what if the happy meal went in the blender?  That would have to be a bjillion calories right there.  The other thing I realized was that I was feeding him too well.  It was like the kid was on the South Beach diet...healthy fats, veggies, fruit...milk (skim)...no carbs.  How do you gain weight without carbs.  Personally I was avoiding the carbs in the blender b/c they kind of turn into paste but it's a learning thing.  So that's the plan and I guess the docs will just have to bite me if they don't like it.  It's not like they love me now.  But, back to the original thought, Alex has decided that french fries are good...not to eat...but to hold and wear as a hat.  But it's progress...I guess.  He likes the ones at Chilis b/c he licks his fingers afterwards.  He is so my kid....all about the salt.  We now have 2 "lickable" foods...Cheetos and French Fries.  So WOO HOO on the fries!   If anyone has any other salty, but not easily breakable items that coulb go in his mouth I'm open for suggestions.  he was playing with some Ritz crackers and accidently took a bite ( I was soooooo excited) and freaked out (me no longer excited) because he's never had anything in his mouth before and he had no idea what to do with it...chewing?  What's this chewing you speak of???  So I stuck my finger in there and yanked it out and yes he bit me and it hurt....like I said...chewing???  Teeth...what the hell are these things for???  Hopefully he'll get braver..I'm not all that hopeful.  Tyson is just as bad...picky, picky, picky...

God Bless Chester Cheetah!!!!

As we all know, Alex and food are not friends.  He thinks that anything coming near his mouth is evil and destined to piss him off.  BUT..we have been playing with food.  Cherios, ritz, pretzles, and now he can touch it and not 1. gag  2.  cry  and 3. throw it back in my face.  Personally I am a big fan of the not throwing it at me. His latest trick has been with the Cheerios.  He scoops them up from the bowl 1 at a time and ACTS like he is going to eat it off his spoon, but then he flicks it over his shoulder and puts the empty spoon in his mouth.   Soooo for the past few days he has been brave....putting the Ritz near his lips..putting his front teeth on the Nilla Wafer...but today....woo frickity hoo...I bought some Cheetos!  I thought that if he played with them that he would get orange fingers and maybe he would put them in/near his lips and he would taste something besides air.  But that is NOT what happened...what happened was that I sat him at the table with me. I put some Cheetos on a plate for me and some in his "cow" bowl...very cool...moos when you touch the spoon to the inside of the bowl...and what did he do????  HE PICKED IT UP AND PUT IT IN HIS MOUTH!!!  Now he wasn't going to bite it because he has no clue what to do with it once it gets into his mouth but he was sucking on the Cheeto!  This went on for about 45 minutes until we had a bowl of soggy, naked Cheetos.  Salty and cheesy...he is soooooo my kid.  So now the question is...How do you teach a kid to swallow?

My name is Samantha and my son is an addict....

For a kid like Alex, you would think that all of my constant bitching and stress would be directly related to the fact that his heart is a piece of shit...and I mean that in the most loving way I can think of of...but his heart id not my curent issue. It's his damn tummy. That button is going to drive me c-r-a-z-y!!!!! We went to see Dr. GI...remember the crazy lady I almost smacked...well, while I was there he gave me a prescription for Clonazapam, or as it's known around here in the "hood", or my house, CRACK. Great, another controlled substance for the almost 2 year old. Really people, why, why, why do we want to have him so strung out???

We have this stuff b/c of the oh so wonderful gagging and retching, sort of like the dry heaves after a looonnnggg night of tequila. Every time he "eats" or is "hooked up" to his pump he starts to gag, cough, heave and whatever else he can do about halfway thru his meal. Now, if I had called the feeding therapist she would have said it's a volume thing, the sensation of his tummy filling blah blah blah......as you can tell I've heard this alot. So I tried to slow the pump down to decrease the sensation...didn't work...then I tried to speed the pump up...hmmm....wait, I think I'm seeing something. He coughs based on time. Now when he coughs and gags he does usually throw up BUT it is usually alot of mucus and watery stuff from his lungs b/c he is coughing so hard. If he isn't throwing up formula which is in his tummy, and he better NOT be throwing up formula since he had a surgery to make sure what goes down does not come up then there is no reflux, the prevacid stopped working, must be behavioral or a really bad habit. GRRRREAT.

That means Alex is on crack. It's sort of like baby Vicodin, which could be funny except that I spend 90% of my day trying to get him to be mobile, crawl, stand, walk or something. Vicodin is not going to be helpful in that area. Then we have the oh so lovely side effects....yes I do read the insert...seizures, brain damage, suicidal thoughts.....do not stop taking....must be weaned...son of a bitch! I went thru this already with the Methadone....I had a 6 month old who was all tweaked up on Meth and I had to wean him soooo slow. It took months and now I'm looking at that again? Not to mention that his Physical Therapist is moving out of state in 3 weeks and then whom I going to get. There aren't alot of pediatric therapists in town, damn Tucson. So we are using this "Anxiety Medication" to hopefully modify his behavior or break his habit. His going to have a worse habit...crack!

Thank you Edward Cullen....

So I guess my Volvo is finally cool, all because of Twilight, or at least that's what I heard at school today from an 8th grade girl. "That's what I want when I'm 16, a Volvo (drool)"...hmmmm....ok...swedish safety is cool. Nope Edward is cool and I'm just lucky enough to take advantage of it when I can. Tyson knows this little girl, he knows all the girls from Kindergarten up to 8th grade, that's my boy. But after Tyson went to school I took Alex to the doctor. The Gastro-intestinal guy. Woo Hoo. If talking about reflux makes your day then this is sooo the place for you. Normally a very boring visit except for the rather large lady, large in the sense that she took up almost 3 chairs and her large son, who took up 2. Now I take Alex to feeding therapy and so on so I see the range of kids....super skinny Minnie's and super big ones with gene disorders that would put me over the edge so I didn't think anything of them in the waiting room. BUT it is a waiting room, a small outdated waiting room that almost turned into a boxing ring b/c I was going to kick that fat bitches ass up and down Tucson Blvd. I don't really like to fight. I like to yell, i'm really good at it but the actual fighting part sort of scares me since it has been many years since it was required of me...Outback Bar...downtown...Myra...Hooter girls....lemon drops....ouch...anyhoo, this is how it goes:

Her: Hi baby, hi

Me: Alex can you say hi, can you wave? (now we all know that he can't but this lady is a stranger and i'm being polite)

Her: How old is he?

Me: Almost 2.

Her:What's wrong with him?

Me: Oh just feeding stuff, tube you know?

Her: He won't eat? he can't?

Me: No, frequent hospital kid, big aversion, we're working on it.

Her: Hospital?

Me: Oh, he's a heart kid....3 chambers...a couple surgeries...he's had so many tubes he doesn't like anything in his mouth.

Her: You can't live like that! when's he going to die?

Me: Excuse me?

Her: He's gonna die right? soon?

Me: uh, no, not today!

Her: so when, you shouldn't make him suffer, having surgery...blah blah blah....

Me: (Ignoring her but seeing red, literally and getting a little tunnel vision)

Her: BLAH, BLAH, selfish, putting him thru....

Me: Are you fucking insane? (standing up, putting stroller behind me) who are you? You aren't my doctor. Why are you here...putting your son thru this? Did I ask your opinion...you don't even know me!!

Her: I'm just saying what I think...Oh, did I offend you?

OK...so I think I growled at her and I definitely lunged at her and somehow the nurse was there and so was Dr. GI who had a look like "oh shit!" on his face and tried to get me in his office. I was still pissed so...

Me: lady, I swear if you are here when I am done with this appt. I'm going to wait for you and you and I can finish our conversation about how offended (with air quotes) I am!!!!

Needless to say I didn't wait because 1. She could totally sit on me. 2. If I had hit her it would have been absorbed by the massive cushioning that she had. 3. I really am to old for someone to call the cops. But it's ok. Sometimes it's good to have these crazy people come and get up in your business. It just reminds me that there are way worse things that Alex's heart...he could have been stupid.