Tattle Tales Need Not Apply....

If you know me at all then you know I have verbal diahrea. Stuff falls out of my mouth when I do not have my foot in it. This Blog is to let my friends know what life is like with Alex. Sometimes, I will say not nice things. I will use bad words. I will type like I speak. If you are easily offended then this blog may not be the place for you. This is my place to shout, bitch and moan about all the wonderfulness that is Ebstein's Anolmaly and having a "baseball" husband.

Tuesday, February 23, 2010

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!

Sunday, February 21, 2010

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...