well..gooooolllllly kids.. its been FOREVER! Yes, its me.. Im still alive despite it having been summer vacation ie: hell at my house.. And hell is an understatement. No lie, i swear that if you were to view the the East Coast of the United States from the space shuttle, NJ would look just like a peice of bacon. Well.. a peice of bacon with an oompa loompa on it. Thank you Snooki. This summer we have been super crazy. Kylie did decide to take a brief hiatus at Robert Wood Johnson Hospital for about 5 days in late May early June because of some severe neck pain.. to be on the safe side we had to rule out things like blood clots adn skeletal disorders. She still gets sore, but so far this summer she has had no complaints while at camp. Kylie has been staying with friends, The Willmans this summer so that she can attend an amazing camp in Tinton Falls. As much as we miss her, the opportunity for her is by far more important then how much I miss my little peanut. She only misses her puppy Kazoo anyway.... In fact, I made Kazoo a Facebook page so that she can keep in touch with her little buddy. We attended the DBA week of Camp SUnshine 2010 edition and barely survived the experience! No... honestly it was a humbling and blessed experience yet again. Our "families' have all grown and changed.. We added some new families and sadly have lost some as well. I always say, having DBA is like being a member of a club that no one wants to be a part of BUT membership does have its priveledges.... and meeting these folks is definately one of those priveledges. I have to skedaddle, but I PROMISE i will be back sooner arather then later to update everyone on the joys of being home all summer with 8 kids, 8 dogs and a rabbit. I know.. I know ... your all jealous, right?
Love you all!

140 Miles To A Cure!

all right kids.... you know i never ask for ANYTHING.. but this?? i will beg for... Please help secure Kylies future by helping fund the research that has already saved her life MANY times over. Support Joe Creiler. Support Kylie..Support all the families that will someday hear "Your child has DBA".....
anmd yes, i promise to update soon.. its just been impossible for me to find time to sit and write ! Believe you me, its more frustrating for ME then YOU! Its MY therapy!
(and yes..you ALL know how desparately I need therapy! )

Dear DBA Families and Friends, Many times throughout our DBA journey, our lives intertwine with amazing people… sometimes heroes. It is our pleasure to introduce you to a true DBA hero. Joe Crelier from Albuquerque, NM is a regular blood donor, who recently learned about DBA. Joe was so touched by our families that he has decided to go the extra 140.6 miles for us!! In honor of our patients and families, Joe will be participating in the Janus Charity Challenge in. Our “Ironman” will swim 2.4 miles, bike 112 miles and run 26.2 miles, dedicating each step to our DBA families. Joe sets his ambitions high and he has also set a goal of raising $100,000.00 for the Diamond Blackfan Anemia Foundation to continue our mission of supporting our families and funding important DBA research. We have been amazed and truly humbled by Joe’s generosity, determination, kindness, and concern. We are reaching out for your assistance. Help support Joe in his selfless and inspiring feat. Please visit our website http://www.DBAFoundation.org/ for a link to Joe’s page, or access it directly at http://januscharitychallenge.kintera.org/cda10/dbaf. Donations can be made through our website, Joe’s page, or by mailing a check directly to the DBAF. Please indicate that your donation is in support of Joe. Please pass this information on to your families and friends and be a part of this remarkable accomplishment. Joe will be training hard for the next nine months and I ask that you help to keep him motivated and inspired. Let’s show him the DBA community around the world appreciates his hard work!

um..last post ..JULY!? yep..thats right.. JULY! I know, i know... that was one hell of a potty break. Well.. my apologies.. Apparently my gallblader and stomach lining did not feel like making nicy nice with me and went on a revolt. After a week in the hospital in August, i was on an 8 week mission to heal my ulcers and break my misbehaving gallbladder like a Wild Pony. So..count.. End of August.. add 8 weeks and that brings us to......November and Decemner. OMG....Thats right! its the holidays again and what does that mean for us Monicas? CHAOS! DRAMA! TEARS AND ANXIETY!!! Next week, we will explore the realm of transcendental meditation just to get a break for FIVE FREAKIN MINUTES! But first , I digress, go back to August when I ended up in the hospital with a plethora of bleeding ulcers and a sludgy gall bladder. Well.. word on the street is that I had some weird bile duct syndrome and the flaps on the bile ducts valves weren't listening when my brain would scream "OPEN THE FLOOD GATE!!!SEND IN THE BILE! DIGEST THAT FOOD!" So my gallbladder would swell up with bile and hurt like a mother father. While in the hospital my GB was functioning at a mere 23%..anything below 35% and they deem it "organa non grata" and banish it to the nearest medical incinerator. BUT..since I had a bounty of ulcers, that could have been contributing to the failure they gave me 8 weeks to heal up and get my bile ducts in order..Well, 8 weeks came and went...and after a scope that showed I was healed from the ulcers I had a Nuclear Function Study of my purdy lil gallbladder and dangfalbbit it seems I'm STILL no good at tests. The shot me with a chemical that made my brain think I was eating greasy, fatty food, like Wendy's or McDonald's.Then I got the nuclear stuff that made my gallbladder show up.. well it was SUPPOSED to show up...It almost didn't!And I don't mean stage fright. It was functioning so slowly they almost thought they did not give my the right radioactive toxic waste in my veins. Then in the last 10 mins, there it was.. and OMG.. it was swollen...it was UGLY.. IT WAS KILLING ME! I said dang!!.. if I knew it was gonna hurt so much I would have just eaten the Wendy's fries and burger.. whatta jypp! All the pain, none of the pleasure.The next day the news came in. 16% functionality. Oh snap! When I fail .. I fail BIG TIME! So...where does that lead us? ::insert dramatic crescendo:: dun dun daaaaaaaa!!!!! SURGERY!!!!! Well.. no big thang. Gallbladder surgery these days are day stay! Wham bam, thank you ma'am! ha... riiiight.... I saw your eyebrows raise. Your thinking the same thing i was. "me? easy? day stay? uncomplicated? ppffftttttt...." Now... in the interim, the last few months i had an ovarian cyst that got a little unruly. The ultra sound showed a hemorrhagic cyst that was leaking fluid into my belly. I looked about 9 months pregnant. and was in constant pain. That coupled with the gall bladder and ulcers made for a very cranky mommy. Very. But since these things come and go, and considering the abuse my girly parts have taken, the presence of a cyst was not a suprise to anyone. After scheduling the surgery, I had a follow up ultrasound for the cyst. I complained it was getting bigger..not smaller..and to appease me, they said they would look again. Usually with the "natural cycle" these things diminish and reabsorb...ahem..usually.... SO.. I get the US and the tech instantly says HOLY CRAP! Yeah..that's what I thought... diminished my butt... It was GINORMOUS! So.. I get shuffled down hall to see the Dr. and I tell her "oh, by the way, on Tuesday I'm having an abdominal laproscopy to remove my gallbladder" She said..cool! we can take the cyst and probably the ovary because THIS isn't supposed to happen..these cysts should get smaller eventually not continue to grow insanely like this... yeah yeah..whatever... just get rid of it please. Calls were made, approvals granted and that's right! I get a BOGO surgery! buy one , get one) During all this time I was constantly reminding the Dr's that I was full of adhesions from 8 pregnancies, endometriosis and a hysterectomy. The surgeon said it was possible this surgery would be a lil more complicated..but still a piece of cake nonetheless....It was a piece of somethign all right.. and it sure wasent cake. And here is were i will take my break ... I'm home with a brutal sinus infection and fever and I need a nap. I will continue this story later! Happy Nappy, kids!

Yeah, Im THAT mom!

OK.. I admit it. I’m THAT mom.. I am the mom who checks the calendar every day to see when school starts.. I’m the mom that prays multiple times a day for the strength to not scream “I QUIT”, climb a tree, go on strike and get featured by local papers as “Mom of many, snaps like twig, climbs tree.” I am the mom that asks “Is it September yet?” I am the moms that on the last day of school, when the teachers say “have a great summer!” I reply… “yeah… right.. like THAT’S gonna happen!” Because I know what lies ahead of me. And it scares me. SO here I am. Halfway thru the summer. And I am inundated by sandy beach towels, drippy bathing suits, and empty bottles of sunscreen and bug pray, pet clams in buckets hidden in bedrooms and no less than 47 cups in the sink at any given time. I don’t OWN 47 cup…yet there they are… All in my sink…I tried to be the mom that has her act together. I got each kid a cup, and with a sharpie, drew a picture that reflects each child’s personality with their name. I said.. THIS IS YOUR CUP! YOU LOOSE IT! YOU DEHYDRATE! Yeah, well, I don’t have to tell you how well that went…because this morning, there were 17 cups in the sink. Where the heck are they coming from? Do they have a secret cup factory under the house? Are they getting friends to throw them over the fence? Are they buying them online??? Inquiring moms want to know.
Not to mention, they are really getting on each other’s nerves. Here’s an example…The other day, I instructed my 12 year old, Cody to mop the floor in his room. It’s a small room… not much floor. Really, not THAT big a deal. Well, he absolutely positively lost his skull and apparently his sanity all in one fell swoop, and tells me that its “not his job”. Well… as soon as he said THAT.. it DID become HIS job! And ever the opportunistic not-so-little neanderthal TJ, the 13 year old, decides that he needs to tweak Cody as he mops and rants. Now, this is where the story gets a little blurry. Somehow… who knows for real but Cody and God, the extinguisher that had been in their room for YEARS was banged against the door (im sure a little posturing was going on here in an attempt to scare off TJ) and it went off… This is what I heard, from my room down the hall…Cody-”this is nuts, why do I have to mop, its not MY job” (as well as various 12 year old euphemisms I choose not to repeat in this forum) TJ, who is peeking around the wall from the stairwell “squeak squeak squawk squawk”(he likes to make irritating noises that resemble that of a chipmunk) Cody yells at him to shut up, TJ continues more. Cody yells, TJ squeaks.. more yelling, more squeaking…then I heard… BANG! WOOOSSSHHHHHHH…. Followed by screaming and “OMG!” then the sounds of bed creaking as if someone jumped on it ….. then bang!(apparently he ran for the door but couldn’t see thru the dust and ran right into the shut door) There was a bit of a commotion and rustling and TJ comes running down the hall to my room followed by Cody with THE most HORRIFIED look on his face EVER.. and a fairly thick coating of yellow dust as well. Before I can even process what has just happened, Cody is handing over his phone as punishment and babbling about how he was wrong, and made a poor choice, etc. etc. etc. So, in an attempt to properly evaluate the situation (and document it with photographs for any further reference) the three of us went to their room. Not one to miss the entertainment value of this moment, while still trying to remain the responsible adult, I excuse myself to my room where I disintegrate into muffled hysterical laughter.(a well as instant photo posting to my Mobile FaceBook page…lol) I composed myself and made my way back where I found the two of them standing in their room evaluating the damage. TJ picks up the extinguisher… look at it and says.. “I thought there was no air pressure in this thing” followed by WOOOOOOOOSHHHHHHH…. Then Cody , screaming. Sigh…… And you wonder why I’m THAT mom???

my first look at the mess....

Codys footprints in the dust..
notice the broom... this was TJs "whoops" while Cody was TRYING to begin the clean up...

My Sisters Keeper... book or movie??

I came across this Q on one of the "mom" sites I stalk... What a loaded question...for those of you who know me.. your thinking... ::gulp::... those who dont know me... here goes...I live this book... my daughter was born with Diamond Blacfan Anemia a rare genetic bone marrow failure disease. Requiring blood transfusions evern 2 weeks and was innundated with multiple birth defects.She needed a stem cell transplant to rid her of the transfusions that were bogging down her heart and organs with iron overload. The only way her doctors would transplant her was with a perfectly matched sibling. And cord blood stem cells if possible. We had already decided to have A LOT of kids, so we were confidant that eventually we would get her match, and we did... Jordie, the 8th of 10. We had tried to go the PIGD route. But at the time Kylies faulty gene was unknown and we were turned down, because although they could guarantee us with a baby the was a perfect match, they could not guarantee that the child would not have DBA as well since the cause of our daughters disease was still unknown. Since then her gene was discovered, RPL5, but I am no longer able to have kids and thankfully Jordie was concieved naturally and was her match. So in 03 we tried to transplant but Kylie went into liver failure after her first dose of busulphan because she had EVB and we did not know it. It was not untill 05 that drs had been able to create an experimental transplant regimine specifically suited to her livers needs. And on 05/05/05 Kylie recieved a new chance at life. But the egraftemnt initially failed and the doctors asked us to prepare for the need to harvest peripheral stem cells from our daughter Jordyn who was not yet three..Peripheral harvesting comes with its own set of risks... That was when we realised the moral dillema we were smack dab in the middle of. And how it would effect us forever...It was then that we realised that Kylies survival may depend solely on her sisters willingness to be her donor. Should Kylie need platelets? plasma?? more stem cells??? PART OF HER LIVER?? how do we risk one daughter for another??? Kylie was able to regain her engraftment without needing more stem cells from Jordyn, but we cant help but still feel like we are always waiting for the next shoe to drop. Kylies transplant was a "mini" and her disease COULD come back.. And it is a very real possibility that one day we may again have to look to Jordyn to save her sister. How do you make that choice?? This book was a true glimpse at what its like to be a family like ours. AS parents Joe and I have similar fears but different ideas as how to go about it. Our children all went thru hell with us, But, despite it all we have remained triumphant,, and stronger for it. I knew that I couldent go see this movie in public.. I am almost inclined to request a local theatre to allow a private viewing for me and a few parents I know in the same dilemma. I cried thru the whole book.. I couldent sit surrounded by strangers..and watch as my heart and souls greatest fears played out on the screen before me. I would feel more then naked.. When I heard the ending was changed. I was disgusted. and decided that I dont even want to see it. The emotional trauma and the physical exhaustion that comes with it is too much to end up aggrivated at the end! Not all stories have a happy ending.. and its a shame that they changed it.. the reality is bad things happen..the ending should have been left. (i wont spoil it for anyone) Maybe when it comes out in DVD..in the privacy of my home.. maybe.. till then.. my own life will suffice... sorry it was so long... its only half of what i REALLY wanted to say! lol..my daghter has a caringbridge page that we started in 03 to chronicle her journey..www.caringbridge.org/nj/kyliejae
this is Kylie on left and Jordie on the right, celebrating Kylies 4th "transplanniversary" on 5/5/08 Cinco De Mayo! OLE!

and for this year...05/05/09

SO...now that my mind is drifting back to all the "what if's" and "what is still ahead for her/us" I must bid you all farewell.. the kids are all dressing up "fancy" for a tea party and I have GOT to get pictures of THIS!!!

much love. H

A week of bennies on the beach and Im ready to start to a petition!

**DISCLAIMER!**
Let me say this first. I am well aware that the vast majority of visitors or tourists are NOT “bennies”. I appreciate your patronage to our local establishments and am thrilled to meet visiting families that love our Shore Community just as much as we do. When I make jokes or poke fun at the bane of us shore living families summer, I am directing it at a SMALL portion of the folks that visit our area. You know, just as I do, what I am talking about. I see plenty of “tourists” with the same look if shock and horror on their faces as I have on mine.
****
Ahhh… whatta day last Friday was… nothing says welcome to the Jersey Shore like a beach full of cigarette butts and inappropriately dressed tourists! Nothing says tourist like a family, so pale, I felt compelled to call the Red Cross for an emergency blood transfusion. Nothing says BENNIE like a pale tourist family that uses Hefty garbage bags as beach bags for their belongings. But hey.. gotta give em credit, they were the new Hefty Tri-flex bags with cinch straps! The surely did not cheap out on the sunscreen OR the garbage bags. But the best thing of the day was not the pod of dolphins that gracefully cruised past us like Neptunes’ star ballerinas, or the amazing display of army helicopters that made me feel not only safe and sound, proud to be an American. No, what made today amazing was the gentleman behind us who lie on his blanket for HOURS, yes, HOURS, playing his recorder. No. Seriously. I don’t even exaggerate. I wish it was a big fat hairy lie just to get a few laughs. But… like the rest of my stories…this shameful site was true. Long gone are the days when families went to the beach with sand toys, a beach ball, an umbrella, and a cooler full of sandwiches. Today, the lifeguards WILL have you shackled and removed from the beach for bringing a beach ball, and if its windy and you have an umbrella.. you WILL be presented with a Class Action Lawsuit by all the beach goers in a 100 ft radius. All those gale force winds and umbrella impalements really put a damper on the whole shade thing… We slather out kids in sunscreen that is so thick it’s just project paste with a different label, then tell them to stand and let it dry so that the sand doesn’t stick to them and coat them like a breaded chicken nugget. Lunches no longer brought in a cooler (well, ours are, but we like to go against the grain) but are now overpriced, saturated in saturated fat, sodium enriched, boardwalk food that makes your butt grow just smelling it. Then there are the families that just grab a stack of pies (pizza pies) and sit on the beach eating burning hot, cheesy, tomato-y eventually sandy pizza in their jeans and sneakers. A perfect segue into my next diatribe. Really.. you go to the BEACH… yet you arrive in jeans and sneakers with NO BATHING SUIT! ??What the hell is THAT all about? Please.. Ladies… promise you… you DO NOT LOOK HOT swimming in some dudes tighty whities and a sports bra. Ack.. not even close. Nor to you look attractive when you stuff 15 pounds of sausage in a 5 pound casing. And men… please.. men… speedos are so… European. And being from Newark doesn’t make you European. It just makes you a bennie in a dumbass bathing suit. Please people. I don’t take my kids to the beach for impromptu anatomy lessons. Pretty bad when even your teenage BOY is grossed out by what he sees walking the boards. Nothing is left to the imagination anymore.. Girls wear anything that shows everything, and the lack of clothes they wear actually even proclaim just how easy they are! (as if the style itself doesn’t say that enough!)
Our next beach day did not fare much better…we lug all our crapola just far enough down that we aren’t shouting over the sounds and screams coming from the pier, then trudge towards the water’s edge.. we go just to the point where the tide, when it comes in, may or may not soak a few towels..and we set up our “perimeter”.. now.. its painfully obvious we are chock full of kids, unless you really think that Joe and I, by ourselves, need 8 towels, each hand stitched with a child’s nickname, draped out on the sand, a near audience of chairs, and more sand toys then Toys R Us. And as I have grown up on the shore, the typical “beach etiquette” as my friend Laura likes to call it, is, one does NOT plop down in front of a “family campus” that is obviously on the water’s edge to afford one a safe, clear view of their children. Well..Let me tell you…the trio we encountered failed to notice all the above.. But no one in a 10 blanket radius failed to notice this near translucent fella who dropped his cargos only to reveal his grey pinstriped Jockey bikini undies… yep.. dude stripped to his skivvies.. At least the chicks had bikinis.. but when this guy took nearly 20 mins to oil up one of the girls, I sent my kids to the water to look for sand sharks before my tremendously observant children started to ask me questions that even I don’t have the guts to answer! I’m assuming they were either deaf, or foreign because I was not so subtle in my horror and was quite vocal with neighboring parents at the dilemma we were facing.. Literally facing… when he started to pop the pimples on his hairy milk white legs, I nearly lost my lunch… I was ready to bribe Charlie and Ryan to collect jellyfish in a bucket and “accidentally” drop it on his well oiled neither regions. But, the fates saw the potential for disaster and sent a huge wave onto their blanket, so they moved up and to the right a little bit… where I was entertained to see a not so thrilled family make a HUGE issue about his undies… Oh well.. not my problem anymore…. Gotta love summer.. I’m telin ya..

Yesterday’s beach day was tremendous…gorgeous…perfect…we had a great wave pool form in front of us… Laura and I relaxed while the kids scooped up shells by the handful and presented them to us like stocking stuffers…then… again… the ENTIRE beach to choose from (and we were at a relatively un-packed beach) and a pair of women and their children set up their blanket and THREE umbrellas in front of us… So… I relocate all our stuff and make it abundantly clear that rude people never cease to amaze me and its no wonder there is a website called http://www.bennygohome.com/. The day continued to be great.. kids swam, Laura and I chit chatted….Charlie ate.. kids made sand castles, Charlie ate some more, kids swam some more… Charlie ate….ha…then, as the day was drawing to a close, the seagulls decided it was time to see whats for lunch. About 20 birds were stationed between our blanket and a neighbors as all the kids were tossing snacks. Think Nemo and the “mine, mine, mine, mine” scene… Then from behind us, a very unusually dressed (barely is more like it) woman, who I had been observing talking to her invisible friends most of the afternoon, starts shouting something about not wanting to watch Alfred Hitchcock movies and some other crazy stuff… So, eventually she calms down and stands behind us in some Ti Chi stance, smoking her cigarettes and gently rocking back and forth……. Today’s lesson kids… this is what happens when you miss your lithium dose. All in all the day was perfect. The typical “OMG she shouldn’t be wearing that” sightings were abundant, then the token “DID YOU SEE THAT?”s were fairly numerous. But, there were honestly more “Your friends and family must not really love you if they let you go out looking like that today” then normal. Im all for self confidence… and individuality….but… shoot… Some people need to start suing the companys that make mirrors for false advertising… I swear.. I am by no means judgmental, or uppity. I am definitely not perfect..but, hey.. I AM in shape.. round is a shape too yanno!!.. ha... I am however, respectful ... of my body and other peoples sanity…”Unleashing the fury” upon society is no way, shape or form, confidence.. just ignorance. And in most cases.. just plain rude. So… yeah.. If you come to the beach looking like an idiot or inappropriate.. I am gonna laugh. And if you look at me and laugh, that’s ok too… it’s what I’m here for…I know, that my life makes other people feel better about theirs! And I’m cool with that! So.. Please… Best way to know if you’re ready to go to the beach? Ask a kid.. they are honest.. painfully honest.. I know.. mine are honest with me .. ALL THE TIME! LOL…
Take care! Enjoy the summer and the beach! Just COVER UP! lol

A boy, a pair of scissors, and the truth....

This is a story from back on 06 that my dad reminded me that i HAD to post... so... here it is...

The Snip and Snore Bandit....

Toms River, NJ- There has been a rash of incidents in the Monica household as of late. Seems late at night while visions of sugar plums are dancing through everyone’s heads, one devious head is stalking the innocents. Twice in recent weeks, poor, unsuspecting victims are awaking in the morning with less hair than they went to sleep with. Is this just the natural process of hair loss or something more sinister? Well, considering the victims are just 5 and 6, receding hairlines can definitely be ruled OUT. No, folks, this seems to be the work of a crafty and sinister mind, preying upon his victims while they sleep. Although sources close to the investigative team initially insisted there are no suspects yet, they have just revealed that evidence had been discovered under the bed sheets of one Mr. Charlie Monica. My source tells me that scissors with stray hair, still attached, matching those of the victims has been seized from Mr. Monica’s bedroom. Also beneath the Bob the Builder comforter, the lead detective discovered evidence that this tragedy may have been in the planning phase for a while. Practice cuts encompassed the vast majority of the bottom fitted sheet, previously undiscovered due to the location of the evidence, at the foot of the bed, concealed beneath blankets and sheets.
Mr. Monica was presented with this evidence but denied any involvement, rather, suggesting the first victim, a Mr. Ryan Monica, who lives in the same house and sleeps in the bunk just above our suspect, did the crime himself and then planted the evidence. The second victim, and hopefully the last, a Ms. Jordyn Monica, also a resident of the same house but sleeps in a room across and down the hall, cannot even be sure when the incident happened to her, due to the nature of her hair style. Only after her mother decided to place her hair in a bun for ballet practice one morning, did she notice the missing locks. Further investigation revealed blond curls within her bed sheets, but she cannot recollect any time that the suspect would have had access to her room, especially while she was sleeping. To reach Ms. Monica, Mr. Monica would have had to sneak from his room, enter Ms. Monica’s room, and without stumbling over the mass quantities of kitchen accessories strewn about Ms. Monica’s room, climb onto her top bunk, which at the time did not have the ladder assembled yet on the frameworks of the bed. For him to accomplish this without waking up Ms. Monica or her two roommates is confounding.
Further evidence found, seem to suggest that the attacks on these kids are just the final culmination of Mr. Monica’s strange fixation. Numerous My Little Ponies and even the families Brussels Griffon, Sprout seems to have fallen victim. A profiler from the MKE (Moms Know Everything) feels strongly that these were all a result of pent-up frustration, curiosity and mischief. The progression of the attacks leaves everyone hopeful that it was stopped just in time. The next obvious victim, following the floor plan of the upstairs, likely would have been a parental figure to Mr. Monica, which could have resulted in permanent damage to Mr. Monica’s future here on earth.
While getting ready to publish this story, Mr. Monica suddenly volunteered to give a statement to the MKE that he in fact was guilty. He apologized for his actions and offered his favorite matchbox cars to the victims as an apology. When asked why he finally confessed, Mr. Monica replied "God don't like liars".
His once furious parents are now overcome with sentiment and thrilled that their son, in fact, has a conscience and is learning that the truth will set you free!