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Sunday, December 31, 2006 3:20 PM CST
All is well my friends and family. We spent the week in Schneiders. What a mess...Ky is home, feeling much better. We have new antibiotics for the infections, tylenol with codeine for the migranes and a plan to do go back in three weeks to start the palate ball rolling. I will update details later. Hilary is going to post for me this New Years eve. I cant wait to read it. Or can I??? hahaha...
6 care packages came back to us for being "improperly sealed" WHAT??? One was opened...I hate the post office.
but tons of stuff was delivered to Schneiders BMTU and I have an awesome story about meeting,at ROnadl McDonald House, by chance, a mother who's child was Gratefully Given to. I thought she was going to go into labor when she learned who I was...well, I am the lady to go into labor in front of aren't I? Been there, done THAT 8 times.
My idea for this page for the new year....Share with me your moments of Gratefully Giving... Pay it Forwards...Random Acts of Kindness...I want to spread joy, and inspitation to those reading this CB page. No more despair. Ky is cured. THe rest is doable. Now we celebrate in 2007
Our new motto???
"Laughter, and bubbles are by far, the best medicine."
Added later New Year's Eve...Hilary's looooooong update :-)
To all of Kylie’s faithful CB followers:
The following is what became of the narrative that I told Heather I would for Ky’s CB site. As I thought about all that I wanted to say, the narrative turned into more of a novella. This mini-project forced me to sit down and put my thoughts about Grateful Giving on paper for the first time. In order to properly express my thoughts about Grateful Giving, I had to properly express my feelings about the journey I have walked with Kylie and the Monicas, and finally, in order to properly express how that came to be, I needed to write a bit about myself. This finished product comes in two parts, both of which I will use in various shapes and forms to publicize Grateful Giving in the coming months. As a disclaimer before you read, Part One is largely all about me. I am often asked how I became so involved with GG and how I came to even know the Monicas in the first place…well, in case you ever wondered that same thing, here is the answer in the shortest form I could manage (yes, this is my version of short form…my apologies!) Feel free, however, to skip to Part Two and read about the latest happenings. That was my original “assignment”, but I took it, ran with it, and gave myself a bit of a written record of some important events that have shaped the person I am today…and as you can see, Heather and I decided to post it! Thank you for indulging me here…love to you all and all the best for the New Year.
Love, Hilary
Part One
Normally, when it comes to fulfilling promises, I am quite punctual. Heather knows me far too well by now, and I imagine that when I said I would write a little something about our latest adventures for Kylie’s page, she thought that she would be reading a finished product within 24 hours. Ordinarily, I would have thought the same thing, but I have found through my college experiences that I am an unusual breed among writers. Most people I know are content to write, revise, and revise some more until their finished product is just right. While I admire their tenacity, I cannot imitate it. Perhaps it is the perfectionist in me, or perhaps I am just stubborn, but I need to think things through. If the words don’t come flowing out of me like vomit out of Kasey Mae’s mouth after too many Slim Jims, everything comes to a screeching halt. I sit, I stare into space, I rearrange the icons on my desktop, I daydream, I think, and eventually it all comes into place. Sure, sometimes it all comes into place at 2 AM, but beggars can’t be choosers. Once it’s there, I know it’s right. I can, in fact, bring Christopher Columbus and Karl Marx back to life as modern-day suburban neighbors and have them debate their various political theories (I promise, I didn’t just pull that one out of nowhere – one of my professors really and truly assigned that as a term paper topic, but that’s a story for another day), and I can do it in (more or less) one shot. While Monica mayhem does not give me anything nearly as insufferable as the headaches that good old Karl and Chris did, I discovered that when attempting to write about our recent escapades, I really needed to think. I needed to process. Stories about decorating cookies, family dinners, and movie nights are all well and good and funny, but they leave out far too much of the story. There are, in fact, humorous and beautiful and crucial and downright moving moments to be found in sorting packages for Grateful Giving, road-tripping to Long Island in the early morning hours with a sick little girl in the backseat, distributing Grateful Giving items and knowing for the first time how Santa must feel, and sitting back and listening to your hero express to you the things that SHE wants you to know about her walk through life thus far…HER memories of the hospital that she has spent far too much time in. To do a rush job would be to do an injustice, and to leave out any part of the story would be to leave out a key piece of the puzzle that just may reach someone in an important way. However, I highly doubt that anyone’s life could be as profoundly altered by Kylie Jae as mine has been over the past two years. So with that, allow me to give you a peek into the whole story, the story that brings me to this moment in time. Now, Heather is the one who is writing the book, not me, so some things will have to be abbreviated, but I hope through my rambling that you will gain a better understanding of the point of view from which I write – which, as I have learned, can sometimes change everything.
*
As difficult as it is for me to believe, there once was a time when I did not know of Kylie Jae. I did not know of DBA. I did not know of a non-fictional family with ten kids and two dogs. Apparently, I was pretty naïve, but I have an excuse: I was sixteen. The year that I turned sixteen was a pivotal year for me. MTV culture would have us all believe that “super sweet sixteens” get riotous parties, celebrity visits, new “pimped out” cars, and enough cash to fund the workings of a small country. I, however, got something different. For my sixteenth birthday, I got a chronic illness.
What began as random, brief, unexplained bouts of dizziness, nausea, and fatigue in spring 2001 became constant, draining, yet still unexplained bouts of dizziness, nausea, and fatigue by November of the same year. Along with all of that came the occasional racing heartbeat, plummeting blood pressures, hot flashes, and legs that turned a remarkable shade of purple after only five minutes in the shower. Junior year of high school was spent stuck on a revolving carousel of doctor’s visits, consults, medical testing, homebound tutoring provided by my school, and periods of time when I was too out of it to do (or at least to now remember doing) any of the above. A year and 20 (yes, my mom counted – 20) doctors later, the diagnosis was made by a wonderful physician at the Children’s Hospital of Philadelphia and confirmed with a morning of cardiology testing at CHOP: I had a form of dysautonomia (a broad term for disorders of the autonomic nervous system) called Postural Orthostatic Tachycardia Syndrome (POTS). Years later, I have since found that other young people with the same diagnosis have CaringBridge pages about their experiences with this illness, so the diagnosis may not be totally unfamiliar to those of you who are so dedicated in following many people here on CB (sorry, I’ve never had a page, so I have no journal link to send you all over to…you’ll have to put up with a bit more babbling about all of the medical jazz, but I’m almost done, I promise!) To put it relatively simply, POTS is an illness marked by the body’s inability to retain normal heart rate and blood pressure while upright, thus triggering the symptoms I mentioned above. Causes vary – in my case, it is believed to be virally triggered – and cure is unknown. Treatment consists of meds and drinking what can, at times, seem like ungodly amounts of fluid. I actually learned how to be nauseous yet still stomach a gallon of milk a day! (If that doesn’t belong on “Stupid Human Tricks”, I don’t know what does!)
Return to regular school came, thankfully, in time for senior year. Acceptance into my current “second home”, Loyola College, arrived in early 2003, and a triumphant high school graduation took place in June 2003. Then began the “downward spiral” of what I suppose can best be described as a relapse: the symptoms that never really went away were back with a new vengeance, launching an express train back to the drawing board in terms of treatment plans and, in what I considered at the time to be my greatest heartbreak, deferred admission to college while my “medical life” was sorted out. What began as deferred admission for one semester became deferred admission for four semesters – a total of two years, which translates into a lot of time that needed to be spent in new ways…and in this time, ladies and gentlemen, entered Kylie Jae and the Monica clan.
*
I learned of Kylie through CaringBridge, and I learned of CaringBridge quite accidentally. While I was attempting to live my “normal” senior year of high school, a member of our student body passed away after battling a rare form of cancer. An independent memorial website was established, which I would occasionally visit and read…and in the guestbook of that site, lo and behold, was a message containing a link to a CB site. In a moment when I’m sure I should have been doing homework, I clicked, and due to the fact that this whole event took place during the days of “free linking” on CB, I clicked, clicked, and clicked some more. I do not remember seeing Kylie’s page that day, but I was intrigued enough by what I did see to bookmark the point at which I ended up (if I remember correctly, it was somewhere in the neighborhood of the famous Julianna Banana) to be returned to at a later date when perhaps I would be “not so busy.”
Time went by, and occasionally I would visit one site here and another site there. I would say a prayer here, another prayer there. Something I could not explain kept drawing me back to these children, and I still cannot explain it. Something inside of me wanted to do more, but something else inside of me told me to hold back. On the laptop computer that had been purchased for me to start my college career, I read of the struggles of children far younger than me…struggles that were far greater than mine. My parents (my mother especially) sometimes tried to encourage me by reminding me that perhaps my own trials were happening for a reason that I had yet to discover. I was still unsure of what that reason or purpose might be, but in some strange way, the stories that I read on CB encouraged me to grow in faith that such a purpose might be out there waiting to be found.
October 2004 was the month that I decided I wanted to try to do something small to help the CB community – sign some guestbooks, possibly send out some goodies. October 2004 was the month that Kylie Jae Monica was a Featured Child for the Tumbleweed Foundation. October 2004 was the month that I found myself returning regularly to the webpage with the border of Elmos and learning more about this sick little girl with the infectious smile. October 2004 was the month when I, unknowingly, took a huge step in finding what I now believe to be the purpose in the suffering.
Due to the fact that my hard drive is that of a technological packrat, I still have the first e-mail that I ever received from Heather. An innocent guestbook comment about the fact that I enjoyed the music on the webpage (the now-famous “Lullaby For A Stormy Night” by Vienna Teng) earned me a sweet e-mail signed by “Heather Monica, Kylie Jae’s Mom” telling me about how she and Joe had recently heard the song for the first time at a concert and passing along the name of the album on which it was recorded (an album that I then went out and bought, I might add!)
Nothing particularly personal was shared in those first few e-mails…Heather didn’t know that I had any type of illness, and I knew little about her aside from a few funny anecdotes about the kids. Still, slowly but surely, a sort of connective tissue began to form between myself and Kylie, myself and Heather, and myself and the Monica family. First and foremost, Heather’s journaling struck me. The situations we found ourselves in were vastly different, yet I could see the truths in what she shared and find some common threads. What was especially striking were the many ways in which we found ourselves to be “freakishly linked.” For example, when it came time to order the original batch of “Cure Kylie” bracelets, I dashed off a note to Heather to ask her to keep her eyes open for an envelope from my hometown here in New Jersey. My jaw hit the floor when I read her reply…little did I know that Kylie had spent nearly a year at a residential hospital here in town, and little did Heather know that while Kylie was learning to walk and talk at this facility, I was directly across the street from her, sitting in the classrooms of my high school, learning history and algebra. In fact, the kids from the hospital regularly came over to our school to “trick or treat” or participate in other events, and I was there for many of them…I just never knew the significance that one little face in the crowd would one day have on my life! Kylie headed home in October 2001, and by early November 2001, the medical journey that would eventually lead me back to Kylie Jae really began.
The similarities go on and on, and they were enough to make us all wonder if it was possible that the “Twilight Zone” really did exist and that we were really stuck in it! The months wore on, and I found myself healing physically…and as I healed physically, I became more and more motivated to help Kylie do the same. Transplant was looming for her at this point, and I was able to bring some bracelet flyers to Voorhees Pediatric to share with all of the staff there who, not surprisingly, still remembered little Squirt. My first “Grateful Giving” packages went out, but back then, they went out to Kylie, the princess up in her tower at Schneider’s. I FINALLY started at Loyola in fall 2005, and at that point, Kylie was FINALLY transfusion-free and skipping down the road to her cure.
It was a year ago – December 2005 – that I found myself hugging the Monicas in person for the first time, and the rest folks, as they say, is history. A lot can happen in a year. For example, Loyola College now knows about Kylie Jae in a BIG way…just before we left for winter break, the paperwork was completed to make Grateful Giving an official student organization. Yes, I now work with the Department of Student Activities and a faculty moderator, and I have multiple avenues through which I can finally request school funding for GG expenses…the whole shebang. Our first project was a huge success, with 60 students involved in some way, shape, or form and 24 “Care Packages of Hope” delivered to Johns Hopkins Children’s Center. My faculty moderator (also a professor of mine) allowed me to present Grateful Giving to our class, and I passed a sign-up sheet around as I spoke. When it was returned to me at the end of the period, I had tears in my eyes to find that every single student in the room wanted to be involved. I now have more speaking engagements lined up for January, more students and faculty to present to…it’s overwhelming, but it’s overwhelming in the most wonderful way! In fact, one of my favorite things about 2006 is that it was during this year that I was finally able to not only share Kylie’s story with others, but to let them know that Kylie is really and truly CURED of DBA!
*
Part Two
Last week, I got to hear about Kylie’s cure straight from the mouth of the famous Dr. Lipton…which brings me, at long last, to the recent adventures that all of you came here to hear about in the first place! I arrived on Wednesday the 20th, just as Jordyn’s bus was pulling up to carry her off to kindergarten for the afternoon. Hugs and kisses were exchanged all around, Jordie went off on her way, and we were off and running. Kylie was home sick with that darn cyclic headache and fever; Mae and Charlie had already been deposited by their bus after a morning at school. Grateful Giving was tops on the agenda, and I got my first live peek at the workshop…wow, is it awesome! One table full of craft supplies and board games, two shelves stuffed with goodies for boys, a shelf and another table of toys for girls, and a huge box of items for babies. Super-duper, hospital-strength germicidal wipes for cleaning and wrapping paper and bows for decorating. Boxes, greeting cards, Grateful Giving letters, printouts to make Grateful Giving magnets, scissors, tape, EVERYTHING we needed! We had six bundles to make for the kids at Schneider’s plus packages to be created for the other families that have been referred to GG thus far…let’s just say we weren’t bored! Kylie, Charlie, and Kasey played while Heather and I worked. Kylie needed meds at one point and Heather returned to the basement with a Motrin. Ky had a cup of milk sitting on the table, but she wasn’t reaching for it. I glanced over at her - “Um, Kylie, are you really going to”…GULP…“uh, dry swallow that?” Heather looks from me to Kylie and back to me – “Did she?” I nodded. With a shake of her head and a barely audible whisper of “my hero”, she goes back to work and I follow suit. After all, as Heather pointed out, we had come full circle. Two years ago, I was at home making care packages for Kylie. Now, here we were, all together, making care packages to bring to children at the very same Bone Marrow Transplant Unit in which Kylie had once sat. The realization gave me goosebumps.
Joe made it home from work before the rest of the kids were finished with school, so he headed off on a retrieval mission to go collect them at dismissal time. Into the house they charged, and the walls are vibrating. A little energy got burned on the trampoline out back (thank you, unseasonably warm December temperatures), Jordyn started to cry and insisted that someone hit her on the nose (a quick check and a kiss – no blood, so we were good), and the girls settled in to color. Kylie looked peaked – poor kid’s headache was on the “up” cycle of pain, and TJ announced that he needed the computer to work on a brochure about Australia…but, we shouldn’t fear, he wouldn’t be long because he already “knows EVERYTHING” about Australia. Uh, fabulous. He dazzled Tyler Lee (my “mini-me”) and I with his knowledge while we got back to the packages. We were on to the fun part now…lists of ages and genders in hand, we were ready to pick out the goods! Tyler zoned right in on the girls, and thankfully, Ryan appeared just in time to help me with the boys. Actually, Ryan really impressed me that day. Every five seconds I heard, “Oh, Hilary, look at this one…the six-year-old NEEDS this!” or “This is really cool, a three-year-old can have this, right?” or “Are there any MORE boys on the list?!” Of course, our expert Kylie Jae was on hand to approve or veto our choices. Cody came down to check out what the older boys were getting, and even Kasey and Charlie got into the act. Sure, Kasey spent most of her time staring wistfully at a make-up kit and wondering aloud if Santa would remember to bring her one too, and Charlie’s “packing” strategy consisted mainly of finding items he could reach and putting them into the closest box…but nonetheless, it’s touching to see kids so small have such a clear idea of how they can help others and, even better, to have such an enthusiasm for it. Snaps to Heather and Joe for starting that life lesson young! Heck, Ryan and Kasey even stuck around to help make sure every toy for the Schneider’s packages got wiped down before being packed up…now THAT’S dedication!
Dinnertime rolled around, and Joe got pizza ready for the rest of us “elves.” Feeding frenzy at the Monicas…always an interesting time of day. In the time it took me to wash my hands, Jordyn had already turned Dad’s dinner assembly line upside down by dumping her two slices on the floor (face down, of course, because it’s easier to clean that way), and that somehow made everyone else believe that if they waited for a plate to come their way, they would be waiting until NEXT Christmas to get their food…and thus, the vultures descended. No worries though, the chaos was reigned in, and soon everyone was chewing away contentedly. Okay, fine, maybe poor Heather and Joe were a little more frazzled than completely contented, but I’m pretty sure they’re used to it by now. After dinner came jammies for those ages seven and under who did not already have them on, and then we embarked on a holiday adventure…cookie decorating. Oooooh boy. Everybody got one large gingerbread cookie, and we had red, white, and green icing as well as rainbow sprinkles and candies to share. As soon as Cody hollered from the next room, “Hey you guys, Mom and Dad said we could staaaaart!,” Charlie promptly rang in the new year a bit too early by ripping into the sprinkles and producing a surprisingly confetti-like shower over the table. Clearly, it was time to break out some bowls to contain the, um, “celebration.” Everyone got a little artsy. The girls like the idea of using every color on their snowmen, while TJ preferred his headless. Ryan decided that a Christmas tree could be entirely green as long as the candy toppings were piled an inch high. By the time we were done, Kylie and I had red icing on our noses, Jordyn had it so spread over her hands that it appeared she had just arrived from a crime scene, and the dining room table looked like the aftermath of a war between the Keebler cookie elves. As for the plate of cookies…well, I think the beauty is in the eye of the beholder.
After the cookie festivities came the obvious clean-up of everything and everyone that was even slightly sticky (Ky had a green gummy fish on her SHOULDER of all places…whaaat the heck?!) as well as bedtime for the younger crowd. At this point, Heather and I decided to execute an idea that we believed to be brilliant. So far, we had been packing the Schneider’s gifts in white trash bags. Sure, trash bags are functional, but we thought that SURELY we could find something equally large and a bit more festive. Off we go on our mission. First store, no luck. Second store, almost no luck…until we spot the rack of four-foot tall silver holiday bags for 50ff! SOLD, we’ll take six. Home we go, proud of our success. TJ, Cody, and Tyler Lee greet us at the door and somehow all manage to cry “MOM!!!” within milliseconds of each other. (Apparently, Tyler’s Secret Santa gift has gone MIA, Cody’s video game refuses to work, and TJ can’t locate the proper paper on which to perfectly display the beauty that is Australia.) All three fires are put out, and Heather, Joe, and I sneak off to the basement to try out the new bags. Toys go in, we hold up the backs in triumph, and CLUNK – the goodies promptly rip through the tissue-thin material and hit the floor. Well, our mental balloon was certainly busted. Apparently, such bags are only useful if you intend to gift your love ones with mass quantities of cotton this holiday season. Joe and Cody headed BACK to the store to express our displeasure, Tyler and I started wrapping gifts for a package per one family’s request, and Heather went back to finishing the greeting cards and letters after sticking some bows to the trash bags for good measure. Half an hour later, Joe and Cody were knights in shining armor when they returned bearing gifts of Taco Bell. Heck, Heather and I were spending the next day in a hospital ANYWAY, and packing DOES make you hungry...two excellent reasons to brave the E. Coli. However, because no meal can be completely uneventful, Skippy decided to help himself to a taco and drag its salsa-stuffed tortilla across Heather’s beautiful greeting card calligraphy. Sigh. Eventually, we got it all done, and my head hit the pillow sometime around midnight with my cell phone set to wake me up at 4:15 AM. Yes, 4:15 in the MORNING. Our sick little hero needed a visit to the docs at Schneider’s, they wanted her there at 8 AM to look her over and prepare for a possible admission (an admission for Christmas…gag me), and we needed to drive up through New Jersey and over the bridge to New York to get her there. Early wake-up call, here we come!
*
When you get up in the “morning” (a relative term – hard to believe it’s morning when it’s still pitch black out), it’s a very bad sign when you can still taste the toothpaste in your mouth from the night before. It’s even worse when you go to brush your teeth anyway and the toothbrush is still damp. Nice…very nice. Joe and I loaded the van with bags and boxes of gifts at 5 AM, and Heather, Kylie, and I were on the road soon after. Thanks to the NY/NJ bridge traffic that hits at 7 AM, we STILL arrived in LI after 8. Not a big problem…all it takes to get Kylie signed in at clinic is to make sure that one of the MANY people there who know her (which is, well, pretty much everyone) notices that she’s arrived. It was unbelievable…so many miles from home, the child life specialists knew Kylie, the secretarial assistants knew Kylie, the nurses knew Kylie, the doctors knew Kylie, the housekeeping staff that we ran into in the cafeteria knew Kylie…and Santa knew Kylie! Ky and I checked into clinic while Heather, um, “borrowed” a big cart to tote our goods around on, and Squirt got a pass good for one visit with Santa while she waited to be called back. After the meet-and-greet with the big guy, it was OUR turn to play Santa.
Kylie was the first to open up our boxes of goodies for the kids in the hem/onc clinic. Heather hadn’t even caught up to us yet, but there we were, next to a long line of parents and kids ready to check in for the day, rifling through a box with a little boy in search of the perfect item (a tic-tac-toe board captured his interest), and thanks to a huge box of bubbles given to GG by Cedar Grove Elementary, we sent him off for his finger stick with a little bubble necklace as well. Heather reappeared, and we were really off and running. She grabbed some goods and headed off into the chemo room while Ky and I worked the waiting room. Kids hooked up to IV poles materialized, looking at us in disbelief when we told them to go ahead and take – gasp! – MORE THAN ONE ITEM (again, thank you Cedar Grove!) Parents got puzzle books to fortify them for the long day, while kids had their pick of coloring books, crayons, jigsaw puzzles, toy cars, and of course, our new staple – bubbles! To watch a tiny room packed of sick kids fill with bubbles…THAT was the best part of the day.
Of course, in the midst of all this, Kylie had her own consult with Dr. Lipton. She got called back to an exam room, and we, her “entourage”, followed. Before the good doctor showed up, Ky got to present a baby doll to the toddler in the next room, and Heather set down the open treat boxes in the waiting area in hopes that people would help themselves in our absence. In came Dr. Lipton, and we got our next Christmas present: we would, in fact, get to return to New Jersey with the same number of people in the van that we had left with. Woohoo! Of course, there were the “concerns”…the aspirations (he’s still impressed by the cucumber chunk that wound up in her lungs several months ago), the lost weight…but he did say to Kylie, and I quote, “We need to get you big and strong so that you can dance at your wedding.” Works for Kylie – she had already polished off a sandwich and three juice boxes in the time he had been in room and was hankering for chicken strips from the cafeteria.
Back to the waiting room – a new set of kids, more treats and bubbles to be given. Again, the bubbles became the main attraction…awesome. Up to Med 4 and Bone Marrow, where Kylie and Heather visited with Ky’s nurses and I took in the sights. It was all even smaller than I imagined it. Kylie and Heather pointed through the glass to show me Ky’s room during transplant – the curtain, no wider than a shower curtain, was drawn, as were all of the curtains on the four rooms lined up one right after another. So much life, so much emotion contained in such a small space…I wondered how it was even possible. I just hope some bubbles made their way around BMTU later that afternoon once the GG packages got opened!
Our next stop was a return to the clinic to collect all the stuff we had dumped there…coats, Kylie’s “just in case” admission duffel bag, and our nearly-empty boxes of goodies. As Heather gathered prescriptions and such, Kylie took my hand to make sure I saw the one thing that SHE wanted me to take in. Standing on a ledge, faced pressed against the glass of a floor-to-ceiling window, she pointed down at the greenery in a small courtyard. Looking at me, she said, “That’s what I saw from my window.” Pointing upwards, she added, “That was my window on Med 4.” I thought for a moment, picturing little Kylie spending long days staring out at the very space I was looking at now. I asked her if she could see this little “garden” of sorts whenever she stayed at the hospital. Pausing, she eventually replied, “Well, not all of the rooms have windows.” At this point, I was attempting to gulp down the lump in my throat. All that this tiny girl wanted whenever she was within these walls was to be on the outside. She wanted to run free through gardens and play as a little one should. In that moment, I gained new insight into our Grateful Giving mission. All of these kids crave the outside. I remembered back to my days of sickness…I wanted a normal life – I wanted the outside. Well, on this Thursday, Heather, Kylie, and I WERE the outside for a group of sick kids and their parents. We brought with us oceans of love sent from near and far, from so many places that seem so very distant from this one hospital. The same was true back in Baltimore…if three vans full of college kids carrying bins of gifts isn’t a HUGE taste of the outside, I don’t know what is. As we pulled away from Schneider’s that day, two children waiting outside with their parents blew bubbles into the air – bubbles that Heather had handed them as we piled into the van.
*
To Kylie, to Heather, to Joe, TJ, Cody, Tyler Lee, Ryan, Jordyn, Kasey Mae, and Charlie…thank you for reminding me of the blessing of blowing bubbles outside. Thank you for taking my hand and allowing me to walk this journey with you. Thank you for all of the inspiration that you provide to me wherever and whenever I bring Grateful Giving to a new place or tell new people about it. For Kylie especially, thank you for helping me along the way to discovering my "purpose behind the suffering" - to become a Child Life Specialist and help bring children in hospitals a taste of the outside in my professional life. To all who have taken the time to read this, I thank you. May your life always be filled with bubbles and laughter, and may you be inspired to give in gratitude in whatever way moves you the most. May you be as blessed in your lives as I have been in mine. Happy New Year.
Friday, December 22, 2006 5:01 PM CST
Ahhhh..deep breath... OK, Kylie IS home. Untill Tuesday. Dr. Liptons Christmas present to us is delaying the admission. 9am December 26th Kylie the kids and I will be in Long Island getting her admitted. Her migranes are intensifying, but her cough is being held at bay by the Ceftin. They will call in the pulmonoligist for the bronchoscopy and bronch wash [[shivers]] CT of lungs and I think an MRI of her head. We did a head CT but a MRI must give then a more detailed image. This two week long headache is a little baffeling. He weight continues to drop, despite her impressive capacity for eating. A scope of the intestines in possible. Dr. Lipton feels she is malnourished. SNAP! Kylie? Malnourished? the kids eats like...well...a one man slaughterhouse. Its frustrating. Her growth curve has stopped. BUT her transplant stuff is a COMPLETE SUCCESS. Thank goodness for THAT!
Poor little kid is really getting floored by this cyclic headache. Always there but sometimes debilitating.
Hilary was with us for three days, we made GG packages that Joe shipped for us, and in Thlma and Louise style hit Schneiders with a sick Kylie and mass quantities of toys and goodies for the kids on the bone marrow unit and hem/onc clinic. The day was frustrating and fulfilling at the same time.
Hilary promised to post a little narrative about her stay at Casa De Crazy. That should be a hoot.
I STILL have not decorated the tree or baked a single arterty clogging goodie..But we still have two days. A lot can happen in two days. I did, however recieve a sweet treet from my hubby last night, to cheer me up after the rough few weeks I'v had and stinky day in Long Island.I am so lucky to have him. On my pillow was a certificate fo a manicure this morning at 9:30. So I am now the proud owner of someone elses nails, painted in French Manicure fashion. Mae and Kylie picked a little candy cane and snow flake as nail art...I feel pretty and fancy but typing is a beast. And I suspect I will be getting a lot of unsavory stuff stuck underneath them. If fact, thanks to Charlies inability to properly wipe his nether regions, I had a little Lysol action going on already! ewwwww....TMI!!!LOL
OK, I need ot go try and re-group. Ill update a little more later. Love you all-
Wednesday, December 20, 2006 8:02 AM CST
** UPDATED BELOW AT 4:30 pm**
get a drink, maybe a snack, this is a long one.....
For the past month or more, Squirt has been sick.
I haven’t stressed or obsessed..
yet now I confess,
I should have…
Sort of like a Haiku, eh?
Well, a little over a month ago Ky began to spike fevers and cough. Determined to not swing into “Kylie is sick “ mode and get the bells and whistles clanging, I so desparately wanted her to just be like the kids. Sick. Blech, plain and simple. Pat on the head, tissue over her nose. A little Triaminic. A little warm greet tea…and a spot in highly revered space between Mommy and Daddy. You know, normal!
I accepted the fact that it would take her a little longer to get over it, but after more than two weeks, relentless vicious coughing, no sleeping and fevers between 103-4 it was becoming obvious that this might be a little more than “normal”. So, (still WANTING to be normal) I take her to the kids pediatritian. Two hours later, two calls to our local hematologist, then two calls to Schneiders, and we are off to the ER. Chest x-rays reveal pneumonia. Grrrr….Since Kylie is not yet immunized since transplant, admission to the peds floor is not really in her best interest, so we decide to do a round of IV Roceftin then oral Ceftin at home and a second round of IV Roceftin in 48 hours. Well we never made the 48 hours and she was back in the peds office, but this time for debilitating headaches. Shes dizzy, listing, falling to her rt side . He listened to her chest and told be she was wheezing tremendously. We gave her a treatment and it cleared a bit…so back home we go with two more prescriptions…Xoponex and Pulmicort. But this time I’m told its Bronchiolitis, a virus that mimics bronchitis, but does not respond to antibiotics. Grrrrr….
The weekend was great, and we had the Christmas party for the Marty Lyons Foundation on Saturday. (great story about THAT to follow) So, here comes Monday…Ky goes back to school after missing over a full week. Around noon I get a call that she is in the nurses suffering from another brutal headache. Before I get he,r I call the peds and make an appointment. I get Ky and she is just obliterated. Wiped out is an understatement. (I get her home and the phone rings, BACK I go to get Cody who has had a really fickle tummy this week)
This time the ped ays she is really crackling and wheezing still and gives her a treatment but wants a CT of her head ASAP considering her history. (mind you my peds office is a practice with like 20 doctors, every time I am there, it’s a different one!) This doctor suspects asthma or reactive airway disease….she is listless and nearly delirious in my arms from the pain in her head and after a bunch of messing with local spots to do her CT we end up headed to the ER…AGAIN…Back to the ER and we have the chest x-ray that is clear and eventually a head CT. As Kylie just lies there crying and coughing I cant believe everything is coming back normal. We wait to get her admitted for HOURS….All while Ky, who NEVER complains, is just un-consoleable. I keep getting cold cloths for her head and eventually she gets an IV push of Tramadol for the pain. This time the doc comes back with dx of a possible sinus infection (from a clear head CT???) so she is to stay on the Ceftin and oral steroids..(WHAT???NOOOOOOOOOOOOOOOO) for, get this, FUO..Fevers of Unknown Origin…. One of her local hemo’s get on the phone and tells me he’d rather not admit her (again, she is unimmunized) so at midnight, I take the script and leave, scared, frustrated and worried…(and mumbling to myself I am SO NOT filing this script)
**any one who KNOWS Kylie, and her DBA, knows SHE CANNOT TOLERATE STEROIDS. It is tremendously dangerous to her, but since I was leaving the ER knowing I was calling Long Island in the morning , I just took it smiled and said thank you {{for NOTHING!}}
So today, I went to both of Cody’s Holiday Concerts (what a beautiful concert, and Cody played his violin beautifully! I got to go up and thank the entire school and the parents, both times, for all their support these past three years and for their donations to Grateful Giving. Back home, Ky was popping Motrin and generally feeling like ca-ca. (funny word, ca-ca….makes me laugh!) Around 5 I get the call I was waiting for..Long Island. I tell Dr. Lipton the deal and right away I get “she is aspirating” The light in the attic has just gone on, and in the basement, the hall, kitchen, outdoor floods and every light in Toms River has just turned on and are blaring at me in full force. HOLY SMOKES! THAT’S IT!!! Low grade fever, coughing, (still confused about the headache, that’s a new one for her) While I am getting a grip on what he just said, he is going on and on about admitting her to Schneiders and doing a bronchoscopy. Im thinking ITS CHRISTMAS!!!OMG!!! ARGH!!!!!!!!!!!!!! Joe sees my face and he gets the jist of what I am hearing.(note to self, cover head with bag while on phone with LI) Now we both are freaking out. By the end of the call we have a plan. FIRST, before I schlepp up there I am going to get a CHEST CT…well, Ky will have it, I’ll just get it scheduled for her. And I need to get it ASAP. Aspirating is BAAAAAAAD. This may speed up the cleft repair. Let me just tell you how flippin nuts I am feeling right now. My mind is, well….what? Where was I? Oh yeah, see??? I’m in shock. But oddly enough, somewhat relieved. It make sense. I can understand it. IT FITS..too bad it stinks.
Back to Marty Lyons Foundation.
First the big kids told methat when they get their chance to go up and pick toys, they are giving it to grateful Giving….I have awesome kids…THEN Pam, our wish coordinator tells me they ae going to give all the left over toys to GG. Let me tell you that was A LOT OF OF STUFF!!!! As bags and boxes were brought out to the van I was overwhelmed with joy….(Im gona cry again..)
I am just in a panic because I have to get some packages out like YESTERDAY and I just cant figure out that cloning thing. I am really trying though. With Kylie in and out of the hospital and doctors my attention to GG has been lax..But that will all change TODAY!!! Hilary, our super co-ed from Loyola is coming to town. Well, she was due on Tuesday but I had to cancel, then we were back on, and even though what we are doing with Kylie is still up in the air, shes on her way! Glutton for punishment, that one!
Knowing Hil, our butts will be in the basement making packages and mailing them out before lunch.
As I wait for 9am to call her hemo here in NJ for the CT, my stomach does flips and flops. I want to cry. For everyone. For Ky, who deserves SO BADLY a little peace in her life. For Joe who in is full on panic mode. From re-newing our Family Leave Act to how we will be able to manage if Ky needs to go to LI again. The kids are feeling neglected, we never got our tree decorated yet, I keep canceling gingerbread decorating night and not a single Christmas cookie has come out of my oven. These are all traditions that we do every year. They are what make the holiday bright around here. Usually I have TWO trees and decorations up the whoo-haa….its seems very un-festive around here. Grrr…sorry to complain, Im just frazzled. I cannot forget the families dealing with, BY FAR, much more tragic holidays right now….
Gosh, I am downright embarrassed for whining….
9am, time to call the doc, wish us luck,
LOVE TO ALL
OK...I'm back. Tomorrow morning, 5am, Kylie Hilary and I will be on the road to Schneiders. Kylie will be admitted. MRI's CT of lungs, bronchoscopy..(remember the bronch from hell in Feb??)This may speed up the cleft repair SIGNIFIGANTLY.....This sucks...
I hope Ronald Mc Donald house will give us 2 rooms for Christmas eve....If we can't be with her on Christmas eve and day my heart will never recover... please just pray for her and tomorrows "festivities". I have a little inside info on tomorrow though, seems Santa is stopping by LIJ tomorrow...shhhhhhh....
Wednesday, December 13, 2006
If Kylie having pneumonia has got us bummed, then this sure made up for it...
(pardon the weird edit job, it was done on the fly, I will make a nice one tonight!)
Here is Hil's e-mail I just opened this morning (I suspect I missed her call yesterday while I was at the pharmacy trying to get Kys oral Ceftin script filled...Monica luck strikes again. When she needs Ceftin they are all out and waiting on an order.)
"It's official...24 inpatient teenagers at Hopkins will be receiving Christmas packages this year courtesy of Grateful Giving and some very caring, compassionate Loyola students. I watched 24 bins of goodies plus one Playstation 2 (donated by a student and her family) get wheeled into the Children's Center in three red wagons this afternoon. The final delivery was made by myself and 16 others, wearing orange bracelets early this afternoon - took three vans to get us all there! The donation coordinator of Child Life (which is, for such a large hospital that takes on such high risk procedures in kids, a shockingly small department) gave heartfelt thanks to all of our "elves" who came along for the dropoff and said that she was moved by the genorousity. She gave me a hug, called me a "sweetheart" (lol), and gladly accepted all of the GG info - she's waiting for me to call in January as I start up GG here as a campus-wide organization...I get the feeling that our support is certainly needed there! Plus, I still have more Baltimore-area hospitals to call, and I already have one speaking engagement lined up for another residence hall whose RA is a friend of mine, heard through the grapevine about what we were doing, and was "incredibly moved" by it all. So, come January/February, I will be taking the show on the road once again and introducing Kylie's story...to the two floors of a freshman residence hall housing 63 guys! Plus, the interest from other RAs grows by the day, and my list of other GG members is ever-increasing. Today marked the culmination of the start of big things to come. Be proud of Ky, your crew, and yourself...you have all inspired others to pay it forward in a big way! And give extra hugs to Squirt for me and send her all my love to help her heal. Love you all!"
Gotta go, can't find tissues and my eyes and nose are leaking all over!
Monday, December 11, 2006 9:59 AM CST
**UPDATE**
Ky has pneumonia. We spent the night in the hospital getting IV Roceftin. iIt lasts 48 hours and we go back in 2 days for more. Since she is not immunized still the LAST place she should be is the peds floor. Grrrr.... we had to cancel Kathy and Maddie coming to make packages...we'll re-schedule! ASAP
This weekend we were busy making packages for the six kids up at Schneiders. We were supposed to bring them to the Christmas party on sunday but Kylie is actually very sick right now. In fact we are going BACK to the pediatritian today at 1:30. She has a terribly high fever and a uncontrollable cough. She is having bad headaches too and spent last night in our bed with a cool washcloth on her head. Poor kid. Well mail out the 6 packages with the 5 we are making today. A friend of ours, Kathy, and her daughter, Maddie, have volunteered to come over and help us today. The kids are very excited. Here are some pictures from Saturdays festivities...
Cool Slideshows
Please let us know if you know of any families with a child going thru a bone marrow transplant right now.
Help us help them!
Tuesday, December 5, 2006 5:38 PM CST
Today I had a great day. Why do you ask? Did Ed McMahon come to my door with balloons and a ginormous check for a bazillion dollars? noooooooooooooo Did Josh Groban appear at our doorstep and give Kylie a private concert? noooooooooooooo Did my doctor give me the "medically necessary tummy tuck" that I requested during surgery? heck nooooooooooooooooo OK, hows this?? Did all my kids sit around the dinner table and poiltely eat their dinner while smiling, laughing and kindly sharing joyful stories about their day only to go directly upstairs to clean their rooms, take showers and tubbies then put themselves to bed after reading stories and saying prayers while Joe and I lounged on the couch drinking Stuarts rootbeers in frosty mugs while watching the entire last season of "House" on our new 500 inch plasma flat screen tv?
That is soooooooo a HUGE noooooooooooo!
Today was actually better than anythign like that. Today I went to Cedar Grove and picked up boxes and boxes and boxes of donations for carepackages for Grateful Giving!
Thanks to Tyler Lees teacher, Mrs. Strevens and the guidance counselor, Ms. DiNardo and the Cedar Grove students, dozens of critically ill children will be recieveing awesome care packages this Christmastime!
I had tears in my eyes as I picked up the items today. Joe the kids and I carried all the boxes downstairs to our little "headquarters" in the basement. We have a whole little assembly line system set up, tables for organizing, wiping, packing, labeling. There are scissors, tape, wrapping paper,boxes, GG printouts, pictures, shelves for storage. It is sooooo awesome! I will take pictures of the kids working on GG and post them ASAP.
The song "Believe" is so particularly fitting this season. We believed and here we are!
If anyone knows someone who could use a Grateful Giving care package please contact us at gratefulgiving@aol.com
We have so much to share, we just need the kids to share it with!
Wednesday, November 29, 2006 1:36 PM CST
Well folks, Christmas time is here. Anyone done shopping yet??? Hahahaha.... Just kidding! Think you are going to get everythign on your list??
I know somethign you WON'T get!
Tickle Me Elmo Extreem 10th anniversary edition
He rocks, he rolls, he falls on the floor!!!
And The Cure Kylie Foundation had been given one to raffle off for Grateful Giving.
The raffle will be done local but I am offering my web-family an opportunity to participate. The tickets will be for one dollar each. If you want to buy one let me know! I will set aside the amount of tickets you want aside and give you the #'s on the tickets. When the funds are recieved the tickets will be placed in the "pot" with all the tickets to be drawn from and I will send you your portion of the ticket! Easy as pie!
All checks payable to
THE CURE KYLIE FOUNDATION
place "Grateful Giving Elmo Raffle Tax ID #76-0781768" in the memo for tax purposes.
mail to:
833 Somerset Dr
Toms River NJ
08753
all checks will be FOR DEPOSIT ONLY into The Cure Kylie Fund
We will draw the winning ticket Monday December 18th to ensure time for shipping before Christmas if the winner is out of state!
Friday, November 24, 2006 11:23 AM CST
Happy Thanksgiving All! A wonderful day was had over here at Casa De Crazy! Breakfast this morning was turkey turkey turkey! And mashed potatoes. Cant forget those.
I just read an article about the Oprah "Pay It Forward" show. HOW COOL WAS THAT??? I literally had tears in my eyes seeing a big celebrity embrace the concept that we have been living by for so long! I hope that sites like Kylies page and people like Oprah encourage you all to perform some "grateful giving", by "paying it forward" with "random acts of kindness!" Monday will show the follow up on what some of her studio audience did with the $1,000.00 gift cards each of them were given to give to others. I never watch Oprah but I certinly will check out this one.
I promise you, the high you get from "giving" is exponentially more than the one you get from "getting".
Even little things, like picking up something someone dropped, holding a door.Offering to rake a neighbors leaves, take out their garbage...then of course there are the big things, like ahem, making donations to orginzations like Grateful Giving. Donations include monetary ones to help us with packaging and shipping costs, as well as items to send in the care packages, gift cards so that we can get specific items requested, needed or from experience we know are perfect or even volunteering to take prepared packages and mailing them. Or even you can start your own branch of GG like our Loyola College crew headed by Hilary! They supply the 24 bed unit at John Hopking University! How completely awesome is THAT?
We are still working on our GratefulGiving.net, we will let you know as soon as it is up and running!
But for now,ere are some ways of getting a hold of us for Grateful Giving.
Grateful Giving MySpace page
Grateful Giving at Loyola College
our e-mail for Grateful Giving is GratefulGiving@aol.com
Collections are currently being run by:
Cedar Grove Elementary School, Toms River NJ
Our Lady of Perpetual Health, Seaside NJ
we are workign with other schools and organizations in the Ocean County area to spread the mission of Grateful Giving.
So, as the holiday season approaches consider helping us reach sick kids, away from home at the worst possible time! The first time Kylie went to transplant is was the week before Christmas. She had no Christmas tree with all its trimmings, no brothers and sisters with her to whisper Christmas secrets to by the fireplace, no Holiday parties, Christmas shopping or cookies and milk. She was home by Christmas Eve because of the chemo reaction but that week was horrific. I can't imaging the kids in the hospital for the entire Holiday Season. So, open your hearts, think of the kids and their loved ones struggling with these Holidays and help us, help them have a little brighter Christmas/Haunukkah/Kwanza and New Year.
Blessings all!
Here is to a cheerful, hopeful and thankful holiday season!
I would like to share with you all the e-mail I sent Thanksgiving Night to as many people as I could check off in my address book without getting hit for spamming!
Happy Thanksgiving Dear Friends!
Today was the culmination of yet another year the be thankful for! This year brought us an official and documented cure for our Hero, Kylie Jae. The birth of our foundation Grateful Giving. The miraculous survival of Ryan, who despite being hit by a car, suffered only a broken leg and concussion and shows no signs of the traumatic experience, physical or mental. (although the same cannot be said for Joe and I- the nightmares and gray hairs are with us for life!) Not to mention the spiritual growth our family has experienced. For the past
few years it almost felt like when we asked the Lord for some bread all we got were rocks. But we stayed strong and continued to "praise Him in this storm" and our faithfulness has really paid off. Our family is closer, our marriage is stronger and our life in more complete! Who could ask for more? We were blessed with our Camp Sunshine experience and anxiously await 2008 when we can go see our extended families again. Joe is succeeding beautifully in school all while he juggles this wacky family and work. And if you think all that pressure would affect his work? HECK NO, just this week we was voted "Employee of the Month" for the ENTIRE hospital! Not department, not floor, the ENTIRE HOSPITAL!!! That's nearly 2,000
people! He is now in a pool for employee of the quarter which leads to employee of the year!(last year he nominated employee of the month FOUR TIMES, employee of the quarter and was one of 2 running for employee of the year! He was beat out by the top cardiac surgeon for the East Coast!LOL)
The kids blossomed this year academically! TJ, Cody and Tyler Lee all got nothing but A's and B's (well, S's,G's and O's~TJ just has a little issue with math that we are working on, but I admit my part in that genetic flaw!) TJ has joined football, gardening club and Yearbook/Media club and he submitted a drawing for consideration to be in the Omni Art club and was ACCEPTED! (ahem, that was a GOOD genetic trait he got from moi!) Cody has joined football as well, and this year he decided to try the violin. Yup, the violin. And guess what? HE IS AMAZING! We are so proud! Tyler Lee reads books like crazy and grows more beautiful by the day. Kylie, Ryan and Jordie spread their smiles all about school. Kasey and Charlie are eating their pre-school out of house and home! And Sprout. We can't forget Sprout! She has brought a little pep into Skippy's life and a lot of snuggles into ours!
There were tons of amazing things that we did this year, amazing people that we met, and amazing experiences we will never forget. We laughed, we cried, we shot milk from our noses. But mostly we loved. Every second of it.
No words I could ever write could appropriately express how truly blessed we are.
Thank you for being a part of our journey, for everyone we love is what we mostly thank God for. Happy Thanksgiving!
We love you!
Joe, Heather and the kids!
Wednesday, November 22, 2006 9:31 AM CST
My thanks to Hil, my “sistah from another mistah”. We are anxiously waiting for you to tryout y our new room!
Well, I’m back. And if I do say so myself, I can honestly commiserate with the turkeys we will all be annihilating tomorrow. I was knocked out, cut open and gutted. That’s where the comparison ends, but still close enough! Thankfully my doctor felt no need to pluck my feathers. But remember my waxing story? And how blessed I was that I tried (and succeeded in) skinning my arm rather that trying my first shot at waxing on my “Who-ha”? Well, while lying on my doctors table yesterday, blissfully un-aware of the impending pain, sweetly chatting about Thanksgiving and all the trimmings I learned the truth about waxing. THE REAL TRUTH. If I saw stars when I did my arm, then yesterday I saw the entire universe! What is she talking about? Steri-strips folks…the medical field’s version of hot waxing strips. I had about 10 inches of steri-strips and staples removed from my belly. I just now realize that I actually never revealed the nature of my surgery. Well, I actually got to do what I always joke about....feed my uterus to the dogs!!! Yup, that part of my body that has been leased and sub-leased 8 times over got scheduled for the wrecking ball....No "eminent domain" going on here, nothing new going in its place, its just like the Yankees this season..going...going..GONE... I am actually kinda conflicted about it...not that I CAN use it again...Elvis has SO left THAT building...but still....Oh, who the hell am I kidding??? I'm throwing a par-taaayyyy!!! Bonjour! Bon Soir! Bon Appetite les petite cheines! (Good bye, good night, good eating little doggies!!!) {{under NO circumstances do I believe that my french is accurate AT ALL, so, no need to correct me! I know it's wrong!!LOL}} It was a mess in there! To add mischief to mayhem, the masses and cysts and fibroids were SO HUGE they were pressing on my spine and herniating disks in my back. (well, we hope that is what is doing it, or else I’m headed for back surgery!) In the past two years I Went from just a little pressure in my S4-5 (low back pain) to last week, having herniations from T12 thru my entire Sacral and Lumbar region. Not cool for a 34 year old Mamma of 8 kids under 10. Ahhh genetics! Gotta love em!
But I digress, back to the table -yesterday at about 4pm. Did anyone notice a vibration in the earths surface? Anyone notice dogs all around just stopping and looking East? Unusually high waves? Possible shattering glass? Well that was me. The strips were ripped from my jelly belly and along with it went everything else. (ahhhhhhKELLY CLARKSON!) OMG. Why??? Who do people PAY to have that done to them? They must be making up for evils done in past lives. Were talking Hitler, Genghis Kahn, Jeffery Dahlmer kind of evil. Because THAT is AL LOT of pain!
Well, I have to run. I have been unable to write since my laptop crashed again and this home PC is sooo old I need to shovel coal in the tower to power it. I will catch up soon, and I have so much more fun stuff in my head to tell everyone. Definitely some funny Monica Moments to share.
I have a few heartfelt, emotional subjects I want to cover as well from the massive response to Grateful Giving to my tremendous appreciation for Joes ability to juggle me and my surgery, the kids and their endless needs, work AND nursing school. I just really need my laptop to type it all up from the couch or bed with keys the don’t stick and a space bar that doesn’t travel 6 inches each time!
Monday, November 13, 2006 7:16 PM CST
Hi everybody,
It's Hilary on update duty for tonight. Heather has given me the task of keeping you all informed while she is recovering. She sets a high standard for awesome updates, but I'll do my best to rise to the occasion here.
:-) For all those who sent prayers and good thoughts for Heather's surgery today, THANK YOU!!! Everything went smoothly and according to plan; Heather is currently recovering nicely in the hospital and Joe is back home for the night with the kiddos. If recovery continues to go well, she should be out of the hospital and resting under her own roof either Tuesday afternoon or sometime Wednesday...not bad after major surgery! If you could, please continue to keep the family in your prayers in the days ahead. I know how much they appreciate them.
Love to all,
Hilary
P.S. In case you are already missing Heather's writing and have yet to check out her latest and greatest take on a "Monica Moment", head on over to the journal history for "The Snip 'N Snore Bandit"...now also known, thanks to Monica super-supporter Mrs. Pam, as "Charlie Scissorhands!" Enjoy everyone!
Wednesday, November 8, 2006 2:18 PM CST
Please continue praying for Kathy and Maddie!
Thank you to all who wished me a happy birthday, sent me an e-card, and remembered me on my b-day. It was awesome.
Thank you also for the well wishes for my upcoming surgery. Pam from the Marty Lyons Foundation sent me a nice ginormous block of chocolate to help soothe my stresses!
THe MLF to the rescue AGAIN!!!
Quite suprisingly my surgery has been re-scheduled for Monday the 13th at Community Medical Center. Sooner than planned, but it all will work out. I got a call from my ortho re. my back scans and {{shivers}} its not too cool. We will do this surg and then see how it affects my back. THe plan is it will stop putting all that pressure on my spine and stave off further herniations.
Ky is great and its odd to not have much to say about her, but when things come up, Ill let you know. Never got her scope scheduled like they were going to do....Grrrrr....
I know you all love to hear aboutt he interesting things that happend 'round the Monica house, well, here is a little somethign I came up with the other day...
The Snip n' Snore Bandit. An article about a boy, a pair of scissors and the truth. By H. Monica
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 head, 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, they have just revealed that evidence had been discovered under the bed sheets of one Charlie Monica. My source tells me that scissors with stray hair, still attached, matching those of the victims have 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 seem 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 pattern of progression, 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 gave 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 is learning that the truth will set you free!
Monday, November 6, 2006 6:49 PM CST
I come to you this evening to request prayers for my dear, dear friend Kathy. You remember the Kick A Thon? RBC Spanish Club? Master Coyne and Ma'am Trish and then there's Sam. The girl who comes bearing gifts of chocolate cake? Well, all those things were ONLY possible because of Kathy. Kathy works with my Dad. Kathy LOOOOVES Squirt. Kathy thinkg I'm funny. Kathy is a dear friend to whom I have poured my heart out to. Kathy is where Jordyn, Kasey and Kylie got the kitchen set in their bedroom from. Life centers around play (and real) kitchens in this house. I owe Kathy major for the HOURS of peace and quiet and tons of giggles that kitchen has actually brought me. But today Kathy is greiving. Sadly on Sunday her boyfrienmd Joe was killed in a single car crash on the Garden State Parkway. Kathy and her daughter Maddie loved Joe grately and they are suffering deeply today. And will for quite some time.
Please pray that they find peace in their hearts and minds, that help them see, that despite the pain and suffering they are feelign right now, Joseph is whole, happy, and fulfilled in the glory of Gods presence. Lets pray that they find wisdom in their grief, light beyond the darkness.
I know my friends will lift Kathy and Maddie up in prayer and deliver them into the infinately comforting hands of our heavenly Father.
Thank you all so much....
Friday, November 3, 2006 1:28 PM CST
Hope yall like the new pics and new tune. Pats cool but the opening riff is a litle "shocking" when you open the page. This one is nice. As a matter of fact a personal favorite.
Playing on my iPod as I type. Mark Cohen and I go waaaay back. He was the artist who performed my wedding song "True Companion". I was completely shocked when 90% of the people at me wedding were like, what song was THAT? Hmph, their loss....As a matter of fact I can only attribute my "CB favorite song of all times" Lullabye for a Stormy Night by Vienna Teng to him, as she was the artist who opened for him when I was him two years ago at Monmouth University. It was there I bought her album and thuroughly became addicted ever since. ( I have even got a few of you all hooked too.)
Kylie continues to progress in school beautifully. Math completely escapes her. She tries soooo hard. Waiting to hear from LI about the palate surgeon. I myself am completely procrastinating all my necessary preparations before surgery. Although I have already started my "list" for Joe of all the things I will NEED for recovery. Chocolate (specific bag indicated st grocery last night!)
Ice cream (Cherry Garcia, of course) watermelon, cantalope and strawberries for light nibbling. movie requests from BlockBusters (all the Santa Clause's to prepare for the new one)Too bad the new Starbucks at the OC mall wont be open yet. But I bet as soon as it is I will be zipping over in my flannel pants and Uggs often. I miss it SOOOOO bad. I had one at my disposal a mile from my home in Rumson. Shoot, the "baristas" knew my kids names. Since moving here, I can only scam one on our trips to B-more on 195.
For years I slung coffee and roasted beans and even made Turkish coffee (jessss, I made sludge...I thought it would be a nice change! gosh, I love The Birdcage) I am definately someone who loves coffee. Chocolate covered espresso beans..ever had those? If coffee and hot chocolate are the nectars of the gods that those are the seeds of the fruit of the nectar! Met those yummy treats in my late teens...ahhhh....Sorry, just remembering for a moment. Funny how a smell, an image, a song can bring you RIGHT to a place, moment, time in your past. Like you are actually there. But it happens when you least expect it.
Gotta skedaddle, rats are pouring in my front door.
Tuesday, October 31, 2006 11:35 AM CST
Happy
Halloween
All Guys and Ghouls!!!
Word on the street is I am a photo slacker. To be honest I NEVER stop taking them, it a just MAJOR PIA to upload each one, cut copy paste the link to each photo, so on and so forth... SOOOOOOO I figured a way to make a "flipbook" on my photo editing program then searches the internet for a hosting site that couls host a .gif.
Sooooooo, here we are!!! A little compilation from August to yesterday!
We trick or treated yesterday here in "Bob's" River (for all my Canadian buddies)and yes, I COMPLETELY mortified my children and drove them to school dressed as Mike Myers, mask and all. (no pictures availaible of THAT) As a family we all went after school. Joe and I were autopsie technicians. Next year we have big plans that include a gurney, fake blood and some skirt steaks!
Kylie tired very quickly and soon her Pterydactyl was perched on Daddies shoulders. I quickly became the "bag" lady and was weighed down by multiple candy bags. (but that means i had free pickins of the goodies) Somehow we ended up with our 8, and four more. IT WAS NUTS!!! Joe and I were like cattle herders. He was up front, I kept up the rear. Could have really used that taser on a stick I wanted at Disney last night. The dark, the lights, the costumes, th pure sugar buzz coursing thru their veins...We completely terrorized the neighborhood. This was Charlies real first "memorable" time "candy pickin", as he calls it. He was just in awe. "MOOOOOMMMM!!! They are just GIVIN' me CANDY!!! And I dont have to do nothin' for it!"So, after a few hours we stumbled and buzzed home, jammies and directly passed out (in a bag of Cheetoes).
Thursday, October 26, 2006 2:04 PM CDT
In addition to celebrating with me, my awesome parents, Hilary, my "too old to be my daughter (WAAAYY TOO OLD) to young to be my sister (according to opinion only)" has brought to my attention this COMPLETELY PERFECT SONG FOR KYLIE JAE!!!
I am soooo not believing this song from 1980...how perfect it would describe my second of four girls, fourth of 8 kids, 6th of 10 total, daughters life story when I was only, ahem....8...ok..9. Ill be 34 on Tuesday. Ya got me. Rock out while reading about my 'rents who rock!
I emphatically give permission to EVERYONE out there to cut copy paste, tweak and adjust this note to give to their parents.
Everyone needs ot know about my mom and dad....here is a letter I wrote to them today.
Dear Mom and Dad,
A few things have become very obvious to me as of late. 1- These last few years have been a bit of a mess. 2- That last line was severely underestimated. And 3 -Despite all of it, I have survived and come out as an even better person than I was going into it all.
Kylies foundation is really taking off. From our entire school district to the Ocean County chapter of Girl Scouts. Heck, I have a COLLEGE that has acknowledged us as one of the charitable organization they participate with. Because of it, I have been in the public eye even more that I would have even imagined. Talking to organizations, addressing classes, recruiting more and more members. The people I meet are amazed by Kylie, our family, Joe and I. Our “story” is shared far and wide and I receive correspondences from strangers even, who write to us telling us how they want to have lots of kids like us, some who chose to have more because of us, and others who have changed their views on parenting to reflect our “style”. People tell me constantly how amazing I am. What a wonderful Mom. And mostly I get compliments on my ability to see humor in it all. Most if the time I blush and pooh-pooh it all, change the subject. Shyly thank them and talk about anything else.
When I get asked “ How do you do it all?” I say “I get a lot of help from him (I point to Joe) and Him (I point up)” That usually covers it all. But today I had a bit of an epiphany.
While in Long Island on Monday I learned Nancy, my transplant social worker, was out mourning the death of her father. Nancy is like my long lost Jewish yenta. Since Kylies birth I have had Social Workers galore and hated each one. Nancy, on the other hand, I wish she was my neighbor. (although I suspect the is THRILLED we are not!!)
I was sending her a note today expressing my heartfelt sorrow for her loss and commented on how I could only imagine what a great guy her Dad was. Although I only know her, what an amazing person SHE is reflects infinitely on her parents character.
That was when it hit me. When all these people comment on my character (which I will be the first to admit it tremendously flawed!) I am unintentionally forgetting where I got my character from.
All the things that make me, me- are from both of you.
So, thank you. For starting me off right. Setting the basis for the person I grew into today. For giving me the traits that have somehow come together to manage this complicated, busy, sometimes sad, usually hysterical, never quiet, life I lead. For giving me the heart and spirit to fight Kylies disease relentlessly until she was blessed with a cure. For the compassion to take my experiences and help others. The brains to be able to understand, manage, and prioritize all the challenges I face daily.
I have commented before that I was blessed to have been given birth to a hero, but its no surprise since I was birthed by two heroes.
Thank you…I love you.
Love ,
Heather
p.s. I am posting this to Kylie's page,everyone should know what amazing parents I feel I have.
Saturday, October 21, 2006 7:39 PM CDT
Just got back from Long Island...Kylie is engrfted 98
I can saye CURED CURED CURED!!!!!!!
Phhhhhtttttttttttttttttt! (big raspberry to DBA)
Sadly, her studies for her palate were positive for Sleep Apnea :-(
Kylie NEEDS to have her cleft repaired... WE are planning on having it done at Montifiore/Albert Einstein. It is in the Bronx, I believe. Not sure, I'll know soon, more details.
Ky needs to go back to LI before I have surgery for a scope of her small and large intestines. Shes not absorbing her food...
SHE CAN GET IMMUNIZED!! WooHoo!!!
The day started off with a blast,literally. Ryan coughs and coughs till he pukes....over the side of his top bunk, onto CHarlie, at 5:30 am..grrrrrr.....I give Bubba a breathing treatment, a little ches PT, poor guy's tight, bad asthma year...and from there in the trip continues to involved mass quantities of .....PUKE....5 miles into the trip...splaaaaattttt...Kasey is hurling again...Jordie cant stand the smell....hurrrrrllllll....Tyler starts gagging, TJ, soon Im near tears trying to get to the reststop...Mae powers in the hallway at Schneiders blaaaaaaahhhhh...(I swear it was the 30 Slim Jims she ate yesterday)Hurls so hard she poops her pants...OMG!!!!
This day just gets better...skip more fun stuff, we walk to the van, Ryan gets in, smells the stagnant puke lingering from the morning and heaaaaaaaaaaaaaaave...there goes Bubba....Shoot me now...
All righty then....busy busy few days, most of it involved kids puking on me and TWO, count em' TWO trips to the ER...grrrrrrrr
First off Kasey Mae sits next to me on the couch complaining fo a "tomach" ache, any of you that have been with us from the beginning may rememeber Kasey Mae as the perpetually nervous, Bunny clutching, thumb sucking, tummy aching Monica. So, I continue to work on the laptop(desiging a logo for GG) while I run through our routine of laying down next to me, showing me the general vicinity of the owie so that I can confirm that there is no aliens evolving beneath her chubby white skin, to which then I kiss, rub and make it all better with a promise of chocolate milk for any non aching bellies....well let me just say that she lit it rip, I swear there was a geyser of ginormous proportions emenating from little Miss Mae...faster than a ninja chipmunk on IV espresso I slammed the laptop shut and somehow managed to literally THROW it across the room without shattering it, while simultaneously sitting her up, grabbing a towel from the CLEAN laundry basket next to me as I kick it away from the line of fire with my free leg while scooting her off the "new" to us but hand-me-down couch we just procured this past weekend. I call that move "the vomit catching, laptop throwing, couch saving pelican". AS Kasey continues to vomit everythign she had eaten since 8am,(to which she was reminded by the contents of her puke that it was peaches she had with lunch at school and couldent remember what it was when she was giving me her daily run-down earlier) Charlie innocently strolls into the living room and catches a glimpse of the festivities. Well, lets just say that Charlie will never be in the delivery room with his wife...Little Boo was still walking into the room, barely having prossessed the scene and he was hurling his Elios' Pizza on the OTHER couch....In true "Matrix" form I bend over backwards in slow motion, reach blindly for a towel in the basket, whip it over onto the couch while catching another wave of Kasey chunks with my Jack Skellington slippered foot. Grrrrrrr..... As soon as the waves of nausea have passed I plop them both into the kitchen sink, scrub off the goo and put two tired but squeaky clesn kiddos to bed...The rest all instinctively follow, quiet but snickerimg amongst themselves at the sheer hilarity of the puke-a-palooza. I kiss them all, ask them to say prayers on their own and proceed downstairs to face the music. As I look at the chaos I am in awe of how a quiet evening watcing tv with a room full of jammied kiddos can turn into such carnage, and I laugh my butt off....I am even grinnign as I type this.
The next day TJ laughs in school which throws him into a full blown asthma attack, two treatments in school and no relief and we are headed over to the pediatritians. Two more treatments and we are headed to the ER, but first I have to got BACK to school to pick up the kids. Its 20 mins till dismissal and Joe is unavailaible. And I mean UNAVAILABLE...One of his mid-term exams for this semester in nursing school is starting at a campus almost 40 miles away. OMG!!! So there we all are piling into the local ER...
Thankfully I had grabbed my ever faithful laptop and a stack of DVDs between school and the hospital. The kids were terrific, TJ kept getting worse, and the staff at Community were amazing. They let all the kids back with me. TJ had a private room, directly across from the palyroom. The kids watched Nightmare Before Christmas and colored while TJ was pumped full of steroids, albuterol and pulmicort. He had chest x-rays, chest PT, and a lot of prayers by Mommy. Soon Daddy arrived and no one wanted to go home!!! The kids went home with Joe and TJ and I hung out. Later that evening the ER Doc said they would admit him if I was not comfortable bringing him home(he knows me very well by now and knows what I am capable of managing at home). He was still wheezing bad but I felt confindent he would be safe at home, not to mention the hospital is less than two miles from our house should things go south!
I get Tigger home after waiting 2 HOURS in the pharmacy, load him up with more roids, another treatment and I tuck my steroid soaked, jittering, twitching, wheezing big boy into bed. I get into bed, put my head on Joes shoulder and the next thing I know its 8:30 am and Sprout it sleeping on my head, and tooting...eww.... good morning! We have breakfast, do laundry, clean and swiffer. Lunch, more cleaning then we load the van to go and get treats for five care packages of Hope headed to Long Island Monday morning. Jordie comes in howling in pain...its her ear...she has a q-tip in her hand...oh crap! Turns out she was only picking it up to throw away, Ryan had it and threw it on the floor...shes crying so much SHE pukes... I call the peds...office closed. I look at the clock. We missed them by FIVE MINUTES! Darnit!!! So, everyone piles OUT of the van and I take Jordie to the ER....Same triage nurse...same intake rep...SAME ROOM!!!!
this time we are in and out.Another wonderful experience, great staff, swife care... Inner ear infection, and raging...poor little Shapoopie...Antibiotic script means back to the pharmacy. Same pharmacist even...IS THIS MY LIFE???? I guess I'm just getting familiarized with the hospital I will up close and personal with Nov 15th. Then its MY turn to be a patient. I wonder how good I'll be?
Oh, yeah...by the way, I'm having surgery. Kinds never mentioned it before. A pretty big one too so a few shout outs to the Big Guy for me would be appreciated!
Gotta go! Making tomorrows lesson plan for Faith Formation and wathcing "Click!" (and a little glass of wine, its been a rough few days around here!)
Love yall!
Ill post new pictures ASAP...
Tuesday, October 17, 2006 10:09 AM CDT
Well, as promised I will include the narrative on Kylie that I discussed earlier…Emmy was one of the “yellow shirts” as the kids called them. She and her Mom volunteered during our week at camp. Emmy sent me pictures, but I lost them in the laptop crash, but I was smart enough to save the story to disk the day she sent it to me! Three snaps up in Z formation for me!! I was very awe struck by her story. She gets it….she really GETS what Kylie is. A miracle. An old soul in a kids body. A perfect example of never judge a book by its cover. But with a twist. Her smile belies a life fraught with “close calls”. Her HUGE personality cannot be imagined by looking at her frail, minute frame. Her spirit is one that has only grown through her tragedies, not been defeated.
As I shared with a friend by e-mail last night and my Dad today, I am the luckiest woman to have given birth to her hero. Not many people can claim that. Except maybe Superman’s Mom.
Sunshine by Emmy Barcelo
At home with an abundance of homework, my mouse is constantly drawn to the
Mozilla Firefox icon in the start bar on my computer. I am constantly
checking CaringBridge, the website of Kylie Jae Monica or as her mom calls
her, Kiddo Extraordinaire. For hours daily, I find myself reading Kylie’s
mom journal, crying until there are no more tears. The daily struggles she
has endured during her seven years of life is what really upsets me. Kylie
is someone who instantly places herself into people’s hearts without
trying. She has made an impact on so many people’s lives, including my
own.
*****
After enjoying a carefree summer at home, Margaret, my mom and I are
packed and ready to embark at 6:30am on the four-hour journey to Casco,
Maine. We are going to Camp Sunshine, a camp for children with
terminal/chronic illnesses. Unenthusiastically, we leave, selfishly
wanting to remain at home while in the back of our minds we know we are
off to “better the world.”
In the car, I am embarrassed to say that I am not even certain of the name
of the disease the camp will be specializing in this weekend. My mom
explains to me that it is called Diamond-Blackfan Anemia.
Diamond-Blackfan Anemia, a rare blood disorder which affects 1000 people
worldwide, is a bone marrow disease and requires regular blood
transfusions. This may not sound like the worst disease, but we will come
to learn that families affected by this disease struggle mightily.
During orientation, we listen to the stories of the children we will soon
meet. Margaret and I are assigned to the 6-8 year olds. Our leader, Evan,
announces, “Hmm this is interesting, it seems as if we have 2 sets of
twins.” He pauses “from the same family.” Everyone looks at each other in
disbelief. He says their names are Tyler, Kylie, Ryan, and Jordan Monica.
At the meet-and-greet after the orientation, a huge green van with eight
heads peering out arrives. All of the children are beautiful. One of the
volunteers says, “Wow, you must be the Monica’s.” The mother gives a sort
of devious smile and replies, “Are we that obvious?” All of the kids run
wild as if they have just landed on a different planet. I wonder who is
going to be in our group. It turns out that there were no twins in this
family. The ages are three, four, five, six, seven, eight, nine and ten.
The next day, the kids arrive anxious to start the day. It is evident that
many have never been to summer camp before. The faces that caught my
attention that morning are of five specific children. Cameron and Cade,
two crazy brothers with thick southern accents, are the first kids I
notice. Then I see three children who all belong to the Monica family,
Kylie, Ryan and Tyler. I notice them because due to mixed up paper work
Kylie, the child affected by Diamond-Blackfan Anemia, is not permitted in
the pool. Tyler and Ryan immediately take her hand and ask if there is
anything else they can do instead. I take the three children golfing. To
see the support they give to their sister to make her feel comfortable and
loved is unreal.
When the paperwork is finally cleared up, Kylie is allowed in the pool.
She changes quickly and runs towards the pool. I notice a bump in her
swimsuit. I ask her sister if there was anything in there and I was
informed it is just her “tubie.” I did not ask any more questions. When
Kylie asks me to take her to the bathroom, I saw a tube coming out of her
body. I look at it and quickly look away. Kylie caught me. She smiled and
says, “That’s just my tubie.” She has this innocent little squeaky voice.
She then takes my hand, giggles, and tells me to take her back to the
pool. That is when I became instantly attached to her.
I found myself following her around the entire week. She takes my hand
occasionally but I end up taking her hand more often. One day, I remember
she put her tiny hand on mine and I notice that on one hand she has only four fingers.
That same day Kylie notices a camper named William who has a scar down his
chest. She asks if he had a bone marrow transplant then proceeds to show
him her matching scar. The fact that a seven year old is talking to
another seven year old about a bone marrow transplant with so much ease is
so unreal to me. To see a seven-year-old go through this is unbelievable.
I feel that there is no comparison to this girl partly because of her
experiences but mainly because of her character.
On the last night, the camp plays a slideshow of the week and everyone
sings sentimental songs. I look around and cannot find any person without
tears in their eyes. Kylie takes me to the computers so she could play
games. While I am enjoying our last night together, I learn that there is
a webpage dedicated to her. I go to the webpage for the first time that
night. I start reading it and can barely make it past the first few
statements.
“Kylie was severely affected by [Diamond-Blackfan Anemia] and was born
with multiple birth defects including an ASD (heart defect), a cleft
palate, a missing thumb, and multiple internal problems (too numerous to
list).”
My heart sank the moment I read this; tears are welling in my eyes. I do
not want Kylie to see me cry over her. She has seen too much sadness in
her life and I do not want to turn a week of elation into something else,
so I turn off the computer. That night turns into a long one; I stay up
all night on Margaret’s sidekick reading the journal Kylie’s mom wrote.
On the last day, I thought I was going to be in a rush to get home.
Margaret is ready to leave but I feel uneasy. I know I would regret not
saying goodbye. I go to breakfast for the first time that week. I wait for
a half an hour. Margaret wants to leave but I need to say goodbye to
Kylie. When the Monica family comes in, I want to run and give Kylie a hug
and wish her luck in the rest of her life. Instead, she comes to me, she
wishes me good luck on my drive home and she “hopes I stay safe.” That is
Kylie, caring, sweet, and loving. I cannot hold back my tears anymore and
one rolls down my cheek. She wipes it and says, “I’ll miss you too.”
With that I am off on my four hour journey home, left to reflect on the
week and the girl which has change me forever. At home that night I read
about the failed bone marrow transplant, the year in hospital, the missed
birthdays at home, the pain it has caused her mom and family and most
importantly herself.
I find myself checking her website daily. The impact Kylie and her family
made in my life is something I cannot get out of my mind. I wish that
Kylie was still in my life but the five days I had with her made me a
better person. As that week becomes ancient history, the faces become
blurry and the memory of her voice becomes lost, her story remains with
me, as if I heard it yesterday.
*************************************************
As I read this again and again I fall apart. This story in fact, got me to read my own journaling back from the beginning. What amazed me the most was how much I left out of my journaling. Each entry brought back so many memories, so many feelings. So many images that I had hoped to forget. But know I shouldn’t. But it also reminded me of some really wonderful times, too. Most of all, it renewed my feeling that there really is more positive to Kylies life than negative. On thing that is most obvious in all of it is that Kylie has NO CLUE that her life is nothing but wonderful. When she was in the hospitals for so long at times, she was more worried about the kids than herself. She worried they were sad because I was not home when I was with her. She worried that Kasey couldent sleep without her in the room, she wondered how Daddy could do the dishes without her help. She knew the kids were not picking up their laundry without her reminding them over and over. She worried about ME…driving in the rain to LI, missing Daddy and the kids, sleeping at the RMDH and not on my special mattress for my bad back…She would ask how could Daddy do the girls hair in he morning? He was a boy and did not KNOW how to do pretties! I am getting kind of emotional at the moment. It’s a mix of the cold medicine, memories and lack of sleep!
I just wanted everyone to see the story. And to acknowledge Emmy’s wisdom, to be able to recognize a lot of things about Kylie in five days that took me a good 5-6-7 years to figure out. Thank you Emmy. You got this burnt out Mommy to look back and remember what a blessing her journey has actually been, especially at a time where it was kind of feeling like a burden rather than a blessing!
Hey, we are al made imperfect by God, we all have moments of weakness, faithlessness…. I have just been a little negligent with my faith! I’m getting back on track though.
As I see Grateful Giving blossoming, as I watch Kylie succeeding in school, I get back on track. I pull out of the overwhelming rut of “Why? What if? How?” and a million other q’s I pontificate about.
And I get back to “it’s the little things”….
Little things to be grateful about this morning…
A fresh cup of coffee!!! (6 dollar coffee pot at Target-shoot the Starbucks coffee at Shop n Stop cost more!!!LOL)
Enough hair on Kylies head to curl with a curling iron for picture day!
A sweet and snuggley Sprout curled up in my lap snoozing while I type.
No arguments from Ryan that I put him in a tie this morning.
Jordie accepted my Executive Order that she was NOT wearing a Christmas Dress for picture day without declaring Un-Holy War on me this morning!
(as you can see by pictures added later she kinda sorta won, it just was not the Emerald green Satin Extranvaganza she originally wanted!)
added later** cold meatloaf sammies!**
Over the weekend, I made, what I firmly believe, will be a life long friend, all thanks to Kylie!
All in all, life is good!
And for that I am grateful!Love you all- Enjoy the pictures!
Wednesday, October 11, 2006 11:06 AM CDT
Way past time for an update, I know. My laptop crashed AGAIN...the tech says its a hardware issue and again covered under the insurance policy but man! Its frustrating! Good thing was I had just backed it all up to disk the day before. Bad thing was the same day it crashed, I was waiting in line outside of Cedar Grove to pick up the kids in the rain. I brought my laptop and feeling a bit inspired (and bored), wrote an entire chapter for "the book". Grrrr....Its gone...Hope it can be retreived. Man I am SOOOO sick of technology....So, I am using the kids PC at home, but can't change or add pictures and such from this thing. I had a post all planned out about a special volunteer from Camp Sunbshine that wrote a narrative on Kylie for school. (and subsequently got an A- on it!! Yippee!!)Maybe I can do it for next week if my computer is back!
Good news on the Grateful Giving front! I am directing all posts about the foundation to the Grateful Giving web site.
Grateful Giving
Whenever I make a new post to it I will notify everyone on the CB page. I want to keep the GG off the CB site as much as possible!
October 23rd we go to Long Island for a post transplant check up. I will hopefully get some results from the tests we had done the last week in August, we should know if she can revieve her imminizations, and I really need to get them to hear her chronic coughing. She also has been haiving terrible headaches. It is frustrating me as much as it does her. I hate to admit it but she has not grown a lick...no height, in fact lost weight, and constantly complains of a sore ankle. Not to mantion the whole cleft palate thing going ob. We have plenty on our dance card.
Keep praying for Kylie please. SHe is doing great in school but it is only because of the tremendous effort she is putting into it. It is hard for her to learn, but she is determined to keep up! What an amazing kid...Shes my inspiration! I want to be her when I grow up!
Tuesday, October 3, 2006 12:18 AM CDT
Hey all, Tyler Lee did beautiful! And of coures, everyhting she does is beautiful!
As you can see she was such a wreck. LOL
Lee's nurses commented more than once how calm she was, how good...Ty told them her little sister told her there was nothing to worry about. Kylie tols her the nurses were there to make everythign OK. She told them that she remembered seeing a picture of Kylie a few hours after open heart surgery and she was sitting up smiling. And if she could smile after THAT, well, getting a tube up your nose was noting to fret over...The nurses were crying with me.
I have a few pics post "schnozery" (my name for schnoz{{nose}} surgery). I will add them as soon as my rickety old butt makes it upstairs to get the camera!
But for now she is home with a wicked sore nose. I liked her better yesterday all doped up! Shes a bit on the cranky side right now. Reowwwww...fffttt....fftttt....
The surgery itself was actually kind of a mess. Her nose had the LARGEST vein her ENT had ever seen, adult even! Since the blood was coming out the other side now he had to scope both sides. The plan HAD been to gas her to sleep and do the scope and cautery. Well, she ended up with an IV and intubated...it took a long time but he was able to get 2 veins cauterized without burning a hole in her septum !Yippee!! So, If seh bleesd still form the third smaller one then we have to go back in a few weeks for another surgery. but thats NOT GONNA HAPEN! Am I right? Can I get an AMEN?? LOL
Her nose is very vascular, which was what the swelling was from, her rubbing the nose bleeds and all...It was not a tumor as I feared, no need to even biopsy it once he got a good view of it and the network of veins in her sinuses. So, now you know why I was soooo stressed. The lump was growing, the bleeds were worse... my exposure to a Hem/onc floor for 7 years had taught me WAY TO MUCH!
So, we are back to solid ground and last night I fell asleep in my Sushi (Tlyers request) and Jasmine Tea (my favorite) I was fully dressed and I slept so hard Cody said he thought I was dead. But he knew I was not dead beacuse dead people can't snore THAT loud..Teeheehee.
So today I am recovering with Tyler Lee... I worked on the Grateful Giving website (to be released to you all as soon as I figure the damn thing out!!)
Gotta go, Its Oct 3rd and I am allowed to start my Halloween decorating !Woohooo!!!
Wednesday, September 27, 2006 2:13 PM CDT
Wow..what is the deal with Sept/Oct? In my three year experience with CaringBridge they seem to be the most traumatic, heart wrenching, depressing months known to this planet. Babies, toddlers, kids, teens, adults even are all seem to loose their battles during these months. I am sitting in a rocking chair, crying, trying to smile for Charlie and Mae. Even Spongebob is failing to make me smile today.
Three sweet souls I followed VERY closely have all passed this week. And there are a few who are on the verge. I feel sick.
I feel overwhelmed at the moment. I actually have panic attacks thinking about Kylies future…The slightest “green” look from her and I am a quivering mess.
I am also feeling anxious about Tyler Lee…VERY ANXIOUS… The pediatritian told me that she has surface vessles that bleed easily and needed her nose cauterized.
Two weeks later (and 3 dozen bloody noses lasting ½ and hour or more each time) we got in to see the ENT. He peeks in her nose and says “Holy S**t!” Yup…he did….
Seems we have three major veins leading to our nose. One from our forehead, one from the back of our neck and one from the front.. ALL THREE WERE SOMEHOW LACERATED…What??? Really?? Holy bananas! There were 4 ways to treat it.
1. Cauterizing… There is soooo much to repair that cauterizing it would burn a hole in her septum. NEXT!
2. Placing tampons in her nose for a few weeks to keep constant pressure on the veins. A what???? For two weeks??? In BOTH nostrils??? Not gonna happen, he said (like she was gonna let THAT happen!)…The damage she would cause by the constant rubbing and irritation make it a useless option…A treatment choice he has never actually utilized.(yet he felt obligated to share with me all the useless choices I really did not have)
3. Freezing the inside of her nose to destroy the veins and Packing the nostrils with Bactroban ointment. Basically shoving medicated Vaseline up her nose for two weeks…Oh, SOOOO not gonna happen, almost as bad as the tampons up her schnoz. Also another “non” option it seems…He rates that one with a less that 50hance of working…Yippee…we are batting a thousand here.
4. Surgical repair is the last “choice”. I’m not seeing how this can be defined as a choice… Options 1,2 and 3 are all the antithesis of an option. Just really icky ‘
ideas that makes ones eyes water uncontrollably imagining them happening…
So…Monday she will have surgery to fix the vessles in her nose. But things have been very unusual with it and that is making me worry about what is REALLY going on in there. She kept getting prolific bloody noses from her rt. nostril. This is where we have only seen the blood coming from…until this week…now, when you she bleeds, AND BOY CAN THIS GIRL BLEED, it comes from the left side…and it hurts ALL THE TIME…Her rt. nostril is nearly swollen shut and an angry angry red vascular ball in the inside. And its getting worse…her eyes are getting puffy, it is really interfering with her sleep…she wakes up sometimes two times a night with these profound nosebleeds…. My calls to the doc keep getting pooh-poohed…They cannot seem to appreciate that I’m not the panicking type. I’ve pretty much seen and done it all…to the umpteenth power…But, maybe I am panicking because I can’t handle another kid sick, hurting, in need of medical treatment…no matter how mild this nose thing is in the grand scheme of things. Especially as of late. Don’t get me wrong. I am blessed, considering what many many families are facing out there. I am just at my personal limit.
So, Monday morning.
I’ll be at SOCH.(Southern Ocean County Hospital) Yet a new hospital for us to add to our belt. Tyler Lee and I will bring my iPod fully loaded. She got a new pillow that you plug into your player and the music comes out a speaker in the pillow. She’s funny…She would ”much rather” use my Nano than her Shuffle…Seems that shuffling through a Shuffle is a MAJOR frustration to a 8 year old…Oy vey…I’ve created a monster.
Just bear with me as I panic over my Baby Lee….
I’ve gotten so bad at being optimistic…But a lesson was learned by myself and two first grade classes today at Cedar Grove Elementary..
When life hands you lemons, make lemonade!
Today I read Alex and the Amazing Lemonade stand to Kylie and Ryans class.
Tomorrow I will be putting a laminate floor in my family room…
And reading the book to Cody and Jordyns class.
Friday its Tyler Lees class..
And I will keep distracting myself from Mondays surgery.
And a lot of stuff will get done.
And I will cry in secret.
And Monday will come and go.
And everything will be fine
And Tyler Lee will get spoiled.
Like sand through a plastic beach sive, so are the greys on my head…
Love you all…
Monday, September 25, 2006 5:26 PM CDT
Aroung two Saturday afternoon Carol, Dale and the rest of Randons family kissed his sweet lips for the last time...I don't know any details but knowing Carol, he was in her or Dales arms while he passed. Free of all the wires, tubes...in his Mamma and Daddys arms where he belongs...
Safe journey little one....Walk with the Angels....
ANGEL RANDON
Wow...my frustration is immeasurable..Carol was on a mission to cure her son.. A mission I have an intimately close personal knowledge of. She requested all of Kylies Doctors info to see if they could get involved with transplanting a little baby with a severely diseased liver...She called me right before a meeting last Saturday with the transplanter at Vandy for deatils details details..She wanted to be prepared..She was so inspired by all of Kylies obstacles that she truly had faith and hope that Randon would be another miralce here on earth. And so was I. I was like a little kid sharing my bag of Halloween candy. I wanted her to know the sweetness I tasted. As the mother of only girls I wanted her to know the the joys of dirty, "hundry and stirsty", loud and busy boy stuff. I wanted Dale to have a buddy to make farting sounds under his armpits with. The girls to have a little brother chase them around the house with worms dug up from the back yard.
Little baby ties and jackets with elbow patches are just as "awwwwwwww" inspring as frilly dresses with ribbons and sparkles.
September is Pediatric Cancer Awareness Month and to honor Kylie's corageous and triumphant battle against a fatal blood disorder, I had decided to go into the kids classes one day and read "Alex and the Amazing Lemonade Stand". Kylies predisposition to cancer (even despite transplant) has made pediatric cancer research very close to our hearts and to rejoice in her success as well as other survivors, to remember the loved ones we've lost, and to support those going through it now, and sadly those who will in the future, was very important to me. The events of this weekend has just put that determination on a whole different level.
The big kids came into my room Saturday night to find me sobbing uncontrollably. They all know about Randon and how much he and Carol mean to me. We had a quiet and sad chat about death and dying. Heaven and the promise of paradise that Heaven holds for us all. Tyler Lee was having a difficult time understanding how an 8 week old baby can die. The concept, to her, was unfathomable. The sad truth is that is happens...more than she knows...All Cody wanted to know was if Kylie had ever died. I said that she indeed has been recussitated on more than one occasion. He wanted to know why the doctors couldent have recusitated Randon...It was tough. I have a very definate feeling that my reading that book to their classes will take on an whole new meaning for them this week too.
No suprise I had a migrane of ginormous proprotions yesterday...
But not before I got to enjoy my first day as the Kindergarten Faith Formation teacher at Our Lady of Perpetual Help Church in Seaside!
(and I somehow got sucked into doing the newsletter too...if anyone knows how to do this task, give me a heads up! I'm a little bit (ok, a whole heck of A LOT, lost!))
I got a call the other day from my dear friend Michelle Francis at Wachovia Bank! It seems a very generous donation was sent to Kylies Fund from our dear friend Brooke McKenzie all the way from Cambridge Bay, Nunavut- Canada. With some of those funds we plan on geting a hold of the transplant Team at Vandy and start a relationship to send their little patients care packages in Randons name.
THANK YOU BROOKE!!!!
Good night my friends. family and loved ones...sleep tight, kiss your kids, forgive your enemies....
Do unto others, no matter what they do to you.
Give others considerations that they may not give you, no matter how slight. A little of Gods love goes a long way.
Because, as the bible says, even the dog gets the crumbs.
Saturday, September 23, 2006 4:37 PM CDT
Aroung two this afternoon Carol, Dale and the rest of Randons family kissed his sweet lips for the last time...I don't know any details but knowing Carol, he was in her or Dales arms while he passed. Free of all the wires, tubes...in his Mamma and Daddys arms where he belongs...
Safe journey little one....Walk with the Angels....
ANGEL RANDON
Saturday, September 23, 2006 11:33 AM CDT
NEVER STOP PRAYING FOR RANDONS MIRACLE
please go to Randons page, pray over the family...help them stay strong as their precious little boy slips away from them.
I am speechless...
Wednesday, September 13, 2006 10:12 AM CDT
NEVER STOP PRAYING FOR RANDONS MIRACLE
In honor of RANDON we play our family favorite...Lullabye for a Stormy Night...
This post was inspired by Carols posting on Randons page.
She was treated to a concert with Rascall Flatts. They are, have been for years and will continue to forever and ever be my "mostest favoritest" band in the whole wide wide world!" My first thought was "Lucky Stiff!!" then I remembered where she was when she saw the concert...Its reminded me how sometimes ironic and tragic things happen. She probably, at one time thought, "I'd like to see them in concert", never once imagining that she would, if fact, have a near private concert, in the theatre of a Childrens Hospital where her son is being treated...It reminds me of my own similar "moment". Flashback 1986, I'm 13, a freshman, and everyone had a Sony Walkman with Bon Jovi's Slippery When Wet (hey, its Joysee, we are OBLIGATED to be Bon Jovi fans!) cassette(CD's were as of yet, still obsolete)BLASTING in their ears as they went from class to class. I was a preppie, wearing Bass Loafers tied with curlycues at the ends. J Crew and LL Bean ruled. I was hip in my assmyetrical bob haircut, which if you ask my mother, she will tell you she loved it on me, as funky as it was. I LOVED argyle socks.(still do, just bid on some cashmere J Crew socks on E-bay the other day!) Anyway, back the the story. Every night, I prayed to go see Bon Jovi at Madison Square Garden. (wow, I am embarassed to admit a prayed over THAT, but I was a kid and not yet ready to understand or accept Gods majesty and wisdom in my life) One day a friend asked me to go and after serious badgering, harassing and tantrum throwing, my parents finally let me go. We had nosebleed seats, but so what! I was THERE man! I danced till my legs shook, I sang till I had no voice,I screamed out " I love you Jon!!!" and when they sang "Never Say Goodbye" I lit a lighter, swayed back and forth and cried like a baby. Yup, I was a complete dork. I daydreamed about meeting them, being a Roadie, going back stage. I wanted marry them! Never in a million years could I have ever imagined that fourteen years later, while in the hospital recovering from giving birth to Ryan, would I get a call from Dorthea Bon Jovi telling my Bon Jovi has offered to do a benefit concert for my daughter, Kylie. Or that a few months later Jon himself would be standing next to me in the school parking lot waiting to pick up his daughters friend. He remembered me, asked how Kylie was doing, and told me they thought of her often and admired our strength. Amamzing how things happen.
I contemplate my choice as a teen to actually PRAY over seeing Bon Jovi and on more than one occasion, bore contempt that God granted me my wish but said "OK, she wants it, she'll get it all right". But then I shake of the devil seeping in my head, trying to get me to question God. he took the opportunity to weeze he way in and say "What a spiteful God! He granted your wish but he made you and your child suffer for it!" NO !! That it NOT Gods way. I CHOOSE to KNOW that Gods plan NEVER includes hurting me, or any of His children, never includes suffering or pain, but His way is through Faith, Hope and Belief. I like to believe, no, I KNOW that it went down like this: God, remembering my hopes as a child, guided the Bon Jovis in my direction. I believe that He whispered in their ear "A fan needs your help". THAT is the was He works.
Sorry such an unusual post, just a thought in my head I have been pondering over for years after reading Carols jorunal today it was relentless and practically demanded that I journal it. I guess just a lesson on how the devil tries to put a spin on things to make you question God, and how we all sould sit back, re-evaluate the situation, and see that no matter how bleak things look, no matter how bad something can happen that makes you wonder either "Where is God?" or "How could He do this to me?" there is a reason for things, it is all a part of His plan, and it is all for our benefit and betterment. Whether we can see it at that moment or not. For me, instead of thinking " I never would have wished to meet them if I knew He was gonna make my kid sick in order for it to happen". I saw that it was God, trying to make my horrible situation, just a little better. He tried to put a sliver lining on my black cloud. It wasen't yet time for Him to make Kylie better so He tried to ease our other burdens by seeing we got help with her medical bills, had a fun concert to attend, and achieved a long forgotten dream.
Thank you God, for even when I had moments that I questioned you, you stayed resiliant in your love for me. You never questioned ME, You have always known what I was capable of and never gave up on me. I am the woman I am today becouse of your unconditional love. I am perfect in your eyes and that makes me feel good. Great. Invinceable. With you there is NOTHING I can't achive, manage or cope with.
I LOVE YOU!!
Wednesday, September 6, 2006 2:04 PM CDT
In honor of RANDON we play our family favorite...Lullabye for a Stormy Night...
NEVER STOP PRAYING FOR RANDONS MIRACLE
This baby and his Mamma are so very close to my heart...She is living my greatest nightmare...With every baby, I secretly obsessed that I would have another DBA child. No matter how much the "odds" were against it, it was always there...Every baby after Kylie, upon their moment of delivery I panicked and looked to Joe to rush over, count fingers and toes, remind the doctor to check for a cleft palate, nag them to make sure there was not heart defects, take blood, whatever it took to confirm there was no DBA-(when in fact, I will have to live with that fear for the rest of their lives now that I have seen that DBA can present at any age on a perfectly healthy child...) ...I never had that joyous moment after delivery like I had with TJ, Cody and Tyler Lee...And poor Carol...such a loving and faithfull daughter of God, is now suffering that fate...Please lift her up in your prayers, cover her in your love, hold her up with your strength, for right now, she is running a little low on her own.
Hello dear friends. Where to start, where to start..Oh! I KNOW!! Yesterday WAS THE FIRST DAY OF SCHOOL!! Woohoo! Woohoo!
I was "grossey" shopping (grocery) the day before with Co, Ty, Ky, Ry, Meatball, Mae and Boo...(Cody, Tyler, Kylie, Ryan, Jordie, Kasey and Charlie). TJ was off with friends. I was casually strolling up and down the isles singing in my best (na-na-na-na-nanaaaaa voice) "School starts tomorrow"..over and over again. Pouts and harumphs were widespread. Even a few tears pricked up in more than one set of eyes. I actually did a few Napoleon Dynamite lunge where he makes a fist and pulls his arm down and says "allriiiight". I tell, you I was instigating BIGTIME! The night before we did the "last non-school night stay up late and do foreworks party". We grilled some steaks and make mashed potatoes with enough butter to clog the neighbors hearts. We had sparklers and stuff we picked up on our trip to NC. ANd we just had fun. But now...now it was early to be and early to rise. Bookbags and sneakers lined up by the door, haircuts and bus passes out the ying-yang.
But all joking aside, it was a very meloncholy moment for me yesterday morning as I took a photo of my 8 all on the front lawn, grey misty sky around us. Rain, just moments away. All eight in some way shape or form going to school this year. ALL EIGHT. And with that I mean Kylie. Supper kiddo extrodinnare. Today she starts first grade. Full day, mainstream school. Kylie Jae monica, c***d form a bone marrow transplant last year. Off she went this mornign without a care in the world. No pump strapped to her back. No broviac swinging in the breeze. No port. Nothin. Daily meds -but the synthroid will be forever and the antibiotics may be done after her recent immune studies come back. I am hoping to get her immunized soon. It puts things into prospective for me remembering where we once were, where so many families are right now and how many more will in fact be in our shoes someday. So, all in all, the day was a blessing in many many ways...I gave tremedous thanks to Him for the many gifts this morning brought.
Now for the MONICA MADNESS version of the festivities of the first day of school...
The first day is INSANE! Believe me I know! Last night I had everyone in bed by seven after we took them all to Old Country Buffet-I was too traumatized by the days chaos to cook! Leave it to me to have to take the kids who ride the bus normally home with me when I pick up the walkers on the first day. Talk about makign a confusing day that much more confusing! I was only taking them all because I needed to get Tyler Lee to the pediatritian by four and I figured if I had to wait for Ryan, Kylie and Jordie's bus, I'd miss it. So we stood in the rain and waited, one Monica, two Monica, three Monica four.. uh oh...where is five and six?? I had called the school and spoke with the secretary, I even wrote a note for Jordie and was actually standing at her outside classroom door waiting for the walkers to come out. Mrs.Memoli and I made eye contact and smiled! She indicated if I wanted Jordie then and I mouthed "no, I'll wait for class to end" Yet no Jordie and no (gasp) Kylie...BIG UH OH!! Mrs. Memoli sent me this e-mail this morning
"Hey....I am so sorry about today. What was I thinking...you were waiting for her outside and I put her on the bus. I WAS EVEN HOLDING YOUR NOTE IN MY HAND AS I WAS PUTTING THE CHILDREN ON THE BUS."...man I love that lady...
Seems Kylies teacher messed up too and instead of sending her out with the walkers she sent her to the office...so...no one could find Kylie! ARGH!!! THe walkie talkies were buzzing and soon little Miss Cute and Smiley was located. I ran, well more like shuffled in a Quasimodo fashion across the newly waxed school floors with wet sneakers. By the grace of God I got to her at the office in nearly one piece. Meanwhile poor Joe was practically pushed out the South Lot (Holy Smokes THAT is like a MASS EXODUS-God help the poor soul that clogs that nightmare up...) and had to pull around to the front of the school for us!!
Despite the "rainy-confusing-where-are-my-children!!" panic stricken afternoon it was really morning that really killed me. I had Kasey all dressed and ready for her 7:30 bus only to realize she started the NEXT DAY! OMG! SO, I looked at her school papers and saw there was an orientation that morning at 9:30 and figured I'd go only to talk to the teachers about getting Charlie bumped up on the waiting list! ( I soooo need to get that boy into school!) Then it started raining, TJ couldn't find socks (he says Skippy eats them...hmmm...) Cody was having an anxiety attack .."Mom- I can't go 6 hours without seeing you..." (remnants of the horror of Ryan's accident are still lingering with that guy, poor kid) Tyler Lee wants me to do her hair like Hilary Duff's in one of the posters on the wall in her room, Ryan is still sleeping (how did I forget to wake him??) Charlie is "hundry and stirsty" STILL after a banana, a bowl of Fruit Loops, nearly a half gallon of milk and some cheese...and Jordie well, she is content, in her jammies, smiling at the chaos -going, "I don't have school to LATER!! I get to stay home with Mommie ALONE" inciting yet more chaos...ARGH!!! AND this is only the first day.. Not to mention Joe threw away ALL the kids class assignments thinking they were all duplicates of one paper, not realizing the back of each one had each kids teacher and class number. SO they ALL were crying and howling that they did not know where to go.. I swore I was ready to start drinking..HEAVILY!
Sooooo...eventually I drop 5 off at school, direct them in the general vicinity of possible classroom locations and zip off the Head Start with Jordie, Charlie and Kasey. By now, God is laughing his ass of at me and decides to throw me a bone. The staff greets me at the door to tell me they shuffled a few kiddos and Mr. Charlie Boo starts the NEXT DAY! I literally cried! Finally we go home only to get a frantic call that I forgot to sign the most important papers for Charlie, and if I don't go back he cannot start tomorrow..BUT they were all going on lunch and I needed to wait till 1:30...soooooo... I start folding laundry when I remember THE TOOL BOX!!! HOLY S#$T!!!! Jordie needed to make a pencil box for her kindergarden class using a shoebox to put supplies in. I had missed kindergarden orientation (that was the day Kylie had blood pouring out of BOTH her ears!) but since me and Mrs. Memoli go WAAAY back (this is my third year being blessed to have her as a teacher) she e-mailed me the imporntant stuff she covered that day. The tool box being one of them!!! OOPS!! Soooo...Zip a dee do dah -me and Princess Meatball are soon gluing pictures, ourselves and even Skippy to the box in question. (all while Charlie is feigning malnutrition..."I'm soooooo hundry...")
Half the box is done, and we do lunch. Charlie eats two sandwiches, a dozen cucumber slices, nachos and salsa. Kasey takes the rest off the plate to protect them before he gets his grubby paws on them (Charlie is affectionately referred to as Hoover). While Jordie, in her pretty dress and hands all gluey, simply picks daintily at her nachos and cucumbers while ever so s-l-o-w-l-y inching the salsa and Ranch dressing bowls closer and closer to her idea of what the middle of the table is. Soon Charlie and Kasey have their ENTIRE bodies strewn across the table to "dip"....and I am still trying to get Skippy un-glued from the floor...back to finish the box, draw a picture, ( she was to draw a picture of herself and her favorite stuffed animal and a picture of what she guessed the special first day snack would be) FYI-she guessed the snack right!-I'm taking her to Atlantic City, that kid is LUCKY! We packed the back pack with the wet "tool box" and then it was time to get her on the bus...mind you there was no bus pass in Jordies school letter and I have NO clue as to the time or location of her bus stop...So I take a wild guess and "Mr. Dave"-now used to the idea of having a Monica on his bus detours from the stop upon not seeing us and meets me 1/2 way...whew....bullet, dodged!!!
So, Jordies gone and off we go, back to Head Start to get Charlie all situated for school, get home, clean up lunch and the tool box making fiasco and its time to pick up the crew...which brings us to the bus/walkers fiasco-you already know how far downhill it goes from there!
Eventually,we make it to Tyler appointment only to learn the nosebleeds are coming from blood vessels on the OUTSIDE of her skin inside her nasal cavity and we now have to go to a ENT to have those vessels cauterized. ( I told her that meant they stick a quarter up there to stop the blood from pouring out her nose) I will prepare her better when I know the appointment is not a month away, or she will have nightmares for a whole month waiting! Home we wnts, loaded the bus for the crews favorite spot OCB, came home got EVERYONE in jammies and those 7 and under in bed before 7 (TJ played RuneScape online untill 9 and Tyler and Cody sat at the foot of my bed playing with MnM's and discussing whether or not Cody should try the violin this year-I said heck yeah! Someone has GOT to have my musical inclinations, {{former floutist and pianist here!}}) All while I went thru 6 bookbags, filled out 6 Emergency Contact Cards ( it took three pens and my hand twisted with all that tiny writing!), sifted thru 6 folders all containg the EXACT same paperwork like "join wresteling!" " buy a calendar" "Sept lunch menu" "PTO meeting!"...my throw away pile was starting to sink into my mattress. I wrote down pages full of notes from 6 different teachers, dates for Back To School Nights (three one night, three another-not too bad!), put CHarlie to bed 5-6 times (which ins HIGHLY unusual) as he was all excited about starting school, let Kylie go potty three times (we are going to the hem/onc tomorrow, somethings not right...), counted out a box of crayons and split them evenly between Jordie, Kasey and Kylie so they would stop fighting over how many crayons the other one had,(we let them color in bed after story and tickle time and Jordie just cant keep the box in the middle between them on their nightstand table-same as the salsa and ranch bowls, it s-l-o-w-l-y makes it way onto her lap...THATS the middle to Jordie, in the middle of HER LEGS!)all while trying to pay attention to the sesion premire of House! MY FAVORITE!!!
I got the jiist of things, but every time I got back in bed, or missed somethign I asked Joe what I missed, to which he continually looked up at me and said "huh??What??"
Never mind, go back to sleep...
LOL
SO, how was your first day???
Thursday, August 24, 2006 10:23 AM CDT
Hey there all, just a little add-on to the journal without removing Radons story.
First, I have to testify here for a moment. A few months ago my PC blew. More than a few, like over 6 months actually. Fixing it did not fit into our budget so we all ended up relying on the laptop. Last month the laptop took a header and shattered beyond belief. Thankfully we did have an insurance policy and off it went to be repaired. BUT...we learned very quickly how much we rely on technology. From online bill pay to my CB page, we needed internet access BIGTIME!
Thinking the PCs problem was just a power source my Dad picked up the tower and my brother fixed it. Long story a little less long- the hard drive was destroyed...three years of info, GONE, my book, GONE, Kylies transplant photos, heck, over 3000 photos GONE... And more than that even...lots and lots of imporntant Cure Kylie stuff, medical history...We took it to a computer whiz and he told us that the hard drive was blank. A little bit of me died that day. And every day that went on and I remembered what else was on it, I felt worse and worse...I prayed hard that if anythign even just a little bit of info could be recovered, that it was Kylies transplant photos that we got back. Last night my Dad delivered the news that the hard drive was indeed blank. I tried hard not to cry on the phone, but failed miserably. After I hung up with him, I actually threw up. Yet before I went to sleep I still said my nightly prayers, thanked Him for another day,and asked Him to help me not be so sad about all I lost. This morning my Dad called...there is info being recovered. There is hope. It may be limited but theres something there. Funny how He works. I did not rant and rave about the lost info, I did not scream at the kids for shorting out the computer by somehow bending the USB ports in the front of the tower (probably by yanking on the mouse or slaming the chair into the cabinet the tower was in)I just said Please help me cope with the loss...Ask and ye shall recieve, seek and ye shall find...
Next, I told you all about Kylies bi-cuspid valve. I believe I also mentioned they wanted to test the whole family, since the bi-cuspid valve runs in families. Well on Tues all the kids had their Echos. No one had bi-cuspid valves, THANK GOD...However,
they were concerned about Ryan and Joe thought, Jordyn. They told us no details untill they were able to "run some numbers" and by the end of the week they would get back to us.Turns out it was Ryan and Tyler Lee that they were concerned about. Their valves are asymmetric. Not bi-cuspid, but the flaps are not equal. Ryan is fine. All his pressures and flows are within normal range for his size. Just a little "not-normal" normal thing.Tyler Lee however, her aortic valve is leaking! She needs to be followed very closely and she will be seeing the doctors at Deborah on a regular schedule now. I have no idea what this means, could mean, may become, nothing-just that I'm so very sad for my sweet little Baby Lee. She had no clue, telling her will only scare her,there are no symptoms, thankfully, and we will take it one day at a time. Just think of Tyler when you pray for Kylie too. Thanks...There is strength in numbers.
Why is she playing this? Well...due to current computer issues, my plethora of iTunes spanning 33 years of my love of music is at the moment in the hands of a "system recovery" expert....It was all I had at my disposal but by the end of my journal you will realize how very fitting it actually is and maybe it was fate guiding me to a fitting tune I may have otherwise overlooked. In my months abscence I encountered many things that I would have loved to share with you. Treats delivered from Hilary Duffs management, more Camp stories, a 1,300 mile drive in less than 72 hours to move Diane to NC, three totally awesome women on vacation here in Joysee, while eating at the local favorite Sawmill, whom upon asking me the obligatory "Are they ALL yours??" asked me to sit with them a while while they grilled me on life with 8 kids all unde 10. We laughed, we cried. And in 15 mins of knowing them I felt like I had three slightly older sisters. I went back to our tables (yeah, we usually take 2) they went on their way (after trading e-mails and sharing Kylies CB page). When it came time to pay our bill our waiter was not shy in hiding his excitement that the ladies had taken care of our bill....I am crying re-telling it. My goal in sharing my life with people is not to "gain" from it but to spread hope, faith, encourage random acts of kindness. But TO others, you know our Pay It Foreward motto. Yet again, His greatness shone on us thru the kindness extended to US by others. I have been touched again by the affect Kylie has had on our lives. What she brought to our lives,who she has brought. She has made this family what it was, made me the person I am. And in recent years, as I have finally come to learn how to reach out to others not only to ask for help, (which I REFUSED to do for years) but to reach out to others to whom I can be of help to this whole new world has evolved around us.
I love you all and am honored to have you all a part of our lives.
Now, I have a Mission for you all...a Mission of Prayer for the Miracle of Healing for a sweet little gift from God named Randon. Randon is the son of my friend Carol. In Dec 2001 she her husband Dale had a little boy named Reid. Sadly, Reid has afflicted by an as of yet undiagnosed Bone marrow failure disorded and required a bone marrow transplant. April 2002 he underwent a BMT at CHOP and the transplant worked beautifully. Shockingly, as he was ready for discharge, Reid died suddenly of heart complications. The family was devastated. Soon though Regan and Riley, Reids big sisters, were blessed with little sister Reese. And just this Feb., Carol shared with us her Christmas Miracle was another baby on its way. WHen she learned it was a boy she expressed her fears of a repeat of Reids experience and I, as I am sure all of her friends, family, strangers and doctors alike told her it was very very VERY highly unlikely. But it was in fact the mothers instinct that we should all remember is always right. And sadly on July 19th she delivered Randon and it quickly became obvious that he too in fact suffered fromt he same bone marrow failure disease as his brother Reid. Randon is in Childrens Hospital at Vanderbilt in Tenn. Its a daily roller coaster ride and I cannot imagine the pain Carol and Dale and the girls must be in. Please, PLEASE, spread the word about Randon, tell your Priests, Rabbis, Ministers, friends, family , even strangers to pray for Randon's Miracle. Show this family your support and love. Have faith and belief in His mercy. And when time comes for his transplant I hope Cure Kylie members will shower this family with Care Packages of Love and Hope.
PLease, go there RIGHT NOW and leave a message, a prayer, a positive thought. Or just pray over them. Just pray HARD...
All my love...
Now, back to the song, How fitting... Randon is most certinly Superman right now, and its not easy...
YIKES!!!! We are still here!! The laptop is in a trillion peices and the home comp has been out of comission for at LEAST 6 months!
We ARE still alive here, for once it was actually I that has not been well,but I am, in fact, at Schneiders RIGHT NOW with Kylie, we did have a little jaunt to Jersey Shore hospital with her last week. Then I had my typical post hospital visit flu...never fails, every time I take her in I get sick as a dog within a week....lost my cell phone, and my mind. Counting the hours untill Sept 6th.
I have to update still about Camp Sunshine, soooooooooo much to talk about.
And never got to tell about MEETING Hilary Duff!!
THAT story is a tear jerker....
gotta scoot- a day full of procedures ahead of us...hoping my laptop is back by my return home saturday morning-but I'm not holding my breath.
Saturday, July 29, 2006 10:09 PM CDT
Oh my...would it be ungreatful to espress my truely honest experience at the "Toms River Fiasco"..I mean "Fest"? I am so humbled by the opportunity offered to us that I will keep all the positives in mind when re-capping the events of the day, tomorrow. Cody just announced " Mom's suing!" If my children waiting four hours in 100+ heat for their "spot" in the grass, only to be TRAMPLED and CRUSHED againt a metal fence constitutes a law suit then so be it....Kylie nearly went in to heart failure from dehydration, then was literally crushed against the retaining fences that I had to literally scream at hundreds of people to get out of my way, less than five min into the show. I plowed Charlie in his stroller thru hundreds of ignorant, rude, obnoxious people while Joe kept count of the kids behind me. There was NO security to help us, NO regulation in the general seating area, and all the people int he reserved seats were STANDING on their seats COMPLETELY blocking ANY view we had waited for for OVER FOUR HOURS! The show started over 45 mins late and we will all need therapy to recover from this. Kylie keeps crying, as well as ALL the kids... It was a complete disaster area...
But there were some good things that did happen, I will cover them tomorrow, but I just had to purge all that nastiness so I can catually sleep tonight!
Blessings tonight to the McMahon's ! They were certinly our Knights in shining armor tonight....THOUSANDS of people cramming their ways onto shuttle busses....lines that would be HOURS to get to our van...We were in complete despair. When BAM! there they were! Need a ride???? Can I get a BOO YAA????
Whew, that was our crowning moment tonight....
Ahhh, I've said it before, All the bitterness makes the sweet that much sweeter! Tonight they were a sugar cube, a HUGE ONE at that!!!
Nighty night!
Friday, July 28, 2006 8:18 PM CDT
Well, theres lots more to say about camp. From the late night porch parties (shhhhhhhh...;-)) to the shower curtain we decorated. Someone at Camp Sunshine will be showering behind a curtain the Monica crew got their paws on. Literally, Tyler Lee left her hand prints. TJ drew a Monkey with a banana. I left a reminder to the families that utilize its services to remember to LIVE, LOVE and LAUGH ALWAYS courtesy of tenkids2dogs.
And this time tomorrow we will be "be-boppin" to the Duff Stuff queen herself! Hilary Duff will be in the house!!! Well, she will be in Bobs River, I mean Toms River!! We were given the opportunity to see Miss. Duff courtesy of an anonymous donor. Kylie was given concert tickets and admission to the Toms River Fest for tomorrow. And with Kylies connections and super awesome totally hot, hip and happenin' wish coordinator Pam, from the Mary yLons Foundation and Kids With A Cause-we will be escorted to a "Meet and Greet" with THE Hilary Duff, AKA Lizzy McGuire, AKA All Cute and Sparkley.
There are lots of rules and regulations regarding the Meet and Greet so I will have to cut this short and study the e-mailed TOME of all the restrictions, lest Kylie Jae and I be pillaged by security and thrown in the clink for violating Da' Rules!
So, shhhhhhhh, this info is only shared with you since Kylie cannot read! She has NO CLUE this is going to happen.
So, tomorrow night I will be dancing and singing at the top of my lungs, THIS IS WHAT DREAMS ARE MADE OF! with sweet sweet KylieJae Monica- super kiddo extrordinairre, and Hilary Duff fan too!
Night all- Will update on Sunday!!
ANd I PROMISE to change the song!!! I'll replace it wiht Kys fave from the concert!
Unless my good friend Lesley B. wants to record her version of Stand by Your Man for me. That was the HIT of camp!(and she complained about the music on Kys page!! What? You mean hearing the SAME song over and over every time you log on is annoying???? LOL)
I WILL put up the controls so that you can stop the music yourself..I promise!!
Saturday, July 22, 2006 4:47 PM CDT
Where to start...where to start...my head is spinning with so many thoughts, memories, ideas...These last two weeks have brought me to a whole new place with DBA...one where I look at it as almost a blessing. Without it I would have never met Paula, Victor, Cassidy and Little Miss E Street all the was up in Ottawa. I would never have known the "yellow people" that for once out numbered US!!! Imagine the Monicas pulling up in the BIG GREEN VAN...Mass quantities of small children come pouring out of the van in a seemingly never ending stream of noise...(yes, images of the clown car at the circus often come to mind)We pour into the front of the building nudging, whining, and LOUDLY discussing ones massive need to take a pee...a really B-I-G one at that. (not to mention one very small-yet astonishingly loud voice that announces that he just farted because he needs to Poo....) I'm ready to turn around and go back home. But I look around and for the first time in my life as tenkids2dogs, there was more of THEM than US!!! Yellow shirts galore.Volunteers en masse who took a week out of their summer to spoil my kids and Joe and I for that matter. (psst....come in really close for this one, I don't want EVERYONE to hear this one...since there were volunteers that basically came and TOOK my children from me I actually got to...you are never gonad believe this one...I -got-to-go-potty-ALONE!!!!) Yup! I drove 9 hours to Maine to pee alone. And let me tell you it was well worth it!!! And I'm gonna do it again, but since it will be physically impossible for me to wait the two years to go back to camp I'll just have to deal with the community pottying here until I get back to Casco.
I'm not sure what I imagined camp would be like. I worried that the kids would be surprised at how NORMAL DBA people really are. Not that Kylie is not normal, but the amount of complications she has endured with this syndrome is "unusual" to say the least. BUT, I was wrong...They were inspired, I spoke to them and asked what they took home with them about DBA (they have NEVER NEVER NEVER been exposed to it like that before- although Ky and I know Lexi and Morgan- DBA kids Ky has been hospitalized with in the past, the kids have never met them) I feared they would be angry that Ky was SOOOO inundated by the beast where the vast majority give no indication of the battle within their bones. They actually told me they feel much better-they believe more now than ever that Kylie has a real life, future ahead of her. If those teens, adults can manage so well then Ky has nowhere to go but up-up-up...It took me a few hours to realize that the young man who took us under his wing and escorted my Motley Crew around camp, showing us the sights was in fact, Justin Baumgartener. The founders of the DBA Foundations son, who has DBA. I had to close my jaw. Then tape it shut. I was agog. I think I freaked him out the way I kept staring...Like I was waiting for this big obvious "sign" to appear that made me say, "Ohhhh, now I see it." Nope- not a clue, sign, indication. Nada...Zilch..Zippo. Then I found myself re-evaluating Kylie. What was it that made me look at her and see DBA. Because I was privy to its presence? Would a stranger off the streets pick my kid out and say there's something about that kid that's not right? And I came to a new level of acceptance with DBA and my daughter. Take away her scars, that are much more obvious to me than anyone who does not have a deep personal relationship with each and every one like me (that's PIC line March 2004, that's treach scar 1999, that's ASD repair 2001) And Kylie is just Kylie. An itty bitty, oh so sweet and yummy, cutie pie of a kid who sucks you into her smile like a bug to a Zapper-once in its clutches, there's no getting away. But its a place you never want to leave once you get there. Inside Kylies heart and soul is like Wily Woks Chocolate Factory. I LOVE IT!!
I must say that I left camp feeling like I did not get from it what I was expecting, I guess that was because I kept a safe distance from any conversation that might crack my dam and cause a flood that no amount of sand bags would stop.We offered our assistance to anyone who wanted to know about the families perspective on transplant. The doctors were given our permission to use Kylies name during discussions on transplant so that the parents had a face to put to the information. We were approached by worried parents, and commiserated with others who have the same Q's as us that we still continue to come up with. I came away from Camp Sunshine with much more info on DBA than I expected. Unfortunately I have a very heavy fear that the other kids are not safe from the beast in the future. Be it they themselves, or their children. I have a very sickening feeling that DBA will make its presence again in family in my lifetime. But...back to the fun...
Our first meal at camp was like a film in HS health class to encourage birth control, no-celibacy, scratch that, sterilization!!! Imagine being in line with 8 kids... plastic forks and napkins were a-flying...trays were a-spillin, kids were a-bitchin. There were names on each table, and quite suspiciously ours was waaaaaaaaaaaaay in the back next to the double doors leading out to the main hallway (and the closest table to the bathrooms-whew..) I assumed they kept us closest to the door so when we got tossed out we did not have to embarrass ourselves and trudge with our heads down thru a few hundred people because out kids got naked and stood on our table. (don't laugh, it has happened, thankfully not in public..YET) Really, it was chaotic. Everyone kept telling us, GRAB A VOLUNTEER !! THATS WHAT THEY ARE HERE FOR!!!! Joe and I have a difficult time asking for help. We take our family responsibilities and suffer in silence..lol No ,really, we feel that we chose to have them all, we cant ask another person to help us. Eventually we tossed that feeling out the window. Because if I took ONE MORE trip back to the food line for a cup of water, a fork, more fruit, another serving, ketchup, whatever, I was gonna run head first into the lake with cinder blocks tied to my waist. There were meals that Joe and I never even ate! Joe told everyone it was the first vacation that he lost weight and lost his tan. Soon we got into a routine, Courtney bravely sat in for a few meals with us. Jack and Kip were already at our table waiting for us many times! They would grab trays and bring plates, fetch utensils, clean up spills...Justin even let Ryan eat at his table once! I spent 9/10ths of my meal times running back and forth. If I asked Meg for ONE MORE PLATE OF BACON she's gonna think I'm a pork-aholic. Did she just write PLATE OF BACON?? Oh yes I did....and I have the entire kitchen staff of Camp Sunshine to attest to it. The sheer quantities of food consumed by my crew had their heads spinning. my ability to balance three trays with four plates each , to carry up to ten drinks without a tray, and to inhale my food nearly whole to keep up with my crew without choking...all skills I am now infamous for.
Ryan and Charlie fell in love for the first time. And it was the same woman!! And she was a hottie!!! My boys have got great taste!! Meredith was blond haired, blue eyed and as sweet as clover honey on homemade cornbread. Too bad she was about 15 years too old for them! If I needed to find Charlie, I just needed to locate Meredith. They were attached at the hip. Literally, as you will see in the photos. Tyler Lee was also her shadow for the week, and asked me when we left if Meredith could come and sleep in her room. Nancy, our friendly Putt putt comptroller, insanely volunteered to watch the kids with Kip one night so that Joe and I could escape and scarf some Maine lobsters...we never got the lobsters, but we did get a few hours alone, wandering the isles of the super-mega-ultra-WalMart, being tourists and laughing at the festivities of the week. (remember when purchasing Citronella Candles to but MATCHES!!!! DUH!)At night, under the cover of darkness, over the din of 8 midgets snoring like chainsaws, we surreptitiously maneuvered ourselves out the door to pow-wow with other parents. We partook in the ceremonial consumption of chocolate milk despite my lactose intolerance (there must be an anti-lactose barrier around Camp Sunshine because it was the only time I drank milk and did not want to die a few hours later!-Kind of the same way that when your kid in the hospital McDonalds in non-fat, and during your time of the month, chocolate in non-caloric) We laughed our butts off, but mostly I observed, If you can imagine that .A few nights I visited other "groups" But mostly it was Joe and I with Victor and Paula in front of our rooms. One night we played Conga, one night we laughed until I cried. Never get a guy from Minnesota to talk about his mother-in-law. (not all Minnesotans-just one in particular) I pulled a muscle laughing so hard.
That's enough for tonight's portion of the weeks events. I am still recovering from the 11 hour drive home. At one point we drove 57 Mlles in 3.5 hours!!!! TJ yakked in the back of the van, I have a raging ear infection and driving with 8 kids ANYWHERE in pretty much a nightmare. But driving back from Maine on a Friday afternoon is just pure suicide. (for all of those who are thinking I escaped getting puked on for the first time since starting this journal, you can forget it. Jordie managed to blow chunks on my foot this morning. Way to be Jordie...way to be.)
Ill add more tomorrow!
E-gads there's more your thinking???
Oh yes...yes there is...
Here's a tease..karaoke
lets play a game (those of you who witnessed these travesties- shush!)
By the way of pure sabotage and marital torture-Joe and Victor did a duet....And as sexy as Paula and I may think they are they did this song no justice....can you guess what it is??
And in a purely immature act of revenge, Paula and I were forced to make our debut performance to a classic. Well classless is more like it...I have found a new calling and if all goes as planned a Brazilian Butt lift may be in dire need here...Can you guess what it was????
Good luck, and God bless!!
Love Ya!!!
Sunday, July 16, 2006 2:57 PM CDT
WE ARE HERE!!!! WOoHooooooooo
Casco Maine is now increased in population by 12!!!
Love to all! Well update again!!!
Saturday, July 15, 2006 2:11 PM CDT
I AM here, just lost beneath 10 suitcases, 8 sleeping bags, dinkies, rub-rubs, Puppy-poops-alot, BoBos, pillows, a plethora of bug spray and sunscreen, towels and bathing suits and enough shampoo and toothpaste for 10 people a week away from home......
Pray that we have safe travels, no accidents- be it vehicular or potty-wise and hopefully some long naps.
THis camp will be a whole new world for us. I have never been a room with more than 2 DBA kids, and one was always mine!! This week we will be a whole village of them!
Monday, July 10, 2006 8:44 AM CDT
getting ready to go to CAMP SUNSHINE....WoooHooooo
packing the towels, bating sutis, bug spray, suncsreen, and benadryl..LOTS of Benadryl!!!
That is a 7 hour drive..SEVEN HOURS IN THE VAN WITH THE KIDS....Ohmmmmm....Ohmmmmmmm...Ohmmmmmmmmmm......
Num-ne-ho-ren-gay-quo.......
Actually it will be more like the Exorcist...THE POWER OF CHIRST COMPELLS YOU!!THE POWER OF CHRIST COMPELLS YOU!!!I will stop at church an pick up the Holy Water on my way to the Parkway.
In other news, to all my Jersey Shore Hospital readers, those on PICU last week and those on Regular Peds this week...There is a brown haired DO student from Midwestern University in Arizona with you guys right now. Her last name is Schwartz (May the Schwartz be with you)her first name Dawn...Her apple fell off the same tree as me. We both blame the same people for giving us more issues than National Geographic. She is, in fact Kylie Jae-Super Kiddo's Aunt and my "sister from the same mister!!"
Last night she was over Casa De Crazy and asked me do you know a Dr. Thomas or Dr. Grossman??? I nearley peed my pants...We go WAYYYYYY back with Dr. Thomas, he started with Kylie in a different hospital tnan the one he is in now! Before she was even diagnosed! He was the one that started the whole "this has GOT to be a syndrome " thing, where as another hospital was telling us it was just a series of unfortunates flukes. Pretty ironic in a state where malls and hospitals are on nearly every block, that he ended up in the same hospital Kylie uses now.
So, back to the sister thing...
Show her the love!!! Show her the good stuff! Shes part Kylie. We are both Donlin girls but married to become Schwartzes and Monicas...and dont worry..she the normal one!
And the pretty one, and the smart one, and the skinny one...but don't let her cook for ya!!! (unless her skills have vastly iproved in recent years, as I recall her having issues with boiling water!)
On another note...
Please pray for the WHOLE Monica Family...the three closest people in Joes life are all in serious need of prayers. Two are in the hospital and one is neutropenic. Joe is stressed, worried, and in a general funk, understandably so. And pray for their wives, kids and loved ones who are worried, stressed, srtuggling with the circumstances.The Monicas are a mess right now...but everything WILL be OK..I firmly believe THAT...
Gotta scoot. I think we are doing bracelet day at the boardwalk with the kids and my two nephews. 10 kids on the boardwalk, unlimited access to all the vomit rockets their little hearts can desire.....
God give me strength.....
LOL
Love ya'll
Thursday, July 6, 2006 10:02 AM CDT
OK, I have been MIA for a bit! Sorry! I have been painting, spackling, sweating... I am impresed with myself! I replaced the front screen door and when the refridgerator died, (just in time for the heat wave...) I installed the ice maker/water dispenser in the door! I guess following my Dad around for 18 years and then working at the Home Depot for what seemed like an eternity really did me some good! Yes, I was a Home Depot Homer. I bled orange... drove a cherry picker and a forklift. Store 907..I'll never for forget it, no matter how hard I try.....LOL
The kids are at each others throaghts-it has rained 15 out of 17 days. And I have resorted to popping in my i-Pod as soon as Joe pulls up in the driveway, cranking up the volume and escaping. Between the paint fumes and the base line I can pretend I'm anywhere but here. Teeheehee.
Kylie...poor kid...her sleep study w/reflux probe will not be untill August...Somehow the July appointments were booked before Kylies name came up. Grrrrrrrr..... We are so pushed behind with all this I am not anticipating palate surgery for MONTHS.....That is the crap part about being so far away from LI. So she waits...
Ryan is cast free. He has a walker boot. Same as mine just mini size.
Baby Finn is here. My friend Heather S. is a mommy AGAIN!!!
This is an adoption so pray for them that it all goes smooth, pray for the birth mom too...what a selfless act. Wanting so much more for your child that you will give them to another to raise...Some may look at it as selfish, I look at it as selfless. Adoption is a tremendous responsibility, an even bigger gift. I know someone who adopted. It brought tears to my eyes when I found out. I always figured you would "know"...There was NO INDICATION. The love IS the same!!! Its easy to get pregnant (well not "easy" for some, but you know what I mean) but to make the choice to adopt....its "ginormous".
I have a special spot for those who adopt and have been adopted. So, prayers to the Stergos..Join their journey at www.caringbridge.org/visit/babyfinn
Congrats to Justin W. He graduated HS!!! He and his mom Lynn have been on this wacky journey thru CB land from the beginning. Jus had MAJOR heart surgery last year and then went to Disney thanks to the Marty Lyons Foundation (see link above). {{Visit him at www.caringbridge.org/nj/justinw}}
Who, by the way, gave me a dozen tickets to see a Yankees game in May to distract us from the trauma for Ryans accident, but Ryan and I BOTH had casts on our legs and there was NO WAY we could get up to our seats. I tried to pass them on to another family who could have used the distraction but it was too short notice. They are a awesome orginization and if you want to support a cause THEY ARE IT!!!!!
Hilary will be going to Las Vegas next week....hmmmm.....I guess I will find out if "what happens in Vegas stays in Vegas" is really true!! We never got together as I have had no van for over two weeks now...(yeah, try THAT...8 kids at home and NO TRANSPORTATION..grrrrrrrrrrrrrr)
I did see our 100,000th visiter in the GB. SHe will be getting a CD and picture of Ky with a handwritten letter of thanks from Ky for being a part of our cyber-life. (as soon as I contact her...SORRY!!!! I've been nutso busy!)
The same goes for Sandy at BandTogether.com. She has a delivery from us coming too! We did not forget!!!
I just need to replicate myself about 20 times to get all the stuff on my list done.
These updates get done over a three day span, between meals, fights, appointments, etc. Right now I am sitting in the front bay window with a cold cup of coffee (oops, now its empty and Jordie is smiling...) and a bowl of cherry pits...it was whole cherries when I started...I've gotten up 3 billion times. Wiped up yogurt, water, butts, dog yak, cherry juice, paint and coffee since I started this. Hence, the scattered thinking these entries consist of...
I have LOTS in my head, I have to go, but I wouldent be suprised if I update this entry by tomorrow!!
July 1st- Happy Indepenance Day!
Does this song just REEK fo Queer Eye for the Straight Guy? I can see them all skipping down the street to this song.
Just imagine the kids and I all dancing out back to this. Tyler Lee and I lipsynching it. Kasey, Jordie dancing like they are on a tv show. (Nigel would KILL US!!) Kylie singing at the top of her voice what she percives to be the words...Definate feel good, girl-power, get down and feel funky tune perfect for summer hook ups and break ups. Definately in touch with my Joysee, I love my Italian Stallion side with this one. The girls absolutely have me ROFL when they are in full swing. Had to add it to the page.
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Well, I have to say...if you can't beat em', join em. Alcoholics that is..I am counting the seconds untill the BUCKET O' MARGARITA in my freezer becomes a cool, slushy, happy, oblivious fog inducing concotion that will make my sticky floors look like hand polished oak,my toy and towel ridden back deck look like a balcony over looking the carribean, my rain filled green pool look like the crystal clear turquoise waters off of Honolulu. And my mass quantities of rambunctious, hyper, sugar crazed, dripping wet, perpetually hungry,bladder incontinent, poor, neglected, bored children seem like, well... like they are are on elephant tranqualizers. (wishful thinking..the tranqualizers should be for ME!!) Well, thats what the bucket of cranberry flavored happy juice is for. Really- how dose one expect me to survive the next two and a half months...I mean, seriously. I tried yoga. phhht. I just got stuck in a knot. I tried transendental meditation...yah right..that requires QUIET! I tried prayer and that has worked wonders....I pray to GOD that I dont KILL Ryan before his cast comes off. I PRAY that I dont take Kasey Mae and stuff her in a shoe box so I dont hear her whining, I PRAY that if that dog pees on my carpet one more time I will have the strength to not serve him for supper. And it has worked. But I need MORE....Illicet drugs are a definate no no, and all the coffee is giving me palaptations. So I really have tried everythign I can possible try before resorting to tequila. The way I look at it its their only chance at survival and I really REALLY love my kids, so if it means saving their lifes, well then drink I MUST!!! But its all for their benifit! I PROMISE!!
What a selfless Mommy I am. And I know salt is bad for my heart so I will rim my glass with sugar! mmmmmmmmmmmm....Any one wanna join me? In about two hours (5pm Joysee time) the floors will be washed, the dishes done, laundry is gonna get skipped today, and the hot dogs and burgers will be on the grill. If you know how to get here, the side gate will be open!!! just dont park in the driveway, I'm gonna back-wash the pool!!! The kids have the music blasting (Kelly Clarkson remixes)and we are gonna have a piniata (left over from the birthdays that all went to hell last week!!!)
Say a few prayers for my fellow Garden Staters who have lost everything to the floods, even their lives. Being on the shore we were not affected, but for lots of rain (remember green over filled pool?)NJ is in a state of emergency and things are crazy. Thank you to the National Guard who have come to help them and keep them safe. It reminds me how truly blessed as am, as usual.
It is the tenth day since school got out...here is the run down of festivities so far....
1. Two echos and EKGs for Kylie, one ER visit and a five hour appointment at Deborah Heart and Lung Center.
2.Kasey Mae had a cardiologist appointment.
3. Puke-a-palooza-followed by seven kids all open mouthed in the peds office getting throat cultures. Quick strep was neg on all, 24hr still neg. The suspected culprit? Good ole' Coxsackie Virus...gotta love it.
4. Charlie learned that flying is not a skill one is born with. However, bleeding is. And he did lots of it. His ear is now reminscent of that Mike Tyson /Evander Holyfield meelee. He being Evander Holyfield. Four stitches and 2 glazed donuts later, Charlie is back in action and we are a little more grey.
5. I myself spiked a fever yesterday to which I was cared for by 8 kids all piled into my bed. I dozed in and out to the sounds of Cartoon Network, Barbie.com, some Go Fish! And woke up to a billion trillion itty bitty beans from a Squish Pillow that somehow met its demise in the pig pile on my bed. That crud is IMPOSSIBLE to clean up.
6. Trio, our three legged turtle died...
7. So did all my watermelon plants...and my favorite little jasmine plant drowned and all its leaves fell off..grrrrr...
However, there were many GOOD things that went on recently...
1. MoJo-JoJo, the eldest of the 10, graduated high school!
2. Josh, the next in line, passed his lifeguarding test and is now an OFFICAL LIFEGUARD!
3. Kasey, Jordie and Cody celebrated birthdays !All within a five day span! (if is see one more stinking piece of cake in the next 6 months, I'm gonna hurl!)
4. A tremendously generous series of donations were given to the Cure Kylie Foundation, just in time for impending trips to Long Island.
5. Ryan had his full leg cast downgraded to a below the knee cast. Now he has a waterboot and can actually swim instead of gaze longingly at the pool.
6. I got my confirmation letter from Camp Sunshine! Woohoo! Maine here we come!!!
7. Kylies BCV is very functional right and of no signifigant concern right now.
8. Kaseys murmmur was innocent!!!
9. Katie is home! home! home! and recovering from her bone marrow transplant. Another of Gods miracles. Amy, who was transplanted last year is doing tremendous also!
10. I have tons of tomatoes!!! String beans!! And dozens of yellow flowers that will soon become zucchini!! I actually got to enjoy ONE strawberry before any one noticed its red ripe little butt hanging on a vine. Green peppers are starting to form within the white flowers. My basil and rosemary are EXPLODING! Everything is growing like crazy. THIS must be the theraputic part, seeing it all actually grow. The maintainence part stinks!
See? For every bad I have a good! And then some!
Sure, I still have a fever.
Yeah, the kids are driving me bananas...
As a matter of fact the kids are getting on my nerves so much I am ready to move to China where school is 12 months a year. But I just got me some spray on sunscreen and bug spray. That in itself just made my life signifigantly easier. And if my life is such that somethign in a spray bottle made my most difficult daily chore easier, then Praise the Lord, I have it good.
Thank you God for blessing my days and nights with trivial trials, and petty pitys. For giving me enough of a taste of the sour so that I can appreciate and value the sweetness. For showing me every day how much you love me by letting me see your wisdom and power workign in my childrens lives every day. And in mine.
An by the way, Hilary brought to my attention that we are nearing the 100,000 visitor mark! So....let me know who you are and we just may have a little somethin somethin special for ya!!!
Thursday, June 22, 2006 12:22 AM CDT
Good afternoon my dear friends, and welcome to summer hell with the Monicas....LOL Now really, summer is here, the pool is open, kids are sunkissed, school is out. And how do we Monicas celebrate the first day of summer vacation?? Well, I'll let you guess. Do we BBQ and cook smores over our fire pit? Noooooooooooo
Do we hit the beach and boardwalk and stroll like Bennies? Noooooooooooooo
Do we pack up our 15 passenger van and hit the forests of Maine for a week of camping? Noooooooooooooooo
HOW THE MONICAS SPENT THE FIRST DAY OF SUMMER VACATION....
Ryan puked on me..Yup... The flu is here in our house for the VERY VERY VERY first day of summer vacation... Ryan actually POWER HEAVED on me. It was quite impressive. All over Charlies bed too...Charlie was stunned, I was stunned, Ryan was stunned...Grrrrrrr....So, strip the beds, wash the kids and myself, and back to bed...Next morning- the second day of vacation, and boy, was I ready to start the fun. So what did we do? Tyler puked...yup..she sure did..yeehaaaaa....OK next day, Jordies birthday!! Lets have a little party by the pool!!! NOT..Jordie celebrated her 5th birhtday with the flu, in my bed under the covers, with the air on and tylenol coursing thru her veins...Boy, do we Monicas sure know how to paaaaarrrrtaaayyyyy!!!! (Friday we will have cake and balloons for her and Cody)
BUT...it is every intention of ours to in fact get some Boardwalk time in, shmos (smores) over the fire pit, and even a trip to Maine. Kylie is scheduled to have some studies done in LI soon, just waiting for the exact date. And this year is the year DBA is recognized at Camp Sunshine. Because its so rare we only get to go every other year. This will be our first year ever going. A week with 29 other families who have been impacted by DBA. I am welling up just thinking about it. My dear frind from Canada will be joining us a few days before camp and staying at a hotel near by. The are gonna hit Six Flags Great Adventure, Seaside Hights and the Monica Insane Asylum before we all caravan it to Maine! I've got goosebumps!!!
Kaseys visit to the cardiologist was fine. Innocent murmmur!! Whew!!! THanks for the prayers!!! Kylie was in Deborah for 5 hours on Tues. She has some high pressures from her bi-cuspid aortic valve, nothing to worry about just yet. Her aortic arch has the high pressure too. They did not see any narrowing so it may just be the follow thru pressure from the BAV. HOWEVER.... it has been recommended to us to get the WHOLE FAMILY an Echo..BAVs run in families big time...I can't wait to hear Dr.Zales secretary say you need HOW MANY ECHOS???? LOL Well, Im sure hes got lots of bills that need paying and we are here to meet that need!
Ryan fell in the pool with his cast this morning. It was only a matter of time. Suprised it took this long.He has to go for a new one ASAP...like in a few hours!
I planted a garden this year.THERAPUTIC MY A**!!!
I am weeding, hoeing, watering,clipping, transferring. There are cages, vitamins, fences. I see one little green tomato and Im all..Yippee!!!! A while later Charlie come to me "Look Mommy, a bally!!" Nope...not a "bally"..that WAS my very first tomato of the season...WAS..And did you know that if you bite a green strawberry on the vine it will continue to ripen and get red? Believe me..I know. All my strawberry pots are full of red, 1/2 eaten strawberries...still on the vine.
Hows this for weird...the other day I was driving and a bird flew into my windshield...on its own, nothing too unusual but a few hours later I was home and Ryan started shouting HOLY COW MOM!!!! MOM!!!!!! I went runing expecting to see trauma, blood, organs even, all over the living room floor...Nope, he had just watched a bird fly into the big bay window out front... {{insert Twilight Zone Theme}}
Next up, I got a call from Michelle Fancis, at Wachovia, the woman who helps me with the Cure Kylie Fund. She left a message that I had some checks sent in and wanted me to call her. We played phone tag for a few days. Usually If a donation comes in, she deposits it. She usually calls me with the address so Ky can send a thank you. Very secretive she was....so finally today I stopped in to see what was up. Well, let me tell you, I think she was gonna pop as she waited to tell me what had happened. I told you all way back when how a Catholic High School Spanish Club had made Kylie their little project. They had bake sales, candy sales and they are the ones who connected us with Master Coyne and Ma'am Trish for the Cure Kylie Kick-a-Thon. A parent of a student had reached out to us a while back asking about Kylie. They had run fundraisers in the past and ware interested in helping. I gave them her website, told them about Pay It Foreward and about Ky and that was it. If they were able to help I would be greatful, if not, God bless, thanks for asking and a prayer here and there is more than enough. It was litereally months ago and I completely had forgotten about it! Well, there was a lot more than a prayer deposited into Kylies account today. I was shaking. I was crying. I think Michelle was crying. We were desparately worried about Kylies upcoming trips to Long Island and her Cleft Palate Surgery is going to be major. The van is wrecked from all the LI trips in Jan, Feb, March and April. I knew if I tried it one more time I was going to be hitchiking on the GWB...I have actually been delaying a very much needed trip to LI because of the van. Well, tonight the van goes in for a few days at the Moto-Spa. It needs a complete work up...And I will schedule Ky for a visit to LI for next Mon or Thur. So, everyoen put your hands together for Mr. and Mrs. Joseph Fattorusso. WOW....Thank you a billion times over. Trillion times...a Gagillion even. From Ronald Mc Donald House for Kylies Cleft Surgery- to gas, tolls, Joes time off work (if he can get it off, according to HR he has like 7 hours protected time left...grrrr FamilyLeaveAct stinks in NJ) medical bills,Not to mention the care packages we will be sending out ASAP!!! The donations came at just the right time and will go to all the right reasons.
If anyone knows a kiddo having a bone marrow transplant let us know or have their parents contact us! Everyoen needs a little cheer up now and then, especially a family with a sick kiddo!
Plase say a few prayers for Joes Dad. He is in the hospital. Neutropenic. Another tumor and all the mess that comes with cancer. Heck of a way to spend his birthday. So, good thoughts his way please.
Man have I rambled today. I need to skedaddle and shovel out the van before it goes to get fixed. If i don't chances are I will see it on he news when the National Guard is called in to the garage where it will be after the mechanic sees the biological hazzard of goldfish crackers, juice boxes, shoes, toys and suck that somehow mutated into somethign similar to The Blob and tries to eat all the guys at the dealership...Ahh yet another day in the life of the Monicas....
P.S. Made the mistake of sharing my favorite joke as a kid when we were watching The Pink Panther with Steve Martin last week. Now I hear it a hundred times a day. Ryan laughs as if its the first time each time....Grrrrrrr....
What did the Pink Panther say when he stepped on an ant??
(to the theme of the Pink Panther)Dead ant, dead ant, dean ant, dead ant, dead ant, dead ant, dead ant......
Now I will not be alone in my chronic humming of the theme over and over and over in my head...
Friday, June 16, 2006 5:30 PM CDT
I am going to write this post offline so I can take my time. I've got lots to say...
First off, Jacob and Will are home. They are cured, free from their pain and their imperfect worldly bodies. We used to call them superhuman for all they fought, now they are supernatural, beyond this chaotic planet we all muck around on every day. We all can write, speak, sing, think of what a better place they are in, in an effort to support their hurting families, but the reality of it all, at the end of the night, when those Moms and Dads go to kiss their munchkins, there is one less... their pain is immeasurable. Physical. Mental. Spiritual. There isin't much lower a person can get. So lets direct out thoughts to them, that they somehow, someday, find peace with their childs passing and that they also find the strength to carry on their childs powerful legacy. Their little lives made a grand impact on this world and that should be celebrated and pased on thru the generations, so that those ahead never forget the power of prayer, faith and unconditional love.
Next up...band-together....that awesome company that made the CURE KYLIE bands for us had yet again far exceeded the industry standards for customer service...remember when I put out the call to all the Cure Kylie Fans to help me find a gift for Kylie to give Jordie for her one year Transplanniversary?? Well, I got quite a few responses and liked every one of them but one stood out to us as somethign that we knew would most suit Jordie...and this was it...
HOW AWESOME IS THAT????
We recieved them yesterday and boy, were the girls excited.
We wil be sending out some nice pictures and a cool CD to the folks in Wa. at Band-Together.
I will have to finish this later but I want to get the pics up on the page ASAP... I will be back...
Monday, June 12, 2006 8:00 PM CDT
It is with a very heavy heart that I pass on the news of Jacobs
passing. Today I cried for a little boy I never met, I cried for a Mom and Dad who will never kiss their little man goodnight, smell his sweet breath, hear his laughter... I was planning on changing the music today, I just never thought I would be using this one to express my state of mind...please visit the The Duckworth Family
Share with them Gods Grace, His Wisdom and His Glory. Help them find peace with Jacobs
passing and help carry the weight of their loss.
Kiss your children every night, tell them you love them a hundred times a day. And when you think you have said it enough, say it a hundred times more.
Blessings to you all....
{{New update-Less than an hour later...}}
Oh my God....I just checked on another litle soul I pray for, Will and he too has earned his sweet alabaster wings today...what a sad day on earth but the Angels just increased in numbers by two today... Please visit the The Poteet-Berndt Family and share your prayers with them too. This was a desparately sad day for two amazing families. My chest actually hurts with the tremendous pain I am feeling for these families. It brings back floods of hospital rooms, vents, ambulances from the past few months. And I count my blessings.
Now I will go and kiss the babies AGAIN...and again...and again...
Saturday, June 10, 2006 5:59 PM CDT
Well, this past week has been nutso. Kylie was in and out of the hospital, cardiologists, etc. She has been having chest pain and dizziness...Hmmmmm....Nothinng was found on the EKG, other than stuff we already knew. But her Aortic Valve is Bi-cuspid, (which we knew) rather than Tri-cuspid and it is not completely opening and it should and is thickening...So we are making arrangements for her to be seen at Deborah Heart and Lung Center, a hospital on the border in NJ/Pa that specializes in ONLY hearts and lungs.
Ryan and Charlie both had yearly physicals as well as Kasey Mae and Jordie. The boys went fine, the girls not so well...Jordie is having a terrible reaction to one of her shots, her arm is so swollen she cannot move it w/o crying, it even hurts to look at. If it is still bad on Mon. the Doc said we have to go back.... And Kasey...sweet Kasey Mae..next Wed. she will have to go to Kylies cardiologist as her Ped noticed a murmmur that he felt was not benign in its nature.and when you have one CHD kid, your odds for more than one are greater then normal..grrrrrr.....I am so sick and tired of my life being so full of tragic stuff, lets hope for the best for sweet Mae.
So, it was a full week here. Joe has to work this weekend the kids are all ready for summer to start and I am ready to sink myself at the bottom of the pool just to get some peace and quiet. They would find me down there too... Tues Ryan goes for a new cast and LIJ is working on Kylies appointments for her scans and studies...They cant take her untill July, that much I do know now.
Katie is doing terrific. What a blessing for her family! She had a WBC count and an ANC count!!!! WooHooooo!!!!
www.caringbridge.org/visit/katietrebing
Jacob is having troubles, despite everyones heartfelt prayers. There is a Prayer Vigil Sunday night for him. We will be a part of it, Please join us...
www.caringbridge.org/fl/jacob
Love to all...
Keep Kasey in your thoughts...
Hils post AND some of mine!
Where in the World is Heather?
Is she sunning on the beaches of some tropical island while her perfect children build perfect sand castles, under perfeclty clear skies, while her perfect self and her perfect husband are served perfect Pina Coladas by perfect Cababna boys and perfect beach bunnies???
Is she investigating deep ancient tombs in the City of The Dead, taking Pulitizer Prize winning photos of the local Egyptians, and previously undiscovered artifacts?
Is she camping and fishing for Fresh water trout in a canoe in the center in a glacial lake, surrounded by the Rocky Mountains snow tipped caps, 300 year old pines, and not a sound in earshot or a soul in sight?
Is she hiking in the Bush led by an Aborigonie tribesman taking yet more prize winning shots of the wonderous and mysterious creatures known only to that part of the world and making her own Dijiereedoo?
Or even better yet, is she at a secluded spa, getting hot rock massages, sea salt scrubs and seeweed wraps, manicures and pedicures, Lasix eye surgery, and having fresh Cappucinos and lattes and croissants and fresh fruits and Bree for breakfastf and fresh Chicken Ceasar and balsamic vinegatrette Mesculin salads , shrimp the size of newborns, and Prime Ribs so rare they are still mooing, for lunch and dinner??
NOT EVEN CLOSE...
No, in fact I am sitting in the basement watching Charlie play "Armies Men" with four dismembered figures he has colected in his travels this past week or so. One was on the beach or in a parkinglot somewhere before we noticed his death grip on it . We are soooo aware of our three olds activities-heck I had to ask HIM when the last time her got a tubbie was, one of the joys of having the pool open! One was in an egg from a Boardwalk Claw game (what a rip off) and two he found in the backyard after I slopped the crud off the pool cover and drug out 4 billion pounds of gunk from the bottom of the pool. Yeah, we closed the pool in late September. It was fairly gelatinous and fetid BEFORE we covered it, so imagine a whole winter for it to continue to coagulate. I am fairly certin we created a few new species in there. Anyway, back to where I ACTUALLY am. I am on the couch and for the first time since the night Ryan was hit, in BOTH sneakers (well one is sooooo loose there in no left over shoelace to tie). My cam walker boot is off since there seems to be no resolution or relief with it. I was treated to a Cortizone shot IN MY TOE...ewwwwww...and OWWWWWW....
I have spent the past week turning our science project out back into a crystal clear swimming extrvaganza. In an effort to save cashola, I figured if my pool guy can open it without risking death, then I too should be able to manage. And believe me, if you ever say my pool guy, you would probably be shocked that he can manage to walk without killing himself! I knew we had no money to spend the openeing service, and the vast majority of the chemicals we already had. Our electric is now on a budget and the summer increase is already calculated into out monthly bill all year round, SOOOO, the opening and closing are the only real expence that we incurr. And the money saved by not having to entertain 8 kids in the dog days of summer is well worth it.
"Moooooooommmm, Daaaaaaaadddddd...we're HOT..take us to the water park!!! Our response will be "Heres a rubber sheet, take the hose, a few water guns, and a couple of buckets and go out back...just dont drown or break a neck, but first sign this waver..."and "the music will be provided for free, just dont complain about the XM 80"s stuff or I will put on the Geriactric Preparation H Hotline talk show , if you need a towel, a drink,ice pop, or bathroom privelidges make sure you have the cash!!"
friends are welcome to join after signing the same waiver, and listening to my speech on pool saftey...
"If you in fact get hurt or drown, I will drag your body out of the pool, dry you off and toss you over the fence. When the police get there I will have NO CLUE WHAT HAPPENED TO YOU..Capiche???" and then the piece de ristance...I write the words "OUR OOL" in a peice of paper..then I say "What do you notice about our pool???" First they are stumped ...then a smile cracks, next they are trying the answer w/o spitting all over themselves... "THERE IS NO P IN IT!!!!!!" Get it?? NO P..Pee??? I have them scared stiff that I keep a special chemical in the pool that if they pee the water will turn bright red around them and stain them and their suits...I love it!!!
Anywho..Last weekend we were graced by the presence of Hilary W. Loyola Girl, Kylie Jae fan, soul sister all smushed into one skinny package. She came, she saw, she SURVIVED three days and two nights in Casa De Crazy here in Toms River, NJ. We caroused the boardwalk and thruoughly entertained ourselves with the Circus Freaks and Alien Lifeforms that pose as tourists here "Down the Shore". Its "The Season" to dress up(or barely dress at all) in what can only be described as costumes of some sort ment to confuse and encite the feeling of "shock and awe" in those unfortunate enough to cross their paths on the over croweded, weather beaten, wooden slats known as "The Boards". From the guys that somehow have foregotten how to button their shirts (why bother putting one on??) To the girls who seem to have a visual disorder that tells them the size 6 they are wearing really really looks sexy on their size 14 body. Then there are the guys with the polyester madrass shorts with flip flops and black socks and guiney-tees or the girls with gold lamme capris and a sequince studded tank top that reads MILF streached over her hugely swollen , due any day now, tattoed belly, who dosent care if anyone stares at her taking drags from her boyfriends cigarette! Oooo, heres one, how about the people with the FAKE tatoos??? Tattoos are a personal choice, honestly, but at least reaslise that a FAKE tatoo LOOKS FAKE and in no was gives one a sence of "coolness" that one renders froma real "tat", it looks silly, even sillier when it peels off and slips down the crack of your barely there bikni bottom and looks like a huge stain on your derrierre! Yikes!! Thats a tale to tell the grandkids!!! I am a bit frustrated with the Boardwalk scene and it has fase become a very Family Unfriendly Place. 8 person beer funnels hang from stands as prizes, little botiques pop up all over with Club Wear (floss, sequince, and somehow the words "I love my Italian Stallion" or "I'm a bitch" is somewhere on a butt or boob area.) Tyler Lees birthday was Monday and we strolled the boards for a bit. She was on a mission for some cute earrings and came across some sparkly dangly ones...as I got closer I felt an uneasy sence of reality as I knew I had to explain to her it was not an earring ment for an EAR...thinking I was going to stun her little mind and explain people wear these in their belly buttons, I got quite the shock when she said "I know, I just like them." Grrrrr....at least she saved me a stroke when she went on about how stupid they are and why would anyone DO THAT??? Tyler is not into pain. When she found out where babies come from, she made it VERY clear that a grandchild from her was not an option.
Things have been a bit frustrating with Kylie, seems we have a very busy summer ahead of us with her. She needs a sleep study with a reflex probe and a repeat swallow study trying solid food. Also a swallow study to look for a T-E fistula - Then of course the new surgury to repair her palate. The studies are being scheduled for one visit between June 15th and July 15th...I dont want her to miss any more school and we have Camp Sunshine in July. The palate surgery will be done after camp, before school starts, well, thats what I would LIKE to happen....
She eats it, it comes out her nose..I have bagged the G tube feeds since she gets terrible dumping and diarreha, wacky blood sugars and tummy pains. I will keep the tube until after tha the palate surgery then I myself, will take her tube out and burn it in effigy. We will all dress in grass skirts and coconut bras (boys included) and dance under the full moon around the fire pit while we chant the "No more G-tube" song.
Hope the neighbors dont complain....grass skirts dont go over well in the clink.
Gotta scoot, the Monica bus needs to make its scheduled morning run to school and drop off a few kiddos. Sorry I've been MIA, I just had to post somethign so no one thought I quit! Love to all, THanks Hil, I was laughing till I cried..June looks pretty open to me!!!
Hello to all Kylie Jae and Monica family fans,
This is Hilary making a return to Kylie's page for a guest-update. Now before anybody panics, don't worry - no emergencies have popped up that are keeping Heather or Joe from updating. Team Monica is, in fact, in full swing...and I can vouch for that since I just returned from the eye of the hurricane a few days ago! Yes, I voluntarily signed up for "Survivor: Monica Edition" and accepted the family's gracious invitation to spend part of Memorial Weekend with them. Unbelievably, I had never spent more than a few consecutive hours with this crew until this past weekend, and it is my understanding that I am now part of an elite group who has entered New Jersey's version of the Bermuda Triangle for an extended period of time and lived to tell about it! With that in mind, Heather suggested that I take her place for this week's update and give MY impressions on what life is REALLY like in the Monica house with eight kids, two parents, and a couple of dogs. Brave woman, huh? I guess when I didn't run screaming from the house she figured it was safe to turn over control of Ky's page!
In actuality, I'm about to rat out a secret. Something that I strongly suspected all along, but again, am told that few actually believe. Life in Casa de Monica is CRAZY (that part is not surprising), but it is also lots of FUN (that's the part that seems to escape some!) Sure, it's possible that I'm just nuts or have been so numbed by living the dorm life in college that my threshold before mentally losing it is greater than most, but I doubt it. For me at least, it was a great time - witnessing the opening of the backyard pool for the unofficial start of summer, swimming, BBQ on the deck, a Monica Family Fun Night featuring a showing of "Cheaper by the Dozen 2" (appropriate choice, don't you think?) and taking in the PACKED boardwalk on Saturday evening. In between it all, I did manage to take a few mental notes to share with you all as helpful hints, should any of you be fortunate enough to spend time with the Monicas in the near future.
*Be prepared to have your sleep schedule turned upside down. If you think you are invincible just because you have, say, mastered the art of staying up all night to write a paper and can still function the following day for classes, you are absolutely, positively, unequivocally WRONG!!! You WILL be jealous of Charlie when his parents send him off for a late morning nap. You WILL give in to the pleading of Tyler Lee (who, as the pictures will show, has become my very own personal Mini-Me…and I love her dearly!) to jump into the deep end of a freezing pool not only because she's incredibly persuasive and because it's incredibly hot outside, but because it might just wake you up and give you a second wind (and it does!) You WILL decide it's a great idea to get up at 6:30 AM when you hear the pitter patter of little feet looking for their swimsuits and then later wonder what the heck you were thinking.
*If you have a choice of food at meals, pick whatever is easiest to eat with one hand. That way, you can have one kid on your lap AND one on either side...but if you care about actually ingesting your meal, let Kylie sit next to you as opposed to on your lap, where your food winds up sitting temptingly in front of the One Man Slaughterhouse. She WILL polish off her meal before you are half done and dive right into yours!
*Do NOT put any food in your mouth if you have reason to believe that either TJ or Cody is about to tell a joke. They may be ages 10 and almost-9, but boy, these kids are funny, and the stuff that they come up with may seriously impair your ability to digest.
*Jordyn is very particular about her choice of swimsuit; thus, mid-day wardrobe changes will occur if no adult is paying attention. On a similar note, Monica washers and dryers really and truly run all day, with loads going in consistently right up until bedtime. Both mornings, Joe was literally folding the laundry from the day before while the kiddos were picking out that day's bathing suits - sometimes the ones fresh from the dryer!
*If Kasey Mae has gum in her mouth, pay close attention to where it ends up. I was spared, but this girl is dangerous with gum. And scissors. DO NOT leave scissors in her eyeline, because she will find something to cut...if Mom has already fixed her attempt to trim her own hair, she will take a snip at a stray YuGiOh card (don't worry TJ, Cody, and Ryan - scissors were confiscated before any damage was done!)
*Charlie will throw ANYTHING in the pool. If he can hold it and you like it dry, keep a watch on it!
*While you are watching things, watch the bowls of dip on the deck table that were set out for the Tostitos. Ky, Jordie, and Mae love their play kitchen, but a concoction of salsa, ranch dip, water, and who knows what else is NOT a pretty sight!
*If you want to witness the making of a future heartbreaker, spend some time with Ryan. This kid will wrap you around his little finger. My mom came to bring me home at the end of my stay, and Ryan proclaimed that he didn't want me to go. She asks why not...his reply? Puppy dog eyes and a "Because I LOVE her!" At this point I was practically a puddle on the floor. Plus he has plenty of flattery for all the women in his life...we watched the VH1 Saturday morning video countdown together...Heather, you may be interested to know that you apparently bear a striking resemblance to Mariah Carey.
*Superman may be faster than a speeding bullet, but he's got nothing on Cody walking in from a day at school to realize that his mother's therapeutic pool skimming, scrubbing, vacuuming, chlorinating, and pump-fixing has turned the hole full of black sludge into a fully functioning pool. Blink and he's not only in a swimsuit, but he's diving in headfirst!
*If Jordie asks what exactly is in the black pouch she found in your purse, think before you answer "make-up." In the split second it takes to realize your mistake and whirl around to guard your possessions, she will have decorated both cheeks with concealer. Body spray, however, is a good substitute that's far less messy - not only will Tyler, Kylie, Jordie, and Mae line up for spritzes...but Charlie will too!
I could go on and on and on, but I think that's a good "starter" list for all of you! Now, here's a little quiz: anyone notice anything missing? Anything that you normally find on a CB site that's just not included in this entry thus far? Okay, time's up, pencils down: there is no mention of illness, injury, or any of that cruddy stuff that keeps sneaking into the lives of this truly awesome family. That's not because I deliberately wanted to make a happy-go-lucky posting for all of you; it's because if there is one thing I have observed about this family, it is that they are absolutely NOT about spending their time dwelling on sickness and sadness. They are much more invested in loving one another, laughing together, and enjoying each other no matter who is making who crazy at a particular moment in time. Yes, Heather's got a nice black orthopedic boot for that broken right foot of hers. Yes, Ryan has a broken leg and has his moments of being downright bummed while his siblings run and swim. Yes, the rest of the crew is still dealing with the residual pain of seeing what happened to Ryan on that terrible day. And yes, Kylie is more than one year post STC and is now awaiting a solution for the food that keeps escaping from her nose. Is this all something that the Monica fam is throwing themselves a huge pity party over? Not by a long shot. In fact, as I sat on the deck on Saturday afternoon playing “I Spy” and munching watermelon with Ky, Jordie, Ryan, and Kasey, Jordie casually says to Kylie “You have watermelon coming out of your nose.” I ask Ky to turn towards me – why yes, she does. Get some paper towels, alert Heather and Joe…Kylie blows out the residual melon, Joe issues a gentle reminder to take the eating slowly, and Heather fires off an e-mail to Ky’s doctors. “I Spy” quickly resumes. Is the frustration there? Yes. Is that the focus? HECK NO.
I’ll tell you one other thing the focus is on – the “Pay It Forward” program. This initiative is the Monica family’s mission, and believe me, they don’t rest until missions are accomplished! So please, get involved if you can! Remember Katie T. at Sloan Kettering, who just received her very own Stem Cell Transplant for DBA last week (her info is in the journal history and a link to her page is up top…and if you miss Heather’s writing after sitting through the novel I’ve come up with here, check out what she has cooking in Katie’s guestbook…and leave a message of encouragement for Katie and her family yourself!) While you’re praying, please remember Amazing Jacob in Florida…he and his family could really use your prayers right now. He is such a miracle…much the same as our very own Kylie Jae – the kid who, despite all of her issues and all that her prognosis entailed in the past, was the first to stand on the side of the pool and jump right in this past weekend! Join Jacob’s family in BELIEVING in his healing…prayers really do work.
As for me…well, my big soul sister Heather generally has a freakish ability to keep her finger on the pulse of what is going on with me, but this time she may have gotten it wrong. She insists that I should be ready to check into a mental institution right about now…but isn’t one of the signs of insanity all the voices in your head? Well, to tell the truth, I MISS the voices in my head! “Hilary, will you push me on the swings?...Hilary, can I have some water?...Hilary, watch me jump in the pool!...Hilary, is it my turn to use the goggles?...Hilary, can I wear your shirt again today?” And it goes on and on…so Monicas, I distinctly remember being invited back for some beach days…hmmmm…what’s the schedule for June looking like? :-)
Love to all,
Hilary
P.S. Heather, I’m leaving the photo portion of the update to you…attempting not to completely bore your faithful readers was pressure enough! And to the faithful readers – thanks for putting up with me!
Thursday, May 25, 2006 8:41 AM CDT
Do I make you proud???
Well, thats weird, CB keep making my updates disappear! At about 9:07 PM last night I updated about Taylor Hicks..Whoo WHoo!!! Get the Soul Train rolling!!! I called that one in January...Everyone called me nuts, all said NO WAY, NEVER!!!! To all you non believers out there (Simon included..)This is a perfect example of how you just gotta have faith!!!
TODAY IS KATIES BIG DAY!!!!
Please say a prayer for her baby brother Christopher who will have his periferal stem cells harvested today. A prayer that the infusion of stem cells settle in and proliferate like nuts. And a prayer that her parents can keep their sanity today. having one kid to worry about is enough but to have TWO kids in a precarious situation...now thats stressfull, not to mention their third child who is at home without his brother and sister and Mom and Dad wonderng what the heck is going on...Tough day for the Trebings today but hopefully the last tough day they will ever have to have (other than the enrgaftment process)
Katie Trebing, a super-soon-to-be-DBA-free kiddo.
Katie started her transpalnt and on Thursday she will recieve her little brothers stem cells and start a whole new world, DBA free..
Now here is where I really need your help,please- anyone out there who knows about Kylie , knows how we make care packages for kids having transplants. So far we have been limited to just Schneiders (and one wickedly awesome kiddo in sunny Ca.) but our plans are much grander. THis coulld be a start-I would GREATLY appreciate it if any of our wonderful, amazing friends would send
Katie a little treat...her address is
KATIE Trebing
MSKCC
Rm 935,
1275 York Ave,
NY NY 10021
Mark it somewhere, Pay It Foreward or Friends of Kylie Jae, or something so Katie and Mom know these packages are coming from friends of Kylie Jae. Strange packages from stranger can be a little weird!!! LOL
She can receive everything except flowers and balloons!
Monday, May 22, 2006 11:17 PM CDT
Good evening-Ryan went back to school today, nearly two week after we thought we lost him forever. holy crap that was horrible...he is fine, he can't remember a thing...the rest of us are stuck with that memory forever though. the little rat keeps saying, "ahhh this is the life" as we wait on him hand and foot. Good thing he went back today,lest he end up with TWO broken legs. Charlie has had it with his insisting he is intitled to EVERYTHING because of hwat happened...We were at a Nursery today ( i am attempting a garden, therapy of sorts) and I asked Tyler Lee to escort Gimpy back to the car while we waited in line to pay for the lettuce, beans, strawberries, cabbage{??}, watermelon and jasmine. Well, she got way to ahead of him for his walker stumping abilities and he shouts out (in the middle of the inside part as LOUD as possible) WHAT?? Do you want me to get hit by a car AGAIN?? This time I'll get killed!!!!!!
Everyone stops and turns and looks at him, then at me and I start looking around like I'm looking for his mother too! teeheehee
Also,please visit
Katie Trebing, a super-soon-to-be-DBA-free kiddo.
Katie started her transpalnt and on Thursday she will recieve her little brothers stem cells and start a whole new world, DBA free..
Now here is where I really need your help,please- anyone out there who knows about Kylie , knows how we make care packages for kids having transplants. So far we have been limited to just Schneiders (and one wickedly awesome kiddo in sunny Ca.) but our plans are much grander. THis coulld be a start-I would GREATLY appreciate it if any of our wonderful, amazing friends would send
Katie a little treat...her address is
KATIE Trebing
MSKCC
Rm 935,
1275 York Ave,
NY NY 10021
Mark it somewhere, Pay It Foreward or Friends of Kylie Jae, or something so Katie and Mom know these packages are coming from friends of Kylie Jae. Strange packages from stranger can be a little weird!!! LOL
She can receive everything except flowers and balloons!
Its late and I need sleep-but thanks for keeping up with us.
blessings-H
Monday, May 22, 2006 11:17 PM CDT
Good evening-Ryan went back to school today, nearly two week after we thought we lost him forever. holy crap that was horrible...he is fine, he can't remember a thing...the rest of us are stuck with that memory forever though. the little rat keeps saying, "ahhh this is the life" as we wait on him hand and foot. Good thing he went back today,lest he end up with TWO broken legs. Charlie has had it with his insisting he is intitled to EVERYTHING because of hwat happened...We were at a Nursery today ( i am attempting a garden, therapy of sorts) and I asked Tyler Lee to escort Gimpy back to the car while we waited in line to pay for the lettuce, beans, strawberries, cabbage{??}, watermelon and jasmine. Well, she got way to ahead of him for his walker stumping abilities and he shouts out (in the middle of the inside part as LOUD as possible) WHAT?? Do you want me to get hit by a car AGAIN?? This time I'll get killed!!!!!!
Everyone stops and turns and looks at him, then at me and I start looking around like I'm looking for his mother too! teeheehee
Also,please visit
Katie Trebing, a super-soon-to-be-DBA-free kiddo.
Katie started her transpalnt and on Thursday she will recieve her little brothers stem cells and start a whole new world, DBA free..
Now here is where I really need your help,please- anyone out there who knows about Kylie , knows how we make care packages for kids having transplants. So far we have been limited to just Schneiders (and one wickedly awesome kiddo in sunny Ca.) but our plans are much grander. THis coulld be a start-I would GREATLY appreciate it if any of our wonderful, amazing friends would send
Katie a little treat...her address is
KATIE Trebing
MSKCC
Rm 935,
1275 York Ave,
NY NY 10021
Mark it somewhere, Pay It Foreward or Friends of Kylie Jae, or something so Katie and Mom know these packages are coming from friends of Kylie Jae. Strange packages from stranger can be a little weird!!! LOL
She can receive everything except flowers and balloons!
Its late and I need sleep-but thanks for keeping up with us.
blessings-H
Friday, May 19, 2006 8:31 PM CDT
I know it seems like I have vanished into thin air. And I truly apreciate the well wishes in the guestbook, the e-mails, and even the phone calls. And I truly apologise if it seems like I am ignoring everyone. I am just kind of in hermit mode right now. I was pushed past my limits with Ryans incident. Images of him haunt my sleeping and waking moments. Seeing him having seizures, that grunting, his arms and legs all twisted...It was horrific. And I did fail to mention that as I was running in a panic once I heard the screams of terror from Joe and the kids, I broke my foot. So between Ryan in the hospital and his doctors and MY doctors appontments,my bone scans etc., I have been overwhelmed. I cant drive as it is my rt foot, so Joe has missed tremendous amounts of work. This whole ordeal has really affected our family...and we are literally trying to mend our wounds. Physical and emotional.
Heather- Ryan loooooved his care package! Thanks a billion.
And folks, please pray for my friend Heather who is in the final phases of preparing to adopt baby Finn. This is an amazing friend and mom (with a Charlie too!)who has been given an opportunity to have another baby, something she thought she had to give up on. She prayed on it, had faith and God has rewarded her with this miracle.
And Hil- how does Labor Day weekend sound?? I did not forget about your vacation at the Monica Insane Asylum.
Ms. Pam- yet again another lovely treat for Kylie- she was coloring with Ryan out back today. ANd your book is a constant repeat read!
Ms. Vecchi (is it still Vecchi???)I was so happy to see you have not given up on theis crew. We certinly think about M F Stokes often.
Gotta go, tonights family night is a little subdued...
Hoodwinked with the babes and When a Stranger Calls after bedtime!
Love to all...
new update
There are many of you readers who are locals to our homeown who have heard on the radio or have seen on the news that we had a tragic accident in the Monica household. While riding his bike outside with his brothers and sisters and all the neighborhood kids Ryan, our 5 year old son, was struck by a car. After the immediate impact, Ryan was unconscious, seizing and posturing. His tiny body, in what seemed to be, an impossible jumble. Joe stablized him while we waited for the Paramedics and First Aid. He was taken to Jersey Shore hospital, our regions Level 3 Trauma Center. He was admitted to Trauma, where he recieved x-rays, CT scans, and IV fluids. He was found to have suffered from a tibial fracture and a concussion. As much of a blessing as these things are, considering what COULD have happened, he is stil hurting, scared and traumatized. He is in a cast from his toes to his hip for the next 8 weeks or so and is still easily fatigued and sometimes a little confused. He can only meneuver with a walker and his tummy is very sore where his belly hit the handlebars. All of the kids wittnessed this tragic event and are all traumatized. They cannot sleep, keep crying at the drop of a hat and just basically horrified. I ask that you all pray for the kids and Joe and I as we recover physically and mentally from this.
Whew...what a whirl wind week it was...Meetings at school, a wasted trip to LI, a one year TRANSPLANNIVERSARY, two First Holy Communions....and the flu! Yep-THE FLU What usually lays us flat for the month of February has delayed itself untill May. The victims so far? Ryan and ME!!Up next? Tyler is feeling squeamish and Kylie seems warm this morning, so your guess is as good as mine!
What better way to celebrate Kylies One Year Anniversary on May 5th than in Cinco De Mayo style. We went to a mexican restauraunt ON the boardwalk. The kids had chicken and cheese quesadilias and fried ice cream. We had discussed with our waitress about what we were celebrating and she thought it was wonderful. For a suprise (to us all!!) after dinner they came out with three fried ice creams (one had a lit candle in it) and they sang Happy (re)birthday to Kylie in spanish while she wore a sombrero big enough for her to take a tubbie in!!! She was soooooooo excited!!
We have a tradition in our house, at dinner time we go around the table and discuss what we learned that day, what we were greatful for, etc. and there is always one person who is highlighted that evening and everyone has to say somethign nice about them. Well, that evening it was all about Kylie.
I wrote down everyones answers, here they are:
the question was "what do you love about Kylie Jae Monica-Super Kiddo??"
TJ said "I love her squeeky mouse voice."
Kasey Mae said " She lets me go in her room."
Tyler Lee said "Shes smart!"
Cody said " I love her laugh and her smie."
Daddy said " I love her smile and how she is the littlest strongest person I have ever known."
Jordie said "I love that she sleeps in my room sometimes and plays school with me."
Ryan said "her smile is funny, good funny not funny, funny."
(oddly enough I understood that!!)
Charlie would not say a word...he just smiled and ate his fires...that little twerp...if he makes it to June 2nd and turns three I will be stunned...
and me...what do I love about Kylie????...there is soooooo much.
I love her honesty-shes the first to fess up and tell you she farted.
I love her sense of humor-after she farts and tell you she farted, she then laugh riotously at herself.(also the same reason she had cucumber in her lungs-never eat cucumber, fart, laugh and talk about it all at the same time!)
I love her wisdom-she can't be bribed with candy-but money talks every time!
I love her determination-If her goal is to get Skippy in a dress, dammit, she will stalk that dog all damn day untill he's either sleeping or too exhausted from running away from her. She will hogtie him if necessary, she will call in back ups like Jordie and Mae. Charlie is used to stand guard to notify them if anyone who might be opposed to cross-dressing Skippy is coming. But at the end of the day, there is Skip, all dolled up in sequince and lace...
But serioulsy, I love the impression she has left on this world in just 7 short years. Like Footprints, my favorite poem. I look back and see the trail of her tiny feet in the sand, I see my prints walking along side hers, and of course the Lord, leading our way along Kylies journey. I often see my prints disappear, times when I am at my lowest, most fearful for her future, times when I am lost as to how to cope with her complication. I give my weakness to God and he carries me. But one thing stands out to me. Kylies never disappear, they are ALWAYS there...but there is one difference, during MY TRAILS her footprints seem deeper..like she is helping carry a heavy load...
and for that if will forever be grateful for the impression she has left on MY life...
If you could, I am composing a scrapbook for Kylie,(saturday was National Scrapbooking Day and QVC was on while I was cleaning TJ and Codys pit...now I am gonna be a scrapbooking lunatic) Please share with us what impression she has left on your life thus far! You can e-mail them to tenkids2dogs@aol.com or post them in the guest book, you can even snail mail it to the address below. When I get it done I will scan the pages and post them ti share with everyone!! I plan to add to it every May 5th with a few pages of what she brought to the world each year.
(As I type Jordie is singing "so, you had a bad day..."
and Charlie is belting out at the top of his lungs "Your Beautiful" while wrapped up in his Stinky Dinky (his blankie). Darn it it all if he dosen't know ALL the words! In the safe for radio version! Believe you me, we wont make THAT mistake again! I got the song online and put it right to my iPod, while we were at the bank drive thru the song came on and well, lets just say my bank teller was in hysterics at the stunned look on my face. The kids were wetting their pants. To all those lost as to what it going on here, the popular song "You're Beautiful" by James Blunt has a not suitable for radio version...it, quite inappropriately has the F word in it..YIKES!)
Jordie is hounding me to get on NickJr.com and Charlie is feigining starvation while holding a chunk of mozzerella...
Forget that, Jordie has it now and is plowing into it with T-Rex like ferocity. Gotta break up the feeding frenzy.
Wednesday, May 3, 2006 4:47 PM CDT
OK.. we just got back from The Cleft Palate Meeting and that was just about the greatest WASTE of my life...to say that I am frustrated would be grossly minimizing the situation.
FIRST- The Cleft Palate Team NEVER got the tapes of Kylies scoping...The ENT Doctor would not release it because it had others patients videos on the tape as wall. WHAT THE HELL DID WE HAVE THE SCOPE FOR???? I'll tell you what I was told the scope was for- to send the CPT the video of it so that they could get a look at the situation BEFORE we went up for our meeting.
SECOND- I was basically told I was full of shit when I described the situation as I understood it to be as "her palate has no muscle tone, (hypotrophic was the word used to me, but I'm not a doctor, nor do I play one on tv...gee I L-O-V-E that line...teeheehee ) and because of it some of the food she eats gets up into her nose and when she breathes she aspirates it". I was told that no such thing has ever happened...
THIRD- I was told that they will be ordering and Upper GI (I told them we DID IT ALREADY!!!) And a barium swallow study ( I told them we DID TWO!!!) and was told, and I quote ,"this is not an issue with her short palate.This is a GI issue, " I tried to explain to them GI said it was NOT a GI issue, that we were referred TO THEM!!! They also want a sleep study, after I told them about the formula coming from her nose in the morning after she woke up.
FOURTH- SO here sits Kylie-the G-tube is shoved back in her belly again, she tube fed again! Eating nominal amounts of soft foods and getting REALLY sick of it all. As are the rest of us. This is a for all intent purposes a NORMAL child who has had enough. SHe is sick and tired of being sick and tired. Nor do I blame her. The lack of communication is appaling. Kylie is stuck in the middle of this tremendous cluster/ Everyone is pointing at the other and saying "this is not our issue". I am so disappointed in the way that this whole thing has gone.
I, personally, am tired. There is only so much a child, Mom, family can take....
all I can say in that our observations are this-
we have seen her have both formula from her g-tube and food she has eaten by mouth come out her nose...
when she eats food by mouth she sneezes and coughs...
when we stop all feeds by mouth her tremendously boogie nose clears up...
since we have signifigantly limited her foods to soft, mashed, etc. she has not had any pneumonias, aspirations, infetions-whatever you want to call them...\
what we can do with those observations is anyones guess....but I have a few ideas what THEY can do with them!!! LOL ;-) I thought after ths last fiasco in the hospital I coulden't possibly EVER be more frustrated...guess what??? its POOOOOOSSSSSIBLE!!!!
Saturday, April 22, 2006 11:26 AM CDT
Update at the bottom of the page 3am April 23, 2006
OK folks- we all know what tomorrow is! The Mayor of al things small and cute's birhtday. The festivities started yesterday. Well Thursday actually. I let her skip school on Thurs and we spent the day on the beach. It was 80 and stunningly beautiful out. We had soft serve, and cheese fries and boardwalk pizza. The queen is currently on a trip to the mall with Mrs.Peg and Mary and Annie Rose. I am about to kick Codys butt at checkers. And I think Tyler Lee is going to get Joe to play Yahtzee. Tonight ( the official weekly "Monica Family, Family Night")we are going to watch Grease! and play Conga a new game from the makers of Cranium- we LOVE those games. No junk games here, they learn something even if they dont know it! We all sleep all over in the basement, eat snacks, tell jokes, fart and burp and laugh till juics shoots out someones nose.Gotta scoot, Cody is waiting. Tonight Joe and I will compose Squirts birthday poem, and share it with you all tomorrow after we give it to her.
Joe and I were discussing today how we want Kylie to give Jordie a special gift on transplant day (5/5 Cinco De Mayo!! Ole!) and since I know the vast majority of ya'll out there have tremendous hearts and minds I was wondering if I can get some suggestions. And if we choose yours, then we will send you a CD of last years CaringBridge music (compiled by none other than our amazing Hilary- Dont worry Heather S. I AM sending you a copy ASAP! I did not forget!!) And a beautiful framed photo of our family edited and designed my yours truly. And if you would like a phone call from Kylie herself. This girl LOVES to talk on the phone, she had tremendous conversational skills that far exceed mine even, and boy, can I talk!!!
All right, Off to the playroom to scam some smooches and smushes and kick Cody's butt at checkers!!!
Love Ya!!!
Happy Birthday to you, Happy Birthday to you, Happy Birthday dear Kylie Jae ...Happy Birthday to you....!!!!!!
Boy , let me tell you how tremendously amazing it feels to be typing those words right now. As I type she is sprawled out across her bed, sideways.(Don't EVER sleep in the same bed as this kid! You are teking your life in your own hands..) She is in her silky ORANGE pajamas, surrounded by all the things she has gathered on her journey thru life thus far, that she holds dear to her. It is an odd assembly of quilts, pillows, stuffed animals, etc. But every night their placement is a part of her evening routine. Pointless because the moment she zonks the whole set up gets trashed and thrashed! LOL
Let say this B-day was well earned. There were way to many times (one is way to many but I hate to say there was more than one time)that I thought this b-day would never be. A lot of things went right this year but a lot of things went wrong too...but in the end her goodness and spirit prevailed and another year has passed with her gracing and enriching our lives. It is 3:33am, the rain is pounding on the roof but it is actually a peaceful sound. The fresh breeze is filiing my nose with the smells of spring, newness,re-birth of everythign that hid for the winter. Along with it now, we will forever get to celebrate Kylies re-birth, but for now, lets concentrate on ehr actual birthday. We have untill May 5th to work on the transplant journal!
I feel bad having kept Joe up this late, but he promised to say up untill I finished the poem and FINALLY ITS DONE! (well, we were playing Conga and Yahtzee in the basement with the big 'uns untill after midnight!)So here it is...I hope you like it. It was extra special this year, and very much from my heart.
Dear Kylie Jae, what a year it has been.
You beat all the odds over and over again.
High up in your tower like a princess, we'd pretend.
But it wasen't a prince who saved you in the end.
It was sweet Jordie Lynn who gave her blood
And with it a future to live and to love.
A gift from your sister worth far more than gold
The rest of your life to have and to hold.
So please take this gift of tomorrow you've been given
And show all the world how every life is worth living.
Good night all-I have to go smooch my 7 year old DBA free daughter on the nose...and get to sleep before Charlie wakes up!!
Monday, April 17, 2006 6:01 PM CDT
I am sooo sorry..Its been a little busy here and kylie was in the ER twice this week.THe second time she was admitted for IV antibiotics but was discharged within 24 hours so we could be home for Easter. Things were so screwed up we did not eve get baskets this Easter, but we were at the store Sat night buying the last of the eggs and candy for an egg hunt which is by far their favoritest thing about Easter anyway. Thinking she was going to be in the hospital for Easter we cancelled dinner with my family, but since we got her home Sat night and had nothing for dinner we went to the boardwalk for Cheesteaks, fries, sausage sammys, zeppolies and my favorite FRIED OREOS!!!mmmmmmm(my skin is now broken out but it was worth it!!!)Also a huge problem here is that my home computer is down. THe tower needs a new power source and has to go out to be repaired, so we are realy limited to internet access to when my laptop picks up a neighbors wireless!!!LOL
So I have to go before I lose this connection too!
Monday, April 10, 2006 7:58 PM CDT
Matt 5:44-45
But I tell you: Love your enemies and pray for those who persecute you, that you may be sons of your Father in heaven. He causes his sun to rise on the evil and the good, and sends rain on the righteous and the unrighteous. (NIV)
I must say, that in this world there are people who find their joy in others sorrow. There are those who are unable to allow Gods glory to relieve them or their earthly burdens, to recieve the gift of forgiveness and forgiving, and to repent their sins and look to tomorrow as a chance to start anew. For those who this description may fit- we forgive you. But it is not our place to pass judgement to begin with. Just know there is not a bitter place in our hearts, there is nothing but our prayers offered to you that you may one day find peace within yourself. We life you up in our hearts and minds despite your actions.
The more adversity that we face, as individuals, as a couple, as a family- they prove to make us nothing but stronger. Better. More complete and more resiliant. It gives us inspiration to pray harder, forgive the un-forgiveable, and believe in miracles. We have been blessed in this life but the last few years have made us see just how very much we are blessed. We have our families, who have gone above and beyond to help us cope with our struggles. Who have supported us in our lowest moments and rejoiced with us in our triumphs. We have friends we never even knew we had have come out of the woodwork to offer their hands and hearts. Joes work has been...well, words can't describe. Their support has been unbelieveable. They are standing behind us as we stumble and trip our way thru 2006, and with every road block we encounter, they have their hand on Joes sholder saying "don't worry, we are on your side, we support you 100%" We are lucky to have such a compasionate, understanding and loyal facility as a part of our extended-family.
Kylie spent the weekend grimacing at her mashed potatoes while we enjoyed ham at my parents on Sunday after my Grandmothers memorial service. I feel terrible but it is for her own good. I got her a suprise at the grocery store tonight, I can't wait untill tomorrow after lunch to show her. Dora the Explorer ice pops AND, now get this....Fear Factor Push Up Pops! With blood and eyeballs!! Ewwwwww We should have fun with that tomorrow! Joe and I make a hilarious couple, my back is all jacked up (arthritis and some degenerating discs, and vertabrae-woohoo)and despite a visit to my ortho today and some injections in my prime sore spots, I walk around hunched over like Quasimoto. Joe on the other hand, has done something to his shoulder and REFUSES to go to the doctor to have it loked at..So he cant pick up a thing adn you should have seen the two of us trying to get Charlie into the seat in the grocery cart the other day. Wow...that must have been a sight. We looked like we were trying to play Twister woth Boo. Getting old sucks!
Thanks for all the thoughts, prayers etc. As soon as I hear from the Clets Palate Team I will post, but so fare, things are quiet!! Blessings all.
Thursday, April 6, 2006 9:00 AM CDT
Good Morning Folks, This is Heather "Too Many" Monica reporting to you live from the Jersey Shore. Rumor had it last night the famous Kylie Jae Monica, Super Kiddo was released from the hospital for a month long hiatus home befor her next surgical endeavor. By using my vast connections I was able to track her to a palatial estate in Toms River, NJ, just 2 miles West of the famous Seaside Boradwalk. There Kylie will spend the next few weeks, surrounded by family and friends, while she re-couperates. Our sources tell us that she will soon be celebrating a birthday, too.
For now the information we are getting is telling us that after weeks in the hospital, the exact cause of her aspirations are still unknown, and although it was learned that her palate needs to be corrected, it is not,in fact, the cause of the aspirations. After an uncomfotable Nasal Largyngoscopy on Tuesday is was proven that the palate that was created for Kylie years ago in basically useless. The Cleft Patale Team will be be sent the tape of the Scoping to get a heads up on the situation before her appointment with them the first week of May. Untill then Kylie must recieve her nutrition theu a G-tube and has been restricted to foods of a mashed potato consistency, in VERY SMALL amounts, by mouth. No liquids either but to suck on an ice pop or ice chips to stave the thirst sensation. And nothing by a straw! (slurpees are out!)
According to my source (who has requested anononymity) Kylie is "very pissed." at the situation. Her favorite things like, gorging at Old Country Buffet, and eating bags and bags of Lays potato chips are not allowed and althought things are quiet at the Monica compound this morning, the general feeling is that this peace will not last. Once the excitement of being home sets in, my "source" is confidnet that the feeding situation will reach confrontations of Biblical proportions.
The family seems happy, but tired, frazzled but relieved, and a relative we recently approached after leaving the house told us that the family is "requesting prayers to help them cope with the pending surgery".
Monday, March 27, 2006 8:56 PM CST
Sunday Afternoon- I spent the day with Joe cleaning the house. We listened to Ky's CD- High School Musical (I burned a copy for Tyler Lee and the girls, before I bring the original to Kylie at the hospital) and then we were listeneng to MY stuff.
I had gotten some new stuff recently and never had the time these past few months to listen to any of it but this one song by Casting Crowns really caught my attention...Praise You In THis Storm...It went right to the core of my heart and sat there like a lead weight...In this stirm I will continue to praise Him....
Saturday from Joysee...I had to head back home for the weekend and get some time in with Joe and the kids. Things have been rough on all of us..
Kylie keepd getting purply mottled and it is getting quite scary. Her doctors can SEE it, but no one can figure out WHY. So, back to Cardio yesterday for chest x-ray, EKG and Echo...SHe had been on telemetry for a week which is showing intermittent Bradycardia (too low a heart rate) and Tychipnia (too fast){{pardon my spelling on those words, I am not a doctor, no do I play one on tv}} Not really sure but this might be her ASD repair needing to be fixed. Don't quote me, that a MAJOR IF...
Sadly I must report that on Thurs Kylie had to have her G-tube re-inserted. What is hapenieng is that she is re-gurgitating her foods because her cleft palate surgery needs to be revised. When she chews and swallows the palate is not working properly anymore (it has become hypotrophic because of the type of repair she had 5 years ago.)
So as she swallows that palate catches food and pushes it up her nose and when she breathes she aspirates to her lungs from her nose. So. Untill Tuesday Kylie is NPO (no food by mouth)for her Nasal scope ({{shivers}} As nuts as this sounds and as irrated as I am over it, the Cleft Palate Team at North Shore Hospital is not availaible to EVALUATE her untill the 2nd week of MAY! WHAT!!!???
We are in for the long haul here...By this sucks...
Update late Tues Night-
Tuesday Night ...
"Let us boldy approach the throne of our gracious God, where we may recieve mercy and His grace to find timely help."
Hebrews 4:16
God will make sure you have what you need. From his hand you wil recieve "Timely Help"
That was taken from "Grace for the Moment" by Max Lucado. And how very fitting it was that this evening I read it. For today "Timely Help" came in the form of four young men from West Heampstead, Long Island who thought so much of Kylie Jae that they chose to spent their evening hanging out with her. Her day started with her swallow study that showed she is aspirating liquids but not solids. Or so half of the Docs say, the other half think she is refluxing (difficult acomplishment being that she had a Nissan Fundoplication at 11 months for severe aspitations and reflux.). So, Kylies meals have been replaced with pureed cat food (or at least it looks and smells like it), yougrt, applesauce and thickend lemon flavored water. Ewwwwwwww.......Well, Kylie chose to not eat or drink rather than partake in the smorgasborg of unappealing, odiferous potted meat and "nectar consistancy" drinks. Soon the dehydration and depression started to take hold of the princess. Her pep was gone, her mood- meloncholy, spirit-shattered. She was tired, mopey, clingy. Sick and tired of being sick and tired. I just sat back and looked at this little hero and for the first time saw defeat. She was giving up the fight and craweled into bed and asked me to close her curtains. NEVER in her life has this kid ASKED to take a nap...She was crying , I was crying...We were not a happy bunch of campers. I made the choice to say with her tonight, and went to the RMCD house to shower and change into my sweats. As I walked back to the hospital I was talking to Joe how her spirit is giving up. How this _od damn syndrome has finally drug her to give up. Feeling more desparate and lost than during transplant I went back up to snuggle my Squirt. She was actually at the nurses station, having suckered a nurse into a game of Gues Who? and after being given the "drink this or we have to start an IV" lecture, was resigend to the fact she HAD to eat the goo. Well, she got a yogurt down and actually liked it so I jumped up and ran to the cafe to get more yogurt. She was not too hip on the prospect of more yogurt but it was a heck of a lot better than an IV. When I got back, there was some serious noise coming from Rm 219, when I got in -there was Sean, Paulie, Chris and Michael all coloring and playing Guess WHo?. Boy was there a party going on. She was bouncing, laughing, SMILING! My girl was back in action! Soon the "Mush" situation was forgotten, the yogurt was put aside and we were in full on party mode. Those boys (young men) where both our salvations tonight. For her, they lifted her spirit out of the gutter, brushed it off, and shined it up all pretty and new. For me, it was pure joy to watch her have these guys wrapped around her little fingers. At one point Sean got pig piled and ended up getting a makeover Kylie style with Crayola Markers and Caboodles sparkely lipgloss. (pictures will follow-Sorry Sean, I HAD to do it!) I was pure bliss, sheer joy. And for us..it was "Timely Help". Bless those boys, they saved more than just one spirit tonight.
Part of todays devotional was titled God's Child-
You are eternal, like and Angel. Luke 20:36
thats my Squirt...like an Angel. Forget like, IS!
Back to Wed Night to get a grasp of my mental status.....
Hows this for a mothers instinct, after taking my shower, fighting with the wireless network at RMCDH and getting jammied, I dozed for a bit. About 11:30 I woke up and just HAD to go see Ky. I got my sweats on and scooted over at a fairly quick pace (well quick for someone as fried as I am at the moment.) As I got to her curtain I saw her sleeping. WHEW! Then I saw pink on the sheets at her feet and thought that maybe they flushed her line or something but when I lifted her sheets to peek there was blood everywhere, it was a giant pool...I panicked and flew around looking for Allison, her nurse. After a few chaotic moments I regained my composure and took a breath. Her IV was runing quite fast so most of the mess was fluid that thinned the blood but it was still traumatic! But what this ment was that for about an hour she was not getting any Versed and she was very VERY awake. No IV also ment no Decadron, which is the steroid in charge of reducing the inflammation in her treachea and lungs causing her to be on the vent. Two different, very skilled Doctors tried their best to start a line but were unsuccessful. A few favors were called on and the NICU doctors came downstairs with their light wand to find a good vein. After nearly three hours and alot of trauma to sweet Kylie Jae a line was started (she must have heard them talking Pic line and finally gave it up) She was so wrecked they gave her a push of Fentanyl along with the IV drip of Versed. (she could have at least shared with me...LOL) So here I sit, 4am, in my bed typing this. There is something to be said for mothers instinct. Kylie and I are a prime example. She still has no air leakage (meaning her treach is still so swollen that no air is leaking out around the ET tube- WE WANT LEAKAGE!) Her Sats were wonky all night and a few times she had to go from 402 to 100 I keep having to pick up my eyeballs of the keyboard, but my adrenaline has the rest of me buzzing...I'll add more tomorrow.PS I got her three pair of FROG socks toady...Fully Rely On God!
Its about 11 am now, Joe called me a little before 7 to wake me, not knowing about the fiasco last night. I did not call him because he has enough on his plate and calling him in the middle of the night, about somethign he cannot fix for me would just stress him even more. I knew that in the morning all will be well and then I can tell him after it was all done and resolved. So I got up, got dressed, said goodbye to a Mom and her little girl, goingback to Jamaica this morning and headed over to see Squirt. She was comfy and asleep but when she woke up she got the "treatment", I changed her pillow case (she drools terribly on the vent and everything was soaked) dried her off, combed her hair, and gave her a nice massage with B&BW Sweet Pea again. She LOVED IT. yesterday I had gone out and got her silky jammies, funky nail polish, and a bottle of the same fabric softener that I use at home so her quilt would smell like home. When I got back I painted each toe a different color (they look like skittles!), put on her pnk silky jammies and gave her a rub down. She has told me last Friday seh wanted pretty smelling lotion so I bought up B&BW Sweet Pea in honor of Hilary, our most favoritest college student/president of the Cure Kylie Club/soul sister. While I rubbed her legs we (I) discussed how it was Hils favorite scent, we (I) talked about our planned summer vacation with her. We (I) chatted about the boardwalk, s'mores, shopping, girls night..side note to Hilary-we (I, yet again...I seem to be talking to myself a lot these days. LOL-don't worry , Kylie is very communicative when she is awake and I have whole conversations with her w/o her needing to say a word.) had this chat BEFORE you sent me the e-mail about distracting her with all that! I swear you must be able to get into my head, which is pretty risky since that is a VERY scary place to be! So, back the the pampering...while I was doing that, Dr. Lipton (see above- support St. Baldricks!) came in with the low down on the pathology. drum roll please.....Pathology results: white cellular mass indicative if vegatable mass!!!! I can go one step further- its CUCUMBER!!! LOL- I wonder what the scientific name for cuke is....Golly its tough to be soooo right....sooo often..LOL
The case will be presented today at Tumor Board, Dr. Lipton joked that he was curious if anyone gets it correct! Veggies...that will be a tough one for them to figure out. She was also positive for strepto-something-or-other, but that is commonly found in your nose anyway, so "no big whoop" there! Blast from the past, my Mother use to wig out when my sister would say "no big whoop"...teeheehee
So here it the current theory (like Jackos nose, subject to change daily!) It goes way back to Kylies early years...Flash back, 1999 when unleaded gas was 88 cents a gallon, cellphones only made phone calls, and Kylie Jae Monica started to work her way into the hearts of everyone who cared for her. She was treached at 3 months for severe trachialmalacia (spelling is SO wrong on that one) She could not swallow and when she did it went down her esophogous and treach. She aspirated so much she had chronic pneumonias (sound familiar?) Since she had so many mid-line defects her mouth, lungs, stomach were all a mess. She had a bunch of surgeries to repair these issues (Nissan Fundoplication and a Pyloromeyotomy to name a few) But it was warned that she may need future repairs and she grows. SO, back to present, we are in fact, most likely, with high probability, quite possibly dealing with swallowing/malacia/aspiration issues, that might, could possibly, not for sure, but is to be considered, need surgical repair. POOP...First things first. We need to get her off the vent, let her recover a little then do a swallow study. We had these at St. Christophers in Philly back in the day. She will swallow conrast and they will take pictures as she swallows to see how she is aspirating. Then the decision will be made as to what shee needs. Dysphagia, surgery, who knows anymore.
Friday- Ky came off the vent! woohoo.... Im doing this post script as the weekend stunk major poopies. Hilary and I are IMing back and forths as i type to try and get accurate days and times since they all seem to just blur together. But the run dows is this, Fri she was off the vent and I stupidly decided to celebrate with take out dinner. I was craving big fat Ruben w/ cheese steak fries...all my fervent readers are well aware of the Monica Families affinity for Anaphalaxis..Well by some careless cross-contamination with shellfish and my dinner, I was 20 mins into my meal and itching my throaght, rubbing my eyes, tugging my ears....It was a mess, i wanted to go get benadryl but the PICU nurses were like NOT! So down to LIJ I went and was admitted for 24 hrs of IV steroids (which I left one dose early) IV benadryl and potassium pills. While nocked out on Benadryl I was robbed of my IPOD RIGHT OFF MY SLEEPING BODY!!! (this is not going to go well tomorrow, since Kylie uses it often to calm herselt during scans, tests, etc...) I felt absolutely violated, creeped out and completely devastated that someone got that close to me while i was that OUT and had malicious intentions. It is an Evil thing to advantage of a person at their weakest. And forget that it is basically Kylies. She had more of her music in it than I!!!! Hillary Duff, Kelly Clarkson, Keith Urban, Aly and AJ, Josh Groban (her ABSOLUTE FAVORITE..) High School Musical, and of course her favorite song, you now hear playing- Vienna Teng-Lullabye for a Stormy Night. So, after getting the police to take a report (hat was actualy just a waste of pape) I recieved a call from Joe that my Grandma Wright died... Agrh. She is in a better place. Alzheimers is a devastating disease, believe me. So, I left LIJ, got a few hours sleep, drove home and came right back Sunday night.
Stinky for kylie is that she is on purees and thickened liquids. Her dinner looked and smelled like cat food..Tomorrow AM is the swallow study to see how she swa to have answers then. really have to go to sleep
G-night, I am wiped, I really need peacful, burdenless sleep...
Tuesday, March 21, 2006 10:28 AM CST
***Friday Night 3/24/06***
Hi everybody! This is Hilary (or as Heather says, Cure Kylie Club President, haha) guest-updating for Heather tonight...and hoping that I don't manage to screw up the entire page in the process! LOL I just got off the phone with Heather (who has been having trouble getting online to post an update) AND KYLIE!!! Yes, Kylie is now off the vent and out of PICU! Heather has LOTS to share and will get on as soon as she can to do one of those great updates that we all love so much and fill in the rest of the details of the week. I did tell her how many people have been praying and posting, and she asked me to jump on here to let everyone know this good news and send her love to all of Kylie's supporters. Please please please keep those prayers and well wishes coming as Ky continues to heal...I know how much they mean to the entire family!
With much love (and, as Heather would say, BLESSINGS) to all,
Hilary
Hey all, sorry I have been MIA, this all went to hell yesterday....a 20 min procedure took three hours and Kylie is now on a vent in the PICU. I just left her, she needed to be more sedated and I just cannot stand to see her this way. I will re-gather my thoughts and then go back up, hopefully she will be out and comfortable. THe doctors said she still cannot come off the vent, there is no change in her swelling since yesterday despite the mega doses of steroids they gave her. We really expected her to be able to be extubated today, but her doctor said with such a lack of change, this could take a week. THat put me on the floor...
What happened is this, as soon as the bronch started her Doctor saw a blockage, he tried to remove it but with every breath it moved all over the place. It was a big white "thing". He tried several times to remove it, then called in his partner to try, and then had to call in an ENT to try. The thing came out in a few peices and is being sent to pathology. In the process of "fishing" for this "thing" her lungs which were already a mess from the pneumonias became so inflamed and swollen she had to be intubated. The washing was done and that to was sent to pathology. THey right away said AHA!! this is why she was so sick, I on the other hand have that mommy instinct that feels otherwise, I feel she aspirated food because she was coughing from the pneumonias (more on THAT story to follow). So the "thing: in my opinion came AFTER the pneumonias so we still have no answers. The doctor cited the lungs looked very "HAZY" that she has severe bronchial malacia in her lower lungs(muscle flacidity that means her coughing is fairly useless- no muscle tone in the lower lungs to bring up the crap)and that he could not rule out Graft Vs Host disease. He wanted to take a biopsy but she was already so inflamed he did not want to push his luck. She may be bronched again to see for more "plugs-things" and for that biopsy but it all is pending on the pathology reports.The waiting game...
Now, here is what I think the "thing" is...On Friday Kylie, Lizzy, Brenna, Meghan and I were hanging out eating veggies and dip (You know Ky and her veggies and dip). Well somehow she was laughing and coughing (she probably farted or something...LOL)and was choking on some cucumber. Well then she sneezed and this ginormous blob of mascerated cuke came flying out her nose and I was patting her back getting her to sneeze the rest out.( all while we were laughing even more hysterically!!) So....I told her doctor last night to dip the blob in Ranch and have a taste- ITS CUCUMBER!!!
THATS MY STORY AND I AM STICKING TO IT!!!!
OK... now I have regained some composure, I was on the verge of a wicked pity me party, but this journaling has been a great vent...
Back to the PICU... :-(
Please storm the heavens for Kylie- she is finding great comfort in me singing to her (cant imagine THAT is comforting) I offered her the IPOD but she wants me singing in her ear... So over and over I sing, Lullabye for a Stormy night, Psalm 139, Cry to Jesus, Glory Baby, and I Cant Help Falling In Love With You. She is very well rounded...So if you know any of these tunes hum it for her...Send me a few suggestions in her guestbook along with prayers too...We really REALLY need them...
Love to all...
This is the journal I was working on sicne Monday morning before the bronch- I was unable to connect to the internet earlier with the laptop but I found a spot where it worked, it may be redundant but it was the original!
(the irony is how I had a bit of a premonition about things going wrong ...)
Today Kylie will have her Bronchoscopy and bronch wash. The Doctors will take her into the OR and discuss with me the procedure, how simple it is and how quick it will be. But for me, every second she is out of my sight will be an ertenity. I will fantasize about all the horrible things that can go, and have gone wrong with even the most minor of procedures. We have had cut-downs go Postal on her, IVIG be disasterous and a juice box once nearly sealed her fate when, thru some odd quirk with her pancreas, it made her sugars drop to a stunning 14. So, to us, there is no simple, quick procerdure. This child has faced more trial and tribulation than she deserves, but nothing when compared to the fate Jesus chose in order to guarantee us all a place in Heaven. Last night Joe and I had a pretty insightful conversation about this miracle child. We definately agree that all of Kylies ailments are nothing but the work of the devil and that he has an agenda to remove her from this life. But on the other hand we feel pretty damn honored that we brought into this world such a pure, gifted soul, that the devil himself is threaghtened by what greatness she holds for us all. She holds such promise for mankind to see the Glory of His Wisdom and her meere existance will be such a major kink in his wheels of evil and destruction that he is quite literally Hell Bent on making sure she stops reaching hearts and minds of people all around the world.
Well, its now 3PM and Kylie still has not come out of recovery...things pretty much went way south and she is on a vent and going to be transferred to the PICU tomorrow after spending the night in recovery. What happened is quite predicatbly bizarre. As soon as the scope started they saw an obstruction in her lungs, a huge white splotch (small on the scale of things normally, huge for something in your lungs.) It was floping around with each breath, and they watched it pop from one lung to the other. He tried to extract it with suction but got no where fast, then her called in his partner, and tried to use really tiny foreceps to pul it out. But it got stuck. ARGH...Then they called in an ENT to try and well from there the details are vauge, but the end result it the object is out but her lungs are ravaged from the fishing. She has bronchial malacia in her lower lungs, making it difficult for her to have productive coughs, and she is full of secretions. They finally got the washing done and hope to glean some information from that. We are stil not sure if the obstruction had anything to do with the infections, the cultures will shed a little light we are hoping. It could be just that one has nothing to do with the other and she aspirated something with all the coughing from the pneumonias. Who knows. I give up trying to guess. Since she is being transferred to another unit I had to empty out her room, and since we have been in Surgey all morning, I never had a chance to get together with Nancy about getting me into the Ronald Mc Donald house, so there I was with bags and bags of the Mayors junk, ferrying them back and forth to the car, just to have to drag them back when she gets a room in PICU. All while I am trying to keep my composure and not run screaming thu the halls "I HAVE HAD IT!!"
I finally got to call Joe and let him know what is happening, Tyler Lee is really sick at home, and neither one of us believe her "virus that is inflaming the spaces betweenher ribs, just give her motrin for the pain" thing is actually just that, since now she has a fever and is in complete agony with each cough. We are both crosing our fingers that it is not pneumonia.
And all this on TJs birthday. Poor kid, and he is our most sensitive to all this stuff...
Well, I am scared... I have not seen Kylie on a vent since her open heart surgery in Feb 2001. She was just a baby then, and things are going to be VERY diferent this time. I am terrified as to what she will look like, feel like, be like. I almost hope they keep her sedated because it could get ugly. Her nurses up on Med4 are stunned.
its 9pm, I have just showered off todays chaos and am preparing to go back to her room. they have to keep her very sedated because the suctioning is stresful on her (and me) and she is really uncomfortable. Peggy was up with her and me for a while and then Lizzy came up. i feel really bad how much this stuf really hurts them to see. But their sadness actually comforts me in some ways because I am inspired by how many lives she has touched.
Sunday, March 19, 2006 5:21 PM CST
Hello there folks...sorry I have been MIA but Friday night I went home to try and spend some time with Joe and the kids. Saturday we were able to meet up with Ma'am Trish, Master Coyne, Ms. Joyce Veress and Sam Chan for the presentation the the prizes to the kids who kicked the most and the funds raised. ANd it could not have come at a better time! We will be able to pay off some of the big medical bills that are looming over our heads, as well as the balance at Ronald Mc Donlads house. Not to mention all the gas and tolls and living expences related to my staying in LI so much. It's nuts.
God works in mysterious ways. We thought we were done with Kylies troubles, really were not looking for someone to run a fundraiser for us, but when the help was offered we were more that happy to accept since we are still in debt from the medical bills. And we were hoping to launch PAY IT FOREWARD on a more national level. But Kylies health has decidedly taken turn for the worse and we have been dealing with serious illnesses since the middle of January with lenghtly and stressful hospializations and the fundraiser...well I could never have forseen how desparately it was going to be needed- Joe has worked 3 days in the last FOUR WEEKS!! And although he has the Family Leave Act which keeps his job secure despite his absence, there is no such thing is "pay you while you become Mr. Mom" act.
Kylie is going to have a Bronchoscopy and Bronch Washing tomorrow morning, so please...pray for kylie that she has minimal discomfort from this, that God guides the hands of the Doctor who will be guiding the laproscope thru my sweet babys little lungs, that He gives Wisdom the the OR staff to keep Kylie safe and sound during the procedure, for the Anestesiologist that their hands are swift and prescise in starting a line despite her ravaged veins.
And toss in a few shout outs for Joe and the kids..tomorrow is TJ's 10th birthday and this is the FIRST time in his life I will not be there to celebrate with him. I feel quite sick over it and am painfully torn over Kylie Jae and Taylor Joseph, but TJ my big little boy knows Ky needs me tomorrow because of her surgery. So sad he has had to grow up so fast. But it is definately making him a better, more selfless person. I am going to scoot now to have birthday brownies with TJ and the kids. I will bring some to ky pie tonight, and she can eat them tomorrow along with her corned beef and cabbage that she specifically requested on friday before I left! After being NPO tonight she will have a tremendous appetite! You know how my one man slaugheterhouse is about food!!!LOL
Time for my chocolate fix!!
Thursday, March 16, 2006 11:35 AM CST
Thursday:
Last night was a mess, we literally flew to the ER-chest pain, fever, cough... quick CT scan showed NO CLOTS !Yeah!!! but....pneumonia AGAIN!!! We were discharged from the ER after midnight so we could get her to LI this morning...so here we are in the REsource Center at Schneiders waiting to see the transplant docs and discuss the new pneumonia....ARGH!! I AM SOOOOOOOO SICK OF THIS FOR HER AND FOR THE REST OF US!!!!! Gotta scoot, Fae is snuggeling Kylie right now, so she will have no need for me-Im just the taxi driver!!!
Love ya!
OK Update...its 6pm here and we are STILL waiting for a room...Thats ok, like I told Nancy (the worlds fanciest-schmanciest Social Worker any sick kid could ever have)We can wait! Baby Jesus was born in a stable, we can wait for a room!!!
Not much to report since there has been no workup really...back to discussing the bronchoscopy and bronch wash again....well see ...waiting for an x-ray, Ky is right next to me doing DIsney online-playing Lizzy McGuire! So we sit..and wait...but she gets cuter every second, (And I get crazier!YeeeeHaaaaaa!!!!)
11:30 PM.....FINALLY got a room at Club Med4 around 8pm, By 9pm I was giving her a tubbie and donning the dreaded "show your fanny to the world" hospital gown (but is is such a cute fanny!!) since we came unprepared for this fiasco. Then around 9:30 she broke out in hives.ARGH!!! A little benadryl and after I sang her "lullabye for a stormy night" and Psalm 139 she was sound a sleep. We are SUPPOSED to go for X-Ray tonight, but I certinly wont hold my breath. SHe and I (as the rest of the family) have asolutely had it. Joe is home fighting the flu and 7 kids. And I am fighting of the burning desire to pound my head on the wall till I pass out and wake up 5 years from now to a normal life...(like THATS ever gonna happen with my crew!LOL)
Still, as I sit here watching life on a hem/onc floor go on around me I am reminded that I am a very lucky Mommy...VERY.
I cannot dismiss Kylies struggles and how they are hard for her and the rest of us but when I reach my breaking point I remember it could be worse and I somehow manage a smile for her, so she dosen't stress more than she already is and I slip into the bathroom for a mini meltdown. From her room I can see The windows to the ome Marrow unit, I look at her old room and see lights on behind the curtain and I cry for that kiddo, their parents, and for all of us that live this life and have exclusive membership to this stinky "Club".
I cant help but let that "Why us?" mentality creep in uninvited. More like "Why her?" This sweet,innocent,pure hearted,old soul that has changed me in ways that I could never adequately describe in my lifetime. I sit here and think that if God came to me today and offered me that chance to trade my health for hers I'd it up like it was the greatest most desired Christmas present and never look back. I looked at her belly tonight, full of bruises, hives and scars that look like the Ice after a Rangers Hockey game and couldent help but get teary eyed. This just plain sucks. BIG TIME.......It has for 7 year, and will most likely continue to for a very long time.
Well, enough of this pity party, I'm going to her room, going to smooch her all over till she rolls over to get away from me and say some prayers. Hopefully tomorrow we will have more news and maybe a few answers. ( we havent had any real answers for 7 years, I really should stop setting myself up for failure! I must be a glutton for punishment)
Good night, God bless...
Friday afternoon: well last night after the Benadryl bru-ha-ha we had a quiet night, but that does not imply that the morning was just as quiet. In fact it was quite the opposite...it was around 6am and she shot up in bed howling in pain, Kylie was writhing all over (labor 8 times here, I KNOW THAT BELLY PAIN!!) It was horrifying, I was crying, her nurse was tearing up, the doctors were stumped...I sat in her bed holding her while she twisted and turned and waitid for them to bring up the portable x-ray. We put icepacks on her belly, calmed her down and she basically passed out from the pain and slept till about 10....She has a murmur that was not there before so Endocarditis is a suggestion, but we are having a full cardiac work up and consult with Pulmonology AGAIN....freakin' circle....like a dog chasing its tail is exactlyhow I feel right now. Going to go give the Queen love....
Wednesday, March 15, 2006 10:59 AM CST
Yes, those are pictures of us all in Blatimore Maryland. We love it there, its far enough away from it all but close enough to drive to. This time we stayed in a hotel that was built around a Mall!!! How cool! It was full all of all my old favorites before mass quantities of children came into play- like J. Crew, Anne Taylor, Banana Republic, Gap, there was even a Coach store I got to oogle around in but the most I spent in there was at Starbucks! Three stops in one trip around the mall brcause my kids have not only sucked the calcium from my teeth and bones but all the coffee from my lattes and frappucinos!!!
Oh Icklefritz...I have been hit by the flu! My toes to my nose ache and I bet if Charlie did not keep drinking my tea on me I couldnen't keep it down anyway! Joe is creeping his way thru work as he too is a recipient of Kylies gifted flu. Please please lets hope the rest of the crew escapes!I dont even want to think about THAT!!! LOL
Kylie is on the couch with a fever but with no hardware in her body I can actually giver her tylenol and moniter it w/o heading right to the ER! Hey how cool is that video clip of Kylie whoopin Master Coynes butt!! Now that I can link videos I plan on sharing brief clips on the happenings here at the house for all those who always ask me "What is it like at dinnertime there???"
Yesterday I was a complete Homer and forgot to call my sister on ehr birthday although I did have the conversation with Joe that it was her B-day and I needed to call, but somewhere between grocery shopping with all the kids (in their jammies after their tubby because I was feeling to crappy to drive and waited for Joe to come home and take us), trying to find a pharmacy to fill Kys pre filled syringe prescription, and washing the floor with a wash cloth because someone, somehow, seems to have taken my mop out on to the trampoline, left it out in the play yard, and Boomer ate it!!! And it was one of those expensive fancy ones that wrings itself with nice ergonomic rubber handles and such (Oh well... can't cry over eaten mop.), I forgot to call her...
I catnapped during Idol but did get to see Taylor kick butt- Ill scream If he actually colors his hair!! DONT GIVE IN TO THE PEER PRESSURE!!!!
I have to get back to the couch, CHarlie is calling someone an Idiot, Kylie is giving someone a time out and Ryan is howling that there is a cheater in the house...What on earth are they playing???
I still have not forgotten I owe everyone a journal on the Kick a thon followed by the run down on how Baltimore came to happen on such short notice and what a goot time we had, but my head is pounding and I have to get back to the Midgets so my head can pound even more!!
Tuesday, March 7, 2006 10:38 AM CST
We ran away for three days, I will post pictures of the suprise but first I wanted to share this thought..
When we were discharged Wed and the nurse took out her line and left the room, I had a moment ...A MAJOR MONICA
MOMENT...Here was my sweet Kylie ..Smiley Kylie...Squirt...And for
the first time in her ENTIRE LIFE I saw my daughter without a port,or
Hickman,
a PIC or a central or periferal line, G-tube or NG tube, treach or
vent...something - ANYTHING, that was medically necessary to sustain
her
life.
My daughter was finally freed from the beast that robbed her of
her childhood thus far. The second she was born she was whisked away,
hooked up, stuck and connected to at least one thing and usually many
things from second one on April 23, 1999 untill Wed, March 8
2006....and here she is, nearly 7, walking and talking, eating and
pooping (and farting) running and climbing, learning and LOVING and
LAUGHING. And we plan on keeping it that way for a VERY LONG TIME!!!
I pray every day for all the other members of "The Club" to find the same
fortune we were able to achieve for Kylie..It was well worth the
battle scars, the fights, the medical bills and debt, the grey hairs
(or in Joes case -no hairs!!LOL)the sleepless nights and zombified
days. My love to you all.....
****************************************
Word on high is that we are busting out of the big joint SOON! As soon as her chest x-ray is done and her 5 days of Levonox injections are delivered we are outie!! What a crazy trip it has been this week. What started out as a girls night out to RMcDs house and a day of post transplant check ups became nearly ten days of tests, surgery, scans, sticks, meds and a whole heck of a lot of sleepless nights!!! It was honestly worse than transplant. We prepared for that, we lined up all our ducks, we got informed and educated...This was a whole 'nother ballgame...This threw me for a loop but we came, we saw and we kicked some booty! ANd now we are heading HOME!!!! Kylie was sooo excited! SHe called Daddy right away and said "Good news! I'm coming home!!" Her Influenza-A was negative so she is finally off restrictions. And at this very moment she is upstairs with her in-hospital teacher, getting "edumacated"..LOL Kylie has, as usual, enlightened everyones lives who have come across her. I on the other hand saw a whole new side here. Staying at the House that love built brought me close with some Moms who were thrown head first into the reality of being a member of "The Club". Families with nothing but the clothes on their backs and very sick kids...Moms with no support systems, friends, or the knowledge of the programs that are available to help them or just to scared or overwhelmed to even begin to ask the right questions. I was able to calm their fears in onlt the way someone who has "been there done that" can. A little wisdom. a LOT of prayers and even more blind faith. I can honestly say that this particular journey has broadened my mind, brought me closer to my husband, and shown me some of the unappreciated blessings in my life. I am just as guilty ans anyone else of forgetting what I have and pontificating on what I don't, even thought I like to preach it to others!
So ...all in all this crappy week has turned for the better, I will soom be home and so grateful for things I may have overlooked last week. Life lived and lessons learned....yet again...
Never stop looking, learning, and LOVING!!!
Update from Kylies Daddy! You are all reading history in the making!!
To all of Kylie's family, friends and everyone who's life she has touched, and to everyone who has touched Kylie's life in some way.... And to all who have reached out to our family during our times of need and support.....
I can't even begin to thank everyone for all your thoughts, prayers and support you have all graciously given to Kylie and the rest of our family. From being with Kylie when we couldn't be, to supporting Heather when I didn't know how to, and by letting our other children know they were being thought of too. We never could have gotten through this alone. THANK YOU!!!!!
But most of all, I want to thank Kylie's mom, my wife Heather. All of you who already know her can appreciate how wonderful she is. She is truly the backbone of our family, and I am the luckiest man on earth to be married to such an inspirational, loving, caring and forgiving woman. Her magnetic personality and absolute comedic sense of humor, along with her ability to handle anything she is faced with, truly reminds me evereyday, how blessed I am.
The past ten days have really been a challenge for me to say the least. Being "MR. MOM" from the crack of dawn right back to the crack of dawn, has really given me a whole new insight to my wife's world.
Being a former Marine and police officer, I thought I saw it all and could handle anything. Boy was I wrong!!It's easy when you know who the enemy is! Who would ever think seven sweet, little, innocent children could be domestic terrorists? They somehow managed to infiltrate Homeland Security and did their best break me. After these past ten days, I'm ready to re-enlist into the service, at least the weather in Iraq is warm now.
But all kidding aside, I have a greater respect and admiration for my wife and ALL mothers. It doesn't matter how many children you have, 1 or 10, well, I lie, it matters a little bit. To do all she does 24 hrs. a day, 7 days a week is truly nothing short of incredible. Getting up and going to work each day is like a trip to the mall compared to taking care of eight children all under the age of nine, and two crazy dogs. Hearther is truly my hero!!!!
And if that's not enough, she also manages all of Kylie's care, which is a full time job in itself. And now she has started a project to "PAY IT FORWARD". To pay foreward our thanks and grattitude for EVERYTHING we have received from others. Heather's project will allow our family and others to reach out to other families in need and times of crisis. So, support her project by supporting others. All Heather wants to do is what she does best, which is to teach our children to be caring and loving to others, and to make others smile. Which by the way, can easily turn to tears and if your not real careful, repiratory arrest. We all know how damn funny she is. She could easily be the funniest stand-up comic around, she never runs out of material with the crew we have. Waring.... to anyone with Weak Bladder Syndrome, don't read her journals unless you have a good pair of Depends lying around.
Back to my story, by the way, writing is a great form of therapy. So, O.K. here goes.....
My days started, while it was still dark, to our 2yr. old Charlie calling for "MOMMY" from his bedroom. Saying "I'm ready to get up now" over and over again. I knew it wasn't the alarm clock, because the snooze button was not stopping the voice. Maybe if I ignored him, he'd stop. And besides, I wasn't Mommy. It didn't work, he didn't stop. He only got louder. I quickly realized Heather was in Long Island and I was about to become "Mr. Mom". So I got up, and took Charlie downstairs. He looked at me and said "I'm Hundry". He must have been trying to say hungry. "I want oatmael". Easy enough, bowl, water, packet (instant) microwave. Four packets later, I finally figured out he would only eat peaches n cream. It's only 6:45 and I'm ready to quit.
Time to go back upstairs and wake up the girls for preschool. Jordyn (4) and Kasey(3). This has to go well, because little girls are suppose to like school. I walk in their room wake them up, and they both in unison pull their blankets over their heads and say "We're not going to school!!". They both take after their mother's heart, they are NOT morning girls. I should have made them a cup of tea before I woke them. Ha.. Ha.. I finally pry them out of bed and get them dressed. Hopefully they get breakfast at school, because I'm not going through the oatmeal ordeal again. 7:25, "lets go girls" "time to get coats hats ang gloves on" Kasey then reminds me how I didn't put her hair in pony's. I didn't want to tell her I didn't know how to, so I said it was "no ponys allowed" day at school. So, outside to the bus stop we go in sub-zero temperature. As we stand freezing waiting for the bus, they both are arguing with me because of the clothes I made them wear. It's got to get better, it's only 7:35 am. Finally the bus arrives. Their both crying because of what I made them wear, and I'm crying because I know they will be home in 4 hrs. Two down, four to go.
7:45am, time to enter the 7, 8, and 9yr olds world. This has got to be easier, at least they could all dress themselves. Everything was going o.k. until Cody(8) informed me it's not cool to wear long sleeves and jackets to school on days when it's 10 degrees outside. I won that battle, one for me. T.J.(9) who has to be reminded of his name each day before school, walks out to the van with no shoes on. At least he was wearing his coat. Another one for me. Lets all pile in the van to take the older kids to school. Head count, who's missing? "did anyone wake up Tyler(7)"? Another girl close to her mommy's heart, she loves to sleep in. "Need a cup of tea, hunny?"
Charlie and Ryan have to come for the ride, I don't think DYFS would appreciate Skippy being in charge.
Don't ask me how, but we made it on time. 9:00 am three more down. (Oh yea, Skippy jumped in the van and came for the ride too. When T.J. got out , so did Skippy.) In the school they go-TJ, Cody, Tyler Lee..AND SKIPPY!!! I want to pull away so bad, I'm soooo embarrassed. What a circus.
9:20 am, were home. Me, Charlie, Ryan(5) and unfortunately Skippy too. Now the work begins. Make beds, clean up after breakfast, start laundry (OHHH God), I never knew we had so many clothes. 11:30, Ryan says "we are hungry". I make cheese sandwiches. Ryan starts in with "Mommy makes...", "Stop!!! I'm not Mommy and today were having cheese sandwiches, I'M NOT GRILLING THEM but if your good maybe I'll add mayo". Another one for me, I'm starting to gain a foot-hold on this war. I get Ryan dressed for school, and Skippy starts to go nuts. Oh no, I forgot the girls, the bus is beeping. Counts back up to four. "God I know you only put on our plates what we can handle but this plate is getting REAL heavy!" Finally Ran's bus arrives, 12:40PM. Count down to three, I can do this. Lunch for the girls, more laundry to be folded, dinner to be defrosted, oh yea, call and check on Kylie and Mommy.
3:00 pm, time to pick up everyone from school. Back in the van we go. (Skippy gets locked in the pantry for this round!) Everyone had a rotten day school, and all have lots of homework, lucky me. Pull up in front of the house just in time to meet Ryan's bus. Why couldn't the bus have gotten a flat? O.K. count back up to seven. Now the fun really begins.....
Homework, dinner showers, tubbies, p.j's. story time and bed. Did I mention laundry? Do dinner dishes, and get to bed. I don't even have to get my sleep pants on, because I never took them off from this morning.
Time to crawl upstairs and fall into bed. 8:30 pm I can't believe how late it is. One last bed count, all seemms quiet for now. Except for a loud barking coming from the back yard. OH CRAP!! I can't believe I forgot about our new addition "Boomer" I let him in and he's full of s**t, p**s and vinegar. So, I sedate him and now we're all in bed. I'm too tired to open the bottle of sleeping pills. I close my eyes and I start to dream that I'm hearing "Daddy, we have to go potty". It can't be, I must be in the middle of REM sleep. I keep hearing it, it's true. Jordyn, and Kasey at their bedroom door. Here we go again. Ryan now takes fuul advantage of this and he starts at his door saying "I'm thirsty". Thats it, where is the razor? I'm cutting my wrists, but first I need to take a bottle of aspirin to make sure I don't clot.
I finally get them all back to bed. I stumble back to my bedroom to find T.J., Cody, Tyler, Skippy and Boomer in my bed sleeping. I quit, I might as well start on tomorrows laundry. Who needs sleep anyway? I'm "MR.MOM"
Kylie and Mommy please come home, we miss you.
Heather thank you for being a wonderful mom, and a beautiful loving wife and best friend. I will love you endlessly.
ALWAYS AND FOREVER
JOSEPH
Sunday, March 5, 2006 11:05 AM CST
Fri night this song came on my IPod while she was snoozing in my lap...I never listened too closely to the words till then, and how fitting it was......
Well its noon on sunday and I am actually home...But I almost wasent...After packign my car to come home I have a bit of an incident at RMcDs house...I wiped out MAJORLY in the parking lot, or should I say Siberian tundra. It was so brutally cold in LI that the snow , rain ,sleet, just piled up up and up and I chose to cut thru the lot rather than go arould to the walkway and I ended up soaking wet frozen with a egg on my head elbow and a wrenched back. (Nothing compared to cating one baby inside, one on each hip adn a broken foot!!!LOL) I was just over tired, scared, in pain and my adrenaline was thru the roof. Joan (the weekend manager) wanted me to go to the ER...NO FREAKIN WAY!! I WANNA GO HOME!!!!! SO Peg camer down from Kys room , sat with me till my head stopped spinning and helped me to my car! Safest spot to be for the next three hours! I got home and cried like a baby when all the midgets came pouring out the front door... We got on the couch and watched 1/2 of yours mine and ours and I creaked and groaned up to bed where I dont even remember laying my head on the pillow...I woke up and watched Joel Osteen and was ready to face another day..
i was reading Kys gusetbook adn got teary eyed looking at the "notes" seeing the rollercoaster of our journey..."yippees!!" quickly become "we are storming the heavens" and I suddenly felt paniced. I HATE that feeling
(funny note- Ryan is in the potty as I have referred to him before while I update, and I can hear him having this all out hysterical conversation..."This place is Krack-a-Lackin!!!" he is saying...the sound effects are indescribeable...)
I dont feel safe with thinking we are done anymore...That freedom I was hoping for is not gonna happen. I just wanted to stop planning for the worst. To start forgetting how one day we could be home playing and the next in PICU...argh..Im to tired to think, I have to rest up for the drive back tomorrow, with the hopes of bringing her home. I am going to make a cup of tea, and take a HOT TUBBY!!!!I feel like I was ran over by a Zamboni.
Ky is good, not looking foreward to the arterial stick for her labs but we have no choice right now. She is pale, tired, bruised and skinny skinny skinny....But well get her game back...Right now she loves pulling up her shirt, shaking her moneymaker and showing anyone who walks in the room all her "hardware" is GONE!!!! no tubie-no port
and Mom is no sleep -no brains!
I must say this...I LOVE MY HUSBAND!!Joe did such an amazing job this week. I was only able to stay with Ky thru this because he took off work ALL WEEK (and next week if need be!) and managed the zoo for me.( Do you know how much I love my husband?) You know the saying "Carry another mans cross because you never know how heavy his burden is..." He really took my by suprise this week. We have a WHOLE new level of respect, compassion and caring for each other. For years I spoke of this illness really bringing us together, making us closer, more tighter knit. Well...looking back that was a crock... I can safely say that what we thought was CLOSER..was not!!! Not even remotely!!! After this week thought, I think we actually have it down to a productive, well oiled machine! He now knows what scrambled eggs my brains feel like at the end of the day. How for a woman (or a man) with 8 kids all 9 and under, there is not enought hours in the day. How when he comes home and I look like I was crying, I probably was!!! LOL
I see him differently too. (Did I mention how much I love him??) I just feel very blessed at this moment that I was able to just stop the world from spinning and get off for a week and get back on where I left off. He did it all. 7 kids bed times, 7 beds to be made, 21 meals to cook-daily!, homework, LAUNDRY!, DISHES, tubbies, showers, fights, boo-boos, tummy aches, gum in hairs, 7 coats, 7 hats, 14 gloves, 3 different bus schedules,2 retarted dogs, one timeline project, Wed night mass for ashes, road trip to work to get paycheck, 2 hours in the mall with 7 kids all jacked up, on a full swing saturday, arguing with our cell phone company,(I had no cell all week in LI but he fixed that too!) all while keeping up tabs with Kylies progress and calming me down every time I called in a full on pinic attack, in tears, sleep deprived, missing home, worried about Kylie. He never missed a beat...( Boy do I love my husband..)It was like the IronMan Triatholon- Mr. Mom version. I doubt highly there is another person on this planet who could have done it, like he did ,so well. The house is SO clean and in order I feel like he is better at it than me!!! (I know he is!!!)
I am a lucky woman...God has given His blessings to me thru a husband like Joe.
And just in case I never mentioned it before...I LOVE MY HUSBAND!!!
LMAO
Saturday, March 4, 2006 8:57 AM CST
***UPDATE -Late Sat Afternoon***
OK...here is the scoop so far...all the same as prior with the slim shimmer of the light at the end of this current tunnel. Tomorrow they will do an arterial stick for all her levels and if the injections are stable then we MAY break her out of this joint on Monday. SO I am headed on my way home around 4pm to get in my "spot" in the pig pile and watch a movie....
Well, it is Sat in the hospital so there is not much happening. She is doing good, her thinners are not yet at a "theraputic level" (doc talk for -you aren't going anywhere yet!) Today they could not get to check her levels because Kylie has no veins. (I mean OF COURSE she has veins..could you imagine THAT...no veins...lol) And since they took out her port we have to use periferal veins but with her radial defects in her rt arm we have never been able to use it for any procedures, and the lt arm has taken a beating for 7 years and now our options are...well...non existent. SO....
As of yet there was no growth on the port culture...Hmm...so where is the infections coming from? I have my little scrap of paper I scribble Q's on for when I happen to stalk, taser, gag and bind a doc to get info from. We love Schneider and they have been above and beyond in meeting and exceeding Kylies needs all these years, but being in-patient at a big city hospital is SO no even remotely in the same boat as being in our stomping grounds at JSUMC. ANd I'm am sure if anoyne from here had to be at JSUMC they rather be at Schneiders...familiarity, comfortability...And for me even, the staff at JSUMC are like sisters to me, and we sit in Kys room and howl at my stories from home.
Cheers to Joe for staying home for 7 days with the crew...I have not been home for a week but for my 10 min drop off at 3am Sunday morning. The kids are sad but happy to have Daddy home with them. They had movie night in the basement last night and everyone has been pig piling in my bed all week...7 kids, 2 dogs, 1 daddy...
Kylie and I miss them all terribly. We both have had quite a few weepy moments when it comes to home...I miss being curled up in my "spot" in the crook of Joes arm at night and smelling his honey lotion. I miss TJ blocking the hallway and not letting me thru till I hug him, I miss Cody crawling up into my bed and sliding under the covers and whispering I LOVE YOU in my ear, I miss watching Tyler Lee being the little mother with the s and dressing them up and bringing them to me with different outfits, I miss Ryans absolutely hysterical sence of humor, I miss Jordyns voice (all you who know Jordie know just what I mean- her infelction is priceless), I miss kasey Maes little thumb in her mouth and watching her fiddle with the corner of the silky edge on the tips of her fingers, and Charlie...my sweet little Boo- I miss watching him lie on the floor driving his cars all in a perfect line in the sun by the windows.
I even miss Skippy and Boomer. How sick and twisted is THAT!!!
I am about to attempt to get Ky of "droplet precaution" so she can get a visit with the dog on his way to the unit. She has to have been on the TamaFlu (treats the Avian Bird Flu!! LOL- I keep telling her shes gonna start laying eggs) for 5 days to come off and I can't remember how long it has been.
Her sats were dropping yesterday afternoon and she was acting a little loopy, like she was loaded, but she slept and seemed fine. So when I got back this am and there was no O2 mask is was so thrilled she had a good night!! YIPPEE!!!!
I am definately afraid that since the port is not growing anything we still have no source for the infections and as soon as she stops the IV antibiotics I wonder if we are gonna have a repeat performance...a fourth ovation...{{shiver}}
OK...Babs (Barbara) her nurse gave the the low-down, down-low, ..whatever..- that the "team" is on its way to pontificate the complex situation we were catapulted into this week....Gotta scoot and get my list of Q's ready! Will get back with the scoop later!
Friday, March 3, 2006 8:33 AM CST
Hilary- we WILL catch up -ky is excited you are on your way back to NJ!!WOOHOO!!!
JSUMC ROCKS! I get messages from the e-mail and thru Ky all the time! She gets calls from secretaries, nurses, PCA's and even one of the Docs who has been trying to get her better for a month called to check on her! It was too sweet to see her smiling and blushing. She told everyoen who would listen last night, that Dr. Kahn (as in Ghengis???LOL)from NJ called her!!!!
first things first...I am typing from the playroom on Med3 where Kylie is actually playing!! She is gloved and masked but disconnected from her IV for, well...she is on hospital time and was supposed to get back "on-line" (lol) at 9am and now it is 9:30 so she has a good hour free from her stalker, Mr. Baxter!(thanks Dady Bananna for that chuckle here in the hospital!)
THis morning I came in to find 3 docs getting from the mayor of all things small and cute, here. Seems the Tech took three shots at her and blew her veins so the recovery team had to come in and clean up the situation. Her clotting factors are too low this am so we are upping the Levanox??? not sure if tht is the actual name have to look it up, its a blod thinner. In an injection...TWICE A DAY....poor baby...and at the moment we are are at stand stil with the lung clots. Have to give the thinners some time to work their magic. Still waiting on cultures from port. But we are stuck here...she has heart issues and breathign issues intermittently. I hope they will all even out with the resolution of the lung infections and clots.
Here in LIJ I am humbled. I met a young Mom at RMcD house who lost her husband in August...last month she wrapped her car around a pole on Staten Island and her 3 yr old daughter has been here in Schneiders since...She too, was injured severely and was finally able to come her to be with her. Her 10yr old son is home with family. Her foot is broken in 5 places, fractured sternum, and a bunch of other stuff...SHe is a wreck and not even worrying about herself. I noticed her walking in an air cast adn summer sneaker the night before the storm and said enough is enough, I went to my room got my Blue Uggs and gave them to her....she needed them more than I. I Paid it foreward...AGAIN, and will continue to forever and ever and ever.....
Again, its now where you are in life but what you do with it that counts....
OMG OMG OMG!!!!!! Kylie and I are SOOOOOOOOOOO spoiled by the Carlis in Califirnia...When we got here, flowers arrived...FOR ME!!!(teeheehee) And they brought such joy to my heart I cannot describe it, well the mail lady came today and had to bring a flippin gourney!!!! There were 3 HUGE boxes...2 for Ky one for me... yet again the Carlis lifted our spirits and made us smile so much it hurt. I was literally crying watching kylie rip oprn her boxes like it was Christmas...Wanna know what the goods were???...OK...here goes...A LEAPSTER!!!!!!HOLY LEAPIN CATFISH BATMAN!!! with a Disney Princess and a learn to draw and write cartridges!! And she even thought to send a rechargeable NiCad charger and batteries!!! And I got a bed tray filled with keep ME busy stuff (chocolate band-aids....mmmmmmmm)whew....we have been so blressed in this world... So much on my mind to type but Squirt has a little IV meds up next on her dance card!!! I updated her room # and phone number below...its been inconsistent, I know! Well see how long we stay here!!!
Seems to be varying opinions as to Kys being in the playroom... I do understand but am in tears for her...we gotta scoot!
I am so sorry that I have not been in contact with everyone...It had been days on end of mess after mess...First off=Kylie is in GREAT spirits, other than being in the hospital. I have been wandering between Schneiders and the RMcD house in a FREEZING fog... In 24 hours or so she has had an Echo of her heart, EKG, CQ scan of lungs and veins, ultrasound of her arteries in her legs, x rays and thru it all she was AMAZING...never once cried. NOT ONCE...
Echo showed a thickening of the line in her port so the decision was made to take it out. There was a chance that takign it out would loosen the "suspected" clot and let it loose but the surgeon said we had no control over it and no choice but to take the chance.(sound familiar?-hmmm...transplant?)
Bronchoscopy and washing was postponed pending results of the culture growth if the port line. We are waiting on results of the CQ scan and x-ray comparison before we do the CT with contrast. If there are more clots confimred on the CQ she will have the CT and be started on anti-coagulating meds (heparin) We cannot definitavly confirm the clot on the port but the general consesus is that the port is the source. Still waiting to see if the clot was infected, but her Influenza A culture was positive so her Infectious Disease Doc said the pneumonias can be the result of that...that is if the clot was not infected, which we still do not know...Yet... So with the positive Flu A we are now on reverse isolation, masks, droplet precautions, yada, yada, yada..
whew-take breath here-
SO...2:30 we headed into surgery for the port removal, I asked the doc to consider yanking the g-tube, but considering the touch and go with the port removal causing the clot to break of and make this nightmare even worse, I knew it was most likely not gonna happen. Kylie, my sweet, was telling the anestesiologist jokes in the OR...
knock-knock...whos there???...yaa...ya who??? (get it-yahoo???LOL)
and her new favorite- Why is Tigger always dirty???
Because he plays with Pooh (get it? poo???)...LMAO
A bit later the DOc comes out, all is well and G-tube it out to boot!! YIPPEE!!!!! No thrown clots and she is in recovery.
So I wake Squirt up and tell her I have a suprise...I tell her to look under her gown and rightr away she sees nothing...NOTHING...no port lump and no peor sticking out of her little belly...she was SOOOOOOO excited! You all know what this means now??? Bikinis for Summer 2006 are on her mind!!!
So...tomorrow morning we will conqure all the unknowns make some decisions (like doing the bronch CT, anti-coag meds,,,)
TOnight her sats dropped and her heart rate went up, so she may have a clot that moved deeper, or because she missed 2 doses of vanco her infection is flaring up So a little chest PT and back on oxygen she wnet I need sleep, more details tomorrow, all info prior to change
Monday, February 27, 2006 9:25 PM CST
tuesday afternoon update-
no new news...An MRV added to the list of "To DOs" (MRI of the veins) Still needs the O2...
ok...here goes what the "situation" "SEEMS" to be....it is suspected that Kylie is throwing pulmonary embolisms.It SEEMS that she MAY have an infected clot SOMEWHERE in her body throwing off little clots that get into her lungs and sit and grow yuckies causing the pneumonias and the chest pain she is experiencing is the clot going to her lungs. She is trying to wean off the O2 but it has gone back up as night approaches as has her fever. Tomorrow she will be having an Echo to see if she has any in her heart, an EKG an ultuasound of her veins and arteries to look for the clot. It may be at the end of her port and every time she is flushed she throws a clot and a few days later spikes the fever from the festering infection...Wed she is scheduled for a Bronchoscopy and a washing of her lungs to see what is growing in there. Her immune functions are at 100 er labs are all good...so this is not an immune supression issue or related to transplant. Just a Kylie-ism. But a really sucky one.
oh my...I am in full meltdown mode. But thankfully I am HERE with her..........
I hate to not mention the enormously successful Kick a thon and all the great people and things that happened there but once this drama is settled I can get back to it...
I must sleep, my eyeballs are soooooo dry every time I blink I feel like they are peeling like a grape...eek..now thats an image....
Here is a thought I have been working on and I think I have it just right...
" Right now we are on a journey,
and although what brought us to this journey is NOT a part of Gods plan, what we do with it IS!!!!"
I love you all....
Monday, February 27, 2006 2:32 PM CST
My eyes are bleeding...Sun Jordie, Tyler, Kylie and Mae and I went to LI..by 9pm we were in the ER at LIJ as Ky was having chest pains and fever...She was admitted by 1am then I took Tyler, Kasey and Jordie BACK HOME to NJ...got to NJ around 4am only to turn around and be BACK in LI by 6am. Infectious Disease and Pulmonary have now joined Transplant and Hem/Onc to try and solve this new mystery.. her sats arent good and her left lung is just a mess...She is on a new IV antibiotic and 50% O2.
Ky is sick and needs LOTS OF PRAYERS...............
I'll post more when I know anything...Right now I am just as lost and in shock and dismay as you...In fact last night and this morning I had some real melt downs of "ginormous" (new Monica word...) proportions...
Saturday, February 25, 2006 9:44 AM CST
We busted Ky out around 7pm last night, she needed one more dose of Vanco and as an added bonus a quick one time dose of Roceftin to tide her over till Monday when her transplant Docs can put her on the antibiotics thay want.
The kids all got haircuts this am (itch itch...) and Joe is at church with Cody and Tyler Lee doing their pennance. Kylie and Ryan went to cheer them on while I get the gum out of Maes hair, shower my stinky self and clean up the mass quantities of hair on the floor. The kids are excited. Ky looks wiped but she is really anticipating this. Charging my camera as I type.
Good luck with the Formal Hil- Look pretty, have fun and Get your WHOLE face into that chocolate fountain for me...mmmmmmmmmmmmmmmm
Thursday, February 23, 2006 9:57 AM CST
Well Kylie is going stir crazy and I can't blame her...
Last night I gave her a haircut in her room and she looks SOOOO sweet! I will bring my camera so I can get a pic and post it!
HOW ABOUT THAT TAYLOR HICKS!!!!
I left the hospital after 8pm and had a 45min drive home and was so bummed thinking I missed his turn but they were savin' the best for LAST!!!!
I want to hear him sing "What a Wonderful World"...that would be cool.
Lets see, were getting ready for Pennance (Co and Lee insist there is NOTHING they have ever done that would necessitate confessing...DUH!)
Sat is the Kick-A-Thon and we are sooo psyched.
We have a LONG day in Schneiders on Monday so I will be going up to RMcD House the night before with Ky and her sisters Kasey ad Jordie. Kasey is scaring me with a few pre-dispositions of DBA and the DBA docs are gonna check her out for this pathologically nervous mommy....
And there is no way in HELL that Jordie would let Ky and Mae go to LIJ w/o her...But I think when Tyler Lee catches wind that we are staying O/N she will be holding her breath or starving herself untill I agree to take her too...I planned on it but I just like to mess with her head!!!(LOL)
Right now Kylie is on the phone with Charlie...he has it on speaker phone and I can hear Kylie is singing " I like to Move It, Move it" to him....she was doing "bob the builder" untill charlie said "I dont Like Bob anymore".
She cracks me up!!!!
OK..gotta scoot, its TJ and Cos turn for a complete bedroom overhaul. Yesterday was Ty and Kys room... I need to call in the National Guard for help today...Boys are GROSS!!!Wish me luck, I have to got a Scott Air Pack before I head in there!
Wednesday, February 22, 2006 8:50 AM CST
Oh my poor Squirt...The CT scan showed a small infiltrate on her Rt. lung so there will be no busting her our prior to Fri...Dr. M says it dosent look like GVHD but she wants me to bring the scan with me to LI on Monday so they can read it for themselves and make a decision as to what it is. Poop...
She had a blast yesterday as Lizzy drove all the way from LI to see her yesterday. She was so happy!
Yesterday I got a call from Ma'am Trish of KumSung, this Kick a Thon is going wild! Like 45 kids are registered to kick, local establishments have donated 1st, 2nd and 3rd place prizes. A reporter from the Asbury Park Press is doing a story, I had an interview on the phone with her last night. The MAYOR of Middletown is going to be there to meet our Mayor of all things small and cute! (to which I am the CEO)
SHe will be spoiled rotten, the timing is perfect...10 days in the hospital is a hard nut for her to swallow and the this recent flurry of medical issues has had us all a little bit on edge...My nerves have been shot...I was less anxious BEFORE transplant!!!! We all got very comfortable in out "normal" life...Now its back to sleepless nights, empty gas tanks, forgetting to eat, hospital bracelets, flourescent light migranes, and staring at the phone...Laundry is piling up at home, I'm scattered and distracted..I am on a tear to bleach all the surfaces in the house befre she comes home, my hands are RAW!!
I did take time for Idol last night, That little Paris reminds me of Kylie..Tiny but a firecracker! Tonight should be good too...We are fans of Taylor Hicks. We go for the oddballs...I give him lots of credit! I'll loose all faith in him if he colors his hair!! DONT GIVE IN TO THE STEREOTYPES TAYLOR!!!! (this coming from the woman whos hair looks JUST LIKE THAT under the Ms Clairol chestnut brown dye...LOL)
I am looking to change the song....I THOUGHT I let go but its all back in my face....I need something else...I'll have to check my Offical "Cure Kylie 2005" CD made for us by Hilary.(copies availible!) Its soo cool, all the songs I used last year including a few of her own suggestions...I think I'll scam one off that today....
It is soooo cold I am going to start a fire to warm the kids. They are all huddled together in the living room sharing body warmth, and not fighting-(definate sign of hypothermia...) The furnace is running like a hampster on a wheel but the cold is just not giving up.
Grilled cheese and tomato sammies for lunch today, and a few to bring up to Ky-pie. An absolute favorite of hers!
Monday Feb 20th around 1ish
A little bit of an update here...Ky is going to have lung CT scan to look for GVHD of the lungs. Lets all storm the heavens that this is NOT the case!!!
She has to have 10 days IV antibiotics-so earliest escape would have been Sat but I told Dr.M that she has appearances scheduled for Sat and she said we could get her out Fri.
Cody and Tyler Lee are having their first Pennance at 10:30 and then we will be Kickin it up at Kum Sung by 1:30. I just keep focusing on the good stuff...this is all not for naught. Whatever happens we will face it with a steady faith and strong heart. But untill I the results are in I will not think about it for one more second! (yeah, right)
Well today was a good day for Kylie. She got all her goodies and she and Tyler Lee had a blast playing "Operation" and doing their nails and makeup. I was a third wheel and sat listening to my IPod trying to read the instructions for the 501(c)3 form I spoke of earlier....what a nightmare...If ANYONE out there knows how to fill this thing out PLEASE CONTACT ME!!!! Anyone who has started a charitable non-profit orginization or happens to be a CPA....toss me a few hints, I AM LOST>>>
Kylie was left tonight in the caring hands of Megan W. and Tyler and I came home to a fresh hot pasta dinner and a crackling fire (well, a smoldering good intended attempt at a comforting fire to stave off this arctic bitter cold one, but with my magic touch soon became a fantastic sight). I put my little cCharlie boo to bed and snuggled him a bit, gave extra long hugs and kisses and a long deep whiff of that baby head scent. (hes almost 3, but still has that special fragrance)
I am feeling quite melancholy today as there has been a very sick little girl on my mind the past few days. Her name is unnecessary but her plight is one I must share. You see, on Sunday this child was shoveling snow, probably laughing and catching the flakes on her tounge. Her parents were going on about their life not even remotely aware of what they would be facing within the next 72 hours. By Wednesday she was in the PICU, on a vent and septic from something we all know very well this time of the year. Strep. Those annoying throat cultures that make our kids gag on an over-sized Q-tip. Those familiar "white spots" that make us go "Oh crap" when we see them in their mouth after they spike a 102 fever and refuse to swallow ...As rampant and obvious as it seems to be come EVERY February (believe me! I KNOW!!!! I was supposed to get my tonsils and adenoids out LONG ago since I catch it at least 6 times a year)it has a very silent, stealthy, merciless side too...sometimes you don't even know you have it. This girls only complaint was SHOULDER PAIN!!! CAN YOU IMAGINE???? Yet there she is, septic, the strep went to her lungs, blood etc. Her parents are is a state of complete shock. Feeling so strongly for this child, the kids and I got her a Card and a gift certificate to Build A Bear-because I KNOW she will recover and what kid dosent want to build a bear!!! Along with a ton of prayers for her parents and even a hug, sometime during the wee morning hours, forgotten in the delerium of fatigue and terror. I knew that long, lost gaze into space, where tears slid out you eyes without you even knowing you were crying. As parent that had been there and dont that, to share their pain even if silently without knowing who I am, where I came from, or why I was even there. I just happend to be in the right spot at the right time for a parent on the brink of a breakdown.
Today I saw them in the cafe, and we started to talk. I shared with them my message. I had a job to do today, and I did not let Him down. I shared His wisdom that He shared with me. And what is that wisdom you may be asking????
That we are where He wants us to be. We have NO control over what happens, just how we respond to our circumstances, what we make out of it. How we can take it and make it a lesson learned, a message to pass on. I told them that it took me 6 years to solve the riddle of Kylies purpose for me. But with that purpose now revealed to me, I am a better person, stronger Christian, a more patient mother, a forgiving wife. I told them that their daughters illness is NOT Gods plan, but what they do with it that is. I hope that I gave them a little strength. Even if temporary, to get them thru the rest of the day. Every bit of help we get, in any way shape or form is an answered prayer. I felt purpose driven in my need to reach out to this family. My shoulders are strong, I can carry some of their burden so that they may take a breath, recoup, and come back stronger and more resilient. So for 5 mins they smiled and laughed with a weird lady who was telling them that she has 8 kids, 2 stepsons, 2 dogs and a husband and oh by the way my daughter was in your daughters place many times over for many years and came back better and stronger every time- so have faith, let go- let God and remeber to be strong not just for their daughter but for yourselves and each other and this will be a great story for her college applications...how during their families worst and weakest moments they emerged a stronger closer more complete family...a lesson learned...
Amen to that..
Goodnight adn God bless
Sunday 9am Update
ARGH.....The sweet little thing is sitting in her room crying she wants to go home. I don't blame her. She sounds terrible to hear her but her x-rays arent too bad. Her last fever was yesterday at a little over 99, so no biggie....She wants us to bring her a nacho party...and the game Operation...and red peppers..and cucumbers..and ranch to dip...its all about the food. We gotta get this baby better!! SHe has a trip to LI on Monday the 27th and we are NOT missing it again!!!!!!!!!!!!!!! If I have to smuggle her from JSUMC and return her after the appts I will....we have had to reschedule the Endo and Surgeon every month since Nov....gotta run, Faith Formation at 10....
Its Saturday Morning, Kylie is STILL in the hospital (but on the regular peds floor!! Yippee!!) and according to Dr. Sorrel, will be for a while longer. The pneumonia seen in her rt upper love can now be heard in her left lower again so this mornign she goes for x-ray to see if it is if fact getting worse despite the Vanc. and Cef. IVs. It was only 3 weeks since her last pneumonia, way to soon, so she will get the meds stronger and longer this time. Her immunuties are good, still high from her IVIG 3 weeks ago so she does not need that again. The fever is still comong back over and over and last night the tylenol was not stopping it from creeping up and up and up...Despite feeling crappy she ate her dinner (spagetti and meatballs the size of her head) AND MINE again. She had salad, and 2 rolls...And a turky snadwich on the side. She requested gum so I schlepped to the gift shop and got her bazooka and the peices are so big she cant barely fit them in her mouth ...
I did come home last night to some great news!!!
Cut and pasted from Dr. Sahdevs e-mail...
"Good news!!!!!!!!!!! Kyle's engraftment is 95s of 2/2/06"
Horray! I needed that good news!
It took her 5 months to go up 5ut up is UP!!! OK Charlie is howling, I gott arun!
Blessings
Friday, February 17, 2006 9:02 AM CST
I started this last night but fell asleep typing it...
Last night Kylie was admitted to the Pediatric Intensive Care Unit with pneumonia and all the cardiac and respritory effects that go along with it. It was sudden and shocking, she was not coughing untill we got there, we went into the ER just for a 103 fever! And it went downhill from there... I Just got home after being at her bedside for 24 hours. It was a rough night but she was better as the day progressed. She will be staying in PICU untill at least tomorrow. She ate her lunch and mine (chicken strips, french fries,animal crackers, pasta with broccoli and shrimp, spinich, pound cake)and before I left she had her dinner (hotdog, french fries, fruit cup,carrots) and a tuna sandwich...I told you the girl could EAT!!!
Now back to me this A.M.
But all humor aside, yesterday was really tough. Its been 3 weeks since her last hospital trip and this time it was worse...She gets sick ONCE in AUGUST, less than a month after discharge from transplant to TWICE in FERBUARY, this is quite frustrating. I actually journaled in her room at PICU the first night that I was upp with her all night and whenI have time I will share it with you. Its a moment by moment account of what goes thru a parents mind at the foot of an ICU bed while you stare at a moniter. I have tog et back up to the hospital.
Please pray for the kids GrandMa GiGi, she is very sick and in the hospital.
Tuesday, February 14, 2006 10:15 AM CST
Happy Valentines Day! February 14th is a day of love love love....But whenever I think of Valentines I think of hearts and when I think of hearts I think of Kylie....Kylie is a CHD kid too...Congenital Heart Defect. Kylie was born with as ASD, PDA, and extra Vena Cava, and a Bi-cuspid Aortic Vlave. WOW...What the heck does all that mean? It means she is one very mixed up kid. I focus on her DBA because it is her MAIN issue...Without the DBA none of the other stuff would exist. When Kylie was 2 she had open heart surgery at CHOP by a vary talented Dr. Gaynor. They had asked if we would be willing to try a new technique to close her ASD (a missing wall between the top 2 chambers of her heart)via cath. It would snake a little catheter up her grion to her heart and release this umbrella like device that would create a new wall... But as we all know Kylie does NOT like to cooperate and her ASD was too large...so, open heart it was, and THANK GOD!! Because once in there they found a thin membrane blocking her valves not visible on the scans! Had they not done the open heart it would never have been discovered and we would STILL be trying to figure our why she kept going into CHF. (congestive heart failure)And who knows, she might have succumbed to the effects of the invisible menbrane...I can anly imagine... Her PDA closed on its own in time, the extra vena cava is just a major PIA when we have PIC lines and Central lines and stuff done. Her Medi-Port kepr going into her left arm when they were putting it in and it was driving her radiologist bonkers!! But now its settled in a good, but awkward spot. (hint...she liiks like she has one silicone implant!LOL) Her Bi-cuspid valve COULD be an issue...COULD...It is restricting blood flow to her heart because it only has one slit allowing blood into the heart. The more she grows, the more active she becomes the more blood volume has to go thru the valve...She seems to not be growing at all. (good for the valve issue but BAD for Kylie in general)Its one of those things we have to wait untill its a problem to do anythign about...ARGH...So, yes..there are a lot of things you may not know about Kylie, her bone marrow failure was only one thing out of dozens of life threaghtening issues we faced with her birth. I think to discuss it now on a day like this because I want everyone to remember to sign that Organ Donor Card...Walk for the March Of Dimes, the American Heart Association, The Red Cross...Today is the day of hearts...Lets remember how not everyoens heart works to well, will last their life, or came with all the peices it needed or instructions on how to write to the manufacturer to get new parts. Remember our CHD angels like my sweet little Nelson...
Friday, February 3, 2006 9:25 AM CST
Update on Codys MRI, I have had a few requests for his outcome.
Seems that my 2nd eldest boy has his head so cram packed with snots that he is getting mirganes!
And we thought he had brains in there!! Well, I know have undeniable proof, absolute evidence on film that he, in fact, does NOT! All hes got in there is boogers, AND LOTS OF 'EM! Nothign like some majorly impacted sinus cavities to get that whole "wish my head could pop like the Jim Belushi impression of a zit in AnimalHouse" thing going.
And guess what???
It's catching!!! (snort, sniff, spew...)
We made it! Another trip to Long Island without major incident! No road rage (well...not any I will admit to!) It was a long trip up as the GSP seems to be getting just as bad with road work as the Belt Parkway, it took us nearly 3 hours ! YIKES! We did get to stop by the Ronald McDonald House and meet a Canadian DBA family who made the trek from the other side of the continent to meet with the Dr. Lipton and Dr. Vlachos. We were so happy to be able to share our success with them and give them some tangible hope for their sons future. Just to see Kylie running and bouncing and smiling, to see the QUALITY of her life in addition to which will now also have QUANTITY thanks to her transplant. We certainly have a lot of issues to deal with but now it seems to be out of her transplanters hands and into the hands of a doctor who specializes in post transplant endocrinology. So back to Long Island we go on the 27th...
One of her ears are STILL infected so off we go to ENT to see what can be done about that! She has had more antibiotics in the last week than I have had in a lifetime yet this nasty stuff is still lingering...Poor kid. Her pressure was low yet again and she has not grows a lick and is actually loosing weight. Now, If ANY of you have seen this kid eat you're saying WHAT??? LOST WEIGHT?? What is her secret!?
She has been nicknamed the One Man Slaughterhouse by TJ, I mean this girl POWERS her food, and LOTS OF IT!
She is absorbing iron at an alarming rate, we actually had to TAKE blood from her to try and lower it a little. We chelate 5 nights a week 12 hours a day but to no avail. The new oral chelator Exjade is available but the few kids they tried it on all had to come off because of elevated liver enzymes soooooo since Ky's AST and ALT are ALREADY way too high they don't want to put her on it...Damn...
Her last VNTR was still 90ext visit they will run another one. We have to make sure she has not dropped within the first 6 months, that is VERY important, so I will fret for the next month or so awaiting the test to be taken and the results to come in, but since she is chugging out her RBC's at a phenomenal rate we have nothing but high hopes...
We were greeted by Aunt Peggy again and she was sooo happy to see her LI family. Tyler Lee came along again as she is now Kylies Official Entourage. She even plans on coming for the two day trip for G-tube removal. Her relationship with Kylie has blossomed greatly since transplant. Being only 11 months apart our plan had been for them to be best buddies but when Ky was born so sick, those dreams came to a screeching halt. With her delays and needs, she never developed at a normal rate and she was more comfortable playing with Jordie and Mae than Tyler Lee but since transplant Kylie has mature socially and although still far being for her age, she is catching up fast. We moved Kylie into Tyler's room and they are really developing a great friendship. I am so proud of both of them.
Fay, one of Kylies Child Life Specialists was at clinic yesterday and seems to think we are quite entertaining! She was loving the pictures on my camera and I-Pod and always enjoys listening to Monica Moments. She gave the girls a great book for sisters from the American Girl Library called Oh Brother...Oh Sister. A Sisters guide to getting along. We plan on using it daily!! They colored, played games and laughed. I love watching them all.
Cody is STILL home with tremendous headaches so BACK to the doctors with him again today...
Sam from Red Bank Catholic is coming over tonight for pizza and a mauling by the kiddos.
And most importantly, yesterday we delivered the FIRST TWO CARE PACKAGES to the transplant floor at Schneiders yesterday. A 17 yr old girl and a 9 yr old girl. Kylie was so excited and I was overwhelmed with joy. I hope the girls enjoy the goodies and it puts a smile on their faces despite feeling so sick. That is our only goal.
Wed Joe and I celebrated our 9th wedding anniversary. A little sushi and wine in the basement family room. ALONE! (true to our luck they made the WRONG sushi) We watched America Idol and laughed our butts off. It was an early night as I had a long day ahead of me on Thurs but we plan to go out this weekend and toasting the fact we survived 2005 without killing each other. Here is to the rest of our life together, there is nothing we can't overcome. 
Blessings to you all!
Monday, January 30, 2006 8:22 AM CST
Monday is here.WHEW another weekend survived! Kylie is home and doing well, but Tyler Lee and Cody are not faring so well. Ty has a wicked tummy ache and Co has been suffering for migranes for about a week with no real relief, so back to the doctors we go today,I'm sure just to be told to go to the Neurologist who wont have an appt untill 2007...ARGH!
Last week was stressful with Kys first real illness since August but it alswo was enlightening and fulfilling. Kylie and I were invited to speak at a High School about her life but since Ky was in the Hosp it was just me and my motley crew. I certinly felt like a babbling baboon but Tyler Lee blew me away that night when she crawled into my lap and said, " You gave a really good speech today Mommy. You made me laugh and cry at the same time..." I never even knew they were paying attention, they were off to the side coloring and being spoiled. Then they all got into a biosterous discussion about the merits of my speech and I felt like I had just been given the Nobel Peace Prize...
My kids are such a blesing and gift...
There seems to be a great surge in intrest in Kylie and her struggle and we are back to ordering bracelets and orginazations are starting with fundraising again for us. THank God too because we are back on a long hospital train in the upcoming months and some big bills have rolled in related to Kylies last year in the hospital. BUT also, we are trying to get the Pay it Foreword program off its feet and start sending packages of love to kids and their families going thru transplant right now. On Thursday I plan on hand delivering at least 2 to some kids at the same SCT unit Kylie was on for what seemed like forever... Involved in the fundraising efforet are Red Bank Catholic High School, Kum Sung Karate located in Middletown NJ, and KS Fitness, and Tiffany's Restaurant located right here in Toms River NJ. THe high school had sold candy, bracelets, had bake sales and how cool is this??? Kum Sung is planning a Kick-A-Thon for the end of Feb. I really must sit down, collect my thoughts, count my blessings and breathe...I just need to share my good fortune and feelings of blessedness to those who aren't so hopeful, to those who have lost faith, or just to those who have forgotten to be both hopeful and faithful. And how best can I do that??? By taking Kylie and showing the WORLD THERE IS HOPE!!! The worst of the worst CAN become the best of the best!!
Gotta scoot, I hear Froot Loops rolling across the kitchen floor!
Thursday, January 26, 2006 9:11 AM CST
***UPDATE*****
Kylie is home!!! YEAH! Thanks for everyones prayers and thughts, they really work! We will be heading to Long Island Thursday so they can get their hands on her. We have a LOT of trips up there coming up... Surgery, Endo, all in addition to clinic! Heres to some better weather for safe travels and less boogers!
Well, Kylie is thuroughly spoiled up on Peds. I hope they let her home tomorrow. Yesterday they said three more days of IV antibiotics so keep your fingers crossed. She is still junky and coughing and breathing hard. So we will see...I will bring my camera today to take pictures if her "tent" Michelle made for her over her bed. She gave my the low down on the staff meeting this am, what she had for breakfast, what she ordered for her meals tomorrow and COMPLETELY rubbed in the kids noses that her nighttime nurse brought her a bag of goodies last night. I am now going to be tortured by Jordie, Mae and CHarlie untill I go to the pharmacy and get them some ring pops. TJ is home wheezing like my vaccuum after a baby powder ski slope clean-up and Cody has a migrane and is going to the potty so much I think he's gonna dry up and crumble. CHarlie is expanding his vocabulary at an exponential rate...He threw a toy and I asked if he wanted a time out. His answer??? " No way Jose."
Jordie and Kasey found a Christmas lipstick courtesy of PopPop and Grammy and have slathered it all over their faces and Charlies too. CHarlies nails are painted (toes too)and he seems to think he should have pretties in his hair too...Being a little brother to 4 sisters seems to be getting him in touch with his feminine side...In 25 years he'll be either a sensitive attentive husband or in therapy...I must get dressed. Visit with Cody to the doctors and 11:30 and I don't think they would be impressed with my polka dot flannel sleep pants and blue Uggs. (oh, but I LIVE in them! Definite plus to being an at home Mom! Jammie pants 24/7!)
I will update her status tomorrow!
Monday, January 23, 2006 2:52 PM CST
Well... last night all my fears came flooding back to me...Ky was sick with fever for over 24 hours, her bilateral ear infections not responding to her vancomyacin and coughing, wheezing and shortness of breath...I took her to JSUMC, her hospital here in NJ and she was admitted with pneumonia and massive bilateral ear infections. She was immideatly given a dose of IVIG (IV immunities collected from donated blood) and a plethora of brutally strong IV antibiotics and right away they were talking transport to Schneiders...I stayed with her untill 2am when we were SURE there was going to be no reaction the the IVIG and was back early this am. Her health deteriorated thru the night and was placed on blow by O2 to keep up her sats. She was tachycardic, retracting, decreased breaths and heart rate. THe benadryl pre-meds for the IVIG did make her get some much needed sleep though. And although this all sounds terrible, there she sits, sick but smiling, talking about food, but not eating much and winning the hearts of everyone who passes her room. We were relieved to learn that she will NOT be transferred to Long Island....WHEW...but being viral pneumonia there is not much we can do but wait for the worst to be over. The antibiotics will clear the ear infections and keep it from getting to her blood nad whatnot. But microbiology was still pending for the blood cultures so I am not sure if it already got that far or not...
Her Hb was 14.6 (better than mine!!!)
But her AST and ALT were too high again and we still have no clue as to why. I'm sure we will discuss that when we get the big stuff under control. So I had an absolute melt down, I am sleep deprived and psychotic. Waiting for the other shoe to drop...Shame on me for getting so cocky about her health! So please pray for Kylie Jae and for the rest of us too...
Friday, January 20, 2006 7:02 PM CST
Well, word is I am a webpage slacker....I think I am just a little...slow...Well..no, she is right. I AM slacking. BIG TIME! I have no excuses. If I had 8 kids all 9 and under, 7 loads of laundry a day, a school bus schedule that looks like a schitzophrenics brain scan, a wacko dog with abandonment issues, a kid with two ruptured, bleeding ear drums due to an antibiotic resistant staph infection in her ears DESPITE the permenant tube that were put in prior to her bone marrow transplant, to which I have three appointments related to THAT issues 100 miles away all in the next 4 weeks, a grocery list that is infinite, Christmas gift markers all over my dining room walls, 1.4 MILLION beads from do it yourself jewlery kits all over my house, a sink AND dishwasher full of dishes, sticky floors (don't ask), then M-A-A-A-A-Y-B-E I would HAVE an excuse but since NO HUMAN could ever survive THAT kind of life then....wait...oops... HOLY CRAP!!! I DO HAVE THAT KIND OF LIFE!! ALL THOSE THINGS ARE TRUE!!! (unlike the Oprah Book Club book Falling to Peices...LOL) Holy Leapin Catfish Batman!!! Daaaamn...I guess my doctor is right..I need a vacation... he said if I don't slow down he will diagnose me as as mentally insane and put me in a Rubber Rabada for a month just so I can get some rest. Puhleeeease..Like I just told Lynn (Justins mom), people drooling, licking the windows, peeing in their pants, getting food all over, crying down tha hall all hours of the night keeping me awake...I get that at home. THAT is EXACTLY what I need the vacation from!!! But still, his intentions were good. ( we wont tell him I REEEEALLY am mentally insane, which is why I seem to be able to wake up each day and not try to crawl under the pool cover and drown myself!- I'm too damaged to realise how abnormal my life really is!) I saw a poster at the lab on Wed that said I smile becaus I have NO IDEA WHAT THE HELL IS GOING ON!!!
Works for me!!
Love you all!! Be back soon!
Yes Hillary, we realld do have a mental connection... but that only means that you are just as insane as me!!
(You are actually on the phone with me as I type this! LOVE YOU KIDDO!!)
Tuesday, January 3, 2006 1:43 PM CST
OK Its 1:30 on Tues Jan 3.... Most of the kids are at school and I just came up from the basement where I set Jordie, Mae and Charlie up with the DVD of " Move it, move it" (what Charlie calls Madagascar) I think I have looked at the computer once since Christmas. Yikes. Thats almost a sin for me. Honestly, I have been sick since around Halloween and the past month was really bad...flu, kidney infection, some kind of brutal chest cold and horrendous migranes! I was really sick Christmas Eve but managed to eek out Christmas Day then I was supposed to have people over on New Years, but that did not happen. I was not feeling well enough anyway, so we just went to a friends house next door.Debbie, Bridget, Joanne and I went to over to our other neighbors, Chris and Kennys house at one point to wish them a HNY and while in their kitchen we raised our glassees to a toast to Ms Kylie Jae. I have some wonderful friends...I actually slept for over 24 hours one day. I guess I have a lot of sleepless years to catch up on. LOL
Actually, typing this out is a major PIA even but Im not sure if its because my fingers hurt or because the keys are stuck together with gold glitter glue. It sort of a draw. All you fervent CB readers...remember Julianna Banannas " I SURVIVIED 2004" sticker??? WEll, Im making one that says I SURVIVED 2005 but Im gonna make myself t-shirts, coffee mugs, socks and undies, sweat pants, maybe even a tattoo...because I never want to forget it... I SURVIVED IT...ME..thats right..ME...Kylie has the Grace of God with her, she has more Angels than the baseball team (wherever they are located these days...) SHe has been in survivor mode since conception. Its all she knows. But its nice to see her retired from that job. No longer a "fighter" either, except with Ryan Jordyn and Kasey Mae, they will all fight for an etenrity. Shes just a cute, nosey, whiny, 6 year old whos purpose in each day is to learn what the mext meal is. At breakfast shes wondering about dinner, reminiscing about her previous meal as if it was a fine bottle of champagne, or a sunset over the carribian. Taking pictures of cheese with my digital camera....weird... Thats Ky. She had a blast making christmas cookies and was more excited watching the other kids open their gifts on Christmas day. SHe even presented Jordie with a hand-made Blue Angel necklace she made at her class Christmas Party. there was a craft table during the festivities and Kylie wanted to make this neclace. When she was done she told me it was Jordies Christmas Present because Jordie was her angel...So she hid it in my purse, and we wrapped it up nice at home and during Christmas Dinner she gave it to her. It was very sweet and such a GOOD feeling to have all that behind me. Does she still have issues? YEah...she will forever, but to us they are like fluff compared to the last 6 years. To us its like saying "my kid has a cowlick". No big deal...
We did have some big doins over here last week. Hilary Woodward The CEO of the Cure Kylie Club from Voorhees/Baltimore ( she is in college at Loyola) and her mom came to visit us! It was a long time in coming and we were sooooo excited. THe day before I was pretty sick but I REFUSED to cancell on her. Its nothing anyone can catch and so as long as she did not mind that I move a little slow and look like I was hit by a semi we were fine! I have promised Kylies presence in many places...Voorhes Pediatric Facility, M F Stokes School in Levittown NY, not to mention Schneiders in LI but the furthest I have driven in weeks is Cedar Grove School, less than a mile away. I have not forgotten ANY of these promised appearences and I will make the arrangements soon!!! And Kylie did manage to get to her West Hempstead Family the O'Donoghues and spend New YEars with them thanks to the Willmans. (what an AWESOME BUNCH OF FAMILIES- Thanks for the stockings Peggy and Lizzy, no more wondering over whos pencil it is! YEAH!and its fun to watch Skippy spin in circles trying to get the Dora stickers off his butt)
But for now I must sign off...I have promised pictures of her making cookies, with Hilary, on Christmas etc and I will make good on that promise just not today. I am going to have a hot cup of tea go lie down with the babies and watch a little Madagascar before I have to get the big 'uns. Hot tea, fuzzy slippers, warm jammie pants and little toddler heads singing "I like to move it, move it" might not be able to cure what ails you but it can sure make you count your blessings, smile and forget for a moment all the things you wish you could forget permenantly!
Happy New Year! Heres to a BIGGER AND BETTER 2006
OUR FIRST YEAR WITHOUT DBA...
THE FIRST OF MANY MANY TO COME
Blessings to you all, my heart soars with joy- you have all touched our lives in one way or another...
And to quote for Hilarys short but sweet email this am...(lol)
Oh, and another good omen...last night after the ball dropped, I set my iTunes on "shuffle", hit play, and hoped that the first song of the New Year would not completely suck. Honestly, I'm not even positive I like all the songs on my iTunes. I'm not even positive how some of them got there. But guess what I got? "For Good." :-)
For Good was a GREAT way to start the New Year ,Hil... It is one of my personal favorites..."You are with me, like a hand (foot) print on my heart..."
During your times of trial and suffering,
when you see only one set of footprints,
it was then that I carried you."
Mary Stevenson
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