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Thursday, June 3, 2010 4:25 PM CDT
************ PLEASE HELP!***************
all right kids.... you know i never ask for ANYTHING.. but this?? i will beg for... Please help secure Kylies future by helping fund the research that has already saved her life MANY times over. Support Joe Creiler. Support Kylie..Support all the families that will someday hear "Your child has DBA".....
Dear DBA Families and Friends,
Many times throughout our DBA journey, our lives intertwine with amazing people… sometimes heroes. It is our pleasure to introduce you to a true DBA hero. Joe Crelier from Albuquerque, NM is a regular blood donor, who recently learned about DBA. Joe was so touched by our families that he has decided to go the extra 140.6 miles for us!! In honor of our patients and families, Joe will be participating in the Janus Charity Challenge in. Our “Ironman” will swim 2.4 miles, bike 112 miles and run 26.2 miles, dedicating each step to our DBA families. Joe sets his ambitions high and he has also set a goal of raising $100,000.00 for the Diamond Blackfan Anemia Foundation to continue our mission of supporting our families and funding important DBA research. We have been amazed and truly humbled by Joe’s generosity, determination, kindness, and concern.
We are reaching out for your assistance. Help support Joe in his selfless and inspiring feat. Please visit our website http://www.DBAFoundation.org/ for a link to Joe’s page, or access it directly at http://januscharitychallenge.kintera.org/cda10/dbaf. Donations can be made through our website, Joe’s page, or by mailing a check directly to the DBAF. Please indicate that your donation is in support of Joe. Please pass this information on to your families and friends and be a part of this remarkable accomplishment. Joe will be training hard for the next nine months and I ask that you help to keep him motivated and inspired. Let’s show him the DBA community around the world appreciates his hard work!
Monday, August 3, 2009 2:59 PM CDT
This is a new one for me...I'm updating from my cell phone. And this time its
Not kylie in the hospital ...or Joe...its actually me! Yep..I've been in
Community since Sat.its my liver, small intestine, and gallbladder. They
Are all swollen and the gallbladder is infected. I have been puking
Since Sat. And NPO since 1am fri night after the Foreigner concert.
Meaning I've had no food or drink in 3 days. In true CMC form i
haven't even seen a Dr yet today.And its 4pm....yikes...I have had
More tests then I thought possible these few days. The CT did not
Go as planned because I puked the barium up before they could get
me to CT...was supposed to have upper GI today...SUPPOSED to...
They think I may be having complications from endomitriosis
Adhesions..same reason I had the hysterectomy...so..it could be
Surgery to take out my gallbladder..or surgery to clean out all
The adhesions..no idea ...yet..but my patience is running low. I
get Zofran for the nausea IV..and it is a gift from God! The
protonics helps my empty tummy, Levaquin for the infection
And dilaudid for the pain. They gave me morphine in the ER and
guess who is now allergic? Yup...ME! Good times...good times..
Ok..this is a skoosh difficult to text an update. So I'm gonna
Bail. Damn food commercials are killin me here...love to you all
Blessings H
Wednesday, July 15, 2009 2:29 PM CDT
Yes folks... im now an offical blogger... click this picture... at your own risk!!!
I will keep this page going for Kylie and Grateful Giving stuff, so no worries!
ENJOY! If you dare!!!
Wednesday, June 10, 2009 11:08 AM CDT
#1: sadly even the Mayo Clinic has been unable to diagnose the cancer. They havent given up hope and have more tests they can run. More surgery still looms over Joes head and my heart.. I will update more when I get more then that...
And since I know some of our Cedar Grove family checks Kylies page as well, this is the thank you I dropped off at school today...
Dear Cedar Grove Family,
“Thank you” are words that cannot appropriately encompass our gratitude for your genuine graciousness. We are truly blessed to be a member of this community and school system. You have taught, encouraged and supported Joe and I as well as our children. You have taught us that school is not just a place we send our children to learn, you have encouraged us to believe that despite some harsh realities, our life is abundantly more blessed then cursed and you have supported us thru our hard times, emotionally, physically and financially. When Kylie was born, what we thought was our family’s path, drastically changed. We dug deep and drew on our faith, that the path we were put on, was meant for us and there was a purpose to it all. Every event following April 23, 1999 led us here. A change in jobs, a change in towns, a change in schools. And back in 03, I was completely unaware that in my heartache, God was in the background working fervently by making sure our new house and community were to become our home and family. And with every tragedy, our family continues to remain triumphant. A feat, that this family alone, cannot claim responsibility for.
I looked up the definition for patriot…and what I read was remarkable:
Patriot-
a person who loves, supports and defends his or her country and its interests with devotion.
If you consider our school community as “our country”… then calling the staff and faculty at Cedar Grove “Proud Patriots” couldn’t be more accurate. You have loved, supported and defended the interests of this family consistently and unconditionally since we arrived here. And for that, we thank you. A million times over….
With MUCH love,
The Monica Family
Tuesday, May 26, 2009 12:14 AM CDT
as posted to my Facebook...
Who cares what color the damn walls are!
Sigh… tonight comes with such….hesitancy. We are all silently nervous… vocally frustrated…emotions all mixed up and muddled. DO we cry? How do we remain positive? Is it ok to still smile? What a mess….even now, as all my chores lie undone…I feel nothing but OH CRAP…And to add to it all.. we get a certified letter from Codys school that if we don’t provide proof of his TDAP and Meningococcal shots.. he cant go back to school Monday. The SAME shots he had before he started the new school. The SAME shots I had proof of faxed over before school started in Sept. And that note is even in his file. Where it was faxed, what number, to whom and what day. Yet here we are… the WORST WEEK EVER for me to be running like chicken with my head cut off… and its got to get done TODAY.. because its not gonna happen Wed. Thur or Fri…Cody is in a panic because its his nature to panic. So… here I sit… waiting for Charlies bus and counting down the 20 mins the secretary told me to wait. I feel so anxious. The gloomy dreary rainy day, so apropos. Im sitting here… thinking.. whats next? Then I slap myself and say DON’T SAY THAT! CHRISTMAS, WOMAN! DON’T SAY THAT! Lol I keep staring at one toe.. the white from the French pedicure I gave myself is a little nicked and annoying me. Im sunburnt and itchy… my hair keeps getting stuck in my glasses..Im stuck with milk for my coffee.. but I guess after 27 cups, it really dosent matter. My heart is ready to jump out and unplug my coffee maker. And I find myself thinking… wow.. time flies.. while your worrying about the nicked French tip, the stupid shot form, the rouge hairs that drift despite my pink Yankees cap. While all these things happen… time passes… time you cant get back. For the last few weeks.. I painted.. like a psychotic person… every damn day. I was like.. Its gotta look nice.. hes gonna be stuck home.. recovering.. and I don’t want him thinking.. what a mess..lol.. yeah… like painting was really gonna help THAT. Please.. 8 kids… 5 dogs… a rabbit..a poor fish in his green jello. I could paint, spackle, redo floors for an infinity.. and the house will always be a mess.. And I for one have wasted too much time and energy stressing over it. I am a confessed slob.. a train wreck… a complete and utter tsunami of chaos. Like PigPen from the Peanuts… the dust cloud surrounds me. Add 8 kids more like me then anything into the mix, and there is no Farmers Almanac that can prepare you for the storm a brewin’ here. And put us all in a stressful situation… FORGET IT! So, in an attempt to please Joe and to distract myself… I threw myself into a spring clean up of biblical proportions… Almost 30, 55gal bags of clothes, shoes, sheets, towels, etc. that were packed and donated. New paint.. new landing carpet.. (still as of yet to be installed, but its propping my feet up nicely right now!) new tile hall…back deck all decked out in herbs ive sprouted from seed… sun flowers that I have planted no less then 4 times at 40 seeds a pop that my Rambo-esque insane possessed squirrels rape and pillage despite all my squirrel avoidance contraptions. Hanging candles, fire pit, strawberries! All this time and effort into preparing.. and now… that the time is here…. Im thinking … its all looks nice. If you can see past the dust on the 20 pictures on my front hall wall,three skateboards in the hall, the 17 hundred scattered flip flops all over, the legos and Bakugons and books on the couch,empty hot cocoa mug on my mantle, TJs Monster cans displayed on his tv, 8.5 million cotton ball particles that the dogs have scattered thru my house because Tyler Lee left the bag on the floor in her room. You have to look past the life going on around to see the work I did. When all your supposed to do.. really is notice the life going on around you. Not what color the walls are.. or what kind of flooring…or what kind of light switch there is. Ignore the décor… and what I see is a slew of pictures of some very happy people! I see that I now I have three kids old enough to skateboard. I have kids that are reading on the couch at night sipping hot cocoa in my reading chair. My girls are old enough to do their own nail polish. Life is going on… regardless of my wall color.. time is passing, fast… whether it’s a mess or not…I should worry more about whats going on inside my house.. not what the inside of my house looks like….So… I am admitting here.. right now.. I was wrong.. a fresh coat of paint does freshen things up.. but… its not what makes my life more complete… its watchgin Ryan learn skate tricks from Josh.. Its watching Joe-Joe tell the boys that girlfriends are HIGHLY overrated, its watching Tyler Lee show the little girls how to file their nails properly. Eating brownies that Cody and Tyler Lee made with the little kids so daddy and I could talk alone without being harassed by small whiney children. Yes, its has changed. The flip flops have gotten a lot bigger. The meals I cook have too…Clothing stores have evolved from Baby Gap to Hollister and American Eagle. Playinig football with them now causes pain, not giggles and tickle piles in the grass… And no matter what color my living room is… its gonna keep going on and on and on.. Tomorrow may bring me to an entirely new crossroads in my life.. Things may change drastically.. they may only change temporarily.. who knows.. but.. my bedroom, despite its new Morning Fog color.. will still be filled with I LOVE YOU notes from Kasey Mae, laundry from everyone, books I keep trying to read and AA batteries hidden for Joes remote. Tomorrow… my life will go on… my husband will be minus a thyroid and some cancerous tumors, my dogs will chew a toy under my bed that I will have to climb under and clean up, Charlie will search out Joes protein bars and eat them all, Kasey and Tyler will fight, TJs hair will continue to grow despite my threats of a midnight head shave. All this things will go on.. and no one will notice what color the walls are when they do.
Blessings to you all… much love-
Heather
Wednesday, May 20, 2009 6:36 AM CDT
Well.. what can I say. LONG TIME NO SEE! Kylies heart monitering is over. I will return the moniter today. THe last two weeks were not much of an accurate reading since she LOST IT! But she says she only had one or two.. maybe three "episodes" anyway. Who knows... whatever it was, it seems to have waned in its severity. So, for that I am grateful. Still needs to be dealt with.. but, we have other things that need to be delt with right now. THe Monica boat has again been rocked by a wave of biblical proportions and our heads are still somewhat swirling in the wake that was left behind. A week from today, Joe, Kylies dad, and my voice of reason, will be having surgery to remove his thyroid and a cancerous tumor from his neck and the lymph glands that it seems to have spread to. I know... WHAT???????? ::insert expletives here:: My thoughts EXACTLY! AND THEN SOME! Yeah.. so.. things here have been in a bit of a tizzy. And with Blue Cross/Blue Shields computer telling everyone we arent members is just adding more fun to the festivities... We show up for a CT scan last friday, they take him back and tell him... Well. your insurance denied your tests from last week, so you can pay for them now, THEN we can do your CT scan... SO.. What does Joe do? Well...Joe comes and gets me... and thats when things got interesting....God made the Blackberry Storm for a VERY GOOD REASON.. and this was it... my ever expanding contact list got a workout and in about 15 mins they were receiving a fax confirming our enrollment AND a phone call from Blue Cross/ Blue Shield explaining the situation. And shortly there after, Joe was scanned, done and aggirvated at me for making him now go get bloodwork done. "But, its 3pm, Im sure they are closed..." "Oh... I dont think so, but.. LET ME CHECK!....www.labbcorp.com....oh my! my web browser on my phone is telling me they are open till 4! LETS GO!!!" ::insert explitaves from Joe this time:: whaa whaa whaaa.... He'll thank me for my persistance ... someday.. i think.. I hope...probably not...sigh. Oh well... So, needless to say, we're keeping busy over here...maybe Ill journal about this.. maybe not.. Its really Joes call.. Maybe Ill just make him his own caringbridge page.. Again , up to him entirely...We shall see... I notified the kids teachers yesterday, just so they would have a heads up should things get more insane then usual around here next week. And to let them know that I wont be around for a few days and that family will be helping me with the kids...THey were all so wonderful with Kylie... Im truly blessed to have such a genuinely caring school staff to comfort and support the kids. Just knowing that they know... eases my mind. I know the kids will be treated with lots of understanding and love while they go thru yet ANOTHER trauma in their young lives... I feel so bad for them. Really.. when is enough, just that? ENOUGH!
ok... track morning for Tyler Lee, so Im off to take her!
much love to you all! God bless!! ENJOY THE SPRING!!!
Tuesday, March 24, 2009 10:49 AM CDT
last week Kylie was admitted to JSUMC for cardiac issues..she is finally home, but the updates I was making went to my Facebook as I have a Facebook application on my phone that is 8.6 billion times easier to use then using the web browser to update my CB page.
Sunday:
Oh the joy of the one line update field that allows me only so many characters to squeeze in so much information. All hail the NOTE BOX. The Facebook Blackberry application is as much as a blessing as it is a curse. It staves off the sheer mind numbing boredom of the ER. And disctacts your mind from wandering into the realm of "I know way too much then I should" territory. But its also way to brief of a resource for the Kylie followers to have a functioning grasp on the situations at hand. So. . this is where we are at right now. Kylie is home. End of story. No. Just kidding. Well.. sort of. No answers.. No clue as to why or what. Just that it is. Her chest hurts like someone is pressing on it. Or sitting on it. and occasionally she says it feels like the person who is sitting on it, starts to bounce up and down. And when she stands up, she feels like shes going to fall over. THen i think to myself.. Heck even I FEEL THAT.. but.. there really IS someoen jumping up and down on me. SO I know where my pain is coming from. She dosent. Walking home from school proves difficult. Sometimes even just walking up stairs. SHe has an extra copy of books at home so she dosent have to carry all that weight in her bookbag. TOday she haas no complaints. Thankfuly. TOmorrow, she goes to see Dr.Zales and get a Holter moniter.But what it is or where its coming from.. No idea... Her echo and EKG were looooovely. Her heart, structurally is GAW-JUS. Her repiar, still intact. WE had a brief moment of panic when a brain cell challenged Dr. told me she was sufering from renal insuficiancy. Yeah.. UM... WHAT???? So... ixnay on the idneykays. ... THis is what info we've got. Basically nothing. BUt I promise... as soon as i DO get some info... Ill try and get it out clearly and not so cryptically in a "Heather is" format.
Thanks guys,, you all rock!
this... is.... today...
a HOLTER monitor (also called an ambulatory electrocardiography device), is named after its inventor, Dr. Norman J. Holter. A HALTER, headcollar, or, less often, headstall, is headgear that is used to lead or tie up livestock and, occasionally, other animals....I laugh at the actual similarities, as I look at Kylie hooked up to the prior, not the latter. My oh my .. how technoligy has come along in the years since we last had to don the Holter. Last time Ky was on a Holter... it weighed more then she did. TOday, this thing is smaller then my Crackberry. Amazing...simply amazing. SO. here sits Miss Ky. I look at her and think she looks like a Hybrid mini Cooper with an electric battery. I think the Energizer bunny aint got nuttin on HER cuteness. I think... WTH?
Dr. Zales, ever the caring and empathetic doctor, is wonderfuly understanting of the complexity that IS Kylie Jae. Never one to underestimate the possibility of something unusual being an issue, he wanted to look at her perfectly working, albeit unusually put together little heart first hand. A EKG and quick echo, a little Q&A time and some lollipops for all people in the room 35 and under. I did NOT get one...:-(
BUt Tyler, Jordie, Kylie and Kasey did. (unfair, I say!!!!) He cant see a darn thing. Now, he DID say... that although an ASD repair is an easy and permenant fix for what was her most acute cardiac problem, it CAN happen, although HIGHLY UNSUSUAL ( you can see where I am headed here , right?) that an ASD repair can cause an irregular heart rythem.RARE...but...it can happen. And as I am typing this, Ky has come to me with her little log book and ask me to note the time and her symptoms. 11;12-Activity-watchign tv in bed. symptoms-someone jumping up and down on my chest.
Next up...Pulmonology? Endocrinology? Is it asthma? Could she need synthroid again?
Its a test...
A test of my EMERGENCY BROADCASTING SYSTEM
But. never one to not see the big picture...Kylie is healthy. In great spirits and a complete and total inspiration. Healthy, considering. But its frustrating. For her too. Shes been thru hell and back. These things are more of a nusiance then anything, but more then that.. they are a reminder. A reminder that Diamond Blackfan ANemia is a relentless, irritating, nagging bane. Wait.. thats what Joe called me last night!
Whining complete....gingerale gingerly sipped...Jeorge ate all my saltines.
Sat. Feb 21 2009 9am
Saw the video to this song on Leslie and Megs Facebook pages. (Camp Sunshine Yellow shirts adn the mostest awesomest peoples in the WORLD) adn thought instantly... KYLIES PAGE! so.. enjoy my friends... this is our wish to you ALL!!!!
Sunday, February 1, 2009 8:33 AM CST
ok... first off today is Joe and my 12th anniversary? can you freakin believe that??? Man.. weve had the worst of the worst times, but the best of the best times too.. and the best ALWAYS wins over the bad! I always said, its the sour things that make the sweet ones that much sweeter! Ten kids, 5 dogs, DBA, fires, moves, flat tires, clogged toilets, broken children,crashsed computers.. you name it, we have been thru it. And oddly enough, we are still smiling! Albeit a little twitchy kinda creepy smile that looks like it has been medicaited, or, if not, SHOULD BE medicaited. But it is a smile still nonetheless... Today we celebrate. WHat better day for a Super Bowl Party? So, tonight, about 90% of all the Monicas on the planet will convene at my house for nachos, popcorn, soda and what I hope to be a Cinderella story Supepr Bowl win. Since its not the Giants playing , who we ALL agree on, the opinons on who will win tonight are across the board. THis should be a blast.
And yesterday... ohman yesterday... I cant type much about it today.. But know that I will. We spent the ENTIRE day in Long Island filming for March 22nds episode of Extreem Home Makeover. Our DBA family The Bells of Tucson Az were awoken this week by Ty Pennington and his crew. They were flown to NY and in two days the go home.. To a completely NEW HOME!
Well, whatta day... We met a new DBA family, we saw friends we dont usually get to seea but every 2 years at Camp Sunshine, we got to have that feeling of being surrounded by people who KNOW HOW IT FEELS TO ME ME..... sigh... Just the shot of energy and karma I needed yesterday. We brought care packages to transplant and donated a motorized Golf Cart to the Bone Marrow Unit. When the kids get to leave theyre room for the first time, and walk the halls, sometimes they are just too weak to do it. With the cart, they can get out.. and with the press of a peddle, meander up and down the hall way. THe bliss of being out of that room, even if just for 10 mins, is immeasurable. I can only attest to that as a parent. Not as a patient. Im sure it will be cool for them.OK...More news on Kys hand too as we went to Schneiders as a patient on Monday. I will write more on it later... gotta skedaddle, time to finish up my anniversary present for Joe before he gets home from the gym. TOODLES NOODLES!
Friday .. I think...... lol
Today brought me some MAJOR relief. Dr. Chang believes that this is a neuroma. A bundle of nerves all aggravated and in a chronic state of pain impulses. Bad news to a degree.. but much better then other possibilities. We will try 4 weeks of deep tissue massage. This will be done in the hopes of desensitizing the nerves and lessening the pain impulses. If after 4 weeks, she is still in pain, no less or worse, or any for that mater then the only option is to operate and remove the neuroma. This is not a guarantee though. Neuromas can grow back, and removing them can possibly cause loss of sensation in the area as well. Here are a few interesting things I learned today…
Fact: Rt 70 in NJ shall forever be known as Asphalt Limbo.
Fact: When driving along Asphalt Limbo, at 5am, in the pitch dark you will find yourself thinking about THE MOST random things in the UNIVERSE… Like.. If animals had voice boxes, could they speak?
Fact: As awesome as GPS is, it is NO HELP if it tells you to turn onto “ A LOCAL ROAD” …huh? Local road?? WHICH ONE????
Fact: Shore Trucking School purposely trains drivers along Asphalt Limbo because no one can pass the truck on the narrow road. I bet there is a contest as to how many cars they can get in line behind them. Today I counted 22 (in front of me that is, I didn’t even TRY to count the ones behind me.)
Fact: Hakeem Daljwabi does not even REMOTELY resemble Kylie Monica. When the nurse at Ortho Clinic called Kys name, we got up and gathered her stuff. When we got across the waiting room the nurse was gone. Apparently , Hakeems mom INSISTED that Kylie Monica sounds JUST LIKE her sons name and it was an honest mistake that she took Kylies appointment.
FACT: I will NOT be the person who performs deep tissue massage on Kylies Neuroma.
FACT: If I keep typing, my eyeballs will slide out of my forehead and go ::squish:: on my laptop
Thanks you all your love and prayers. I need to go to sleep. I will add more later.
~@~@~@~@~@~@~@~@~@~@~@
Thursday night 11pm (omg its 1 degree out!)
So, you want an update? Well, why else would I be here you’re thinking! DUH! Here goes… We last left off with me waiting. And waiting.. and waiting…Now, always the believer in “kill them with kindness” and a little passive aggressive, I knew that no matter when the doctor called back, nothing was happening that day. Well, the doctor never called back. Grrrrr…. So bright and early, and a little grumpy now, mind you, I started making calls… Apparently the secretary never passed on Kylie “situation”, ( I knew shes was less then unthused to have to get out of her chair) and as I carefully and politely explained the emergent nature of Kylies medical status, this secretary got right on it. Well.. the Tuseday appointment became a Friday morning appointment. A little better , I guess…but what can I do? I mulled on the situation a little, and a few emails back and forth with Dr.s Vlachos and Lipton and the decision was mutually made that Fri was not acceptable either. Our only choice? ER… and not a local hospital. Not Schneiders, our home away from home.. But. CHOP… to start the ball rolling. Ortho would be called in to consult, and they would be forced to see her THAT day. Some x-rays could get done that Chang could look at when he got back.. Expidite some things here a bit. Yipee.. (not) So, I get Charlie on the bus, pack up Ky and her “hospital travel bag” and off we go. Some 50 miles into the trip it hits me that I had not even looked up directions. I was just driving West… I have never driven to CHOP before. Joe always did. And the last time we went was 2001. So were talking a good 7-8 YEARS! But there I was. On auto pilot. Just driving west. Comforting Kylie who was in severe pain, and wresteling with my Bluetooth. (Charlie said Mom.. its not blue.. its black and it dosent even look like a tooth!) I started to cry. Who subconsciously knows how to drive to CHOP ? Me.. that’s who. And I had a mini melt down at the realization of the fact that I will never really be done with all this stuff for her. My mind, that cant remember what I made for dinner last night, knew enough to cling on to my peripheral memorization of the route to CHOP. To bad for the construction that has changed some major highways leading onto Philly. That TOTALLY messed with the final leg of my memory.As I came over the bridge into Philly what little familiarity I once possessed, flew out the window, laughing at me, singing “Ha-ha-ha-hahaaaahaaaa” And it was at that very moment, that I, Heather Ann Monica, completely fell in love with the people who developed the GPS program installed on my “Crackberry”. Thankfully massive traffic allowed me the luxury of time sitting still long enough to type in my desired destination. I hit a button that implied to me that my current location was the starting point and CHOP was to be my ending one. Soon a headless voice began to emanate from my “black not blue and definitely not a tooth”, dangling precariously from my ear. “Turn right onto South St in point seven miles.” OMG! HOW COOL!!! I glance at my phones screen and there it is! In 3-D! The road Im on! Then the voice tells me “Traffic reported, accident ahead, minimal wait” and hot dang… She was right! So, as I prepare to turn right onto South street I notice a ton of construction signs. Detour ahead. Hard hats everywhere. And then I see it. Or actually , I don’t see it. South street that is. It isint where I last saw it. Oh snap. But shes telling me to turn right. But if I do, well, I’m glad Ky and I can swim, because that’s what we’d be doing. I pass where I was supposed to turn. And the panic sets in. OMG. WTH do I go NOW???? And just as I start to twitch , I hear Matilda ( I named her Matilda, Mattie for short) tell me…“recalculating…..recalculating….reclaculating” and holyleapincatfishbatman, she tells me how to get to CHOP via a different route! This is sooooooooo freakin cool!!!!!! It’s the little things guys… so bear with my complete and utter joy over GPS. I arrive at the hospital and take the helix down into the basement parking and sit in the car. Sick to my stomach. I CANT believe I’m HERE. Ky is ready to roll. Happy go lucky Kylie. Eager to venture into a new hospital. Mesmerized by my stories of her past stays here. Completely intrigued that she remembers none of it. I told her she was just to little to remember…Up into the hospital we go. As we step out of the elevator both of us just stand there and our gaze carries our eyes up, up, up……the vastness of the lobby. The colors, the mobile hanging from the ceiling , the glass roof. wow…WOW…We head over to the ER and get signed up and settled in. After triage was done, it is decided that since she is post stem cell transplant, a face mask would not be an entirely bad idea. And soon all the kids are asking they’re parents for a face mask like the little girl who is sharing her coloring books and crayons. Such a trend setter, that Kylie. Both Kylie and I entertain ourselves by taking pictures on my phone and uploading them to my Facebook (friend me!) and suddenly we hear a helicopter. We glance up and see the shadow of a helicopter landing on the helipad above us and I tell Kylie that we need to pray for the child on that copter and they’re family. It kinda grounds ya. Reminds you that , somewhere , someone has it worse. And as I look around me, I know were in THE place to be reminded of THAT. ::sigh:: Hours pass, and eventually Kylie is placed in a room. She is in signifigant pain and meds are given . A little stronger stuff this time. The doctors come in and out. Chock full of various questions. Moslty unrelated to the hand issue, but more about the DBA, transplant and all things miraculous about Kylie. And she and I are as always, more then wiling to comply. The more we teach them, the more people know. X rays are done. And we wait. American Idol was on and Kylie and I text Tyler Lee and Cody the ENTIRE 2 hours of the show. We critiqued the coocoos and laughed and the bizarre auditions. Results come back and nothing can be seen, although they can be felt. So, an ultrasound was ordered. By now, its well after midnight. Grrrr…. The ultrasound tech was anxious for us to get up to her suite. She read the history and was itching to her hands on her hand.. Ha. She was just mesmerized. She had never seen that surgery done before and just couldn’t hide her curiosity. The test was done. The doctors looked over the images… by now, Kylie was pretty loopy, tired and gorked out. She looks over at the doctor. Looks back at me and says.. “Mommy.. that doctors butt is big and squishy!” OMG! Hahahahahahah…. Shhhhhhh… lol A few more hours pass, and the decision to let her go home is made. No real diagnosis was made and no one could agree on what the “lesions” in her hand are.. Ganglion cysts, neuromas, soft cell tumors.. who knows.. But it is agreed across the board that only Dr. Chang is qualified to deal with this. Well.. I tell them. He wont be in until tuseday! Apparently, what I was told is not entirely true. He will be back. Friday, in fact. Hes doing rounds over at U Penn. The hospital connected to CHOP. And his partner is adamant that Dr. Chang will see her. And when I tell them that she was scheduled to see a regular orthopedist on Friday morning, the other Dr. tells me that he will email Dr. Chang and hope that he can be the one she sees. Well , a few calls today and we now know that it IS Dr. Chang who will be seeing Kylie. What a great guy… too bad I have to be there at 7:45 IN THE MORNING. Happy happy , joy joy. NOT. So. Poor Ky. Shes a hurtin lil pup. And Mom is super de-duperdy stressed. And of course.. for the first time in … oh.. FOREVER, it snows and the temps are below zero the day before I have to drive to Philly at 5 in the morning. Oh.. and the kids have a delayed opening tomorrow.. It’s a conspiracy. I know it. Well. I’ve rambled on enough. Joe is snoring next to me. Fringe is almost over and I have to get up in 5 hours. ::sigh::
Well, as I sign off, I want to say thanks to everyone who keeps praying for Kylie. They really do work. I promise….Without them, we just might have turned right onto South Street.. LOL
Love you all, Heather
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Monday the 12th 8pm
OK. This is what is happening at the moment. A LONG time ago, back in Kylies Voorhees Pediatric Facility days she had a surgery called a “pollicization”. When she was born she did not have a functioning thumb on her right hand. It was a tiny boneless nub with an itty bitty fingernail on it. And for her to have the use of an opposable thumb, what separates us from the apes and makes shoe tying and bicycle hand breaking possible, we needed to literally transplant her index finger to where her thumb should have been. Early on (a skoosh older then 1) Schneider’s had mentioned the surgery to us, but the plastic surgeon we spoke to felt that her small size and her tiny nerves and tendons etc. would create too risky of a situation that couldn’t garner any real success. SO… back to Voorhees.. Ky was still in bad shape, in-patient, treached, on a vent etc. She was over 2 by now, and after seeing the Hem/Onc at CHOP on a regular visit, we were approached by an orthopedic surgeon that specializes in pediatric hand reconstruction and that he felt strongly this surgery could be done with ease. Soooooo…. Ok… we go for it and MAN! Was it successful! She sailed thru the operation, post op care was minimal and she was a champ when it came to rehab. To look at Kylie today, 99.9f people fail to even notice that on one hand she has 3 fingers and a thumb. It’s actually humorous to watch her bring it to people’s attention. Ky truly gets a huge kick out of showing it off. She calls it her “thumbkin”.
Well.. this past weekend she was complaining about some discomfort in her “thumbkin”. I glanced over it, looked up and down.. and saw absolutely NOTHING..lol.. So, I said to her that maybe she bumped it on something…put a little ice on it (moms version of rub some dirt on it). Well this morning Ky woke up, none too happy and found herself to be in significant pain. She came to me and showed me that all was not as insignificant as it was yesterday. In fact. There was a very visible lump. Soon to be joined by one in my throat. ::gulp:: It was about the size of a mothball and she was is a lot of pain. For Ky to complain that it hurts, be guaranteed that it would most likely be pain that would put most of us on the floor. This is the child, that when I would have to stick that 45ft long Mini Med needle right into her leg, she would wipe MY tears away and tell me it was going to be OK. (not really 45 feet. But sure as hell looked like it) So, I get the kids off to school and make an appointment with the peds. 11:30 am there we are… and it is immediately apparent to the doctor that this is many things.. A. not your normal kid with an owie B. not your normal owie C. not your normal mom . Not even knowing that the surgery was done at CHOP he immediately said “ You need to take her to CHOP for this, at the rate this is growing, and because of where its located this could really cause problems in her transplanted finger.” Crap…So, I call CHOP and yes, the doctor who did the surgery is still on staff (Dr. Benjamin Chang FYI) and she can be seen ASAP. However… hes not going to be back until the 20th. Double crap. So.. a bunch more phone calls and it is established that waiting till the 20th is out of the question. We tried Schneider’s, but Dr. Lipton felt that having her at CHOP where the surgery was done and where the records and x-rays are, would be best. (silent cheers from me as CHOP is 40 miles LESS then LIJ) So.. back to Dr. Changs secretary who says I need to call Ortho and explain to them that Ky needs to see the doctor covering for Dr. Changs clinic patients. ASAP. Well. Ortho Secretary is less then enthused. Will pass on info to nurse and someone will get back to me.. Yeah.. right… and here I sit.
Ohmmmmm.. Namaste…
So. Yeah… this sucks.. as it grows it puts her transplanted finger into danger… the already fragile network of created connections…the nerves we prayed so hard would work, the ligaments, the connective tissue that we protected so vigilantly all these years that we wouldn’t even let her have blood work drawn in the entire right arm as to not compromise what we worked so hard for….We.. lol. SHE!
I promise to keep you all in the loop. Pray for her that this can be removed before it gets any bigger or causes any damage. Or that removing it dosent cause any damage either…..She deserves so much more then this crap….
Thursday, December 25, 2008 11:08 AM CST
Merry Christmas to all my loved ones.. I am blessed abundantly... for everything I have. My husband, my children, my doggies (and fish and rabbit), my home... my health... and all of you.
Tuesday I took all 8 kids and the infamous Hilary to Jersey Shore University Medical Center (now K. Hovnanian Childrens Hopsital)We brought HUNDREDS of toys to the peds floor and handed out 4-5 gifts EACH to the nearly 30 kids admitted onto the floor. THat was the best few hours I have spent all holiday season. THe lil ones just enjoyed hanging in the playroom. Michelle the child life specialist at JSUMC had lists of kids, names , ages etc. Ane we filled up little carts and went from room to room talking with the kids, the parents. telling them about Grateful Giving, and the miracle thaat is Kylie Jae Monica. Even Tyler Lee and Cody started to talk, and get into it.. I was never more proud. They were playing with the kids, helping htem pick out stuff, hugging, laughing... I was honored to me theyre mom.. All of them... more in it all later...
Now, about TODAY......
MERRY CHRISTMAS!!!!
I cannot begin to tell you how EASY this Christmas has gone thus far. I just said to Diane a few minutes ago, this is one thing that actually gets easier as they get older... The kids opened theyre gifts one at a time, so we could all enjoy each others treats. Everythign is already cleaned up, and put away. The kids have theyre stash in theyre rooms, the play room, the game room. Wherever it needs to be. They left the front room so clean it looks like Santa never came. There is peace all around. No one is fighting (although tweaking is SOP here)
TJ, Tyler and COdy were shocked out of theyre shorts that there cell phones were updated and the often dreamed about "texting" option has been added on. There has been three pre teens wandering around, eyes glued to theyre second generation Envys. Tyler Lee has already sent 30! Cody is a close secocnd with 20! Pictures of the doggies are being sent all over. even the ever gloomy TJ had a smile from here to next year and I swear I spotted a tear or 7 escape from his eye...Shoot , even I cried watching theyre absolute total shock and glee. Ky....got a COACH PURSE!!! (spoiled rats, I was in my 30's beore I got my first)Jordie and Kasey scored big time with the Hannah MOntana Malibu Beach house. Tyler and Kylie have to be nice to them now if they want to play with it! LOL
Charlie got a castle set that he is completely gaga over and a multi level car garage that he is currently parked infront of playing with. Ryan is lost to the world with his now functioning Xbox (it needed a replacememnt wire that only santa could provide.lol A few months w/o his XBox sure made him apprecitive today!)Hes like the big boys now w. a Live membership, head set and games like his brothers. Just like his brothers??? wait.. maybe I should re-think this... crud... too late...I myself was suprised with a new Blackberry Storm that will arrive UPS tomorrow. Man... I cant wait to fiddle with THAT...Im such a geek!
I must be off.. but I wanted to send love far and wide....
My eyes are spinnign watching TJ blow away some insane song on his Gutiar Hero... his hands move faster then the speed of light for THAT... but try asking him to fold some towels..
Love, Peace, Faith and Hope
H
~@~@~@ SPECIAL HOLIDAY ANNOUNCEMENT~@~@~@
Grateful Giving~The Cure Kylie Foundation
2008 Holiday Toy Drive
Happy Holidays Cedar Grove Proud Patriots! The season of hope is upon us all and it’s time for Grateful Giving to reach out and ask you all to help us bring a little bit of joy to families that are struggling with sick children. We, the Monica Family, created Grateful Giving as our way of saying THANK YOU and to pay it forward for what was done for us. In 2005 our daughter Kylie underwent an experimental stem cell transplant to cure her of an obscure bone marrow failure disease called Diamond Blackfan Anemia. The support we received from the Cedar Grove community will NEVER be forgotten and what started out as us delivering care packages to the 5 bed Stem Cell Unit in Long Island that Kylie lived in for most of 05, has now become nationwide. We have sent packages as far west as California, as south as Florida and as north as Canada. Grateful Giving has actually become a student volunteer program at Loyola College in Baltimore, Maryland that serves a plethora of hospitals in the Baltimore area, including the famous John Hopkins University! We just couldn’t be prouder. This year, we decided to bring our services a little closer to home. “It takes a village” and no one knows that more than THIS family of 12. So, we are asking everyone this year to make toy donations that will be delivered to local organizations such as Oceans of Love, Ronald McDonald House and K. Hovnanian Children’s Hospital.
All toys donated need to be new, in their original packaging. This is important for infection control because most of the children receiving these gifts will be immune compromised. We ask that no fabric items, stuffed animals or items that are not easily and safely wiped down with anti-microbial wipes, be donated. To keep things organized, I will assign each grade to a different age group.
• Ages 4 and under ~ Kindergarten
• Ages 5-6 ~ First Grade
• Ages 7-8 ~ Second Grade
• Ages 9-10 ~ Third Grade
• Ages 11-14 ~ Fourth Grade
• Ages 15-18 ~ Fifth Grade
We will be taking collections for the TOY DRIVE starting Monday December 1st until Friday, December 19th to ensure delivery before Christmas! (Toy donations accepted ALL YEAR)
If you have any organization that would like to participate or know of a family who we can provide for PLEASE CONTACT US at GratefulGiving@aol.com
You can follow the toy drives progress as well as check our list of gift suggestions, photos and other info at www.caringbridge.org/nj/kyliejae Please, feel free to contact us at GratefulGiving@aol.com.
Grateful Giving~ The Cure Kylie Foundation
Attention: Michelle Francis, Wachovia Bank
1700 Rt. 37 & Vaughn Ave. Toms River, NJ 08753
Tax Exempt ID # 76-0781768
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Yes! Thats right! We're not MIA! We're not even on vacation! We are here, in the house on the hill, crazier, kookier and weirder then ever! Things seem to go from crazy to chaotic in this house in 0-60 and before you know it BLAM! THe year is almost over, you have a few more pounds, a LOT more grey hair, another dog, (yes! ANOTHER ONE! That makes FIVE!) I promise to catch you all up on things as I update frequently regarding our GG Toy Drive. Its been an insane fall.. We have mourned the loss of sweet Haley during her transplant this fall but GOd has reminded us that there is a method to his madness and that his Will is NEVER in vain. At this very moment we are storming the heavens for Bowen, another DBA Warrior who is undergoing his sibling matched transplant as I type. I will update this page with Haley site so you can go engourage her mom and dad to carry on without theyre only child and Bowens, so you can all stop in and show some love too. We had a beautiful THanksgiving here at Monica Central. I made 15lbs of my special taters and they were gone the next day. In addition to the 5lbs of Sweet taters... throw like 4 lbs of corn in there and were all so startched we can't hardly sit! A few months back I took a wicked spill and ended up herniating a few disks in my back pretty bad. We were left with surgery as our only option but a lot of bed rest and minimal lifting has helped me dodge the operation bullet thus far. Its inevitable, but the more I can put it off... well.. the more I can put it off! Joe is working 12 hours a day 6 days a week, The kids are growing like weeds and there never seem to be a lack of dishes or laundry for me to do. School schedules, dentist appointments and extra cirricular activities have turned our calendar into a more confusing mess then a flight plan out of Newark during the holidays. Tonight, we took time out from our games, computers, tv, iPods, books etc to all gather together in the living room and decorate our Christmas tree.(despite it being 65 degrees) Joe got everyone theyre very own "tree decoratin' hot cocoa mug" and made us all hot cocoa with tons of itty bitty marshmallows to enjoy by the fire as the kids took ornaments and swathed the tree in every color imaginable. Somewhere after the bilionth ornament the tree began to sag and we had to call it quits. Tomorrow while everyone is at school I will surrupticiously lighten its load and no one will be the wiser. But for the poor tree.
I cannot urge you all enough to try is some way shape or form to do good for another. In this day and age where we see deaths at Walmart because of greed and gluttony, it makes you wonder where the real meaning of CHRISTMAS went. Its not what your get, give, buy or recieve. Its about what you DO. So.. DO SOMETHING. Help a neighbor. Hold a friends hand. When you see someone in need.. lost, afraid, sad sick....DO SOMETHING...
Much love to you all.. The evening is fading fast and so am I. I hope you havent forgotten us Monicas! Because were BAAAACK!!! lol...
love, Heather
Tuesday, July 22, 2008 10:54 AM CDT
I think its Wed afternoon, Im honestly not all that sure. My head is POUNDING, my tummy is staging a coup against the gatorade and oyster crackers..BUT..I drug out my lappie to check on my sweet sweet Kate, and one thing lead to another and I ended up tossing some pictures into a side show to pop on here so you can all see what a TRULY FABULOUS time we had at camp despite my seemingly doom filled stories thus far.
Tuesday, July 8, 2008 8:24 PM CDT
And the countdown continues…Four days left in the wait for departure for camp Sunshine. The Monica house is all a twitter…kids are busy making plans, unpacking all the clothes I packed, and replacing them with the “cool” t shirts and Bakugons. (don’t ask..Charlies new “thing” Little figures that confuse the bejesus outta me) I wont even bother to pack Tyler Lees stuff…That would be like trying to work for that meanie model that throws phones at her assistants heads. I have a list that I have composed to help me make sure everyone has everything..and the darndest thing is happening…the more I work at it..THE LONGER ITS GETTING! So, I figure if I just quit preparing entirely, magical little elves will swoop down and finish the job for me. You know..the same little elves that leave wet towels in the wood chips in the play yard, the same elves that left just the rind from the half watermelon in the fridge, and the same elves that took a Bic pen and shoved it into a hole in the brick façade of our house..Funny thing though..when the cable guy came today and I needed to sign a paper, there it was…sticking out of a hole from the old shutters..Just like it was placed there for me…oh well…ha…Camp Sunshine is on many little and big minds here…Charlie was just telling me how the girls at camp were fighting over him last time and how he had “hot” girls taking care of him..Im fairly certain he only recognizes “hot” and a was of expressing great enjoyment about a person. (note to self: have talk with big brothers about what is inappropriate language around a 5yo, or any of us for that matter) I asked him where he got THAT from and he said Cody says Selena Gomez is ‘hot”. I said what does that mean? He said, Mommy, she needs air conditioning. Whew… hes still oblivious. I asked a few other kids what they were looking foreward to and I heard “ooo..I want to see Meg, Pat, Meredith…or Um..I guess the computer lab was cool, or I liked the kayaks.” And well…if that’s what they’re looking foreword to then I guess im totally cool with that. I want to try the physical fitness trail. Joes gonna kick my butt…..Maybe if there was a physically “pffttt” trail….that, I would totally rule at. So…this morning I woke up with a million things on my mind and decided my coffee needed to be a little stronger than usual. So…Im chewing the grinds. I DON’T recommend it. Packing for 8 kids and a pair of adults for any extended amount of time is quite “involved”. Shoot, packing to take a trip to the post office a mile away is involved, who am I kidding. This is basically moving 400 miles north for five days. OK..apparently I need to re-pack most of my childrens suitcases. My fault for not padlocking them when I was done. And Every article of summer clothing I own is sitting in a twisted knot on a Civil War rocking chair I have next to my bed. I have to make three piles, what fits (will be a small pile) what might fit again someday (even smaller) and the “give it up, girlfriend” pile that will by far, hover over the previous two piles. Sigh. Today is “Shovel Out the Green Monster” day. The van is backed into the driveway, doors are open as to disperse the pungent yet familiar scent of 8 kids, a billion crayons, lost half full juice boxes and what seemed to me like an amazingly unnatural amount of socks….So as its initial wave of odiferous waste fades, I sit and chew my grinds I and listen to the kids play pretend in the yard. Guess what my kids play pretend as? Fireman and Police? Nooooooo… Animals and sea creatures???? Noooooooo ….Mommies and Daddies?? Kinda sorta…..My kids are playing ER. Mom and Dad(Jordyn and Ryan) bring in sick kid (Charlie) to ER (trampoline) and doctors and nurses(Kylie and Kasey) fix broken child. They use pine needles to access ports to test blood since sugars might be high, blood might be low and heart might be broken. Pool towels represent gurneys, and Kylie comes equipped with her very own bag of left over medical supplies. She has test tubes, gauze, alcohol wipes, connector sets, tubing….the whole mélange. I had to hide the “mini med” sets after an accidental attempt at “seeing how this thing works” by a curious 4yo last year. Its interesting to see how they made Kylies “normal” life a part of theres. Everythgin she went thru they did too…My kids know the inner workings of no less than 5 Level 2 trauma Centers in the tri state area. But, I must admit, as of late, those experiences are fading more and more into the memory compartments of our brains than the “this is our lives” part. And man, am I grateful….to NO end….It has shaped who we are, are futures and certainly our past. So…I’m off to face the depths of the van, that has sat unused for the vast majority of the summer courtesy of this gas crisis. A V8, 45 gal tank that gets like..10 MPG….not cool. One hundred bucks wont even fill it. At least my Explorer (“Exploder” according to one of Joes mechanics..Im gonna have to ask more about THAT) gets 20MPG, and since I don’t drive more than 3 miles a week (all to the grocery store) Im good. Yes, I realize I am procrastinating. You don’t have to remind me.
Laters taters!
OK…3 days to go…big happenings here..this mornings major excitement was the discovery of a pack of Pop Secrets Homestyle popcorn that I apparently hid and forgot where I put it. Jordyn was in her Indiana Jones mode with a flashlight and inspecting crack and crevasses everywhere an lo an behold, there in the pot cabinet, way in the corner backed up to the housing for the dishwasher was the box of 6 individually wrapped pouches poppable perfection. Say that 10 times fast! Salty and buttery and ready to eat in 1.5 to 4 mins (microwave time may vary)
There is an excitement in the air as the girls are in search of costumes and makeup for the family costume party. Then there is the Talent show that I am TRYING my best to convince them to participate in. They do such lovely plays and shows for me at home. They are all really funny and creative. Not to mention beautiful. Tyler has a idea about something but is remiss to share it in fear of the “copycat” syndrome that seems to run rampant amongst the female species of this family. Ha..I know I watch Meerkat Manor to much when I start to observe and dictate they’re behavior like that show does!
On this years trip we will have a little bit of extra cargo as Hilary, yes, THE Hilary, OUR Hilary has volunteered to be a camp counselor for DBA week at Camp Sunshine. She will be in charge of the 9-12 yos. And that means Kylie, Tyler Lee, Cody and TJ will be spoiled rotten for the ENTIRE trip.
So, as the multiple countdowns continue, I contine to get further and further behind in my “list” Today I need to tackle sunscreen/bug spray. I wonder is BJs sells it in Industrial sized drums.
Later taters….The house is shaking, TJ is stomping around, kids are scattering, I need to find out what the major calamity is about…Love to all.
Ok….Friday morning…8am…shhhhhhhhh…I have a saying for early mornings, kind of like “you break it, you bought it” but mine is “you wake em, you feed em”. I have tiptoed very quietly to the basement, switched out some laundry, got me some coffee, no grinds today, I had to floss for HOURS! This mornings positive, I found the wall charger for Tyler lees DVD payer…this mornings negative…(I’m whispering as I type this) I havent packed anyone yet. Yes..I know…I have 7 suitcases lined up in my room. And have frantically searched high and low for the last one to no avail…Im sure TJ will be happy to give his to Cody (whos apparently is missing since our trip to Phily in March) and pack all his black clothes and his black towel in his black backpack. ::eye roll:: Now. I just heard a ginormous crash above me coming from the vicinity of Charlie and Ryans room. And there they are..the pitter patter of little pee-pee dance feet as they scurry to the potty. OMG! They pitter pattered back to bed! There IS a God!
I wanted to pack the suitcases in assembly line formation…5 outfits , 5 outfits, 5 outfits (8 times over ) DING! Like a typewriter. Back, flip flops, flip flops flip flops, (8 times over) DING…back..towel, towel, towel, you catch my drift…If I deviate from a strict plan, I get distracted….like a 5yo in the outfield at his first year in Little League. OOOO look a flutterbye, oooo a bug….oooo pretty clouds….so on and so forth. OK…Misson at hand, is iPod updates….this journal and the iTunes all require computer usage, which for me is only available at the booty crack of dawn, (which Id rather be sleeping, so, there goes that opportunity usually) But, since Im awake, with my mind racing with my ever growing ToDo list, I figured Id do some computer stuff..Print some directions, important numbers, yada yada yada… before the onslaught of children shout…MY TURN ON THE LAPTOP! (while the low and measly PC sits abandoned in the game room)
So, off to accomplish things, prepare, physically and mentally! (heh, like THAT’S ever gonna happen)
Heh….down to the last day. This time tomorrow….I will be begging to be let out right on I-95.
I bought some Dramimine. Then should revise they’re marketing plan.
“Arrive there safely, without killing them and yourself”
Forget the nausea and motion sickness…(that Jordyn and Tyler Lee get just going down the street, even TJ has gotten car sick)
Hopefully it will be a quiet drive. Ha…right….Can you hear the thuds as I bang my head on the table?
Monday, July 14, 2008
10:50...Somewhere in Connecticut…Miley Cyrus is telling me 7 Things, TJ and Cody and offering Charlie one dollar to eat as many Slim Jims as he can. (Man, am I glad we packed toilet paper…lol) the rest of them are almost unnervingly mellow probably courtesy of the Dramimine. But I cant help but wonder if it’s the calm before the storm. Less than one mile from our house, while I was (we are now in Rhode Island) in Dunkin Donuts getting my industrial sized vat of hazlenut latte, Jordyn apparently got her start on the vomiting early ((OMG! There is 9 people behind me SCREAMING hysterically! Theres is a spider crawling across the ceiling and TJ flicked it into the seats…ha….Its total pandemonium..ok…we have composed ourselves and are back to status quo)) Back to Meatball….puking… less than .4 miles into the trip. This can go one of two ways…It can be good, shes getting it out of the way early…or….this could be the be the beginning of a VERY LONG TRIP….11:03...and I’m not a slow typer..I just get interrupted that much. Great..the iPod plug that puts the music thru the car stereo has a short and every 15 seconds it turns off.. Great..Flo-rida is getting Low…in his Apple Bottom jeans and boots with the fur, baggy sweat pants and Reeboks with the straps…sadly, I know that someones booty is gonna get smacked too…Wheres my Rick Springfield? A little Foreigner maybe?
At least TJ has headphones on ..his iTouch is full of AX7 (don’t ask) Slip Knot and Happy Tree Friends..
Letting them “find themselves” is not easy. Especially if you cant stand the music. At least Cody and Tyler Lee are more “mainstream”. However, songs that even I like..the videos….oh my…Danity Kane has a song…we just heard it, Damaged..the video..according to Charlie…makes his eyes burn. Ha. 11:18 and I have just thrown the iPod/car stereo converter in the garbage. We are 2 miles away from a place called Woonsocket….I wonder if Dr. Seuss ever went to Woonsocket, with a Wocket, in his pocket…Im going to go play some Mahjong..Ill be back!
11:32 Were in Mass…265 miles traveled and no potty breaks! Woohooo!!
12:04...lotsa pee pee dancers….great…I jinxed us…brb..k?
12:29...ewwwwwwww….grrrrooooooossssssssss…but ahhhhhhhhhhhhhhh…….about 150 miles to Camp. No-More-Germies for everyone…{{shivers}} 200 Miles into the trip and TJ shouts..MOM! DID YOU PACK SOCKS???? Yes TJ…Why do I have a feeling I will be packing his clothes for a VERY long time? His wife will call, Mom, can you come over, were going on a trip …TJ needs you..ha… 2 Ferraris just passed us….talk about different paths in life. Dang cars are so tiny they could have driven UNDER us! When we got out of the car at the gas station, I popped my head in the back to collect what few wrappers and such that did not make it into the two filled shopping bags of garbage the kids passed up. It seems to me that my children surreptitiously invited about 50 people into the van for an insane all-out, full on , party palloza. My hours, days, WEEKS even of meticulous preparation, my organized tote bags and Tupperware containers of activities,leap frogs, blankies, pillows, toys, crayons, paper, chips, cookies, water bottles, juice pouches, books have EXPLODED …all over….”IT WASENT MEEEEEEEEEEEEEEEEE” ::sob::
1:23 Bieanvenue! Welcome to New Hampshire! We are just now starting to hear the “Are we there yet?”s in fairly rapid succession…Jordie-”Are we there yet?” Mommy- “Not yet Meatball, soon though.” 7 seconds later Charlie says “hey momma?” “Yes, Boo?” “Are we there yet?” “No Stinky, not yet.” While we are discussing this, sleepy Cody picks up his head, looks at me and says “Are we almost there?” ::sigh::
Four people say in unison, “NO!”
I think I have heart burn, or its an anxiety attack…possible a heart attack. Maybe it’s a trifecta.
Im laughing at the thought of our arrival at camp…no wondering who it is driving up in the GINORMOUS green van this year…IT’S THE MONICAS!
1:34 TJ just asked ..”Mom, are we at camp yey?” “TJ…have we stopped the car and said WERE HERE yet?”
1:42 We are now in MAINE! Wooohhoooooooo!! “The Way Life Should Be”….hmmm…you mean I’m going to be gorgeous, thin, and insanely intelligent and popular?? My children will be mild mannered, polite, gracious and kind to each other? GREAT! (I’m being highly delusional here, I know)
1:55 ::sigh:: were not there yet…Kasey has had a complete and total melt down because Charlie wants to sing “You Are My Sunshine” so what does Jordyn do? She starts to sing…quietly, then progressively louder so that Kasey hears her…teeheehee..that girl is good..in a baaaaad way…Jordyn is the ultimate tweeker. That girl knows how to break you. But with this angelic look on her face that says “what? Me?”
Kasey is now hollering….”CODY SAID SOMETHING!!” what is he saying Mae? “I DON’T KNOWWWWWWW…whaaaaaaaaaaaaaa…!!!!”
TJ just complained how hot he is…Joe and I look at the AC..well its on Max back there…don’t you feel it?
He looks up…oh..you have to open the vents? (insert exasperated sigh here) We have been in the car since 7:30 in the morning, at this moment it is 2:00..and he NOW just realized the vent was closed? He must be hiding his blond hair under that big mop of his… Charlie is still stuffing chips in his mouth…omg, that kid is gonna get sick! Hes going to be sweating orange food coloring. And the Slim Jims..um…can anyone tell me what “mechanically processed chicken” consists of? I mean ..is it the whole damn chicken tossed in a wood chipper? Organs, bones feathers and all? That qualifies as mechanically processed, no?
We are at 403 miles traveled, and ALMOST there…I just saw a sign that read Max Speed 65- Minimum 45.…If you are on the Maine Turnpike and get pulled over for going too slow…you shouldn’t be driving. Just saying.
2:15..someone needs to check Kylie and Ryans pulses….they have not said a WORD this ENTIRE trip. Get those kids a Klondike bar! They have slept and kept themselves occupied and out of trouble. I absolutely owe those two a treat. Everyone else in one way, shape or form got into foolishness on the ride. But those two were truly perfect…seriously. Someone needs to check if they’re breathing! Or did we leave them at the gas station?? It’s a little late for a head count. I hope they find a good home. Kylie does dishes and Ryan is the master towel folder.
2:22 If any public official from Maine reads this, I highly recommend you re-pave your Turnpike. All those tolls I just paid are NOT going to the road maintainence but apparently into the tricked out Mustang police cars…holy leapincatfish batman…That Mustang was Metallic Bangin’ Blazin’ Blue with white racing stripes…how utterly ridiculous and useless…and those tinted windows? Illegal in Jersey..Just sayin’.
2:28 We just got off the Maine Pike and according to my Camp print out have little over 20 miles left on this trek. OMG! They have Third Day on the radio here! I LOVE IT! ( My mileage calculations are spot on! Go me!) Somehow …we got lost! OMG! But sitting at a traffic light I noticed a Camp Sunshine van with a “Yellow Shirt” driving! So we shout at them till we get their attention and say WERE FOLLOWING YOU!
2:47..lots of green, farms, animals…Is that a rock or a sheep? Well…if it’s a sheep, its got serious problems. Joe told me that someone at work told him that in Maine the McDonalds have McLobsters.
Holy smokes…it looks like Mario Andretti volunteered for camp this year! Well…in all fairness, in this van anything over 30 miles per hour feels like 200!
As we make the final leg of the trip to camp our favorite Casting Crowns song comes on….and we all are singing “East to West”…so…that is why I chose this song for the page!
Just passed Tim Hortons…Paula, Im getting a coffe
from there for you this week, I PROMISE!
3:11.….we are turning left at the Casco Alliance Church!
WE”RE HERE !!!!!!
Love you all!!!!!!!!!!!!!
As you can see…things are AWESOME! Kylie literally jumped right into things, Cody caught the first frog of the trip within mins, Charlie is in love and planning his wedding, and Joe and I are decompressing nicely. I did the parents intro today….and I lost it…I never did before…not here…not like that….But it actually was a LOT more cathartic then I ever imagined. We have been the image of “Rock of Gibralter” today….I was the “Glob of Silly Putty”. I had to compose myself and took a few mins to update the page..I’m good now, I can rejoin society! LOVE LOVE LOVE, more to come!
Tuesday, 6:30 PM
Family Free time, kids are running amuck and I snuck onto the computer lab while the kids prepare for they're talent show. I sit here overwhelmed. Near tears but not really sure why. I think I need to cry..In fact I know I need to....a lot..for a very long time. I need to cry tears of joy that we finally have been given the key to unlock the door of Kylies disease. And that key is called RPL5..and it is why my life was forever changed on April 23, 1999. And untill I KNOW that none of my other children carry RPL5 I feel like I want to vomit. The statistics , the numbers, the graphs I saw over and over...made my head spin. 15 years ago they thought 10 f the kids with DBA was familial.(inherited) then it creeped up to 20, 30, 40..Currently its at 50 nd Dr. Lipton said today , "I guarantee that in 2 years I will be telling you that number is 75 ANd I havent been the same since. Blood transfusions are a monkey off her (and ours) back. But now we are batting clean up..and the crap that awaits us is daunting. Today I hate DBA and the mess it made of things. ANd I know it is SO not my typical thought pattern...but yanno, I gotta vent. ANd this is my "safe zone". Today I'm pissed, I'm bitter, I'm angry, but I feel so guilty. Im blessed. Shes transplanted, I know. SHes in school..shes walking , tlaking, living..laughing..and Im sooooooooooooo grateful. But today..Im just angry. I Have to shut this down..I have a "show" to go see....Im sure Ill feel better about this all tomorrow..I need a little laughter today. Love you all..
Sunday, July 6, 2008 11:18 AM CDT
First and foremost, please keep praying for Kate!
Sunday July 6, 2008
Countdown to Camp Sunshine …
A week from today, at this exact time, I will probably be regretting everything from sticking my tongue on a frozen fence pole when I was 5, to eating that chili dog last night. (actually I regretted THAT decision ALL NIGHT) I will most likely be in the front passengers seat of “the green monster” listening to what sounds like 6. 5 billion children argue over who is invading who’s “space”, who’s stuff is touching they’re stuff, who iPod needs to be turned down because someone can hear someone else’s stupid music. “Really, can you PLEASE stop breathing on me?” “Really, can you just stop breathing entirely?” “ Mooooooooooooooom!!!!”
Sigh.
Its been two years since we made the trip to Casco, Maine for the first time. We had been hearing about Camp Sunshine since February 2000 when Kylie was first transferred to Schneider Children’s Hospital from a local Jersey hospital, that although trying they’re best, were unable to get a firm grasp on Kylies treatment or diagnosis. There we finally received confirmation about those three magic words that would shape the rest of our lives. Diamond Blackfan Anemia. And in a fleeting moment of “by the way” amidst the vents, and tubes and really REALLY big words, Came Sunshine was briefly mentioned. I remember snippets of “every two years” “40 other families” “someone who knows how you feel”. But at that time, even I really did not know how I felt. She was not yet 1 year old and severely affected by her syndrome. It would take four more years before I even felt the NEED to go, and six years before I actually made it there. But when that time came….man was it amazing. It was five days surrounded by people that have either been there and done that, or are going there and going to do that. A place where you don’t have to carry around a satchel of stapled paperwork describing your child’s illness to have people understand what you are talking about. You don’t need a medical history in downloadable format on your PDA/phone that you “beam” to the residents PDA so they understand what you mean when you fill out “too numerous to list” next to “Recent Hospitalizations” on the form at the ER. Man, to have had the picture of every medical professionals face that in the last 9 years have looked at me like a deer in the headlights when I said “DBA”.
Almost as classic as the look on peoples faces when I introduce her amongst the group of all the Monica kids. To save on confusion I usually go by ages…oldest to youngest. “TJ is 12, yeah, he’s like a man…in fact he’s taller than me and has a bigger shoe size! Cody is 11 and a complete comedian. Tyler Lee, she is 10 and yes, I know she looks 17...we have the shotgun loaded by the door already and little does she know but we implanted a GPS tracking device behind her neck. Not to mention the electrical field that we will surround her with every time she steps out the front door.” By now people are sensing a pattern here and I have to stop and confirm YES..every 11 months…For 8 years…a kid…moving on…”Next is….“(insert drum roll please) I see they’re eyes scan across my brood usually stopping at either Ryan or Jordyn Lynn and I have to direct they’re attention downward, to the itty bitty smiling miracle that is Kylie Jae Monica. “Kylie Jae is 9! Super Hero extraordinaire!“ and there..THAT’S the moment you want to point and click and capture the moment of shock. And I continue on without missing a beat “…followed by Ryan who is 8 and a complete love bug, Jordyn Lynn is 7 and this one truly, honestly believes that the world revolves around her, this is Kasey Mae, she is 6 and our resident tattle tale and last but not least little is Stinky Dinky Boy, Charlie. He’s 5. If he’s not dirty, there is something wrong.” Now, sometimes, when I’m not in such a generous mood, I leave it at that and let them stand there puzzled and confused. But, usually, I throw a little comment in like an Editors Note and say something like…”She had bone marrow transplant in 05” And they’re look of confusion softens a little into a look of “ohhhhhhhhh…now I understand” (not that that statement should make them understand, plenty of people have had transplants and are of normal size, but I learned its enough to appease them and I leave it be)
Now…at camp…No one gets that deer in the headlights look. We share information to expand our understanding of DBA…and our children and they’re future. And I don’t say bone marrow transplant. I say “stem cell” transplant. And people understand me.
See, way back in the early days of transplant I would say stem cell….and it was like I was speaking another language…Then the president got his uneducated butt involved and when I said stem cell, people thought we used unborn fetus’. That was the final straw. I gave up…I just say “bone marrow”. It makes it easier on everyone. But at camp…ahhhhhhhhh…….No one looks at you funny…Well, scratch that. People ALWAYS look at me funny. I’m really starting to wonder if I have things sticking out of my head! But, at Camp Sunshine. Everyone UNDERSTANDS your journey. Because they are on it with you.
So here I sit. On my back deck, enjoying not so much the hazy , hot , humid Jersey shore air, listening to about 6 kids turn my morning solitude into a theme park like riot. The dogs are slowly waking up , stretching and coming out to want, need or have to have something from me. Followed by children of various sizes and ages wanting and needing and having to have even more then the dogs. The silent stillness is being replaced by life with 8 kids and 4 dogs. My coffee is starting to kick in (my bladder) and if I don’t do something about it very soon, there’s gonna be a mess..
Love to all…I hope to be able to journal fairly consistently about our trip!
Monday, June 30, 2008 12:11 AM CDT
KATE B.
Our first experience with DBA transplant, CaringBridge, faithful belief in a cure....the Burnetts are in need right now. Katie May is in ICU... This miracle is 5 years POST transplant, but being a miracle child, makes the devil constantly try and steal GOds thunder that is so perfectly seen and proclaimed in our children. Let him try all he wants....Kate will be back in full force before she even realizes it! And hopefully in a few weeks will be in Casco playing PuttPutt with us! Lesley wowed the crowds with her version of Stand By Your Man last Camp Sunshine Session, I have waited 2 years to see what her next hit was going to be! And I will stay frim in my faith that I still will!
Please, share your love and faith and blessings with the Burnetts...their pain is ours. PLease help me lift theyre burdens and theyre spirits.
Visit Kate and help bring her some fast heavenly healing!
I had planned on updating Kylies page the other day, and well..summer. lots of kids....you know the drill... ACK!
But Kates plight really got me going and the moment I saw the post on her situation....I got right on it. This is what my post was GOING to be on...
Last week my sister and her family visited from Arizona and my nephew had an assignment. He got a new bible and as he studies for his Confirmation he was to ask family and frinds to take the bible and select a favorite passage.
Well....12 selections and a 4 page letter later...I was done. I thought I would share my selections with you!
Enjoy!
June 26, 2008
Dear Lowell,
You asked us to highlight a passage in your bible, a task which we joyfully took on. But one that we just could not fulfill…Just one? From the BIBLE? That’s like eating just one potato chip! IMPOSSIBLE! So…we scoured our bibles…yes. Plural. We have no less than seven. Each one with a little different take on things. But with one main goal. Living in “the Truth.” A goal that we strive for every day. We live each day with the hopes of making the right choices, decisions and examples for our family. And the bible is one of the best ways to achieve that. We have little signs all over the house, reminding us all constantly, that “God is love.” 1 John 4:16 And in our own kooky way, we make sure that all the kids learn about God, Jesus and they’re unconditional love for us and the promise that He gave us of heaven on earth.
“I am sending an angel ahead of you to guard you along the way…” Exodus 23:20 From the very beginning , even before Jesus, God made sure we had guidance along the way. Think of Mom and Dad as the angels that God sent. “Pay attention to (them) and listen to what (they ) say.”Exodus 23:21 There is wisdom in they’re words, even if sometimes you cannot see it, we promise! As you get older, and grow into this amazing young man, there are lessons to learn every day. And the bible, as we see it, is basically the instruction manual to life.
Here are some of the lessons that we believe are important for you to learn:
Judge no one!
“Do not judge, or you too will be judged. For in the same way you judge others, you will be judged, and with the measure you use, it will be measures to you.”
Matthew 7:1-2
Pretty simple stuff. Clear as a bell, this one. But oh, so very important! This lesson will follow you everywhere, every day, for the rest of your life!
Love everyone, unconditionally.
“ Love must be sincere. Hate what is evil; cling to what is good..“ “ Be joyful in hope, patient in affliction, faithful in prayer…” “Bless those who persecute you; bless do not curse. Rejoice with those who rejoice, mourn with those who mourn. Live in harmony with one another…”
Romans 12:9-16
Pretty much this one means, everything you do and say need to come from your heart. Do what you KNOW is right. Rise above pettiness. Kind of like, don’t lie with the dogs, or you will wake up with fleas. Be the better person. (works GREAT for resolving arguments with siblings)
Be a friend.
“A friend loves at all times; a brother is born for adversity.”
Proverbs 17:17
My devotional bible takes this one a step further than yours, and I really like its message. “A friend is someone who understands your past, believes in your future, and accepts you today, just the way you are.” The lesson here is BE that kind of friend to all and seek out others that live the same. Surround yourself with people who truly know what it is like to be a friend.
Think first…
“My dear brothers, take note of this: Everyone should be quick to listen, slow to speak, and slow to become angry, for mans anger does not bring about the righteous life that God desires.”
James 1:19-20
No matter how strongly you may feel about something. Yelling about it, won’t make it go your way. Fighting with someone won’t fix the problem, solve the issue, make things better. Take a moment to sit, listen, think, pray on it, mull it over. And when you have calmly reached a conclusion, share your thoughts or feelings respectfully. And I guarantee you…your quietest, well thought out whisper will be heard much louder than any screaming voices or flying fists ever will.
Actions speak louder than words.
“Dear children, let us not love with words or tongue but with actions and in truth.” 1 John 3:18
Its easy to SAY something but to LIVE it…that is where His truth really lies.
Do unto others!
“Carry each others burdens, and in this way you will fulfill the laws of Christ.” Galatians 6:2
God wants us to carry each other in our times of need as He carries us at all times. With Gods love and the help of another who lives thru His word, you can endure almost ANYTHING! We are PROOF of THAT!
Live, laugh and love, no matter what!
“Love is patient, love is kind. It does not envy, it does not boast, it is not proud…It always protects, always trusts, always hopes, always perseveres.”
1 Corinthians 13:4-7
Just be sweet, loving, caring Lowell and you can’t ever go wrong. Don’t let jealousy get the best of you. Don’t want what others have, show off to others what you have and they don’t. Don’t worry about what you may or may not have. So what if Luke gets a better grade at something. Be happy for him, show him how proud you are. So what if your best friends team beats your team! Cheer for his team, praise his good play. The joy you feel for others in they’re success, feels 100% better than the resentment you feel when you look at things as your loss, or lack.
Grow lots of fruit, just remember to weed your garden.
“But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self control.”
Galatians 5:22:23
Think of the cherry tree in my backyard. And imagine you are the tree. It needs sun and water to feed it so it can produce the flowers that become cherries. Now think about all the cherries that the tree produces. And think about all the things about you that your spirit produces. Like a fruit, each thing blossoms and grows as your faith does. With Gods love feeding you ,you are able to be fruitful in your life, full of things like, love, joy, peace, etc. This is one of our personal favorites. No matter what kind of tree, the more fruit the better! But remember to keep it free from weeds! The evils of this word can creep in and ruin your garden and like crabgrass, take over and smother your fruits and before you know it your tree is bare! Water, feed and weed your spirit like an orchard of fruit trees and sit back and watch the harvest of your spirit be plentiful!
Fear nothing.
“Even though I walk thru the valley of the shadow of death, I will fear no evil, for you are with me; your rod and staff they comfort me.”
Psalm 23:4
The entire Psalm 23 is a great read. But line 4 really drives it home. We have a saying with the kids that they all know by heart, and it reminds me of the meaning behind this Psalm. Say Kasey breaks something, and initially she is afraid to tell us. But she remembers what we always say “No matter what, I’ll always love you.” She knows she can tell us, and together we can clean it up, or fix it or whatever needs to be done. And she knows that we will always be her parents and love her regardless of her mistake. The same way that God loves us unconditionally. And even though we may get into some serious trouble at some point in our lives, we should not be afraid. Think of the worst thing you could ever possibly do. Now, imagine your journey through it, with God at your side …because He will be. No matter what. He is there to protect us. Comfort us and help us get thru whatever it is we are struggling with.
It will be OK!
“Though I have fallen, I will rise, Though I sit in darkness, the Lord will be my light. Micah 7:8
Don’t let yourself get down in the dumps and STAY there. Sometimes things will seem bleak, dark, impossible. It is our humanity that makes it so easy for us to make mistakes. We WILL make mistakes, we WILL fail at something, someday. But its ok. He is there for us. Like mom and dad pick you up and brush you off when you fall, God is right behind you , whispering in your ear “rub a little dirt on it!” And He gets us up and going again, EVERY TIME!
Because He said so!
“Now faith is being sure of what we hope for and certain of what we do not see.” Hebrews 11:1
This is my absolute, all time, hands down, utter favorite. It means that even though we cannot see God, we KNOW He is there. We just have to BELIEVE in our hearts that God is. Always has been. And always will be. No matter what other people try and tell you. I had faith that Kylie would be cured even though all the doctors all over the world told me there was no chance if it. I KNEW it, I FELT it, I BELIEVED it even though I had no physical proof of it. I had FAITH in GOD and His plan for my little Squirt. And guess what? My faith was rewarded. My daughter was cured. “My God is an awesome God.” You know when Mom says “Because I said so?” Us parents stole that line from God. No lie!
Wear your helmet and shoulder pads!
“Finally, be strong in the Lord and in His mighty power.”
Ephesians 6:10
Gods love is like a coat of armor to protect you against the onslaught of the evils out there. There is so much bad you can come across, but only if you are open to it. Wear your armor proudly, share with others your strength because the more of you that are wearing His armor, the easier and easier it will be to fight of the temptations of evil.
Well, there are SO MANY more things we want to share with you from the bible. So much good advise, so much “food for thought”. It really is a great resource. And we must let you know how truly blessed you are to have been introduces to the bible in such a positive way with all its wonders at this time in your life. As people that learned later in life the plethora of wisdom that the bible holds within it, we must admit, we both could of used it a LONG TIME AGO. But the coolest thing about God, no matter what we do, we are forgiven the moment we ask for it. Gods love reaches beyond anything and thru everything. And as difficult as it may seem in the moment, making the right decisions every day will lead you to a life time of fulfillment, joy, success and love.
We love you with all our hearts and pray that you find your way through life with God in the lead, loved ones by your side and your mistakes and regrets far behind you!
Blessings,
Uncle Joe, Aunt Heather and “the crew”
Monday, May 5, 2008 9:46 AM CDT
HAPPY THIRD TRANSPLANNIVERSARY KYLIE JAE!
need I say more????
Wednesday, April 23, 2008 10:45 AM CDT
Well....another April 23 is here. Another morning where I wake up and think....WOW....Poor Kylie...was woken up to CHarlie screaming HAPPY BIRTHDAY SOOOOO LOUD that she fell outta bed! By 8:30 I was at the grocery store in search of ribs for Super Kylies birthday dinner. And can you believe there werent any? hmph...So she settled for her next request...A1 Steak Burgers. Mighty fine tastes for such a lil thing. Well, Kylies birthday festivities actualy started on Friday when she was suddenly and without notice whisked out of school and taken my her amazing Mrs. Peg to Long Island where she stayed with her West Hempstead family, the O'Donaghues, till Tuesday. She was spoiled rotten let me tell you. From a pedicure at a salon. (electric blue toes !) To all the Hannah Montana stuff you can imagine. At the moment Kylie is shooting hoops out front wiht the kids with many MANY colored stripes in her hair from her Hannah Montant hair coloring gizmo. In fact, Skippy is even sporting a lil pizzaz to his mane. As well as Charlie. And as I looked in the mirror this morning I saw somethgin that suspiciously look like a green swath in my hair. But who knows, it was so early when i was getting innundated with kids and dogs that my eyes may just have been messing with me. Come to think of it , people were looking at me funny in the market. But htats fairly norman, so who knows. More accurately, who cares. We all need a lil color in our lives. Be in our hair, on our clothes, wherever. It lifts out spirit , no doubt. So...I highly recommend, even if just once, you get a lil stripe of color in your hair. THe smile on your face, and others is well worth it. Kylie also got the Hannah Montana/Miley Cyrus concert CD. Which we are currently rocking out to. (well, THEY are, I'm just kind of bopping to the beat) If someone had told me,,,,nine years ago today that my daughter would be born later this afternoon, die, come back, and then lead the life that she has led thus far..I'd slap them. Hard. To look at her life from the outside I can imagine it would seem like a horrible thing to have a child and her family go thru. In fact, I guarantee it. People comment often on how can you still smile after it all.. All I say is how CANT we? Look at her! She went from a lifeless, disabled, critically ill infant to this glorious example of hope and faith! And what an example she is....She is loving, kind, humble, sweet, smart, funny, compassionate, altruistic. SHe is..in the most perfect of all examples...a MIRACLE. And I was blessed to be chosen to be her mother. And I know Joe feels blessed to be her dad.(sometimes..lol....she IS getting to have that pre teen angst thing and we find ourselves biting out nuckles on an occasion)
So, I must bid you all adieu! Things to clean, burgers to make, kids to hog tie!
LOVE TO YOU ALL!
Thank you for being a part of miracle that is the life of Kylie Jae Monica, Super Hero!
Tuesday, February 26, 2008 1:05 PM CST
Well....forgive me...I am a posting slacker...Kylie still has the MRSA but is on Linezolid oral and Vasocidin ear drops...they are keeping it at bay...The first time the script was done within 48 hrs it was back...Im not looking forward to this next round being finished....Keep your fingers crossed..Seems that Kylie has not been alone in her January/Feb infections...Coleson spent time in the hospital in Jan on a vent with a rare infection. Now hes stuck on Bactrum for A WHOLE YEAR....He got to take the Linezolid too...I forgot to ask Y if her pharmacist looked at her like she was insane too...I had to drove all over Gods country to get Kylies...And the insurance company dosent cover it....cuz its so new...::eye roll::
Jordie is free of her cast, much to her chagrin...she loved the attention adn still kind of hams it up for a lil service now and then...I hope she marries a patient man. Everyone is fine here, well mostly everyone...Valentines was a treat as I got to go see Phantom of the Opera. I saw it 20 years ago and Joe got us tickets to see it before it closes for good in March..I was looking at teh actors onstage and thinking..some of these people....werent even born yet the last time I saw the show...LOL Man I'm old...
ANd decrepit...adn growing more and more decrepit as the hours pass... I have been pretty sick lately...not out and about...treatment for Rhumatiod Arthritis is not very cooperative with a household of 8 children and a husband that works 12 hours a day 6 days a week...I've felt abundantly overwhelmed, physically and mentally. But this too shall pass....I keep saying as the baskets of laundry pile up, as the school projects pour in, as the days come and go that my hands wont even work enough to open my wallet let alone type an email, It could be worse....It really could, and I will forever be grateful that its not. I read up on a bunch of old CaringBridge pages in my favorites list from back in the day....Can I tell you that like 80f them never survived whatever it was they were batteling? Most parents still update here and there..and as I read them, I was slapped into reality. I BEGGED God....for YEARS...to spare Kylie and let me carry her burden...and it looks like He took me up on it...The pain, the meds, the side effects... And i'm so up for the challenge! And hey! If i loose my hair, I know someone with about 100 bandannas I can borrow, although most of yall that know me, know Ill be the one with the bald head with a smiley face drawn on the back! \
In my down time, which seems like all the tims as of late, I read My Sisters Keeper...yeah...I know....If you read it or heard of it I bet you are thinking OMG...I couldent put it down...I did it in less than 3 days....and I cried for every moment i was reading it and every moment i wasent...It brought to the front of my tounge a HUGE issue that weighs heavy on our shoulders....We have discussed it....but ignored the reality of it...We acknoledge it..but....we pretend its not htere...kind of like a 800lb gorilla...Kylie is a healthy sick little girl...She has issues and complications at every corner she turns...Not big ones..more like...aggrivations..nuisances..But real issues nonetheless..She has a liver that..well..has an attitude...It gets bitchy...Its is sensitive and makes me nervous....As well as other systems in her body..Becaus ofher complications we will never be able to truly prepare for any future issues...But...considering the complexity of her DBA...its not somethign that we arent expecting...And well.."Lucky Kylie" you say! She has Jordie! you know she is her perfect match! Yeah...we do...and what does that mean for poor Jordie?? Is she Kylies own personal "Wal-mart"? Should Kylie need anything...cells, tissue, organs...Do we just go shopping at out local neighborhood Jordyn Lynn?? That book....was fiction...but my life is not...And it touched me ..deeply...I cried for Kylie..I cried for Jordie....Will Jordie feel responsible for Kylies survival for the rest of her life? Shes only 6..hasent even entertained these kinds of thoughts.But that book...reminded me that she will...And I can't et her carry that burden...I wont let her...
my hands hurt...my neck hurts...and I have laundry staring at me that my Jedi Mind tricks arent folding...I'm telling Yoda I want my money back!
Who are we voting for on Idol this season??
Friday, January 18, 2008 9:12 AM CST
oh man..its CWAAAAZY here.......ok..Kylie is home..How many people get to say THANK GOODNESS IT WAS MRSA?????
Well...we do! A heck of a lot better than GvHD..there is a plethora of other issues we are facing in the months ahead, and I promise to share it all, but for now I am in a rush...Typical Monica chaos...including a broken ankle for Princess Meatball....Yup...Jordyn is in a cast to her knee....shoot me...
love you all!!!
Saturday, January 12, 2008 8:17 AM CST
Ah..dear friends and family...Kylie has a Gram Positive Coxi....MERSA...it IS sensitive to Vancomyacin so we are grateful for that. But she is in isolation and it brings back memories of transplant...gowns, gloves, contact precautions...::sigh::
The infection is under control and it is responding and as soon as she gets the clearance from ENT she can go home on the oral MERSA antibiotics.
Shes also has no GHF....growth hormone factors...but we can manage all that out patient with endocrinology.
Absorbtion issues are still pending...
poor kid...
But is wasen't GvHD..woooohoooo!!
Gotta see the postives in all this!
Tuesday, January 8, 2008 7:27 AM CST
typical Kylie..our visit turned into an admission and Kasey and Charlie and I did not get home untill 1am...Ill drop the kids of at school and my moms and head back today...
Dr. V is worried about GvHD...poor kids a bit of a mess...
Kasey Mae summed it all up for me last night at 11pm when I finally had her in her room on Med 4 and settled in with the doctors and nurses...
In th night..we strolled thru the streets of New Hype Park to the van...I got a very tired (and sobbing) Charlie and Kasey Mae into theyre car seats..and as I reached over Mae...she started to cry and choked out..."If the windows were wet, I'd write Kylies name."
As the tears silently fell from my tired eyes..I kissed my little MiMi and said .."I miss her already too ..."
(I'm crying as I type this...))
As much as the kids fight ans argue...the love runs deep in our house...
PLease pray for Joes mom as she undergoes surgery today. Joes got a lot on his mind right now, poor guy...
Thursday, January 3, 2008 10:50 AM CST
WOW..its been forever...Im sorry to all...I have been sick sick sick...forst the norovirus then bronchitis ust intime for Christmas...Joe stepped up and wrapped EVERYTHIGN for me this year! Whew...New Years consisted of lots of yummy treats and goodies , a few movies, and come midnight, 10 people and 4 dogs snoring to Order of the Phoenix...we woke up just in time to miss the ball drop....rats...well save the Korbel for our Anniverary in a month...I have been trying for almost a month to get Ky to LI for a transplant visit..but I had to cancell twice because i was sics, once for weather and I had to cancell todays visit because Cody and Tyler Lee started to puke at 1am....Lee is still going strong..Cody just said hes inthe mood for Wendy's...bleck...
Kylie STILL has the ear infections...and shes loosing weight, so Dr. V is suspicious of GvHD....the ears have been infected since JUNE....this is NUTS...
Pray for Squirt that I can get her to LI ASAP..w/o any more puke a pallozas...
I have to go ....laundry awaits...the bigger the kid the more puke they make....ewwwwww.....
november 23 20007
hey kylie is home and better but plz pray for our family because joes faher died yesterday he is home and all better and watching over us all joe and i love you all love heather
well...hmm..this was NOT what I dictated to TJ over the phone as Joe and I were on our way to Brooklyn on Tuesday...but, he got the job done for us and for that I am grateful. WOW...what a long few days. THe kids said it was raining because the angels were crying when PopPop died...I think they were cryign because of all the cash they lost to him at the tables...That was SOnny...always bettin on the numbers. Bada BING!
You want good bread??
Brooklyn....
You want good deli meats??
Boars Head...from Brooklyn!
Chicken breast, red peppers and mozarella subs???
Fogeddaboudit...Brooklyn!!!
heh heh heh....That man cracked me up....HE still does and always will...
Kasey Mae was inconsolable..I had to carry her into the church. And as we walked past Pops casket to get into our pew...she (and all 500lbs of her) bent over and kissed his casket. I nearly wiped out and fell apart at the same time. Then she did it again at the burial after everyone laid the roses on the casket...Lil Meaty Mae mised her Pop....
I have to scoot..love you all!
THanks for your prayers
Monday, November 5, 2007 12:39 AM CST
Welll...Happy Fall and Happy Halloween. Thank you to all my dear frinds that remembered it was my birthday on Halloween. Another year has passed. ANd what an amazing year it was, yet again. As I look at the 35 long stem champagne roses that grace my bay window I think to myself how perfectly each one represents a year....Each petal is a different experience, feeling, situation that happened that year..All layered together make up the body of the flower. The stem is my family that gives me support and strength, a few thorns represent the few bumps in each year. Some roses have a few thorns, some have more. A LOT MORE. But they all have a ton of petals and a long, strong stem. Each rose, no matter how many thorns, smells heavenly. Full of life, full of love. The scent drifts thru the house, theyre presence is smelled the moment you walk into the house. Everyone walks in and goes...mmmmmmm!!! ahhhhhhhhh!!! even before they see them. THen its Oh my goodness! HOW GORGEOUS.
I was so greatly humbled by Joes gracious gift. Yet again he went on a search for the same roses from our wedding. He came very close. And the effort was greatly appreciated. And as i sit back and gaze at them...I wonder if her realises the volumes that this gift speake to me.
I met my husband when i was 18. Still a kid, but also a grown up. The second I saw him it was love at first sight. Six years later we were married, had TJ, COdy was on the way, bought our first house and had many many more kids planned. I can guarantee you that never in our life could we anticipate all the thorns and petals that would grow on our stem...not in a million years.but looking at it now, what a boquet we made.
Wehave a total of 10 amazing children. Each one fantastic and miraculous in their own way...and then theres Kylie. wow...need I say more?
Yet still here we are...like kids in a candy shop. Holding hands at the mall...bowling on weekends...strolls at night w/ hot cocoa and matching wool hats. No matter what we are doing someones hand, foot, elbow, whatever is on the other person im some way shape or form. He laughs at my jokes...no matter how bad. He works from 6am to 6pm and still comes home and helps me with my chores. We never even raise our voices at each other (anymore-lol). In fact this weekend we had a tense moment at Lowes and the look of shock on the kids faces told us thats its been a VERY long time since we have even verbally disagreed on anything. I had people telling me that as I approach middle age I might find myself loking back on my life wondering where it has all gone. But in fact for me. QUite the opposite has happened. As i looked back and reflected on my life I was amazed at the sheer volume of things i have seen, done, felt, experienced in my life. I have lived 5 lifefuls thus far comared to some people. My emotions have run the gammut. I have experienced the low and highs over and over again and everythgin in between. Ive lived, loved, laughed and cried an exponential amount. My life has had joys and sadnesses, triumphs and defeats. I also realise that I have learned somethgin from each thing. My heart has been touched in places i did not know i had...My spirit had reached levels of wisdom i have only dreamed possible. I have been witness to His glory and I have been witness to His wrath. And when i look back on my last 35 years...I can only anticipate the nest 35..If I've come this far with the first half of my life, imagine what i can do with the next half. The 2nd half should be cake compared to the first. I wont have to go thru puberty or labor EVER AGAIN!
So...thank you again for all the birthday wishes...they were ALL greatly appreciated.I will post halloween pics tomorrow! TIme to swtich some winter clothes! LOVE YOU ALL!!!
Saturday, October 13, 2007 9:28 AM CDT
Good morning all...well, as you can hear, I have changed the song on Kylies page. As beautiful as it is, they are not pleasant reason that prompted the change. Above all, before anyone gets nervous, know Kylie is perfect but for this ear infection STILL...after this round if oral and drops, were are gonna try IM Roceftin...poor kid...
But the main purpose for the song change is to emote the feelings Joe and I are having regarding hes dad, Sonny. I have mentioned in the past how hes dad was diagnosed with a rare bone marrow cancer. Treatment brought him to remission within the marrow, but it spread to other places. Sadly, this weekend he suffered a stroke, which lead to the realization that it had metasticized to his brain. Joe and his brother Kerry have been to see him a few times this week and every time the kids and I try to talk to him ont he phone he just cries and cant stay on the phone. Tyler Lee told me the other day she had a very sad dream about her PopPop while we were driving..and just burst into tears. I started crying with her. The babies are all old enough to know this is not good. And although they do not get to spend a lot of time with PopPop, they all adore him and are devastated. Charlie and I just got treated to a suprise visit last week when Uncle Kerry drove Pop over to our house for a few hugs and smootches. But when they left, I just sat and sobbed at the shell of a man that this bastard of cancer has left in place of the man I met over 15 years ago. Sonny is a hoot. When you think of Brooklyn..you think of some "Eye-talian" Vinnie Boom Batz in a running suit w/ some bling and a wicked "Noo Yoak" accent... "Fogeddaboutit" and all that. Larger then life...big block parties, big voice, big laugh and an even bigger heart. (im starting to cry typing this)) I remember a block party in Brooklyn...the first one after Kylie was born...she was home after her first 3 months in NICU..she was hooked up to a plethora of tubes, wires, oxygen, etc. It was a mess... This was before her big crash, before the treach, before diagnosis...she was basically dying a little every day. Wasting away to nothing...She was so tiny...so fragile...When we got there, he was afraid to pick her up. Finally he did...and he couldent get enough...Nothign like the big hands and the warmth of a Grandpas love...Kylie, who was typically very uncomfortable because if all her reflux and stuff, went right to sleep...Like she knew she was in the safest spot she could ever be. It was only two days later that we would almost loose her..for good... where her almost end, ended up becoming the journey to her cure. It was her Pop and Angela (Sonnys wife) that would visit her at Schneiders when we couldent. He would pray for her...My, how the tables turn, because last night she told me how she was praying for him.
But those parties...wow...all I can say is that man can cook some mean chicken..And I took a picture of it cookin on the grill as proof for future generations...
We plan on seeing him this SUnday so long as Joes cold clears up. Im going to have the kids make him some nice cards...
So...pray with me ...
That the doctort are guided by His hands, that His wisdom is heard and felt by all who are in his life...family, friends, hospital staff...Thats all we can ask for...want or ever need..
"Im finding myself at a loss for words, and the funny thing is, its ok...The last thing I need, is to be heard, but to hear what what You would say...
Word of God speak, would You pour down like rain, washing my eyes to see, Your majesty...To be still and know, that Your in this place, please let me stay and rest, in Your Holiness, Word of God Speak..."
Mercy Me
We did get to see Dr. Moorthy at Robert Wood Johnson and we are SO blessed...there is a reason for everythign and the chaos at Columbia was necessary to guide us to her. And the staff is just as AWESOME!
No word on Bubbas Dx. till we get seom more labs back. Its a waiting game, but i feel better knowing that its in the right hands. (other than His)
Tyler Lee is actually anticipating her appointment with her because she is so nice.
I feel good that some of the burden has been lifted...not much but some. lol
Time to go get the kids ready...We have a wedding to go to at 2. Pam, our wish coordinator from Kylies Marty Lyons trip is getting married and invited us..(she must be nuts)The girls are SO excited...Im glad they have the distraction, since they have been so sad..its cute to watch them talk about what they are going to wear and how they will do their hair...Oh boy are we in trouble...We had better start now on the plans for the addition w/ 5 bathrooms. Cuz were gonna need it!
::sigh::
love you all...
I'll be back
Wednesday, September 26, 2007 9:52 AM CDT
Hi guys...Sorry,its been bonkers here as usual...As for my trip to Dr. Eichenfelds..well..what can I say. THe morning was nuts..GOt the kids to school, dropped the lil ones at my moms and headed into the city...I got a little lost, but recovered nicely. We finally found a spot for the monster of a van to be parked..and we went in..only to be told that he was on holiday... and that they "say" they left a message cancelling the appointment. Now...I have Vonage...I have a record online of ALL calls coming in and out since i got Vonage...PLUS all my voice mails are sent to my email address PLUS my phone...I swear on Kylies engraftment I got no message...Now, I start to cry a lil...my nerves are not as resiliant as they used to be apparently. They put me on the phone with the gentleman that schedules Dr. E's appointments and he keeps insisting he left a message...I say well..Im here...I drove 100 miles, almost 3 hours...can another doc see them? (mind you, I'm crying, mortified in front of a room FULL of strangers) And the arrogant snip says no,there is two on and they are both booked full..I offered to wait as long as it took to get squeezed in, just to be seen...and he was just adamant that they could not be seen... So, I left...devastated...knowing i cant get Ryan into ANYONE ELSE IN THE TRI STATE AREA untill the end of October...all while hes missing random days of school because he cant even move from his bed to go potty...Tyler Lee can wait..but Ryan is limping when he is walking, his leg is not turned our funny from trying to relieve the pain in his knee, heel and hip......and my Ped can't do ANYTHING...says he NEEDS a Rheumatoligist..So I keep loading him up with Motrin hoping to get him thru a day at school w/o a fever or too much pain. THankfully the nurses at Kylies school know us very well and have been very understanding. They will call me if he needs to come in and give him more Motrin, and they will listen to him if he says if hes in too much pain for gym. Its a shame because no one ever thought they would see Ryan, VOLUNTARILY sit out on gym..its just UNHEARD of. So...I have since then, found a Peds Rheumatoligist here in NJ at Robert Wood Johnson..But still, he cant be seen unitll the 2nd week of OCt. Its frustrating...BUt he needs treatment. And I feel very betrayed by Dr. Eichenfelds facility...I definately wont be going back to be treated like THAT again...And to add insult to injury, I went to get my van...and the idiot wanted me to pay him 12 dollars for 11 mins. I lost it..completely...((people were clapping for me )) I said I AM NOT...I repeat NOT, paying you ANYTHIGN to park my car for 11 mins for an appointment that was mysteriously cancelled..Send the bill the Pediatric RHeumatology. Now, GIVE ME MY KEYS OR CALL THE POLICE....He chose to give me my keys...Good choice... As I walked to the van, I could hear other parents saying "YOU TELL EM!" "YOU GO GIRL"...Oh man...I was in no mood...
Other than that, I have been bed ridden with a horrific sinus infection since last Friday. Yippee...welcome fall....In fact, this has whooped my tushie, so, I'm going back to bed...Love you all....
Thursday, September 13, 2007 12:56 AM CDT
Hey all...tomorrow I'm going to Columbia-Presbyterian with Tyler Lee and Ryan to meet Dr. Eichenfield. PLease think of us on our journey for answers and relief for two of my sweet kiddos. I have to drive over the GWB, just like my trips to Montifiore and Schneiders. LEts hope for little traffic, availaible parking and some really positive helpeful answers. Im still overwhelmed by the JRA...just the fact we have yet ANOTHER thing to cope with...but..we will overcome...like we always do.
ALso, please pray for my freind Tammi's grandson Ameer. He was born preemie a few motnhs back, and hes still tiny. He reminds me so much of Kylie...preemie, itty bitty, feeding tube, failure to thieve...THe memories come flooding back like crazy. He is having a surgery for his Reflux tomorroy,most likely a NIssan Fundoplication. He is having a broncoscopy for a blockage and an MRI of his brain that will decide his need for brain surgery or not.
Dear Father...please guide AMeers doctors hands tomorrow. GIve them strength, physically and mentally to make the necessary changes, so that AMeer may flourish and grow into the amazing human that you intended for him to be. PLease make the Fundo go smoothly, the bronch be successful and the MRI show positive news that makes surgery unnecessary....
Amen....
Tuesday, September 4, 2007 11:57 AM CDT
Let me start off with a great big THANK YOU to those who have supported Coleson along his journey thru transplant, he is staying at the Ronald Mc DOnald house, doing great and ready to have his central line taken out.
Next up is Hilary Woodward our honorary "Monica" and hero. She took the Grateful Giving ball and RAN with it. Please check out Grateful Giving, The Cure Kylie Foundation at Loyola College in Baltimore, Maryland and see how she is inspiring fellow students to make a difference in the lives of families with sick children.
Third, my apologies to you all who think I have disappeared off the face of this earth. I needed time away from all things mentally challenging. Summer home with 8 kids was tough enough. ANd I really just went into shut down mode. Just think, it was the first summer in 8 years, I did not have to spend nearly every day back and forth to hospitals (well, one in Long Island anyway).
Finally, its time to start coping wiith a new medical complication thru my internet rambelings. I know how it helped me cope with Kylies DBA since 2003 and now its time Kylie passed her tortch on to another sibling..or two..
You see, this summer I have been tending to the medical needs of Ryan. Kylies little brother. It seems Ryan, or as we call Bubba Baby Big Boy, or Bubba for short, has somethign called Juvanile Rheumatiod Arthritis. It interfered with his ability to , well, be the active, busy trouble maker he usually is. And during active flare ups, makes my Bubba, who usually has more pent up energy than a Nuclear Reactor, still and silent. And sad. I was handling it all fine and well till the day I had to carry him from off his bunk bed, and carry him to the bvathroom and help him go potty. That was it..I brought him downstairs, tucked him onto the couch, gave him a motrin and went and cried in the shower. (my favorite transplant break downs spot)
I spent a good few weeks this summer moody, distracted, sad, overwhelmed....distant. As you can all tell. I had a few pity parties..."why me's, why him's, why us's" Havent we had our fair share of tragedies?? When will this end?? Brief, but I openly admit my weaknesses and have no qualms purging them here. From the x-rays, scans, lab work, i felt i was back in my MedicalMommy Mode. Keeping appointments schedules, files collected, internet research, Medical Journal Articles read(REALLY pays off having a sister who is a pediatritian!! Thanx big sis))
I know JRA is not a lethal disease...there are many forms and we are still unaware as to which type he has. To me, it dosent matter...It is what is is. It's ANOTHER thing to deal with. And I THOUGHT I met my quota on children w/ Specialists and Medical Diagnoses. And when I see anyof my childrten suffering or in ANY pain, I am hurt. But to see Ryan in chronic pain. {{shivers}} Some days are good, some days are bad...But all days are uncomfortable. The first few doctors appointments we figured it was just growing pains in his knee...Then the fever came, and we thought it was viral. But it lasted for months...all the studies have led us to the final diagnosis of JRA and now we are delt with the reality of a disease that CAN be debilitating. Thanks to the recommendation or our beloved Dr. Lipton, Soon, we will be traveling to Columbia University Hospital in NYC to meet with Dr. Andrew Eichenfield who specializes in the field of Pediatric Rheumatology. ANd As I have just learned is the Medical Director at Camp Sunshine and married to our favorite Camp Sunshine Social Worker Nancy Cincotta!!!
What a small small world... and its getting smaller.
To add to the frustrations Ryan will be acompanied to Dr. Eichenfields by Tyler Lee as it is also suspected she may suffer from JRA as well... You see, last year she spent a good portion of the summer in a sling. Her left shoulder was swollen and in a lot of pain. There were no obvious injury on the x-rays, so we treated it as a sprain and gave her motrin. That same pain had flickerd back here and there and two weeks ago it came back with a vengance. It was brief and I would have preferred to take her to the doctors, but she was admant it was feeling better and I let it pass...Untill yesterday...it happened again, her shoulder and collarbone swelled up and I gave her no choice but to go to the doctors. There I learned that she has chronic pain in her ankle, back and hands...a fact she was hesitant to admit as she did not want to worry us...((what a kid...)) In 30 mins she will have an x-ray. If it is an injury we will go to an orthopedist and deal with it thru him. If not, she will have lab work used to diagnose JRA, and she will be joining Ryan at Columbia in 2 weeks. And I will possible be crawling into the bottle of a very high proof liquor bottle.
SO..In case you were wondering what I did all summer, now ya know...Oh yeah, I broke my left hand too...((Im left handed...grrrrrrrrrrrrrrrrrrrr))....
SOOOOOOOOOOOOOOO............
Please think 0f us Monicas kindly today, say a few prayers for Ryan, Tyler Lee and the rest of us, if ya dont mind...And I have a feeling I will be back to updating more often as a coping mechanism...
Thanks for all the free therapy!
Love you All!!!!!!
Heather
**** UPDATE 3:30 PM ***********
Just as we suspected, there is no visible fracture or other explination for the pain. An orthopedist is not necessary, so I will not have to cancel Tyler Lee's appointment at Columbia. So, it seem as though Ryan Tyler Lee and I will be on a road trip next friday....::sigh::
"on the road again.."
Friday, July 27, 2007 10:18 AM CDT
I need you all NOW...
Heather, I am hoping you don't cringe when you seem email from me. Well, we had a rough (to put it mildly) day yesterday. His abdomen is swollen and his liver is not functioning properly. Please send the word out to all the prayer warriors you know.
Just NOW cOLESON BEGAN SCREAMING AND WRITHING IN PAIN IN HIS BELLY. Heather , please help we neeD prayers right NOW.
THANKS,
Y-
PLease,help me lift them up in prayer...this is a parents WORST nightmare...believe me, I KNOW!
Love to all- H
I just got this from Yevette....
Once again, I come asking all of you prayer warriors to pray for Coleson.
They are sending him to get an ultrasound this morning. I am praying and hoping that there are no (major) problems. Please pray with me that the answers are obvious and easily taken care of. They are looking at his kidneys, liver, pancreas, lungs, ALL MAJOR organs to find out why his belly is bloated and his is not having enough OUTPUT of urine. Please pray diligently and fervently with me. I appreciate you all more than I could ever express verbally. It is the prayers of HIS people and HIs answeres that have made our journey so managable and peaceful. I pray for QUICK answers. I pray healing in Coleson's body right now before we ever leave this room. Please pray that all his organs are FINE, w/ no damage!!!
I will let you all know as soon as I do thanks so much,
y-
PLEASE, VISIT COLESON AND PRAY FOR THE SHAWS!
June 29th 2007
Oh man, I'm a BAAAAAAD girl..
but its just been tough for me to update..
I promise to soon, but for now, please go to Coleson's page
Coleson is in the midst of his transplant for DBA in Texas...Man do they need some love and support...And I know you are just the people to give it to them!
*CONSTRUCTION ALERT!*
Kylie's page is getting a makeover this week...so if you see something that looks new and different, don't worry, it's not just you! lol The new theme will be explained soon...
***
Hi everybody!
First, allow me to apologize…it’s Hilary writing tonight and not Heather, which I know is a bit like getting a cup of plain ice cream when what you REALLY wanted was a sundae, but there are two very good reasons that I am the stand-in.
Reason 1 – I just spent a few days at Casa de Monica, and Heather and I wanted to do an update together…BUT her laptop is broken, and if we attempted to do it on the desktop, not much else would get done because that PC is pretty slow!
Reason 2 – Heather is in Arizona! ALONE!!! Well, not really alone – she’s with her parents and brother, who all flew out from NJ to celebrate her sister Dawn’s graduation from medical school. Heather left yesterday, and her sister had NO CLUE that she was coming, so I’m sure the look on Dawn's face must have been PRICELESS! To facilitate all of this, Joe has stepped up to the plate and is managing the household – including Saturday soccer games! – with help from his mom. So between surprising the Loyola Grateful Givers to planning a trip to Arizona to getting the household ready for summer to simply managing day to day Monica Mayhem, there hasn’t been much time for Heather to squeeze in a good update.
I’ll try to pick up where she left off – yes, my fellow Loyola students who participate in Grateful Giving finally got to meet the Monicas and (no surprise here) LOVED them! We are all so thankful they were willing to truck down to Baltimore just for us. I’m sure more on Grateful Giving will follow as the summer progresses…Heather and I have been brainstorming some ideas, and I am THRILLED with our success at Loyola.
As far as the big May events – Kylie’s two-year transplanniversary was May 5, and Joe and Heather took the kids out to eat to celebrate. Ky also made her First Holy Communion and looked gorgeous (unfortunately, I’m speaking only from pictorial evidence, since I had to miss the big day thanks to a 9 AM biology final back in Baltimore the next morning…grrr…but Heather has a CD of pics and will hopefully post some for you all.) Kylie still had a sizeable fan club – Mom and Dad, her sibs, her grandparents, and the Willmans – and after mass she got to celebrate with brunch at Old Country Buffet (which is pretty much her favorite place to be!) so I think she was a pretty happy camper!
Now onto my visit…nine years ago, Tyler Lee had the courtesy to be born right about the time that Memorial Day Weekend rolls around, so we got to do a dual celebration of both her birthday and the holiday. Heather took Tyler and me on a wild goose chase for a nail salon – ANY nail salon – that was open on Memorial Day. Easier said than done, but just as we were ready to give up and go home, we found one, and the three of us all got manicured before braving the Garden State Parkway to pick up Kylie after a stay with Mrs. Peg. Evening brought grilling on the deck and eating underneath the AWESOME new gazebo that Heather and Joe picked out, plus boardwalk strolling after the younger kids got tubbies and Kasey Mae, who has developed a wicked allergic rash on her legs from who-knows-what, got a dose of Benadryl.
Now, I have to say a few words about the Seaside boardwalk. You would think that a boardwalk on the beach would provide some nice family entertainment as the sun sets, but you would be WRONG. Horribly, horribly wrong. Heather wrote about this last year, when the belly shirts and too-low pants and body suits and, my personal favorite, the girls who walk around in short shorts with the flies WIDE open, were sort of amusing. This year, the amusement has worn off and it’s officially disgusting. Not to mention the fact that half of the stores on the boardwalk SELL this stuff, some of which comes complete with screen-printed slogans that should be plastered with an NC-17 rating. Cody did comment at one point that it was annoying that people stared at us, seeing as the whole eight-kids-11-and-under thing can draw some second looks. Honestly? I never noticed because I was too busy staring at everybody else! (Although I did notice the guy running the break-a-beer(yes beer)-bottle-with-a-baseball game who thought the kids were all MINE before Heather and Joe mercifully appeared after buying ice cream…I’m 22 and was told tonight that I look 13, so we’ve got to wonder what’s going on in HIS mind! Yikes!) We called it a night by the time Kasey Mae’s Benadryl had kicked in and she was a gorked-out, walking (barely) zombie, and TJ got in the van declaring that he was NEVER going back to that boardwalk if the scene was going to be like that. Smart kid. The hope is that the daytime hours will be more appropriate and less nauseating. Keep your fingers crossed!
Tyler Lee’s birthday was Tuesday, and while her parents put the younger kids to bed, Lee asked to take a walk around the neighborhood with me and invited Kylie to come with us. We still had some daylight left, so we threw on sweatshirts and went strolling, just the three of us. I don’t know if I can even describe how much I enjoyed spending time with those two. They each held one of my hands and we wandered and talked, but most of the conversation was between the two of them and I got to enjoy listening. They shared stories from each other’s classes in school, and Lee talked about wanting to join chorus and orchestra next year, both of which are privileges reserved for the fourth and fifth grades. Kylie is psyched for the later lunch time she’ll have next year in second grade, but she so wants to sing and play an instrument too, and had she not been sick and had a transplant to contend with on top of her pre-existing delays, she’d be a grade closer to that. As soon as she pointed that out, Tyler never skipped a beat. “But Kylie, it doesn’t matter that you were in kindergarten for two years…you’re still SMART, you just had to miss a lot of days, so it wasn’t your fault. And you’re REALLY good at writing.” Then Lee turned to me. “She’s a good writer. She’s a REALLY good writer.” Kylie’s grin was ear-to-ear. And so it went…we arrived home just as darkness fell, with the girls making me promise that the next time we would leave earlier so that we could make it all the way to the park. Ryan also made me promise to walk with him next time too, and I look forward to it. I’m sure that the kids go through much of their lives known as “the Monicas”, and they are all proud to be Monicas, but they are all such wonderful individuals too.
I’ll leave you with some photos I took of some of the kids playing outside on Tuesday, but before I do, I’d like to ask you all to say some prayers for our friend Justin (nj/justinw), who is having heart surgery on June 5…he just had a surgery two years ago and wasn’t supposed to need another so soon, so this is a very difficult time for him and his family. Kylie will also be seeing her cardiologist in the not-so-distant future, as will Tyler Lee (who you may remember was diagnosed with her own heart abnormality last year, but doesn’t yet know as Heather and Joe weren’t told until after the appointment and the cardiologist did not feel that immediate action was necessary), so please say some “heart prayers” for the girls and for Justin, too. Justin so wants to be a normal teen…Tyler has never faced anything but normalcy as far as her heart goes and everyone would like to keep it that way…and Kylie is finally enjoying having some feelings of “normal” (and she’s doing it sans hardware, as Tyler accidentally yanked out her deflated g-tube on the trampoline, and Kylie loves showing off her belly without its “tubie!”) Pray for a successful surgery for Just and good reports for Ky and Ty, whenever they go for their check-ins. Oh, and pray for Heather to enjoy her time in Arizona and then return home safely, as I can think of one husband, eight kids, and two dogs who are probably really missing her right about now!
Thanks for reading and checking in on Kylie and the Monicas! Love to all!
Hilary
The hero herself, Miss Kylie Jae Monica
Kasey Mae...I'm not exactly sure how or why she ended up in this position!
Charlie...Heather suggested I post this photo and let you all know that this is how children are punished in the Monica household! LOL No worries, he just got a bit stuck, and he would have freed himself quicker if I hadn't asked him to stay put a few extra seconds so I could snap a picture!
Ryan the trapeze artist.
Jordie Lynn on the trampoline - fortunately, she loves the camera so much that I was able to settle a sibling argument (three swings and four kids who want to swing - you can do the math!) by essentially bribing her with extra camera time if she could wait a few minutes for a turn. Then she planned her own photoshoot - LOL, gotta love her.
Last but not least, another of Kylie...this one is my favorite of all the snapshots I got that day!
Thursday, May 3, 2007 8:54 PM CDT
Well, the clandestine operation I was working on was a suprise trip to Baltimore to meet the members of Grateful Giving. Hilary and I were keeping it a secret and since the members read Kylies page, I couldent spill the beans.
But now that I am home,I can talk all I want about it!! I prepared a little something to say, and I would love to share it with you all...
Thank you so much for being here today and thank you even more for joining us in our mission to bring smiles to the faces of sick children and their families. Our motto for Grateful Giving is “Laughter and bubbles are, by far, the best medicine”. Believe me, I know. Nothing hurts me more than to walk into a somber waiting room full of sick children accompanied by stressed parents and siblings. These families are dealing with the most tragic of all situations, a child with a life threatening illness. Families that are scared, no…TERRIFIED… Families under stresses that no one should ever have to experience. For 8 years now, we have been that family. Joe and I are those parents, Kylie is that child, these kids are those siblings. We learned first hand, starting the day Kylie was born, how fragile life is, and how precious each moment on earth can be. So, after Kylie was healed from her transplant, and we recovered as a family, we knew it was time to pay it forward all that was done for us. Our mission was to spread a little love and joy, and to leave behind a room full of bubbles, smiles and the sound of angels laughing. Nothing is more amazing than that sound. One of my favorite memories of any hospital (along with the day I walked out knowing that Kylie was successfully engrafted with Jordies stem cells) , was the day Hilary and I spent bringing smiles to our home away from home, Schneider Children’s Hospital in NY. That day Hil was Kylies entourage. I was her chauffer. Once she gets there she is usually whisked off to visit, hug and kiss, surprise and inspire. That day was no different. While she was off melting hearts Hil and I were lifting spirits. We passed out goodies to all the kids in clinic. All the kids got different stuff but EVERYONE got bubbles. I’ll never forget, when I pulled away from the hospital, and as I looked in my rear view mirror, a little boy who had just finished his chemo treatment and his little sister were running around the front doors,chasing their Grateful Giving bubbles, laughing, smiling…..That day I KNEW why I was here…After having Kylie I felt certain that my purpose was to bring this hero into the world. But after that day I knew…I KNEW...I knew that Kylies purpose AND mine was Grateful Giving…Our mission is twofold. 1> To lift the spirits of children and their families going thru transplant. And 2. To teach others to give in gratitude for what they have received, to bless others the way that they themselves have been blessed, and to share their love and compassion with those needing comfort and support.
I can’t speak about Grateful Giving without speaking about my faith. For it is what has carried us thru Kylies journey, only to have emerged from it all stronger, wiser and very, very blessed.
The following was taken from my journaling on Kylies web site.
“I was once told this:
Faith is the eye that can SEE the invisible, Faith is the ear that can HEAR what others do not hear, Faith is the hand that can TOUCH the untouchable.
I may not be able to see very well, my glasses get thicker every year. I may not be able to hear very well, I even put the captions on the tv at night so I don't have to blast it and wake up the neighbors. And my hands, they tend to get sore and tired sooner that they used to But with FAITH we are invincible”
Faith had guided us through a lot of trials and tribulation and it has guided us to what we are here for today. As members of Grateful Giving you can share your faith thru your actions. You can SEE a child and their family hurting, you can sit by their side and HEAR them share their story, their fears, their worries. You can use your heart and hands to TOUCH them and bring them joy. Create a work of art, blow a bubble, even hold their hands as they fall apart because they just cant take one more day of it all…. We have been given the opportunity to bring them a lot more than a smile. We can bring them our faith. Our hope. Our belief in the promise we were given~ 'For I know the plans I have for you,' declares the LORD, 'plans for wholeness and not for evil, to give you a future and a hope'" Jeramiah 29.11
Over the doorway into my living room hangs a plaque. It reads FAITH WILL SEE US THROUGH… According to my Bible “Faith is the assurance of things hoped for, the conviction of things not seen.” Hebrews 11:1
What more do we need than that?
On days when I am struggling with Kylies circumstances (and it happens more often than people think) I look back on it all…I try to remember that thru our suffering, all of us- because each person in this family has suffered because of the disease that ravaged Kylies body, have been blessed. We have learned to live each day to its fullest, forget what we don't have but focus on what we do. We look for the blessings in the smallest things, because we know that is where the most joy is found.
Remember this please, Always rejoice. Always smile. Always laugh. ALWAYS...Even in the most trying times, because you have to firmly believe that you are where HE WANTS YOU TO BE. There is a lesson to be learned in your circumstances, whatever they may be. You may not see the lesson in black and white but eventually it will reveal itself to you and as long as you recognize it you will be a better person for it. I promise.
We recognized our lesson. We brought it to life thru Grateful Giving. You all must have found something about Grateful Giving that touches your heart, speaks to you, whispers in your ear as you sit with a sweet, sweet kid who has been handed a death sentence. Or else you wouldn’t be here….And the lesson is being paid forward. People reached out and touched our hearts and we have, in turn, reached out to others. Hopefully those will someway somehow do the same. On and on the grateful giving goes. And slowly, but ever so surely, our lesson is being taught. The fruits of the spirit are being spread about, quietly, in a box of crayons, a bottle of bubbles, a heart warming smile, or just a simple hug.
The Fruits of the Spirit.
Love, joy, peace, patience, kindness, goodness, faithfulness, gentelness, self-control. Corinthians: 5:22-23
A mom sent Hilary an e-mail after a visit from the Loyola Grateful Givers. She said this “You must have once seen hurt in a child's eyes that you loved, to be doing something so meaningful for others children.” And it was like ...WOW….she gets it. She really, really gets it. Which tells me one thing…YOU GET IT because she got it from YOU GUYS….Thank you thank you thank you…Please let me finish with one last quote…
I find it so beautifully accurate for what started as a few treats being delivered to the stem cell unit every time we had clinic into a full blown club on a college campus …
WHAT LIES BEHIND US AND WHAT LIES AHEAD OF US IS TINY COMPARED TO WHAT LIES WITHIN US.
RALPH WALDO EMERSON
Keep sharing with others what lies within you….
Thanks for reading it all...I hope everyone has a better idea of why we do what we do....
Love to you all!
Saturday we celebrate Kylies 2 year Transplanniversary and on Sunday Kylie recieves her First Holy Communion. Wow...how far she has come from her baptism...in an isolette in the PICU at Monmouth Med...a local priest called in an emergency because we did not expect her to last the night...
Just remembering that day is making my stomach ache and my eyes well up.....
WOW...how far she has come....
Monday, April 23, 2007 8:50 AM CDT
April 23, 2007 the eight celebration of hero....
Wow...are you all as amazed as me? I guess so. I have been pretty candid since what? Oct 2003? Since the inception of this page, you all have been privy to an abundance of tragic circumstances but an exponentialy grander amount of glorious blessings. You each have been a gift to me in particular. An audience to my journaling, comiserators of my sorrows, the crutch I relied upon during times I felt broken. Complete strangers have become "soul sistahs", families from different countries have sat in my backyard and thousands of people from all over the world have found a place in my heart. Forever. I went from crying over the "care packages" that arrived in my mailbox and to Kylie in the hospitals, to being the one who sends them. When a parent nearly fell apart after meeting me and realizing who I was in the kitchen of Ronald Mc Donald, I was able to tell her " I know how you feel" and I ment it. I knew her pain, that her child was so sick, I knew her fear of transplant, but I knew her joy to see her sick child smile at the gifts recieved from complete stranger. I got to be that stranger.
A family touched by the Grateful Giving Club at Loyola University in Baltimore, sent an e-mail that, as Hilary said to me, "hit the nail on the head' when she wrote,"You must have once seen hurt in a child's eyes that you loved, to be doing something so meaningful for others children."
Did she "get it" or what? I get goosebumps just remembering that e-mail.
What a way to honor Kylies battle, journey, whatever you want to call it. By spreading that joy that comes across a childs face when they get a treat in the mail, a package delivered by a tiny, but tough SURVIVOR, a visit from a college student, whos arms are loaded down with stuff to pass the time.
At this very moment Kylie is home. Acting as if there was not major surgery just six days ago. Shoot, nearly midnight on the day of surgery she was sitting up playing Mario Cart on her DS, while sipping apple juice and watching Cartoon Network. Nearly a half hour post op she was whispering on the phone with daddy, asking what the kids were doing. In fact, she did so well, she was home in time for soccer pictures Friday night and joyfully spent the day sturday watching "team Monica" play from 9am till nerly 2pm. She even cheered me as I coached my U5 girls team, all by myself. Everyone was on the sidelines cheering their little girls as they annihilated a little soccerball up and down a little field. Kylie was cheering for Mommy...When I gave the girls water breaks, Kylie offered ME a juice box. In case I get "dehydrated" she said...
Soccer this year was a celebration. Our first venture as a "normal" (we're never gonna be normal) family. This is the year of NO MORE...( I am crying as I type this)
2007..the year of no more surgeries, were done. What needs to be fixed is fixed, what cant be fixed, we deal with and get around it. No more procedures. No more "whats next's" Out TO DO list is finished....(practically bawling now) I think I am gong to write one on a piece of paper and toss in the fire pit tonight. First on the list, "get my baby cured." DONE "heart?" done. "hand?" done. "palate?" done TWICE! and the list goes on..and on... and on... I handed a "patient history" to the surgical nurse at Montifiore Childrens Hospital. She looked at the ream of paper in her hand and asked... "do you need me to make a copy of, uh, this book for you?" Sadly I responded, "No thanks, I have my own copy. In my head." I lived every procedure, even the ones I couldent be at. My heart felt every time she was poked and prodded. My spirit spent years by her side in hospitals, facilities, clinics...no wonder her first few years are such a blur to me.
Those days are gone now, and I prefer to remember mornings like this one, where everyone is home (Spring Break) and playing on the back deck. Breakfast is a birthday celebration of watermelon, pop tarts, chocolate chip waffles with whipped cream and however much of moms home brewed Starbucks one can sneak from her coffee mug without her noticing. And dozens of ice pops. Only purple and pink cause' yesterday they ate all the blue, orange and green. Its a holiday, anything edible is on todays menu.
Somethings have not changed.TJ is popping poppers on the back deck since even before the worms were up in protest at the audacity of taking MY laptop from him to make this update. Cody is inhaling the whip cream straight from the can while dancing in his daily attempts at making everyone laugh. Tyler is screeching at Ryan for breathing. Ryan is taking deeper and deeper breaths and blowing them back at her, only to see how much louder her screeches can get. Jordyn is delegating her duties to others. Since she gave Kasey the last bite of her waffle it is now Kaseys responsibility to clean up the plate and fork. Kasey is still whining about some percieved infraction against her and her bunnies individual rights and is, at 9am, asking me if the ice cream man is comming yet. Charlie is standing in the middle of the backyard just crying, about what, even hes not to sure anymore. And Kylie....Kylie stands next to me painting her Ariel paint by numbers daddy got for her to take to the hospital. Melted chocolate all over her face, which I plan on licking off her face once I am done with this yammering.
So yes, its chaotic.But its awesome chaotic and like Ryan just said as he found a left over sho-cone from last nights visit with the Ice-cream thief, I mean man, "Nothin but love". I know he was was indicating love for the sno-cone in his hand, which TJ has now discovered him with and is chasing him thru the house trying to get back. But still, its a perfect way to wrap this up (so I can stop TJ from trying to fold Ryan up and mail him to a third world country.)
Nuthin but love...
Thats my life, my kids, my mission...
(I did not mean to leave Joe out of this, hes just at work and not here at this moment for me to write about, but he is also a loving, joyful intergral part of the festivities here. I am a lucky woman to have him)
Happy Birthday dear Kylie! You are one in a billion! My hero!
*The Return of the Photos*
Hey all, Hilary here - I told Heather I would resize the photos for her and put them back since I can manage it in less time seeing as I don't have a crew like hers to attend to! So, enjoy the pictures...I'll try to remember Heather's captions, but let's face it - chances are you're getting at least a bit of the "Hilary version." Sorry in advance - Heather, fix if need be!
Heather and Kylie, pre-op last week at Montifiore.
Heather CLAIMS this was taken to cheer KYLIE up...but notice only ONE person's eyes are crossed. You know guys, do that too often and your faces freeze that way. :-)
Kylie post-op and looking beautiful as usual...she even makes major surgery look good!
Joe and half of Team Monica...they are turning into a soccer family right before our eyes! Nice shades, kids!
Another with Mommy - big soccer smiles!
I don't think this picture of Ky and Jordie was on the page originally, but when I saw it I realized something I personally wanted to share with you all. One of my favorite photos of these two was taken on Ky's sixth birthday, when she was in the hospital before transplant. 
Beautiful, huh? Now look at them now, still obviously beautiful but outside of the walls of a hospital and ready to play some soccer! The photos were taken two years apart, almost to the day. I'm sure there will be more to say on this topic come 5/5, Ky's two-year transplanniversary, but for now, I just love to see their smiles!
Happy Birthday Kylie, you're my SUPER HERO today and every day! Love, Hilary
(thanks Hil, your the best! Miss ya!)
Wednesday, April 18, 2007 4:49 PM CDT
Its almost 6pm and Kylie is in her room on the ICU floor, recovering beautifully. Her main complaint is the drool...she is highly insulted by it. She cannot talk right now, but for those of you who know her persoonally, her eyes tell all the needs to say. And right now that is mommys hand on hers...
Montifiore has thus far been an AMAZING facility, any fears I had being outside of Schneiders "Kylie experienced" hands have, have been more than put to rest. The entire staff has been wonderful in helping me try and connect to the interned from my laptop. I have a very clandestine operation going on that I need to work on from my computer...so far, still no luck, but there is a computer across from Squirts room that I can utalize to some degree for updates and such.
I know Kylie is in good hands, both here in the hosppital and from up above. My hero, my saving grace, my child Kylie...
As we waited pre-op, we said some prayers. We asked Our Father to watch over Kylie as she was operated on and we asked that He guide Dr. Parikh's gentle, yet powerful hands. That He bless the OR staff , anesthesiologist and all involved with His infinite wisdom.And that He look kindly upon Daddy, who is at home with a tremendously anxious crew, and a ferociously busy soccer schedule this week. From practices, to games to picture night...Daddy is in the thick of it, and the kids came home today to "Boot camp for beginners".
Yeowzers!!!
So, I am going to sign off, and go on a coffee hunt, wish me luck!
Love you all, thanks for the prayers, they are keeping her (and me) safe and sound!
Sunday, April 8, 2007 8:04 AM CDT
Happy Easter everyone!
Today is the most Holy of all the holidays.
Remember what today is all about. Not the candy, or the eggs, the rabbit, or the dresses and bonnets. Its about the gift of the ultimate sacrifice we were given. His life. For ours. Whould YOU do the same if you were in the same position?
In this house Kasey Mae is a bit of a...well...whiney butt. Everything offends her, noises, wrong looks, even percieved thoughts send her into a howling tirade. Reporting all injustices to Joe and I with Acadamy Award winning emotion, the mere sound of her footsteps on the stairs bring exasperated eyerolls from Joe and I. We often bail on each other when we know she is comming. I admit to once jumping into a freezing cold, not yet even remotely warmed up shower, just to avoid a "Kasey May conflict".
Not long ago, while puting her to bed, she was particularly insulted by her older, bossier, bitchier roommate, Jordyn Lynn.{{gasp}}Jordie??? Kylies perfectly matching angel??? Yessirie! B to the max. Next in line to Tyler Lee. Who runs close second to a beloved, un-named, relative that seems to have passed her "Bossy, Bitchy, Older Sister Crown" to two my girls, having had none of her own, thru the joys of genetics.((oops, did I give it away??? LOL)
Anyway, back to Kasey. She was so sad, crying, pouting, wining, all while sucking the life out of her thumb. The more she cried, the harder she sucked. I swore her nail was gonna come off. I got her to calm down enough to let me tell her a story. It was a story about Jesus. Who never did anything wrong, never called any one name, never not let anyone play school with Him. He was good, every day, all the time. It was because He was so good that people were jealous of Him and the better person He was, the more some people treated Him badly. He was SO good that finally the bad people decided to kill Him because they knew that eventually everyone was gonna realize how GOOD Jeasus was and how BAD they were. They took Him, jailed Him, beat Him, and finally nailed Him to the cross. The people were spitting on Him, calling Him bad names all while they waited for Him to die. At one point,after they nail Him to the cross, Jesus lookes to the heavens, calls out to His Father, "Forgive them Father for they know not what they do." Luke 23:34
I explained to her that basically it means that even though they were killling Him, He loved them and wanted the Father to forgive them.
SO....I told Kasey Mae that when someone does you wrong, hurts you, says mean things, makes you feel bad...anything like that, you be the better person and tell them "I love you and I forgive you". That will stop them in their tracks right there. Even little Charlie, can't help but be disarmed by THAT. Even if hes not really sure what it means entirely.
So, be more like Kasey Mae folks. Blow someones mind. When they hurt you, simply say "I love you and I forgive you." and walk away. What a better world this will be if everyone acted more like my 4 year old.
Happy Easter everyone.
Pardon our disapperance, strep, chicken pox and what not has really hit us HARD this winter, I mean spring. (can it really be spring? It was snowing last night while the Easter Bunny was out procuring egg stuffin stuff?)
I am mentally preparing for Kylies surgery on the 18th. I imagine that is where the migranes keep coming from!!
Tuesday, March 20, 2007 10:04 AM CDT
sorry I have been MIA...Strep and Chicken pox are running rampant in the Monica House....I will sit and write an entry ASAP....Just wanted every one to know all was well, I have gotten quite a few "where are you's?" in recent days!
(Poor TJ has strep and today is his Birthday!My first baby is 11... last week he missed state testing..hes on antibiotics and back at school but still feels crappy...)
TJ- strep
Cody-strep
Jordyn-strep
Kasey- chicken "pops"
Mom- insane
Dad-so tired eyes are sliding from forehead onto patients laps...
Open bets on whos next...
Thursday, March 1, 2007 11:51 AM CST
Todays prayer request is for my friend Heather. Last year I asked you all to pray for her and her husband as they went through the adoption process. They brought home Finn in July last year and what a sweet, yummy little fellow he is! His big brother Charlie LOOOOVES his new best friend and they are a family, complete!
Sadly, it has come to their attention that a bulge was growing from the side of Finn's head and after consulting with doctors, Finn has been diagnosed with premature closure of sutures in his skull...The plates in the back of his skull have fused not allowing for brain growth and baby Finns brains are starting to push out sideways looking for somewhere to go.
Please pray for them all as they have scans in the coming weeks an consults with neuro-surgeons about the possible need for surgical intervention of this issue. In Decemnber we were presented with the same possible situation and got to meet a wonderful neuro surgeon in Long Island who calmed my panicked nerves and let us know that Kylie was in fact fine and dandy! SO, having felt her pain, even of just for a little more than 24 hours, I can tell you they are DEVASTATED! They need your love and suport, but most of all PRAYERS!
A I was dozing in and out of consciousness on my couch last night, my attention not nearly being kept by the pathetic attempts at singing by at least half of the ladies on Idol, I heard a commercial for House. My favorite show. And in my daze I made a strange revalation. My life is creepily paralell to that of the TV show. Watch as I write, how many times you can switch one simple word and the story goes forom House to Monica.
Located in Princeton(Toms River),New Jersey, House(Heather) works at(lives in) a hospital(house)that sees more than its fair share of medical mysteries. House(Heather) is an odd character. Intelligent with a bizzare sence of humor. He(She) limps around the halls(house) usually mumbling to himself(herself). His(her) appearance leaves a lot to be desired with his(her) stubbly un-shaven face(legs), slept in t-shirts and mussed hair. Every day, some new, rare affliction befalls the patients(children)of the hospital(house). From swallowing toothpicks (pennies) to various sexually (sibling) transmitted diseases. House(Heather) works with a team of doctors(alternate personalites) named Foreman, Wilson and Cameron(me, myself and I)to help him(her) save lives(coupons) and solve medical(haircut) mysteries.
Throught each episode(day) House(Heather) deals with multiple sub-plots like his(her) physical(mental) health, co-worker's(hubby's) issues and uncooperative patients(children), yet somehow always manages to save(not lose) the day(her mind).
Tada!!!! See???? Kinds like Mad-Libs....
This week brought four different doctors visitf for Kylie. She was suffering from bad pain behind her rt. eye and spent the most of Monday and Tuesday on the couch with an ice pack on her eye. Two pediatritian visits, an opthomologist AND a neurologist in two days....man am I beat! We now know this...She has stigmatisms (thanks to moms genetic crap bag) needs glasses (like Mom and Cody) and is suffering from severe migranes. (yes, just like her brother, mother, grandmother so on and so forth)
Tyler Lee is suspected of having asthma and the only pulmonologist on the globe I will entrust her with, the amazing Dr. Dadzie, is not taking new patients untill June...Since I am asthmatic, as well as TJ and Kylie we have nebulizers galore, Albuterol, Accuneb, Xoponex, Pulmicort and others at her disposal should we need to treat her before her visit with Dadzie.
Cody went to the optho as well, got his script for glasses with Kylie. On Monday I had TJ home. He was being a Pukeasaurus Rex. Followed by Ryan who is NEVER sick...Ever notice completely insane, hyper, high strung, fearless, beasts never get sick? They run at full force 24/7 and never have down time? I noticed, the bags under my eyes have noticed. My neighbors,when we moved in, noticed. They all knew the name of one of our children before we even introduced ourselves....RRRRYYYYAAANNNNNNN!!!!!! The two syllable word permeates from our walls any given day at all possible times of the day and night...
Moving on.
Just got the call from Montifiore, Kylie is scheduled for surgery for on April 18th.
So....now I stress... Kylie has been hospitalized most of her short life. She has had more surgeries than I'd like to count, but most of her hospitalizations have been from complications to her disease, Diamond Blackfan Anemia. The last time Kylie unerwent major surgery, other than simple procedures like the brocnhoscopy from hell, or things like ports and pic lines, was a long long LONG time ago....Open heart,cleft palate, abdominal surgeries, thumb reconstructions, they were all done before she was three. One week before her 8th birthday she will be having two repairs to her soft and hard palate....and I am a wreck. It dosent get easier. It gets harder. But looking at the goal here, I am inspired. What 16 year old wants to worry about spaghetti hanging out her nose on her first date. What girl wants the have to say her name ten times to a cute boy at school who asks what her name is. Those of us who know Kylie personally all know the "cuteness" of her unique voice, how adorable her scrunched up nose looks when she is talking...and we all are hesitant to let her give that all up. But we must. We need to let her grow us as normal as possible. With all she has overcome these 8 years, she deserves to be able to go on in her life with the only evidence of her battle be a few scars, a missing finger (that no one notices anyway) and this journal.
So, on April 17th I will give her her favorite chicken nuggets(said as only Kylie can), listen to her say it, and say farewell to that Kyliesque voice. And get ready to watch as my daughters voice evolves into that on the new and improved Kylie Jae Monica, super kiddo extrordinairre!
Tuesday, February 20, 2007 12:55 AM CST
Link to E-Bay Dakota Fanning Autographed Book Auction for the benefit of the DBA Foundation
Tremendous appreciation goes out to Julie Pedersen for this amazing gift to the DBA Foundation. Julie has a little boy named Jack who has DBA (and yes, he IS just as cute as Kylie!! All DBA kids have a major advantage over the rest of society!)
If you know someone who is a Dakota Fanning fan, Charlottes Web Fan, collectibles collector, or want to help the DAB Foundation, this is the thing to do!
How awesome would this look, mounted in a shadow box with the accompanying photos????
AMAZING JULIE!!! THANK YOU, THANK YOU, THANK YOU!!!!
First things first: Some of you may have notices a ribbon I made for Joes Dad who is battling Mantle Cell Lymphoma. He is having a surgical lung biopsy today because the tumor is too deep for a needle aspirate…please pray for him and his doctors today.
Next: last week I asked you all to pray for my dear friends Paula and Victor. Victors dad suddenly fell ill and was diagnosed with cancer. Everywhere. Last night he was made whole, cured of his pains, and lifted into the arms of Our Father. He was surrounded by his family. Carried by love, home.
Please continue to pray for the Streets, that they may find peace and hope, despite their loss.
Where do I start...Thurday was, as typical with us Monica’s, completely disastrous. It was still dark when we began our trek to the Bronx to meet the cleft palate surgeon at Montefiore. The entire state of NJ was frozen solid and stuck to itself. Trees looked like glass ornaments completely enveloped in three inches of solid ice. As the winds blew the unforgiving ice snapped, sending enormous branches skittering across the parkway. An infinite number of tremendous trees were literally snapped in half, 15 feet tall arborvitaes’ were bent into the lane so far that the tops of them slapped my windshield as I passed. For those of you familiar with Jersey, you can appreciate what that was like because of the sheer number of trees lining the parkway. For those of you that are not familiar with Jersey, the full name of what we call the parkway is the Garden State Parkway. Garden State...that’s putting it mildly... Pine-tree-a-palloza, Oak-atopia, Maple-ville USA...yeah, we got trees,.lots of em'... And the salt was only successful in kicking up in my windshield and making vision completely impossible. As I go to clean it, the panic strikes me as I see that there is no fluid coming from the nozzles. Oh crud...Thankfully a rest stop with a gas station was up ahead. I pull in and buy a bottle of wiper fluid for five bucks. FIVE BUCKS???? You cant give that crap away any other time of the year..I buy it, open the hood, and to my dismay the reservoir is full...now I have a useless bottle of what must be designer wiper fluid, horrific road conditions, and non-working windshield cleaners. A garage attendant takes pity upon me ad brings out a bottle of hot water and tries to defrost the lines. This is where my bluetooth decides to go bananas and shuts down. While I run the engine in hopes of getting the frozen lines to melt, I try and connect the bluetooth to my phone...soon I was ready to start chipping the ice off the van with my phone and shove the ear piece in the bottle of designer fluid. This was not going well...and I needed to be 80 miles NORTH by 9am. Eventually I get some flow...on the passengers side...dang. My luck...I cant wait any longer and decide to McGyver it the rest of the way. I dump out my coffee, fill the cup with Eau de fluide and hop on the parkway. Every few minutes or so, I have to open the window, pour fluid on the window and set the wipers on. The traffic is moving at a dizzying 20 MPH as I pass signs flashing “45MPH strictly enforced”... no problem there..we can't hit 30...Eventually I have to stop as a rest stop to refill my cup-o-windshield-joe where by sheer divine intervention there is a Starbucks....Ahhhhh....I get the most ginormous cinnimon-mocha-choca-whoha-whachamacallit...I ask for an extra shot of espresso, and she tells me there is already two in it. I tilt my head sideways, give off a minute twitch, then I lean in veeeeery closely and start to whisper "I left a 6:30, for a 9am appointment in the Bronx, its already 10 am and I am STILL ON THE JERSEY TURNPIKE"...her eyes got bigger than the puddle stain on the back of my shearling jacket from the slush and black ice ridden parking lot, (when I reached up to lock the hood in place,to check the status of my fluid resiviore, I slipped and landed rear first in the parking space in front of the van (thankfully at that moment that space was unoccupied, and there were no witnesses to the decorative language I used either)…she leans back, eyes still glued on me, (in case I made any quick movements toword her, I guess) and shouts MAKE IT A TRIPLE...yup...triple, baby. We get back on the road and eventually make it to Montefiore at 11:30...Thankfully the doctor is an angel with an MD and he was willing to see us considering our brutally late circumstances. I was almost fairly certain the look of insanity on my face remained with me from Starbucks and all parties involved must have figured it was best to appease me and get me out of the building ASAP. Ky gets a complete hearing test, and it is then that I learn she is completely deaf in her rt. ear...the cause of the deafness is permanent nerve damage. Irreparable...my heart drops...BUT she has perfect hearing in the other ear and is compensating beautifully. Whether she will develop the same nerve degeneration in her left ear in unknown. Lets just keep our fingers and toes crossed that she dosen't. OK...Next....he asks questions about her medical history and I gloss over as much as possible...He looks from me to Ky over an over and it soon becomes very clear to him that he is in the presence of a miracle. We chat a bit and he asks if he can scope her right then and there...yup...scope away, doc. He numbs her schnoz, gets the camera up in there and right away we see where things are going wrong. There is a hole where one should not be. Next, we go further back to see her soft palate...She is asked to say words like Kit-Kat, to see how much the soft palate moves to block off the air from passing through her nose as she speaks... Nothin, nada, zilch..Completely hypotrophic. No muscle control. Grrrrr....but fixable. Both problems. We clean her up, sit down and he says he is more than willing to take the case on and fix her soft and hard palate. I tell him OK, Ill be back monday! LOL We set surgery for April and off I go to Schneiders. Before I even left the building he was on the phone with Dr. Vlachos and telling her what an amazing kid Kylie was...Like she did not already know THAT!!! We get to LIJ, have the Sweat Test done, go to clinic, have our appointment with Dr. V, have her labs drawn, and her hemoglobin is over 15...Totally awesome...She has completely kicked DBA's butt. We discuss the weight loss thing and Dr. Vlachos is upset because she feels like we are missing something...SOMETHING is stopping her from growing and gaining weight, above and beyond the whole short stature DBA thing. We are looking into Cystic Fibrosis and Celiac Disease. Results to both are pending. Then Peg O'D, our West Hempstead Family and Offical Kylie Fan Club picks her up for a long weekend visit. I toodle home and am back by 9pm, just in time for my CSI show I have been waiting all week to see. We order Chinese and I am asleep after two steamed dumplings, and before I can find out who the killer was, that was making all the miniature crime scenes..Grrrrrrrrrrr.....Friday comes and the kids are home, I schlep around all mornign in a post- Long Island drive from hell stupor. And around three pm we get a call from LIJ...Ellen, our beloved DBA nurse of all needs, calls and says Kylies labs came back wiht a little problem..How little I ask? Wel it seems that her blood sugar was 252..oops...we think back and discuss her meals that day a it becomes clear that this is a problem. Around 7 am she drank a half a cup of OJ and a quarter of a buttered plain bagle. That was it untill three pm. Other than water. We had no opportunity for anything beause we were so late for everythign. She did have two apple juice boxes but the nurse had already started the blood draw when I gave it to her....no way the juice would have matabolized that quick and hit her blood stream...Thel tell me to call her Endocrinologist and see what he wants to do. He says go to the ER ASAP, she has Diabetes...I start to feel sick. I call LIJ back and get everyones voice mail....Im shaking. Kylies in Long Island. I'm in Jersey. I get a hold of Ellen at Schneiders and the Docs all pow-wow for a few and decide its OK to wait till morning, get her from LI and get her to our local hospital. Dr. Vlachos at one point has me on the phone and says this may be the piece we are missing. It coud explain why she is not gaining and growing. Diabetes...OMG...
So, Saturday morning comes and I pick Kylie up from the halfway mark thanks to Lizzy bringing her down, and we head to the ER at Jersey Shore UMC. While waiting in the waiting room, a poor kid blows chunks all over the floor…E- gads! Get us outta here!!!!
A slew of labs, a little peeing in a cup, and some nice quiet nappy time and we are eventually cleared of all things diabetic and sent home…Major tragedy averted. I was a wreck the entire time since the phone call. Joe was calm, because to him is was an answer to the growth and weight issue. To him diabetes was doable. As for me, I was not handling it well. I cried all night, and all day off and on Saturday until I had answers. Diabetes is very prevalent in Joes family .VERY. We have had blood sugar issues with Kylie in the past from too low (14) to too high(600) so I suspect this is something that happens often and we just happened to catch it with a blood test at the right time.
As for now, today Kylie is happily in school and I am trying to overcome a wicked migrane. (gee, can’t imagine WHY????)
Charlie is telling me about the president he learned about in school….you know…they guy on the dollar bill??? Charlie calls him George Clooney….Uh oh..Too much E! television here in this house….
I hope Joe brings home detergent. Jordyn spent all Saturday night and Sunday puking on me. (well, for once Joe was the target first. HINT: never lie on the floor and tickle a kid complaining of a belly ache…especially when wearing a white hoodie sweatshirt)
We ran out of detergent yesterday and I had not finished decontaminating my bed linens, towels, clothes, pillows, and whatever she found her way to puke on.
I have to skedaddle, my eyes are ready to slip out of my head and go “splat” on my keyboard.
Love to all….(never a dull moment eh?)
Tuesday, February 13, 2007 12:05 AM CST
The Jersey Shore is famous for its summer festivities. We have Six Flags Great Adventure, Boardwalks galore, beaches as far as the eyes can see, Atlantic City, aquariums, and even an Ikea. The campgrounds are infinite, Pine Barrens and Jersey Devils, glacial lakes and the Applachian Trail. It's pretty awesome. But what does one do when winter strikes those litter strewn shores and toxic rivers? WEll, I'm not sure what others do, but we Monica go "BEAR HUNTIN'". Yes, I said bear huntin...We have a local State Park called Cattus Island. It's 500 acres of protected wetlands. There are nature trails, and Environmental Center and even a playground. Usually this is a favorite of ours in the summer, but this weekend we learned of joy it can provide during cold weather as well. Sunday afternoon, after lunch, we heated up a gallon of milk, mixed in a jug of chocolate syrup and packed it in a thermos. We bundled up little, and big bodies, and headed out. Initially this adventure did not start out as a bear hunting expidition. But thanks to some immensly deep sedges, and a mom with a twisted sence of humor, Charlie was quickly convinced that the woods were filled with marauding bears and starving lions. The red squares on the trees designating our trail soon became bloody bear paw prints left behind after a maniacal attack on the last unsuspecting family that thought going for a hike in the woods was a good idea. Rudly abandoned steaming piles of what to Joe and I believed must have been Mastiff turds became bear poop after a huge meal of human flesh. Broken branches were from attacking wildlife, pouncing on innocent hikers and dragging them off into the deep forest to snack on during prime time shows.
Joe and the big kids joined in the terrifying tales and soon Kylie on down were wide eyed and mezmerized. Ryan was the trail leader, and everyoen had huge walking sticks...we stopped for hot cocoa and took some pictures. And when we got back to the van dusk had set in. Charlie, who had previously been silent and alert to every twig snap was now rattling on and on about all the amazing things he saw while bear hunting. Ryan was planning out next adventure, Jordyn and Kasey wanted more hot cocoa, and Kylie was too frozen to even comment...Before we left the park we gave a sound off...8,7,6,5,4,3,2 and 1...We left with everything and everyone we brought and started to make up our own little cadence. "I dont know what I've been told, too many kids will make you old. I dont know but it's been said, 8 kids make you sick in the head. I don't know but this much is true, hang with us and you'll crack too..."
Next week, when we march thru the forest, the bears will hear us a comin'. Now if we can just convince Charlie that the bears did not follow us home an camp out in the woods next to our house, maybe he can get some sleep. But for now, Charlie still keeps checking over his shoulder....
On other fronts, we are headed to the city Thursday for some Kylie appointments. First we are due at Montifiore hospital in the Bronx to meet Dr. Parikh, the cleft palate doctor, at 9am. Then we head to Long Island for Sweat Test and an appointment with Dr. Vlachos. Our day is full, and of course we will be bringing some care packages to our transplant friends at Schneiders.
Now, being the unlucky woman I am, it is particularly fitting that the day I have planned to be traveling comes just in time for this seasons first Noreaster...As I look out the window by my desk, I see the snow passing by vertically. Oh joy...Not much is accumulating but its early yet. I'm not complaining as upstate New York has got over 140 inches but here in Joysee, if a flake falls we all scramble for tire chains, salt spreaders, bathtubs filled with water and storm cellars. The line at Dunkin Donuts is around the block because no one knows when they can get out to get their next Latte...The busses cant get out for the kids but all the moms are in their mini vans driving to mall for Starbucks. Never get between a middle aged mom and her caffine fix. Especially if she is stuck home with a gagle of kids on a snow day...{{shivers}} the mere thought is bone chilling.
So, happy bear huntin folks, enjoy the dandruff like snow that instills fear in all our Shore Point hearts, and if any of ya'll have a nice steaming latte or cappucino, think of me, smile and say this..Thank God I'm not Heather!!!
LOL
Love to all!
Cool Slideshows
Thursday, February 1, 2007 9:50 AM CST
*** PRAYER REQUEST****
Our desrest friends Paula and Victor and having a difficult time right now. Victors dad was rushed to the hospital this week very sick nad was diagnosed with cancer in his liver and lungs. It has spread very quickly and either tomorrow or monday they will perform a biopsy to find our what kind of cancer so thay can treat it. I'v never asked before but Victor is very important to Joe and I and we are going have an online prayer vigil for him Friday night at 7PM EST. You can IM me your prayers for him at "tenkids2dogs" on aol/aim or "dbakjm" on yahoo messenger. You can type up a prayer any time and e-mail it to me and I will read them out loud tomorrow night. And everythig I recieve I am saving and sending to Paula and Victor so they can share it with his dad, that he may know that he is being lifted up in prayers...thank you friends, as last moment as it is, I know you wont let Victors dad down...
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Today, Feb 1st, 2007 is my 10th wedding anniversary and I just can't let it pass without letting as many people as possible how much I love my husband...
Yesterday I wrote a lot. In fact for nearly four hours...Had I not been inturrupted by life with 8 kids it suerly would have taken much less time, but in this house, time passes as quickly as the kids let it...kinda like "as the crow flies"...but for me it's "as the kids allow".
I wrote about a bunch of stuff, but mostly about my relationship with my husband, Joe.The same guy that saved me from suffocation by dog butt, same guy that dropped a railroad tie on my foot and broke my toe, same guy that saw something in me that made him want to spend the rest of his life looking at my scary face in the morning. It is painfully obvious to me that he's not all that normal. Heres a guy that thinks I am the most gorgeous creature on the earth, here's a guy that actually WANTS more kids, here is a guy, that, completely against his private personality, stood by my side as I went public with the devastating story of our daughters obscure disease. Although he succeeds at whatever he tries, is well like by eveyone who knows him, keeps getting nominated as employee of the month-quarter-year, whatever, at the hospital he works at, he wants to comes home to ME. Truth is, I was not the most popular kid in the world. In fact I was the least popular kid. I was lower than the least popular kid.. I was so out of place, I was like a different species. A whole year younger than everyone else, but a whole lot smarter(not that my grades reflected that, I hated school), and just an emotional basketcase. I went to a private school that probably took 75 f my fathers salary to send us to. They worked hard to provide us with a wonderful education. And as a parent that struggles financially to raise my kids, I can absolutely appreciate their sacrifice today. ABSOLUTELY. But since 90 f the kids in my class were Uber-rich, and advancing socially and sexually at the speed of light, I was ...well...The subject of a lot of ridicule. A LOT...But the point here is, me..mega geek, dorky fat kid with glasses, Dungeons and Drangon instead of Rainbow Brite and Care Bears, somehow wound up with a hot, Marine, top of the class in EVERYTHING, lifeguard, diver, bodybuilding, sexy, sharpshooting, sprinter, type A, compassionate, baby loving, romantic, did I mention HOT and SEXY yet?, police officer, pizza making, animal loving, Bruce Springsteen fan, First Aid Captain, baby delivering, specimin preparing, autposy technician, phlebotomist, caretakeing, awesome cookie making, laundry and dish doing,hot, sexy stud like him. There must have been a rip in the time space continuim that he somehow fell into causing severe damage to his brain or something. But whatever the cause, I scored big time. I have known Joe since I was 18. I married him when I was 24. and In two years I will have known him for half my life. WOW..thats a lot of knowing someone...We were Scarecrow and Mrs. King, totally hot guy with completely average chick...I always siad "Girls like me don't get guys like that". With Joe, I felt like the winner of some Hot Guy PowerBall drawing. THe odds were soooo against me, but in the end,I got the golden ticket!! My husband does the laundry, my husband does the dishes, AFTER he gets up at 3am to go to work each day. He is the epitomy of romantic. Not a week goes by that there is not some trinket of love left on my pillow, from a favorite chocolate bar, to a card or a candle. A book by a favorite author, a comfy pair of funky colored micro fiber pants, a book of devotionals based of faith and inspiration. A talking Stuie doll that makes me laugh every time it goes off...
Someone asked me once the most romantic think my husband ever did...and it is somethign that sticks with me to this day...All my pre- teen, teen years I was fat. And tortured for it. By the time I met Joe I was celebrating my first pair of size 8 black Gap jeans. Dang, I almost shawdow-box framed them rather than wear them. Eventually it became very obvious to him that fat and me had major history, and he made it clear that skin and bones was not his idea of a woman. Voluptuous was his style, in fact, for his tastes I was a little on the skinny side. NO ONE EVER CALLED ME SKINNY IN MY LIFE!!!! Fast forward almost 5 years later and I am pregnant with TJ...and completely self conscious of my big belly... feeling the complete opposite of sexy and pretty bummed. It was Valentines Day and TJ was due in about a month. So I was pretty ginormous. That day he came home with a HUGE wrapped box.. I opened it and saw ther dreaded pink and black Victorias Secret box. I was like, "IS HE NUTS? Why would he rub it in by getting me slinky lingerie that I can't wear...'" Hesitantly I opened the box and inside was the most gorgeous, two piece white flannel jammies. Pants and a top, creamy ivory with silk lacy piping around the edges. I never flet sexier in my life...so loved, so considered...Thats my husband. Loving, considerate, thoughtful....He knows me better that I do. He knows what I am thinking as I'm thinkign of it. When I am harboring a thought, he knows it, and dosent relent untill I spill my heart and soul. And each time he makes it all better. And things he can't fix for me, he reminds me they probable don't matter.
He really ment it when he said "for better or for worse, for richer or for poorer, in sickness and in health, till death do us part."
The day I was told I had MS, I went home terrified to tell him. Fearing that he would be like, "Oh hell, what have I got myself stuck in now..." Instead he held me and told me it would all work out and no matter what he was by my side forever...And he proved that for months as my symptoms progressed. He carried my burdens, picked up my peices and carried this entire family on his shoulders. Eventually the diagnosis of MS was changed and to this day no one is quite sure what is is, most likely a combination of stress and a movement disorder called PKC. And to tell you the truth, having some weird twitch and intermittently numb body parts can't be all that unusual when you think about what every day consists of over here. But still, he remains strong for me. I had major surgery on November and that brought the burden of life down on him yet again. And now that my arthritis in my back and hip have gotten so bad, he takes on even more of my duties without an ounce of contempt. I can't wait for warm weather (my joints seem so much looser in milder weather) so I can get back on my game and try and make his life a little easier.
He joined me this year in teaching Sunday school, he has the 7th graders. He supports my efforts to make sure my emotional needs that he cant fill are met by encouraging me to develop friendships with other mothers with kids with DBA. He has welcomed my journaling and writing with open arms. And he supports my efforts with Grateful Giving. From staying home while I ventured to Schneiders for 6 weeks last year, to updating on CB himself. He finds new ways every day to show his love, and after 10 years, it still isint even close to getting old...And for me, his greatest example of his never ending love for me, was his participation in Camp Sunshine this summer. He truly embraced it and made my week wonderful no matter how much he wanted to be on a beach anywhere but there....He even sang kareoke for me with my friend Paula's, husband Victor. ("I'm to sexy" in case you are wondering what he sang, but they got back at us and Paula and I ended up singing "I Like Big Butts") And just this week he completely blew my mind when. without blinking or thinking twice agreed with my when I asked him if we could attend Camp Sunshing again this summer.
When I met my husband, I was young, lost, and trying to find my place in this world. I had made some bad choices, done some things I regret, and was feeling very bad about myself. He looked past all that. He gave me his unconditional love, affection and attention that I craved, but most of all he gave me a safe place where I could grow and blossom into the woman I am today. He helped my find comfort in my own skin and for the first time in my life I looked in the mirror and liked what I saw. I felt worthy, blessed but most of all loved. He had supported my persuit of finding my faith, and he really listened to me when I talked about my thoughts and feelings.
No marriage is perfect, we definatley have our moments where we disagree, have conflicts, can't compromise. We have days where we growl at each other as we pass in the hallway, but its not long before the kids are saying "ewwww...gross....they are kissing again" Our kids see us bicker...but they see us make up almost instantly. We never let an issus fester. We resolve is almost as fast as it came up. Only to his credit. He won't let it go, wont't go to bed mad, wont walk away with a chip on his shoulder...I choose to let it go, I want to gloss over things and act like they never hapened. But that helps no one. He is completely responsible for getting us to find out where we went wrong and how to avoid it in the future. He really works hard every day at making our marriage the best it can be. And for that and many many other reasons I love him. I love him dearly, infanitely, emphatically, passionatly and completely.
He is my superhero. My knight in shining armor who rode in on his white stallion, scooped up the princess in peril and brought her to his castle and made her his queen... I am truly living the fairy tale life.
Love, Heather
***Tuesday Jan 30, 2007*****
OK. For the sake of friends, family and faithful followers I will try my best to shake off the impending nausea, quivering and chills, not to mention numbness and frigid cold to update. What??? I have been sick sick sick…Noro-virus? Cytomogalovirus? Sinusitis? Take your pick. My bet is all three. Joe was terrific and stayed home and took care if it ALL while I was out of it. And was even good enough a sport to notice, that while I was delirious on the couch, the dogs were sitting on my head. He even got them off me, as this held the potential for suffocation. Good call Joey! This may take awhile to type since the gloves are a little difficult to type with. Yes…gloves. No, I am not outside, though I may as well be. The family room is the farthest from the furnace, and next to the un-insulated garage..No need for a walk-in-fridge here in the middle of Jan. I can just leave my groceries on the couch. This room tends to be a little unused in the colder months. And since my laptop is not yet back from HP Hope (kinda like Chicago Hope but for HP’s), I have resigned myself to use the ole’ “compusaurus rex” here. Whew, I took a break to warm up my hands. My tea had a light cover of ice crystals. DANG! The last few weeks have been a mess as far as virus, flus, and bad backs and hips are concerned. The flooring in the hallway is finished, as is the painting. But only a fifth of the boys carpet has been pulled up. I got hit by the Whammy mid-yank. Which saved Codys butt temporarily, as he was assigned staple puller as a punishment for getting a little lacksadasical with his school work. And please understand, this IS a true punishment. Like I told Codys teacher, the carpet installer was obviously an un-medicated OCD patient, because the sheer volume of staples was near maddenening. So staple puller will be pulling up so many staples he will want to pull out his hair! Mwahhahahahah…am I sick or what?
Kylie is fine and dandy. Coughing and junky despite the last 6 weeks of antibiotics. Still getting the headaches but tolerating them. In three weeks we get to meet Dr. Parikh at Montifiore in the Bronx, who will hopefully fix her palate. After that appointment we head up to New Hyde Park and Schneiders for a check up with Dr. Vlachos. I hope to have some of the studies like the 72 hour fecal fat study and Sweat Test done and some bloodwork that the GI docs requested to try and get some answers to the "eat like a pig and loose weight" thing shes got going. Other than that no news on the Kylie front.
Next week I get to have a fun procedure done called an SI injection. A Sacroiliac injection. Its done under light sedation using fluoroscopy for guidance...first they inject the die to visualize the joint, then they inject numbing med's and steroids (cortisone for me). After my hysterectomy I did not get the kind of pain relief I was hoping for. There was a lot if relief from the abdominal pain and the fact that I was not borderline needing a transfusion for the past 2 years non-stop. But it did clear up where the pain was generating from...My entire sacral and lumbar regions disks are either bulging or herniated and even the last vertebrae in my thoracic region is now bulging. But surprisingly the pain is actually radiating from my rt.hip/lower back.(My MRI showed an actual fracture to a vertebrae! An impact one! I was stunned. I am thinking it was from my days at The Home Depot. One day a pallet of HORSE MANURE fell on me!!!) So my back doc and my anesthesiologist are going to try the SI injection, since a course of epidurals gave no relief. I am trying anything I can to avoid surgery. And at this point I'm not even sure what would need to be done! If anything CAN be done! I'm just sick and tired of the pain...The pain is constant and usually tolerable but I constantly "throw" my back out doing nothing. Most recently, I bent over slightly to paint Jordies nails and I was in such pain for days it hurt to breathe!
While I was sick this week, everybody pulled together somewhat this week to help Joe make our chaos a little(and I mean little) less chaotic. I was teary eyed at the image of my big boy TJ reading to my little boy Charlie, Stellaluna. Now Stellaluna and TJ go waaaaay back. Before TJ was inundated with siblings he had me all to himself mostly. Joe worked 16 hours a day and Joe and Josh were in school all day. He really had just me until Cody started walking and the real chaos did not start until after Tyler Lee, when Kylie was born. We read, played music (Return to Pooh Corner was our constant fave) he loved his tubbies on our antique, porcelain two sided sink.. The deep end provided him hours of bubbles, water toys and a stool was my perch, next to him, singing, squirting, and laughing. We would get jammied up and curl up in my bed and read books like Winnie the Pooh’s 100 Acre Woods and House on Pooh Corner, Love You Forever, Good Night Moon, Corduroy, Stellaluna, Dazzle the Dinosaur and Rainbow Fish. And then there was Scuffy the Tug Boat…a very old Golden Book, that he was obsessed with. We had it in a collection book and years later I bought him one from an old book dealer online as a momento. To this day it sits on an shelf in his room surrounded by collectible Gozdilla figures, a 30 year old Winnie the Pooh (mine) and Lamby…a stuffed Lamb that was given to me while still pregnant with Tyler Lee that he claimed as his own. Lamby went everywhere…in 1999 we had a terrible house fire and lost everything, mostly from smoke damage…(99 was NOT a good year for us…) I walked thru the house after the Fire Dept left and scooped up a few things before the cleaning company had to come and throw it all out. (remember Kylie was only 9 months old, and actually JUST released from the hospital since birth , but for one brief stint home, she was on O2, on a vent, treached, and very fragile, EVERYTTHING had to be destroyed because of smoke and chemical contamination for her survival) I walked out of that house with only a handful of things things, my wedding dress, the homemade baby layettes for TJ, Co, Ty, and Ky my mom made, Codys Woody and Jessie dolls(another story entirely), those few books and Lamby and Pooh..Thats it…So, it was no surprise that I was a complete wreck when I walked past Charlies room to find my gentle giant, handing down Stellaluna to Stinky Dinky Boy. TJ told Charlie how special it was to him, he read Boo the story and gently tucked the book beneath his pillow, just as he did as a little boy. And I can tell you that at this very moment, Stellaluna is tucked beneath Charlies Bobby (Bob the Builder) pillow with his stinky dinky (blankie). It is read every night, if not by me then he harangs TJ into it. I always felt strongly about passing down keepsakes. I get that from my parents that held on to many special things from my childhood. But I always imagined it would be passed down to their kids…not realizing that it was actually going to be passed down to a younger sibling. I feel so good that my kids keep things that are important to them. Savoring the memories, holding dear to their hearts, specific moments in time. It really makes me see that we are making their lives something WORTH remembering and passing down. Even if the memorable item is not a traditional keepsake. My kids hang on to some nutty stuff.
So, to see my pre-teen, angst filled son, who now comes to me for ideas on what to get his girlfriend for Valentines day, steals my Clearsil, and swears the whole world is conspiring against him, be so emotional and compassionate to share his dearest book with his little brother and read it to him often (with different voices and inflection, mind you) brings me great joy…and gives me a little more room for tolerance with him. Yes, he grimaces when I kiss him in public, but he has no problem hugging and kissing his littlest brother openly and admits with reckless abandon that he is completely in love with our newest addition to the family, Sprout. He rolls his eyes when I sing in the grocery store, but is the first to give me snuggles and smushes in the kitchen when no one is looking!
I am surprised where this update went, but not in a bad way…Its not often I delve into the sweeter side of my T-I-double~G-RRRR…So, heres to my TJ…He may only be 10, Okay, 11 in March, but he really has taken on a role of a much older person. The family he was born into has made him mature far beyond his years in many ways. Having a sick little sister can really be hard on a kid. It certainly affected him the most..BY FAR…Having lots of siblings can be hard, again,affecting him the MOST. SO, three cheers for TJ! Hip Hip Horray! Hip Hip Horray! Hip Hip Horray!!
Tuesday, January 30, 2007 12:09 AM CST
OK. For the sake of friends, family and faithful followers I will try my best to shake off the impending nausea, quivering and chills, not to mention numbness and frigid cold to update. What??? I have been sick sick sick…Noro-virus? Cytomogalovirus? Sinusitis? Take your pick. My bet is all three. Joe was terrific and stayed home and took care if it ALL while I was out of it. And was even good enough a sport to notice, that while I was delirious on the couch, the dogs were sitting on my head. He even got them off me, as this held the potential for suffocation. Good call Joey! This may take awhile to type since the gloves are a little difficult to type with. Yes…gloves. No, I am not outside, though I may as well be. The family room is the farthest from the furnace, and next to the un-insulated garage..No need for a walk-in-fridge here in the middle of Jan. I can just leave my groceries on the couch. This room tends to be a little unused in the colder months. And since my laptop is not yet back from HP Hope (kinda like Chicago Hope but for HP’s), I have resigned myself to use the ole’ “compusaurus rex” here. Whew, I took a break to warm up my hands. My tea had a light cover of ice crystals. DANG! The last few weeks have been a mess as far as virus, flus, and bad backs and hips are concerned. The flooring in the hallway is finished, as is the painting. But only a fifth of the boys carpet has been pulled up. I got hit by the Whammy mid-yank. Which saved Codys butt temporarily, as he was assigned staple puller as a punishment for getting a little lacksadasical with his school work. And please understand, this IS a true punishment. Like I told Codys teacher, the carpet installer was obviously an un-medicated OCD patient, because the sheer volume of staples was near maddenening. So staple puller will be pulling up so many staples he will want to pull out his hair! Mwahhahahahah…am I sick or what?
Kylie is fine and dandy. Coughing and junky despite the last 6 weeks of antibiotics. Still getting the headaches but tolerating them. In three weeks we get to meet Dr. Parikh at Montifiore in the Bronx, who will hopefully fix her palate. After that appointment we head up to New Hyde Park and Schneiders for a check up with Dr. Vlachos. I hope to have some of the studies like the 72 hour fecal fat study and Sweat Test done and some bloodwork that the GI docs requested to try and get some answers to the "eat like a pig and loose weight" thing shes got going. Other than that no news on the Kylie front.
Next week I get to have a fun procedure done called an SI injection. A Sacroiliac injection. Its done under light sedation using fluoroscopy for guidance...first they inject the die to visualize the joint, then they inject numbing med's and steroids (cortisone for me). After my hysterectomy I did not get the kind of pain relief I was hoping for. There was a lot if relief from the abdominal pain and the fact that I was not borderline needing a transfusion for the past 2 years non-stop. But it did clear up where the pain was generating from...My entire sacral and lumbar regions disks are either bulging or herniated and even the last vertebrae in my thoracic region is now bulging. But surprisingly the pain is actually radiating from my rt.hip/lower back.(My MRI showed an actual fracture to a vertebrae! An impact one! I was stunned. I am thinking it was from my days at The Home Depot. One day a pallet of HORSE MANURE fell on me!!!) So my back doc and my anesthesiologist are going to try the SI injection, since a course of epidurals gave no relief. I am trying anything I can to avoid surgery. And at this point I'm not even sure what would need to be done! If anything CAN be done! I'm just sick and tired of the pain...The pain is constant and usually tolerable but I constantly "throw" my back out doing nothing. Most recently, I bent over slightly to paint Jordies nails and I was in such pain for days it hurt to breathe!
While I was sick this week, everybody pulled together somewhat this week to help Joe make our chaos a little(and I mean little) less chaotic. I was teary eyed at the image of my big boy TJ reading to my little boy Charlie, Stellaluna. Now Stellaluna and TJ go waaaaay back. Before TJ was inundated with siblings he had me all to himself mostly. Joe worked 16 hours a day and Joe and Josh were in school all day. He really had just me until Cody started walking and the real chaos did not start until after Tyler Lee, when Kylie was born. We read, played music (Return to Pooh Corner was our constant fave) he loved his tubbies on our antique, porcelain two sided sink.. The deep end provided him hours of bubbles, water toys and a stool was my perch, next to him, singing, squirting, and laughing. We would get jammied up and curl up in my bed and read books like Winnie the Pooh’s 100 Acre Woods and House on Pooh Corner, Love You Forever, Good Night Moon, Corduroy, Stellaluna, Dazzle the Dinosaur and Rainbow Fish. And then there was Scuffy the Tug Boat…a very old Golden Book, that he was obsessed with. We had it in a collection book and years later I bought him one from an old book dealer online as a momento. To this day it sits on an shelf in his room surrounded by collectible Gozdilla figures, a 30 year old Winnie the Pooh (mine) and Lamby…a stuffed Lamb that was given to me while still pregnant with Tyler Lee that he claimed as his own. Lamby went everywhere…in 1999 we had a terrible house fire and lost everything, mostly from smoke damage…(99 was NOT a good year for us…) I walked thru the house after the Fire Dept left and scooped up a few things before the cleaning company had to come and throw it all out. (remember Kylie was only 9 months old, and actually JUST released from the hospital since birth , but for one brief stint home, she was on O2, on a vent, treached, and very fragile, EVERYTTHING had to be destroyed because of smoke and chemical contamination for her survival) I walked out of that house with only a handful of things things, my wedding dress, the homemade baby layettes for TJ, Co, Ty, and Ky my mom made, Codys Woody and Jessie dolls(another story entirely), those few books and Lamby and Pooh..Thats it…So, it was no surprise that I was a complete wreck when I walked past Charlies room to find my gentle giant, handing down Stellaluna to Stinky Dinky Boy. TJ told Charlie how special it was to him, he read Boo the story and gently tucked the book beneath his pillow, just as he did as a little boy. And I can tell you that at this very moment, Stellaluna is tucked beneath Charlies Bobby (Bob the Builder) pillow with his stinky dinky (blankie). It is read every night, if not by me then he harangs TJ into it. I always felt strongly about passing down keepsakes. I get that from my parents that held on to many special things from my childhood. But I always imagined it would be passed down to their kids…not realizing that it was actually going to be passed down to a younger sibling. I feel so good that my kids keep things that are important to them. Savoring the memories, holding dear to their hearts, specific moments in time. It really makes me see that we are making their lives something WORTH remembering and passing down. Even if the memorable item is not a traditional keepsake. My kids hang on to some nutty stuff.
So, to see my pre-teen, angst filled son, who now comes to me for ideas on what to get his girlfriend for Valentines day, steals my Clearsil, and swears the whole world is conspiring against him, be so emotional and compassionate to share his dearest book with his little brother and read it to him often (with different voices and inflection, mind you) brings me great joy…and gives me a little more room for tolerance with him. Yes, he grimaces when I kiss him in public, but he has no problem hugging and kissing his littlest brother openly and admits with reckless abandon that he is completely in love with our newest addition to the family, Sprout. He rolls his eyes when I sing in the grocery store, but is the first to give me snuggles and smushes in the kitchen when no one is looking!
I am surprised where this update went, but not in a bad way…Its not often I delve into the sweeter side of my T-I-double~G-RRRR…So, heres to my TJ…He may only be 10, Okay, 11 in March, but he really has taken on a role of a much older person. The family he was born into has made him mature far beyond his years in many ways. Having a sick little sister can really be hard on a kid. It certainly affected him the most..BY FAR…Having lots of siblings can be hard, again,affecting him the MOST. SO, three cheers for TJ! Hip Hip Horray! Hip Hip Horray! Hip Hip Horray!!
I have another update in the works for Thursday, since I am still so nauseous, I haven’t been able to do much more than sit in this chair, type as much as my frozen fingers allow and pray I get to the bathroom in time!
Friday, January 19, 2007 10:53 AM CST
My sincerest apologies to you all! I know I am REALLY lacking in updates when my DAD reminds me its been awhile!
So, I logged on real quick during a tea break to tell you all I PROMISE to update this weekend. My laptop has been out of comission for over a month, and the kids PC stinks like the Jersey shore at low tide in August, but I will suffer the slowness in order to update properly tonight or tomorrow!
I have been so crazy busy! WE have been re-doing the entire up stairs. The carpets were so oogie it was spawning new life forms. So we are replacing it all with laminate flooring! I grew up as my Dads "helper" and then worked at the Home Depot for a long time, so I have learned a lot of home improvement stuff over the years. Joe goes to a local home improvement conglomerate and buys the left over/damaged laminate boxes from the end of each pallet for like 5-10 bucks a box. Then we frequently scout the "oops!" shelves for paint colors that we can use. We can get a gallon of good quality paint for $5 and a pint for like $2!~
Big Lots is my favorite place for great deals and I can get silk curtain panels for $5 each! SO Tyler Lee and Kylie's room, and Jordie and Kaseys room look like pages out of a magazine~! For dirt cheap!!!
OK, break over, back to the flooring in the upstairs hallway!
If I get the hallway done, Joe can paint it tonight (I cant paint for diddly squat!) and I can get to TJ and Codys room this weekend!
Love to all! Ill be back soon!
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