Charley's Angels Toy Drive

Hi everyone,

No worries Charley is doing great.  Happily bouncing around these days with her latest obsession the My Little Ponies.  Yes, a girl after my own heart.  If only I hadn't thrown out my ginormous My Little Pony ranch from the early 80's:(  Anyway she is doing well, this post is about our toy drive:)


I started the Charley's Angels Toy Drive a few years ago because I have never forgotten what it felt like to be in that PICU all those days.  I have never forgotten how lonely it felt, how uncertain it was.  You could literally see Charley's spirit being sucked out of her.  Her smiles a little less, her excitement to see new people a little waning.  It became not about what fun people were, but instead what were they going to do to her.  Doctors and nurses would come to our room to see her telling me they wanted to come see what they had been told was "the cutest happiest baby in the hospital".  I'm not making that up either they came from different departments just to get a smile from her and find out how she was.  By the time we left they could still get smiles and excitement but she had a sideways glance about her first.  I think we all suffered some Post Traumatic Stress, even Charley wasn't right at first when we got her home.  It is a very traumatic experience to learn your beautiful perfect child might die, and then see everything they go through. 

I remember entering our second week feeling like we were never going to go home again, and I know friends whose children have lived in the hospital, months at a time.  The beauty of kids (and I almost feel a need in this way for adults hospitalized) is that if kids have stuff to do to pass the time they handle it all so much better.  There were babies/children/teenagers who had no parents come visit them all day, some who never had a visitor at all and besides the nurses had nothing to look at or do to pass the time.  It was incredibly heartbreaking. 

One night in particular while Charley had her Cloud B Twilight Turtle projecting it's stars on the hospital ceiling, her leapfrog Violet dog playing her a lullaby and I was leaned over the edge of her metal crib stroking her head; it felt almost like we were home.  I was always hypersensitive though to the child in the next room, who I hadn't seen a single person visit or hold all day except for the nurse.  I asked the nurse when she came in if they had mobiles, or projecting turtles for the baby in the next room and was told there was a toy closet by the nurses station.  I went in search of something for that poor baby and there was one mobile but it wasn't working.  The baby went home the next day but it really upset me and I knew from that moment that collecting toys was going to be my first 'post-finding out my daughter had a rare and life threatening illness bucket list' item.  Since then I've added a lot to that list, and hope to continue giving back to that hospital built 'just for them' as the commercial so eloquently says;)   

I tell you these stories of my experiences because I already know that the people I choose and have chosen to surround myself with and therefore my family are givers.  You are works of art, like me, constantly adding to and being molded in different ways.  You are learners, you pay attention and truly know compassion.  This little cause of our's is still in it's infancy so to speak.  It's only been a few years but already it is growing.  The toy lot is much bigger than last year, and bigger than the year before that.  Charlotte eyes all of your goodies for her 'friends at the hospital' and it always floors me that being a toddler she does not cry or carry on to have the toys for herself.  It's like she just gets it and granted the doll house and toy phone were tough to get past she just asked me to put them on her own Christmas list for Santa. 

I hope you are proud of yourselves for whatever causes you take up.  Maybe you can't do this one, I know I can't do nearly as much as I would LOVE to.  The point is to have one, and if you don't I hope you'll get one, cough cough like our's ;)  It really brings so much cheer to the kids to have a toy to play with, a mobile to look at, to take a half hour out of their day filled of tests and pokes to work from the craft cart.  You are honestly making a difference in their experience and by helping them even a little you are also helping their parents.  I've grown a million times over from this experience with Charlotte.  I've gained an expansive (and sometimes detrimental) amount of personal, spiritual growth.  I hope that all of you will take time out of your days to give back in whatever way you can.  Not just over the holidays but everyday.  I know that I am in good company in my life. 

Thank you for all of the love, support, and counseling so many of you give me:)  You are amazing friends, family and acquaintances!! 

 

The stuffed animals of my life

I'm not sure where to begin, for the first time in a long time I helped put Charlotte to bed.  I tucked her in with her new big girl bedspread, in her new big girl bed, with her blanket, stuffed elephant, owl nightlight, her sister reading in her bunk above her.  We read an Eric Carle book about a spider who turns down all of her friends who want to play to work on her web all day just to catch one fly.  When her owl friend comes to play at night she is fast asleep after her long day of work.  I feel like that spider a lot nowadays, I feel like I spend a whole lot of time weaving webs between kids, school, and today I signed my papers, got my security clearance, badge and now am officially a PCT for a local hospital..  Each strand of my life is pulling from all ends and I never feel like I am giving anyone of them the detail they deserve.  Not Jason, not the kids, not my schoolwork, friends, parents, relatives, it just never seems enough to show my appreciation for the support system I have.  I've learned a lot about managing it all but I'm tired.  

I have strep throat. I start my new job next week.  I am only half way through my semester.  The semester that single handedly decides whether I get into the nursing program or wait to try again another time.  I have needed my warm bed, comfy blankets, cold washcloths, LOTS of tea and vernors, my favorite PJ's, and all of my grown up stuffed animals so to speak to get me through this week.  And it's only Wednesday.

Tomorrow I have to say goodbye to my biggest stuffed animal of all, Dr. L'ecuyer.  I've been so busy lately I haven't even had time to really process it, so I assumed I was doing okay.  Tonight as Charlotte was settling in and we talked about how we had to get up early and go say goodbye to Dr. L'ecuyer it hit me, this is real.  I have to be brave and not ball my eyes out when we leave knowing I now have to trust someone new with her care.  Tears immediately well.  My throat shrinks.  

Charlotte was so cute because she sort of confusedly asked "he has to take care of other sick kids?"  She said it as if she had no idea that in a completely other place there were other kids like her. And she didn't understand why he had to go there and not take care of her anymore.  Luckily she's three and get's over things quickly but she did say "what if I don't like the new doctor, and I don't want a jelly test?"  I assured her that we will like her new doctor and that mommy would make sure they would take good care of her.

All of that is true, I will always be her greatest advocate, I will always fight for her life unless there is no more fight to be had.  My rational mind says her cardiologist only sees her once every three months, I take care of her everyday.  I know her vitals better than anyone, I know when her color is off, I know when she is tired, I can tell she is going to have a fever a half day before it starts just by her heart rate.  The thing is I rely on him to know when she might need extra support, I rely on him to know when to list her, I rely on him to know which medications she needs, and if something new arises I rely on him to know what course to take.  He is my cardiomyopathy stuffed animal, my comfort with a stethoscope. 

 He has trusted me with her care, he allowed me to keep nursing instead of trying to pump feed her every meal when she absolutely refused bottles of any kind (and believe me we tried them all).  He trusted me to stick a tube down her throat every few days for a month, and mix up high calorie formula for her pump.  He didn't list her immediately as she continued to drop off the growth charts knowing that I wasn't producing enough to sustain her because I was so terrified and stressed out.  Low and behold when she started eating and drinking from a sippy cup she gained weight like crazy.  He is patient enough but not so that he endangers her and I have trusted him with every aspect of her care.  

I'm sure it will all be fine, but as you've all read over the last few years I have grabbed all kinds of branches for support.  My list of stuffed animal comfort is lengthy, I have held onto things so tight my hands hurt in an effort to find balance again.  Some of these comforts have proven healthy and some have really really excruciatingly been painful to let go of.  Unfortunately our good doctor is one that is going to leave a mark. 

I know I will grow to love her new doctor, at least I hope so, and Dr. L'ecuyer and I will probably keep in touch.  I hope Virginia knows how lucky they are to be gaining such a great guy as their chief of pediatric cardiology.  Charlotte got her sassy face on and said "well he needs to COME BACK."  She is so funny, she just never stops entertaining me;)  

I know that this is just another strand in my web, that just because her doctor is leaving does not mean that one broken strand will cause my whole web to fall apart.  While I have gained such an appreciation for living each moment to it's fullest, to never take fun, love, family and friends for granted I also have established a beautiful web that when broken feels scary again.  It throws off my sense of security.  Please say a prayer that whoever Charlotte's new doctor is to be that I gain the same trust and friendship in them that I had found in the good doctor Dr. L'ecuyer.  And that Charlotte grows to like them as much as she loves her "Dr. ecure";)  I will try and update tomorrow sometime after her appointment but it's a dawn to dusk day for me so it might be later in the week.

Today Charlotte had a cardiology visit with our great Dr..  With the older two kids out of school they had to endure an 8:30am departure time this morning.  This means nothing for Jake whose up at 6am anyway but Alaina's now preteen midnight bedtime makes an 8:00am wake up difficult.  As per usual my kids never cease to impress me (obviously despite the normal ups and downs;) and were incredibly well behaved and helpful in getting us all out the door.

Charlotte literally is an 'old pro' at these visits now.  I don't even have to direct her anymore she just listens to the Medical Assistant LaShay and does what's needed beautifully.  Her stats were all good, she's gained 5 lbs and I don't have her height on hand but I know she's a lot taller.  She was a little upset however that we did not have an EKG and kept saying "I need my EKG" but I assured her that she was having a 24 hour holter which is a portable EKG and the tears were avoided.  Goof!!

She did amazing for her ECHO and only whined a little here and there.  We were in the room without a TV too so that was a big feat, luckily I had angry birds to distract her a little although I don't even think she needs that anymore.  She just carried on a conversation with the tech Jodi and sang to herself. 

For the first time EVER her valve was leaking just enough that they were able to measure her pressures which is GREAT news because that means Dr. L'ecuyer got good pressures and said she can avoid her heart cath in November (unless something changes between now and then of course), WOOT WOOT.

Her shortening fraction was around 25% and a normal fraction is between 28%-42% so we're inching closer which is also a VERY GOOD thing!!  Her SF when she was a baby was in the single digits like 4%-7%.  As per usual the meds seem to be doing the trick!!

Her left ventricle is still very dilated and the muscle stretched out.  When she was a baby her heart size was I believe something like 7-8 standard deviations above normal and now it is around 4-5 deviations above normal.  Basically if we can keep it from dilating any further her body will sort of potentially grow into her heart size.  It doesn't mean the muscle will get stronger, or heal it just means it will be proportional to her size. 

The one minor thing brought up today that has not been an issue before is that she was experiencing some arrhythmia's during her echo.  They are not happening within a small time frame and Dr. L'ecuyer said her last holter showed a couple here and there but as of right now he's not concerned.  She was fitted with another 24 hour holter and I'll mail it back tomorrow and within a week should know if they found anything significant. 

All in all it was a POSITIVE report and because there are no significant changes or worries we stay the course.  I did ask about some of his patients that were a little older than Charlotte that he had mentioned when she was first diagnosed.  At the time (3 years ago) when he was explaining the variability of her disease he said he had several children who were medically managed with medication, growing and thriving 3 years or older who had also been diagnosed as babies.  Today he said he had one child who went down hill at age 5 and had to be transplanted.  Another who was still doing well on medication but sometimes required a hospitalization tune up, meaning a virus/flu causes the child to be hospitalized so the Dr.s hook them up to milrinione (their favorite IV heart drug of choice, lol) to give the heart a boost.   He also has a CM child who is 12 still doing like Charlotte is now.  I know he's lost at least one, although I'm not sure that was a cardiomyopathy child or a different heart problem. Basically he just reiterated what I already know and the reason why some of you might not understand my own emotional variability.  He said that with Charley's muscle being so weak, and her ventricle so stretched out that it is very unlikely that she will live to old age this way and never experience complications requiring further action to be taken.  It's just a wait, see, and try to stay on top of it prognosis. 

Cardiomyopathy has no set path, it has no mercy and even though you do everything 'right' so to speak anything can happen at anytime.  Ask any of my friends who've lost their children and they'll tell you they 'truly' believed that their children would always be with them. 

I'm sorry to my friend for making her cry in the McDonalds drive thru today after she listened to my voicemail (I was losing it when trying to tell her how it went;)  lol..  I still leave that office with good news and I shed tears of joy and glee that she is doing so well, and then I also shed them for the fear of not getting any guarantee on her future.  It's a frustrating life to look at your child and think they look so amazing but also always being on guard so as not to miss a small symptom that things are turning the opposite way.  I feel like we have climbed mountains and grown so much in acceptance of what we're facing but I am always worried, always on guard and I'm learning to just deal with that and take it one day at a time.  It has given me a new appreciation for life and living it to our fullest. 

Because we are so blessed to have such a prayerful community I would like to ask a favor.  There is a woman within my CCF family who has become very important to me.  She's been at it longer than I and offered a lot of strength and support to me in being a heart mom.  Her name is Dorie and her son Matt was listed today at Childrens in Boston for a heart transplant.  Matt has done okay managed with medication but like so many kids, as he's hit adolesence has been declining in his health and the doctors now feel it is his time to be listed.  I imagine this is a very scary time for them and Dorie has expressed her feelings about the heart strings being pulled because of course she wants her son to live and grow in health, but knowing that another family has to lose their own to save hers is a difficult thing to experience.  Please if you would add Matt to all of your lists that you have shared Charlotte with, it would mean a great deal to me..  Thank you.

So that's all for now, maybe I'll write later in the week about how I've been doing.  I feel like I've made a lot of headway in acceptance, and gaining my power back. 

Love to all of you:)
Courtney  

3 years ago today!! 

After counting Charlotte's breath earlier in the day April 24th of 2009, and riding in an ambulance down to Childrens hospital, completely clueless as to what our local ER feared and why they sent her down. Late that evening I watched her echo and w/out any medical training knew it was bad.  The cardiologist barely spoke english and we couldn't understand her that well, however I knew she was saying my baby might not make it.  I heard the words "there is no fix", "there are options".  I heard ICU, transplant, and within a few hours we were waiting to see if she would make it through the night w/out extra support.  Dr. Mastropietro was in complete surprise the next morning that she'd made it through the night on her own.  Day 1 of many lessons my daughter has taught me; what it really means to be strong.

No 11 days since then, or before then have challenged me so much.  Nothing before or since has changed me, or my life so much and I imagine Jason feels the same.  The word 'heart' was added to my 'mom' and from that day on I will always be a 'heart mom'.  I didn't really grasp it until another mother sort of welcomed me into the club when her daughter was one of Charlotte's roommates.  I had thought she was kind of rough on the doctors, but from then on realized I really was part of the club she was discussing. Assuming Charlotte survived that is.

  Everyday since those days in the ICU have been gifts.  All different kinds of gifts, some, really hard gifts, but also many more empowering ones.  I still cry a lot from fear of what our future holds, or the loss of a child who while they aren't mine, are just as meaningful to me.  My mind still wanders to places of absolute dread, and then back again to absolute belief that I will not lose my daughter, all in a matter of two seconds.  I have been fiercely angry, fiercely terrified, fiercely guilty, fiercely overwhelmed with emotion, and fiercely sorry for my inadequacies.  This is lonely, extremely lonely, and by far the most soul searching experience of my life in trying to learn how to cope with the massiveness of her heart inside her little body, loving her so and the thought of losing her still.   

Charlotte being here is a gift!!  I appreciate every giggle, every smile, and every bear hug I get.  She is the BEST HUGGER on the planet.  I appreciate her bossing us around and growling at me when she doesn't like what I'm telling her to do.  I love watching her harass her big brother, and him giggling and enticing her to wrestle with him.  I adore the relationship she and Alaina have, it almost makes me cry everyday when Alaina asks her for a big hug when she walks in from school.  Partly because their age difference gives them a sisterly advantage, and partly because I hate to think what happens to our family if she is no longer here.  She is a puzzle piece that can not be replaced.   

Its like every moment of our lives is a still shot and I stand here and revel in it all.  I am so grateful for my husband, the friends, and my family who put up with me, love me still even with all of my intensity.

 I cried several times today thinking of that initial time in the ICU. 

 Jacob makes his first communion this weekend and 3 years ago Alaina was making her's.  Jason and I were literally only home for the ceremony while my aunt Jeanie held Charlotte in the hospital the entire time we were gone.  My cousins took Alaina to the art show where her art was on display, then got her ready for First Communion, bought her shoes and socks.  They did her hair.  My aunt Barbara cleaned the house for the party that we were supposed to have and got her a cake.  Jeanie struggled to try and get Charlotte to eat and stop the doctors from putting in a feeding tube while we were gone.  Alaina looked up at me halfway through what was supposed to be her big day and said "Mom I know you can't stop crying".  I tried so hard to hold myself together but I was a mess.  I NEVER could've kept Alaina and Jake stable through that experience without my family.  My dad was literally Mr. Mom for the kids, and my own Mom slept in a chair at the hospital in the middle of the night to give me a couple of hours of sleep while alternating helping my Dad take care of things at our house.  It must've been so rough on everyone, and they never complained (well not to me at least).  I am so blessed that I never left Charlotte's side other than those few hours. 

So tonight I just sit here again in awe and silence of how far we've come.  It is a struggle, and as most of you know I am still learning how to cope and handle it all.  School has definitely helped, Zumba and the eliptical are saviors, and many special people who probably think I have lost my mind most of the time but still let me into their lives, you all mean the world to me.  Thank you to all of you for keeping me sane (well mostly;), for smacking me around when I get too negative, and for continuing to love us even when we might not always be on top of loving you back:) 

Happy 3rd year survival baby girl!!  You, your sister and brother are the light of Dad and I's lives:)  Keep praying our Charley girl stays on the straight path!!   

February 2, 2012

Hi everyone, above is a picture of Charlotte in the cardiology office with her new friend the "RRROOOAARRING" Tony the Tiger Flashlight.  She befriended him today along with three suckers, some Dora stickers, a 24 hour holter monitor, and a GIANT and adorable Great Dane whose name is escaping me at the moment.  All of these collected during her clinic visit with Dr. L'ecuyer because she was AMAZING during her echo!!!  She wanted to get upset a couple of times but choked down the tears, and concentrated on our angry birds game instead:)  I know I'm going to pay for that 15 minutes of holding my tablet above her head, my arms were burning, lol..

Her echo was unchanged which means her heart function didn't improve but it also didn't get any worse so we for sanity purposes take the status quo and check it off as a good appointment.  I suppose it should be viewed as a 'stellar' appointment and all of you can cheer it that way, I always hold a little more hope than I should, especially as we had practically doubled her carvedilol at her heart cath three months ago.  I guess I thought we'd see some miraculous improvement that only the catholic church could explain as a work of God but we'll take what we can get:)

She hadn't grown any since her last appointment which was also somewhat disturbing to me but Dr. L'ecuyer isn't concerned as of right now.  I love the things we say to make ourselves feel that everything is safe, she is after all a three year old with a diet of some of the most unhealthy foods ever developed and has been sick for a week and barely eating so that MUST be the reason.  Toddlers growth starts to slow down a little too so they aren't quite on the curve hiatus that they are when they are babies.  I don't need a scale to tell me she hasn't gained weight because I am so in tune to her body mass that I can feel it when she's lost an ounce, so nothing surprising there.

She was awesome today, that's all I have to say, about all of my kids.  They are awesome!!  Charlotte waltzed into that clinic today and played her games on the cool computers they have in the waiting room like she always does.  She colored the cow picture, she played some Luxor and putt putt golf.  I signed us in and took my seat in my usual chair until she needed my help and I knelt down next to the purple chair that she ALWAYS sits in while playing.  I said Hi to our friends at the desk, I smiled at the other parents in the waiting room, it's the same smile we always give to each other, strangers but strangers who smile one of nerves, hope, love, fear, and every other emotion that only you and them understand.  The smile that if you could just be yourself, in the life of a heart parent (or any other special needs child I imagine) you'd wear all of the time but you don't because no one would want to be around you ever, lol. 

She stood on the scale, got her height, blood pressure and collected her first sucker and Dora stickers with a smile on her face and quiet voice talking to our nurse.  She saw Dr. L'ecuyer in the hallway and without hesitation went right up to him, they chatted for a minute and then we waited to be moved to the echo room.  It's quiet and dark in there and she layed on the table, I held the tablet and she loved our tech's Curious George Scrub shirt.  I'm going to have to buy me one of those when I work there someday, the kids love it.  She was a champ with only a few whimpers throughout, mainly when they get to her neck, she hates that part.  When done the tech gave her the RRROOAARRINNG tony the tiger flashlight, two suckers and we went back to our room to wait for Dr. L'ecuyer. 

The funny part was a little boy who might have been a transplant patient also received a RRROOOAAARRIINNGG tony the tiger and to hear them both going off in the office made me laugh.  He was probably four and Charlotte checked him out immediately when she saw he had the same toy, insta friend to her.  So Dr. L'ecuyer came in we chatted about all of my questions, echo was unchanged, meds stay the same, yada yada, listen to Charlotte, feel her liver, bloodwork run down, heart cath run down, some nursing/doctor shop talk, fitted her with her holter monitor and we were outta there.  Although, back up,, he is leaving for a month which has me worried.  He said he'd be back, but please if you would add him to your prayer lists next to Charlotte.  After all he is a very big reason she is still here with us all, I hate to think of him struggling with something healthwise of his own, he's too important to us.  He deserves to be well, oh wait does ANYONE I know deserve what they deal with, NO they don't.  Just please pray for him. 

We met the Great Dane downstairs in the entrance of the hospital and Charlotte immediately fell in love.  I noticed when I got home from school and went to give her a kiss in bed that she now along with 25 Barbies is sharing her bed with four small stuffed dogs that had to be tucked in right next to her.  lol.  I can't wait to get a dog one of these days, I'd love a Great Dane.  A dog that's going to survive this house needs to be that BIG ;)  lol. 

So all in all it was a good day, it was a great day actually.  Charlotte and I walked to the elevator in the parking garage and once inside she said "it was a good day" (while jittering about, one of the topics discussed about her health today), to which I replied "it was a good day, you got 3 suckers, Dora stickers, a new Tiger flashlight, your holter 'necklace', and to pet and love on a Great Dane", we slapped high five as the elevator rose and she was all smiles.  I started to cry...



I continued to cry as we left the parking garage, so much so that I accidentally went up a level when I meant to go down.  I know it doesn't make sense, why would I be crying, but I cry every time I leave that hospital with her and don't have to stay.  I have been called 'emotional' more times in the last few months than I care to share.  It's true, I am emotional.  I can walk through life and put on a front most of the time but yes, this is emotional for me.  My life is emotional, every triumph my kids have whether it's Alaina getting an 'A' on a project, or rehearsing lines when she thinks I can't hear for her play.  Jacob's obsession right now with killing aliens on the xbox game Halo and the funny practical maturity of things he says lately as if we're all stupid.  When he shows me he's kicking butt on math tests, or doing his reading/homework at my kitchen table.  Alaina's interests and excitement for the books she reads.  Whatever it is, good or bad, I am emotional about it.  I miss them, I was like a mad crazy insane person the last month between this CNA program, my class at OCC, feeling guilty about not being there for ANYONE ELSE, and just continued, constant worry about Charlotte.  I can't control life, and I come from a family of control freaks, it's part of my genetic makeup and yet I can't control a damn thing and some of the time I can let go too completely.  It's like I'm always searching for balance (yes, LIBRA I AM )and with this new life raising a sick child it's tough to find balance..  At any moment someone I love or care about could be taken from me and well, all of you play a part in my life.  So yes, my rose colored glasses have sunk to the bottom of Lake Superior and I will be emotional about my life.  I will cry and love and tell everyone how I feel whether they want to hear it or not. 

Most days I feel like I can't breath, life is passing me by quicker and quicker all of the time.  Hardly ANY of the things I want to do get done around here (yes, my Christmas decorations are still up), and NONE of the things I want to get done for other people happen.  My kids are growing up all of the time and I can't stop them.  I don't know how long I will have them, especially Charlotte.  Life is full of heavy weight on our shoulders. 

Tonight I laid on the floor in the girls room when I got home from school. Jason must have just put them down to bed because when I went to kiss them they were up.  So I just laid on their floor because Charlotte likes to fall asleep that way, looking up at the clouds on the blue ceiling, with the tree I painted overhanging above me.  I looked at my beautiful, vibrant, brave, smart, loving, giving 10 year old in the face which I don't get to do enough of these days and for the first time in quite awhile I felt my breath.  

It was a good day.  I know I don't make knowing me easy on any of you, and I know I rarely give back what you give me.  Thank you though for sticking this out with us.  I love all of you, xoxo YAWN, GOODNIGHT.