Tuesday, December 18, 2012

It's the season. . . for many crazy things!!


As Sergio walks around the house with one of his 3 plastic Halloween pumpkins on his foot; the 3 boys around the computer learning a new game and yelling at each other for rhyming words with curse words, and Marriela sleeping on the couch, while the Santa Clause III is playing...I realize things are very much an eclectic collection of craziness here. 

Today we went to our second Christmas Party.  The kids were thrilled to be asked by Santa if they were good or bad.  Of course, they all answered "good".  :-)  They received some presents and off they went.  However, just  prior to this, exchange, Marriela told the young girls doing the face painting the pictures were "bad", Sergio had stiff armed a 1 year old who got to close to his stroller, Tray was playing against an elderly gentleman in ping pong and was winning. . . no, they were not necessarily on the good list.  But, they think so. 

We have an elf on the shelf.  It's not the skinny little one that comes with the nice book and all.  Ours is a stuffed, overweight, noseless elf given to Marriela by a well meaning teacher.  This elf has caused me so much grief.  It forgets to write letters, refuses to move around and won't eat the darn food Marriela puts out.  So I have to listen to the litany of complaints lodged against him in the course of the day by Marriela.  How did we get such a lazy elf!?  Really. . . why couldn't ours like to get into mischief like the rest of the elves in the free world.  No.  Ours just sits on the mantle and stares at me.  Thank goodness our night nurse annoys him enough to make him move from his perch to some simple placement in the house.  Last night I though maybe he'd like some music so put on Marriela's headphones and started her ipod.  He must have liked it, as he sat there all night listening to the tunes.  Then Marriela announced loudly a new fact; , apparently he's suppose to be writing letters.  I don't know what these letters should say, but they're not there when she wakes up and this causes all kinds of drama.  No matter where this elf visits. . . stockings, the Christmas Tree, the kitchen, etc.  Marriela yells at him to stay where he is suppose to be. . . and then yells at him when he moves!  This poor elf is probably looking for some good meds to get him through this Christmas season!! 

Ok. .  . it 's a week or two later and I'm back to finish this entry.

It's currently raining out.  Peter is with Joshua at a dermatology appointment.  Sergio is home because his poor nurse has been exposed to the flu via her daughter.  Christmas is now only 7 days away.  One week.

Since I initially started this post, a horrific crime happened in CT.  My God, those poor babies.  I have a 6 and 7  year old and just stood there looking at them thinking. . . they would be gone.  What a way to approach Christmas.

Since I started, Sergio's line has another weak spot and will have surgery on Friday to replace it.  Joshua's seizures have continued to increase so we added yet more medicine to his regime.  Cody has lost another tooth (and it took the toothfairy 3 days to remember the fact!).  We've gone Christmas shopping and started a new tradition. . . No electronics Monday.  No ipods, ipads, computers, playstations or x-boxes on Mondays from now on.  It was hard for them.  We had to concede a little for Marriela because the lack of music was NOT working for anyone!!  Tray and Cody have both started new adventures.  Tray is taking Hung Gar Kung Fu 2 nights a week and Cody started Jiu Jitsu 2 - 3 days a week.  Both love it.  Cody is still in Basketball as well on Saturdays. 

Life just keeps on going and then you get something like this that stops you in your tracks and makes you take a deep breath. . . .

"Dear my parents before I dead going heaven
I want to say is thank you for fighting for me and having me
To your daughter and I love being a sister and a cousin nieces and second
Cousin and a. Best friend a roommate a student And a boss to my workers I ever
hire to take care me too
All you guys been special to me I never been so luck to have a family that care
so much and never backed down and just keep on trying save special needs or kids
with out parent that didn't care about their's own kids some other kids I been
bless with families and friends were  care about me I am not just special I am
unique to be a part of friend of a family and a cousin and sister a niece to
other aunts and uncles and a boss and a granddaughter and mother to my kids and
wife to my husband too and grandmother to grand kids too

I just want to say is I love you guy I am happy to be your friend
I alway look down from heaven to see you living your  life just the way it is

Also like Laura Barber I wanted us to be friend again and Chris Huskie I will
also  have crush on you and think about you. You will alway be in my heart. I
will miss all of you guy alway be my heart I am sorry what happen between us. I
still will miss and love you guys

This is my letter to my parents friends cousins aunts uncles
And sibling too I am proud to be every thing you want me  to be a family too

Love, Your daughter.cousin,niece,granddaughter, mother wife and a friend Annette
Curkendall "
 

Is that not one of the most appreciative, amazing things you've ever read.  Well, it was for me.  More amazing to me is the fact that MY daughter wrote it.  I suspect that she heard somewhere along the line that the Mayan Calendar has predicted the end of the world she felt it was time to get her ducks in a row.  I have to call her today to let her know that the end of the world is not imminent.  But, I will cherish this letter and the thought she put behind it. 

I love my kids. 
Merry Christmas,

Renee

Sunday, November 18, 2012

Thanksgiving. . . with a slight revision.

We are approaching Thanksgiving and you can read the posts on FaceBook listing all the things different people are thankful for and the great things in their lives they are blessed with.  Some, are minor yet life fulfilling, such a love of a pet or a winning sports team.  Others are more profound and life altering, like cancer is still in remission, one more holiday with a family member.  No one item is more important than another, as all make us who we are and influence our lives, thus warrant acknowledgement.  In that light, I felt it was appropriate to shine some light on our blessings, please remember these are not trivial or to be taken lightly for our family, as they really are true blessings. . .

1. Our daughter, Annette, has proven beyond a doubt that she is happy and well living on her own.  My heart is both relieved and sad that we seem to have successfully fostered a sense of independence and one hell of a "I can do it!" attitude in our eldest.  She truly is an inspiration and could teach many an able-bodied young person out there a thing or two about how to persist, in the darkest of times and when everyone around you is saying "you can't"; she proves you most certainly "can". We give thanks for Annette's example in living life to it's fullest.

2.  Our youngest son, Sergio, is still with us.  This blessing can't be understated.  This exact time last year we brought our baby home on an unprecedented 3 IV anti-fungals to combat the evil thriving in his body despite the best efforts of modern medicine.  We were warned, this is not a cure, hell, it's not even a Band-Aid.  There was no hope from the medical field that we'd make it more than a few weeks before the yeast figured out a way to beat the meds.  But. . . that never happened.  Sergio has only been inpatient once in the entire past year.  He is thriving.  In fact, we have even started feeding him via his J-tube!!  With persistence and patience We hope to wean him down off of his TPN.  He is inquisitive, comedic and very much alive.   So we give enormous thanks for Sergio still being with us. 

3.  Our youngest, daughter, Marriela is growing and has had far more stable days than unstable.   Her days of needing a full restraint in school are fewer now than ever before.  We are profoundly grateful for the staff that love her and want her to succeed.  She is a challenge, but has made us better parents, more patient parents and more supportive parents than we would have ever been without her.  We are thankful for amazing teachers and the lessons she teaches us.  She has a heart full of love that gets muddied by her "swiss cheese" brain (as she refers to it) that makes it hard for her to remain in full control, but is devastated by her actions afterwards.  We are thankful that we were honored with task of being her parents.   We accept it with whole heartedly!
4.  Our eldest son, Joshua, has made it to 17 years old.  In his lifetime he has suffered from illnesses since his birth, then conquered a brain tumor he shouldn't have beat, has had thousands seizures and taken meds that have both helped and poisoned him.  He has undergone 4 major brain surgeries and still receives high doses of IV meds to help him not succumb to the awful effects of seizures.  However, he has no idea he has done all of this and so much more.  He's a happy, easygoing, sports loving, family dedicated child.  He's our forever 7 year old in an aging body.  And for this we are so very grateful.  If he had any inclination of his true situation, I don't know how he, nor we would be able to help him live life with joy.  But, it's effortless with his sweet innocence.  We worry for him, and he even makes that easy.  So with grateful hearts we embrace Joshua's cognitive deficits, as it is allowing him to live a happy, fulfilling life. 

5. One of our middle sons, Trayvon, I now just 3 months shy of his one year anniversary of his heart transplant.  So many blessings are wrapped into this event and this child.  He is creative, funny and forever sweet.  He has surpassed all expectations of those who provided him this life altering event.  Despite some emotional difficulties adjusting to his new "healthy" life, he has been an inspiration to so many.  We are profoundly honored to be his parents and hope one day he truly understands the amazingness of being who he is.  With are eternally grateful for modern medicine and the remarkable gift another family gave our family.   May they know how very blessed we are because of them.

6.  Our other middle son, Cody provides us with our daily infusion of craziness and normalcy.  Cody is thriving and has truly come into his own personality.  He is sensitive and kind to a fault.  He feels the pain of others and this can come with some heart wrenching life lessons.  But, he is also infectiously sweet, kind, and polite (or so his teachers tell me :-) ).  We are thankful to have the joy of raising a child with so much potential and desire to be great.   It's been very difficult to accept the fate of our other children in regards to their potential in life as independent adults.  .  . but not with Cody.  We are sitting back and watching how childhood should have looked like for all of them.  Thanks is not a strong enough word. 

 So we enter the new year with so much to be thankful for.  The world is a big scary place, but with our children around us, we are grounded and know our purpose.  I have no fear that we will survive many more Thanksgivings and will have our 6 amazing kids to thank for it. 

I felt as though I had left out some very important things that needed to be mentioned.  There are so many things to be thankful that sometimes the most obvious ones are the ones we miss.  So. . . .here is my list of those that I failed the first time to properly pay homage to.



1.  Our nurses.  Throughout our lives together, Peter and I have worked with nurses from all walks of life who come together for the common goal of helping our children, not just survive, but thrive.  Nettie had some amazing nurses in her lifetime when she was getting nursing.  Joshua was saved numerous times thanks to the ever observant nurses in the PICU.  And Sergio is cared for like a family member by his nurses.  We are thankful for them all.

2.  Our friends.  Both Peter and I have some crazy ass friends.  They make us laugh, they make us cry and all the emotions in between.  Peter and I can pick up the phone and feel like we only saw the friend the day before when, in reality, it's been years.  We are thankful for our new friends who understand where we have come from and never doubt where we are going. 

3.  Our family.  Without them we wouldn't even be here.  My dad is gone 3 years now.  Peter's mom, 6 years.  I miss them both every single day.  We are blessed to have family to call our own.  It's a blessing so many are not able to say that.  That's an awesome blessing. 

Well, I think that's it for now. 
Hugs to all and Happy Thanksgiving. 








 



 

 

 

Thursday, September 27, 2012

Reining in the Chaos. . .

Well, I've been giving new direction to my life.  I have found something new to entertain me.  This new thing has my mind working in all kinds of different ways and its exciting!  This new thing. . .are you ready. . .is PINTREST!!

Egads, is this thing addicting!  Oh my goodness, who knew you could use a dresser in 35 different ways, other than to hold clothes.  Or that Toilet Paper rolls could make amazing wall decorations!  Or that you could prepare 2 months of meals in one day!  What??!!  Oh the possibilities! Sooo, I sat down and thought, I need to make a list, my mind is spinning and I have to get it under control.  So, I thought, maybe, I should chronicle my projects, ideas, screw ups, failed attempts and hopefully successes with those who have nothing else better in life, than to read my rantings.  Now, I have to be careful, and preface this with the disclaimer that this will be an all inclusive, chaotic menagerie of  stuff.  Maybe some cooking, definitely some painting, possibly, some organization and even a slim chance of a parenting tip that - for whatever reason - magically worked one day.

So if you're up for some interesting and probably unsuccessful PINTRESTING activities. . . then come along.  If not, I truly do understand and will hold nothing against you.  :-)

The general theme of the blog will be about reducing chaos in a house of never ending chaos.  Sounds contradictory, I know.  Go figure.  But, in general, isn't that how life is.  One giant contradiction after another.  My acceptance of this chaos to this point was purely out of self-preservation.  If I tried TO hard to organize and structure our life, then I'd be one very disappointed and worn out lady.  Add to that, that many of the silly things my kids do, like get deathly ill and need fun little ambulance rides to the hospital, or the coming of the "24" hour flu (which will last a minimum of 10 days in our house, are out of my control.  Again, that is not my plan, but clearly my good friend upstairs has a sick sense of humor.  So, organizing in that scenerio, though still possible, had its limitations. . . until PINTREST.  Oh my, the things I have missed and how I could have shaved off 3 minutes in the morning, an hour at dinner, 7 hours over a course of a week - it's like getting a whole day back!  So, I'm determined to implement some of these amazing ideas into my crazy, chaotic life. . . I'm reining in the chaos!!

So come on over and visit me at  reininginthechaos.blogspot.com

Hugs,
Renee

Friday, September 21, 2012

"MOMMY!! Marriela is bleeding!!"

"MOMMY!!  Marriela is bleeding!!"

I run up the stairs to find that my daughter has found where I stash my razors and decided to shave.  Now, she says she was shaving her cheek, but somehow she managed to "shave" her LIP!  Really?  We apply pressure, some ice, and pour some rootbeer, soon all is well.

"Mommy!!  Sergio is in the fruit punch again."

Pull my son's arm out of the large container of red fruit punch.  I dry off a very stained, red arm.  Off to his room for yet another time out.  Good Lord this child is determined to find liquid!

"Mommy!!  I'm stuck!"

Arrive to the boy's room to find Cody with nothing but his legs sticking straight up, with his head wedged along the side of his bed.  Apparently a toy tried to escape the beating it received daily at the hands of my 7 year old son. . . and Cody went to retrieve the deserter. I pull up my son, with his toy in hand.

The needs are never ending.  The creativity of the needs is always shocking.  The number of needs is beyond comprehension.  Shoes are too loose, shoe laces are too tight.  Socks are too loose, socks are too tight.  Beds are wet, backs are itchy, dogs have fleas (not really but seems to be an ongoing issue for the kids), computers won't connect, X-box is off-line, medical bracelets are too loose (and then broken), kids are missing, kids are found, teeth need brushing, bodies need washing. . . oh my, I'm amazed I have any brain matter left!   

My daughter has made it her mission to convince me that I NEED another child.  I apparently owe her a sister.  She blames me for taking her precious Ethel, our foster daughter, to the hospital and letting her die.  And in fact, she's not entirely wrong. . .I did, in fact, take Ethel to the hospital where I was blessed to help my daughter-who-was-suppose-to-be, pass from this world full of pain and misery and move to one of peace and love.  I was her mom for the entire time she was with us, I fought for her like her mother, I loved her like her mother.  Marriela likewise, loved her like a sister and in the blink of an eye, made a connection that no one could have predicted.  But, I have reassured her that I am NOT having another child, nor am I looking to bring any more children into my home.   She is not convinced and thinks that if she gives me daily, and loud, reminders, then I will be swayed.  Not happening. Recently, I resorted to telling her that I would adopted ONLY if she can find a purple baby with pink polk-a-dots and orange eyes.  If, and only if, she can find me a baby that looks like that, then we'll adopt again. 

My daughter has also made it her mission to convince me that we NEED an RV.  For all those camping trips we don't and can't take, sure, we need an RV.  Again, not happening.

My other children are convinced we NEED a hot tub.  For Joshua who hates water, Marriela who is terrified of hot tubs (don't ask), Trayvon who can't use one and Cody who is all of 50 pounds and can't stand the warmth for more than a minute or two.  So we need one for ME to clean and keep free of algae.  If it's anything like the pool, we'll fail.

"Sergio is in the toilet again."  Oh that child!!  How does he know to watch the lock on the door and can wait it out patiently to grab a quick chance to splash in the icy coldness of filth in a toilet bowl.  UGH.

So we have lots of NEEDS here.  Some perceived by the children, some demanded by the children and some, well. . . sometimes there are just no words to address those crazy needs I find myself facing on a far to regular occasion.

Alas, once the needs come to an end, I'll be wishing for and looking to find kids who need me.  So, I'll enjoy removing the red stains from my son's arm, hiding the razors from my precocious daughter and try to keep the toys somewhat cleaned up so my son doesn't need to fall headfirst looking for them.  Hugs.

Wednesday, September 19, 2012

Thank you. . . for the gift of life.



We are coming up on 8 months since Trayvon's heart transplant.  That's amazing to me.  How time has flown.  I have sat down to write a letter of thanks to the donor's family many times.  I wasn't ready.  I still find it incredibly difficult to process the reality of what it meant for my son to live.  A fellow human being was being grieved over by their loved ones.  A young man had died and was giving my son his chance to live.  It's overwhelming simple and yet devastatingly complex.  So tonight I made my first attempt.  I'm sure I'll revamp it.  I'm sure I'll write several other "options".  But, tonight I sat down and faced the raw emotions and shared with this wonderful family what happened in those precious hours they were grieving and how the gift has changed a life.  

Dearest Family,

Where to start?  I guess I’ll start with, Thank you.  It’s so trivial and small, but it carries such a powerful message.  Thank YOU. 

The gift of your loved one’s heart has saved the life of my son, Trayvon.  He had been waiting for over 2 years.  The last 6 months, he was dependent on oxygen and strong IV medications.  He spent many weeks in the Pediatric ICU for irregular heart rates and the need to be “shocked” back into rhythm.  We didn’t see him as sick.  He didn’t see himself as sick.  We had to be persuaded that now was the time. . . but then we waited and no call came. 

I had decided to take only a few of our six children to Church on 2/12/12.  As we were walking in I reminded Trayvon that he had a dental appointment in the morning and that it would probably be his last one for a while, since we were hoping his call would come soon.  He responded that if he was lucky, his call would come today so he wouldn’t have to go.  Tray hates the dentist.  J   While sitting and listening to the sermon, I thought I should check my phone in my coat pocket.  I was worried that if it vibrated in my pocket, I would miss “the call”.  As I pulled it out to be sure I hadn’t missed a call, the phone vibrated and the word, “blocked” was on my screen.  Transplant warned me, the call would say “blocked”.  Tray got his wish, no dentist appointment.  By 1:30 am my baby boy had flown 2 hours, taken a mad ambulance ride from NJ to NYC, had a whirlwind of an admission to the ICU and brought to the operating room.  At 5:30 am, the doctors said the operation was over.  As I was rejoicing in the gift of life, you were grieving in the devastation of loss.  I was overwhelmed and cried for a very long time.  I knew that emotions would flow.  I knew what Tray’s chance at life would mean for another human being.  But, when it hit and the finality of it all. . .I was overwhelmed. 

Tray arrived an hour later, extremely fragile and precariously unstable.  But, his oxygen saturations were 100%.  We hadn’t seen that number in years.  His heart was so strong it was shaking his whole body with each beat.  In fact, once he was stable and the breathing tube was removed, he had to be reassured that his heart was very much working perfectly.  He was scared at how hard it beat, he had not felt his own heart beat in over 10 years, due to severe heart failure.  The only time he would feel it, was when it was in a very dangerous arrhythmia.  What a gift!

Today, Tray goes to middle school.  He takes his 13 medicines without any complaint.  He runs, he plays.  He turns 14 in a couple of months.  His skin is a beautiful healthy brown now instead of a dusky gray.  He used to have severe and painful varicose veins from his feet to his thighs due to extremely poor blood flow.  They are all gone now, and he has no more leg pain and cramps to awake him in the night.  He has a “girlfriend” who, like he, had a heart transplant and like him, is also adopted.  What a match made in Heaven. 

The gift of a new heart is beyond Trayvon’s capacity to really understand at this time.  We were warned that he may not even really “get it” for a while and then one day. . . he will and it will weigh heavy on his heart and mind.  But, I want you to know I get it.  I understand the heartache and pain that went into that decision.  I have tried to picture who was the young man that gave my little man life.  I just can’t.  We aren’t allowed any demographics.  All we know is our donor was male and close to our hospital.  Was he husband, a father, or maybe a college student.  What food did he like, what sports did he like?  Was he artistic, or musical or athletic?  Whatever he was, he is Trayvon’s angel of life, nothing can top that ever.  He was a miracle at birth and a miracle at death.  I can only hope that one day I have the opportunity to return the favor to someone else. 

If you wish to contact us.  Please, do not hesitate.  We would be honored to know you more.  If you chose not to, we understand.  We would love to send you a picture so you can see your gift in action. 

So, the only really appropriate words that can do any justice at all to such selfless act are, thank you. 

With all of my love, and deepest sympathy and thanks,

Renee, mother of Trayvon

Sunday, August 12, 2012

The House of Courage. . .


I woke up at 6:15 to the sounds of my daughter stomping around, looking for her “music” (the i-pad).  She is always out of sorts when she awakes.  I slipped downstairs and made a pot of coffee, grabbed a blanket and took her out to the front porch swing.  We sat there, without music, listening to the rooster crow down the hill and cows mooing in the distance.  Marriela sat there calmly for over 45 minutes, a first, a memory I will always have.
We were at the House of Courage by Champions For Life, for a week vacation.  We have not been on vacation as a family for over 6 years (and that was a Make-A-Wish trip) and we were only a family of 6, now, we’re a family of 8. 
To be honest, I was very scared to pack everyone up and go off, away from home for an extended period of time.  So much packing!!  IV supplies, monitors, medications, supplies, clothes for 8 people, fishing poles, frog nets, first aid kits, back-up meds and IV supplies, baby swing, pack-n-play, 2 dogs, a dog cage and their supplies,  the list goes on and on.  2 completely packed vans later, with just enough room for the passengers, we were off. 
The House is amazing.  A log cabin in its finest.  A magnificent view, a breeze the never stopped and a calmness you just can’t explain.  There was no WiFi, but the wonderful X-Box supplied by Champions for Life, and the large screen tv, was more than enough electronics to entertain the boys.  We were well prepared for Marriela’s need for music, but even that was taken care of, with a big stereo at the foot of her bed.  She was in heaven.  The fridge and freezer were filled to the top with food, the cupboards all stocked.  A plate full of amazing cookies on the counter.  And a delicious dinner delivered almost every night.  It truly was perfect. 
We unpacked the vans.  Set up Sergio’s corner of the living room, where he would be joined by his nurses for the night shift.  Clothes put away, baby gates up.  The breeze was amazing and the kids were truly happy.  Then we explored.  Opened up the garage and found the golf cart.  Again, Marriela was beyond ecstatic!!  It was the happiest we’ve seen her in a very long time.  Peter took turns taking them out and seeing the wonderful fishing pond at the end of the road, the trails and the fields of corn and soy beans.  Later we packed up the car and drove down with the makings for s’mores and started a fire in the large fire pit.  The kids enjoyed themselves soooo much.  The act of “camping” is a complete impossibility for our family for many reasons, some medical, some behavioral, and some physical.  So, for us to be sitting around a campfire, fishing off a dock, eating s’mores and enjoying the outdoors, was really more than I could have dreamed of. 
We headed back to the house and settled in, after Marriela happily passed out on the couch, to watch a family movie, which were also provided, as well as the snacks!!  Justing sitting and watching a movie in the peace of the country, with the breeze blowing over us, cuddling under blankets. . .was awesome.  Everyone slept wonderfully in their beds. 
The rest of the week was more of the same.  We discovered several things this week that took us pleasantly by surprise:


  1. Cody is truly a boy of nature.  He didn’t wear shoes almost the entire time we were there.  He happily caught frogs with his bare hands and was happy to wander in the reeds by the pond without any fear of anything.  He grabbed fish with his hands, and learned to cast a fishing pole.  My dad would have been profoundly proud of my baby boy.
  2. Marriela is so much calmer in the country.  A golf cart is as good as any medication we’ve ever tried, at keeping her happy.  She is NOT a fan of anything to do with fishing.  She was very anxious about the “bait” we kept in the fridge and had to eventually conceal the containers so she didn’t know we were keeping worms next to her OJ.  Marriela conquered her fear of boats, as we went on a wonderful Pontoon boat with the boys and our nephew.  She was scared, she cried, she asked to go back. . . she also laughed, thought the boys getting sprayed was awesome, laughed when daddy made the boat turn and happily got on and off the boat with just a hand hold.  Amazing progress for someone who is scared to even walk past a boat sitting on a front lawn. 
  3. Tray was an excellent weapon maker with the help of several rolls of medical tape.  He took sticks and rocks and turned them into very nice little arrows and other interesting items.  He loved catching frogs, but terrified at the prospect of touching them!!  He did eventually get up the nerve to touch a worm with a single finger, but he was happy to look at them from afar.  He was a good shot with the BB gun and hit the target more than he missed. 
  4. Joshua has far less seizures in the country.   Probably related to the number of electronic devices, but could be just the calmness of the environment.  He only had 3 the entire time we were there.  The night of our return, he had to have rescue meds to stop a bad run.  Joshua and I had amazing quality time sitting at the kitchen table putting together puzzle after puzzle. 
  5. Sergio was exactly the same.  LOL  He was determined to get into any water he could.  That included, the toilets, kitchen sink, large fishing pond, etc.  But if you set him up with a little bucket of water, he was happy.  Sergio LOVED the porch swing and actually took a 2 hour nap one day on the swing! 
  6. Annette joined us for a couple of days.  She also enjoyed it very much.  In time they will be building a ramp in the garage so she will be able to get in and out easier.  But we had a great time at the Champions For Life fitness center.  She walked a balance beam, bounced on the trampoline, and enjoyed taking pictures of the kids. 
  7.  Peter, Joshua and Cody all have bad allergies to the country!!  The sneezing was almost comical.  Thank goodness for Claritin!! 

Overall, I couldn’t have asked for a better vacation.  The kids were happy, outside, getting fresh air, eating good food, and enjoying life without the need for electronics.  We made memories, overcame fears, learned new skills, and enjoyed the peace and relaxation a vacation is suppose to provide. 

Thank you to Champions for Life and the House of Courage.  We are honored you thought of us and can’t wait to enjoy the “cabin” again someday. 



 

Thursday, July 19, 2012

"It ain't about how fast I get there". . .


Marriela.  Anyone who knows her, knows she's high intensity.  She's high energy.  She's highly distractable.  She's profoundly talkative.  She's highly unpredictable.   She's Marriela.  She's NOT quiet, nor is she one to take the phrase "just a minute" lying down.  Her minute is a nano-second.  Her birthday is a lifetime away no matter how close we're getting.  She thinks she'll be 30 in just a few months, and wakes up daily announcing that she wants to be 30 now.  Why 30 you ask? 

Well, at 30 Marriela will be having/adopting her baby.  She fluctuates almost hourly whether she will have more than one, if it will be a be a girl, or a boy, if it will be adopted or born out of her tummy (you know that may hurt she states) and whether they will be Chinese or not.  In addition to having children, she will be getting married to a "brown" man who she is claiming will have to change his name to "James" like on the movie Look Who's Talking.  She will be acquiring several vehicles including, but not limited to, Lisa, our night nurse - her black Jeep will be for Marriela's husband.  She is getting our neighbor's white Jeep for herself.  She will be getting our red van because it has the video set up for her babies.  We spend a lot of time collecting things she is "saving" for her baby when she's 30.  Some days I can't wait for her to be 30!  It's exhausting all this planning.

Marriela is also a huge fan of the microphone.  We spend many hours looking at different types of microphones on Google.  Oh, and I must give props to Google and the images option, it has saved me many, many headaches!!! She wants to sing on the stage at the Fairgrounds and just LOVED her time on the stage at her school talent show.  Though I have seen her sing this song many times. . . seeing her sing with her heart and soul was truly overwhelming for me.

The Climb Please click here to see her performance.

Marriela is truly a challenge to parent.  It is highly rewarding, and truly exhausting.  We have known since she was 3 we would be dealing with mental health issues.  She was born to a crack addicted mom who was diagnosed with bipolar AND schizophrenia.  We had prayed that the 2 were drug induced more than genetic, but were also willing to take on the challenge should it present itself.  It did, and early.  She has been medicated since she was 3 1/2 for things from ADHD, to mood disorder, to bipolar.  She is developmentally delayed.  She is autistic like.  She has severe anxieties.  She is a combination package and we'll probably never have a single defining disorder... that's ok.  We make as many informed decisions as we can in regards to medication.  We conceded last year that we needed to become much more aggressive in her medications as she was just very unhappy and struggling most of the time severe agitation and anxiety.     Lithium is working for her.  Not perfect, by a long shot, but it's so much better than the 3 hour tantrums and the pervasive anger and frustrations.  She would never smile or laugh.  Now, she is easily humored, though we spend a great deal of time "stomping" out fires all day long.  She is a hot head, but she can be redirected now and that's a huge improvement. 

video

She is afraid of bathrooms, water, pink dog life jackets, furry Christmas stocking and many many more.  Whenever I am admitted with one of the other children, I have to send a picture of the bathroom for her too see.  She assess it and then determines whether it's "too scary" to visit or not.  She will NOT enter the basement for fear of the Fuzzy Top Christmas Stockings.  That actually works in my favor (we tend to hide things down there we don't want the kids to see, like presents and such LOL). 

In the whole scheme of things, Marriela is by far our most time consuming child.  She is also the most rewarding in regards to small successes.  When she has a good day, EVERYONE notices.  She is also the one that says some of the funniest things and her take on life and day to day events is always highly unique and humorous.

It's all about the Climb. 



Saturday, July 14, 2012

A Word to Prepare. . .




This post is not about the kids directly, but it's most certainly about them indirectly.  I am not a dooms day type of person and actually strongly dislike when Peter jokes about the world ending in 2012.  I didn't go through the various hells that I have with my kids to have it all come to an end this year. . . plan and simple.


However, on that note, there are a few things everyone needs to consider.  We are in very unstable times.  Natural Disasters are much more common.  The weather is highly unpredictable and food shortages are here.  Soooo, with all of that amazingly wonderful news (none of which you were not aware of).  There are some things I would suggest everyone do to prepare for a family emergency.

The most important is to know how to do some basic survival things.  No, I don't mean pick up a cross bow or learn how to skin a squirrel.  EWWWW!!  I mean, things like know how to make water safe to drink Water purification.  My home town of Glens Falls, NY has been on a boil water alert for over 4 days now due to e.coli.  If this alert was during a power outage as well, then boiling water for many people would not be realistic, therefore all the bottled water would be gone from the store shelves.  If you knew just a couple of things, you would be able to take any water and transform it into safe usable water for you and your pets or better yet, you'd already have a supply to call upon in a situation like this. 

Another basic aspect of safety is to prepare a good  Disaster Kit.   I mean, a serious one for YOUR family's health needs.  We have kids with central lines, my kit has all the stuff I need to care for those lines for 3 days.  What if we had to go to a hotel due to a natural disaster... I don't have time to grab all of that crap and odds are good, I'd forget a key item.  This would be an epic failure for my IV dependent child.  But, a first aid kit also has extra meds for anyone taking meds, a list of all the families medical issues, their basic history and where their records are stored.  We have also made photo copies of SS cards, insurance papers, marriage license and birth certificates.  One of the major obstacles for children of Hurrican Katrina was the re-entry of school in their new cities without any documentation.

 And finally, food.  Again, I'm not suggesting you learn how to hunt your own food or become a master gardener.  I'm talking about adding a few canned goods each shopping trip.  (food preparedness)  You can store them in a tote, under a bed, in a closet.  Foods your kids will eat and fill them up.  Foods easy to heat with a fire but in a pinch can be eaten cold.  Good things are spaghettios, fruits, applesauce, veggies, baked beans, soups and powdered milk.  They're not great to eat forever, but can certainly be sufficient should you have to go for several days in a severe winter storm without access to a store or any power.  I also have some tuna, canned chicken breast and a couple of small jars of mayo.  This way if I have to open one to make some tuna, we'll just have to throw it out if there is no way to refrigerate it.   If your child is on a formula, then be sure you set aside some as well.  In West Virgina the State had to step in and help people find food pantries and replace food stamps when they had to endure a week long power outage in 100+ degree temps.  Not only did they have severe food issues, but they were struggling to get to and from places due to many cars failing in the unrelenting heat.

Ok, that's all I'm going to say for now.  :-)  I know it wasn't my normal kind of post, but I worry about those with kids.  Especially those with kids and special health care needs.  They are the ones that suffer the worst first.   We actually do a bit more planning here.  Maybe too many Zombie movies or Survivalist boards, but these are the bare basics.  Learning how to prepare a bit more is actually fun and the kids get a kick out of it.  LOL  I'll be attending a "canning" class next month to learn  how to can food to last for years.  To me, this sounds super fun.  Anyone want to join me, just let me know.

Happy Preparing!!


Wednesday, July 4, 2012

She Did It. . . We Did It.

"Call in your family." Those were the words of the doctor as my daughter laid in the bed in a room we had stayed in many times before.  She was septic again, but this time, she was blue and unresponsive.  We had agreed on a DNR making it unlikely that she was going to make it through the night.  The only "family" I had to call at the time, was Peter.  1 hour later, I was joining her in the ICU watching her eat crunchy cheese doodles (the ONLY food she ate for the first 9 years of her life) and laughing at Barney.  I immediately revoked the DNR, never to sign another one for her.  I figured, if she could get that much better in one hour, then what would I be doing if I denied her that hour to get better!!  It wasn't my place to decide when her time to go was. . . .

18 years later, I have finished moving her into her first "apartment".  She is sharing a house with another disabled woman.  She is nervous, but happy.  I am nervous, and  happy but very sad too.  It will grow on me, just need to let the reality of it all sink in.  She is gone and out from under my wing. 

This little girl, was the apple of the eye from the day she entered my classroom.  Once, when she was inpatient at Harlem Hospital (which, by the way, was a TERRIBLE hospital), Peter and I went to visit.  He knew she meant a lot to me, but when we left. . . "NeeeeNeeee" (her attempt at Renee) was all we could hear down the corridor.  It was heartbreaking and truly tore at my soul.  She was my daughter from that day forth.  I went and sat with her each admission.  The group home never even knew, no one was ever there.  One day, her feeding pump was gone.  She was tube fed, 24 hours a day, so why wasn't she being fed?  The adult floor was short pumps so they took hers.  15 minutes later, the adult floor was short a pump again, but Nettie was getting her feeds like she was suppose too.  Another time, I was there when they were putting in another central line.  I found her, unsupervised, in a stretcher in a long dark hallway awaiting surgery.  No one was around.  What if she had fallen, what if she had gotten sick, I was beyond livid, but as soon as they found out that I was of no relation, I was escorted out.  I called myself "mom" from that day forth.  



We unloaded all of her belongs of 22 years.  All the things she held dear along with all of the new and wonderful stuff we bought together Saturday at Target.  Her bed was made, the desk was painted and looked awesome, her stuff was put away and I spent 4 ridiculously long hours building her new dresser (OMG that was NOT fun!).  But, she was in her new place and smiling from ear to ear.  I couldn't help but smile too, even though I just wanted to turn and cry.


Nettie became our daughter by a laundry list of coincidences.   The biggest of which was the mistake made by the grouphome that signed a form allowing her to attend the school I was teaching at.  I was warned, she wouldn't survive another 3 months.  Fall and winter were her worst times and that she was far to fragile to survive yet another pneumonia.  So I placed her in a small chair in the corner of the room and we waited for her to die.  By Christmas break, when she hadn't missed a single day of school yet. . . I realized, I needed to actually try and teach this child.  So teach we did.  She started talking, sitting up without assistance, and clearly we favored each other.  I helped her get her first wheelchair where she learned she could push the wheels and learned what independence meant.  Who knew how far that concept would go!!

So, here we are.  We now have 5 children living at home and one living out in the world (7 minutes away).  What a concept for us to acclimate to. But, Annette has continued to elevate our expectations of her beyond what we ever thought she could do.  From learning to finally eat at 9 years old, toilet training at 11, changing her name on her own to "Nettie" at 12, to walking, to doing Zumba, to going to proms and to finally moving out.  She has continued to inspire Peter and I to never underestimate the abilities of any of our children. . . I miss her already.  But, she did it. . . we did it too.   

Saturday, June 16, 2012

Deal or No Deal. . .

My son is a game show junkie.  He has it bad.  He plays them on the computer, the ipad, and watches the GSN any chance he gets.  He will recruit me or Peter if we wander to close while he's on the computer. Then we're commited to playing a rousing game of Jeopardy, Deal or No Deal or Family Feud.  He thinks Steve Harvy is hilarious.  So do I as a matter of fact.  Unfortunately, there is a cruel irony.  The shows, especially Family Feud, result in seizures.  We don't know why. . . maybe the blinking lights, maybe the rapidly turning words, maybe too much thinking.  So we end up playing real life Deal or No Deal.  "Joshua you can't watch the Family Feud for the next week to let your seizures settle down."  "Buuuuuuuuttttttt just one show?  I promise, even if I lose, I'll only watch one show."  Now, I should mention, there is no real winning going on here, and he rarely can answer a single question, so how the "winning" comes into play confounds me.  However, the negotiations begin and he then says, "Deal or No Deal."  The humor is not lost on anyone in the house who knows him.  Despite the risk, we typically cave.  He seizes without the shows at times so he might as well be happy when they come, right??

After a week long stay in the hospital to monitor and record his seizures, we learned some valuable information.  The subclinical seizures (those that are recorded on EEG but don't transpire into visible seizures) are coming hundreds of times a day.  His poor brain is under attack even when we can't see it.  Initially, those seizures were all being recorded from the right side of his brain, where we had already put him under the knife for more than 16 hours total, just a year ago,  to remove massive chunks of his frontal and temporal lobes.  The seizures were coming from an area directly behind where the cutting had stopped.  Very frustrating.  Wednesday he had a typical "visible" seizure, I pushed the little button.  Then he stopped.  He never stops at one.  Something was not right with that seizure, but the doctor was thrilled and announced to Joshua "You had a perfect seizure.  It matches the subclinical ones perfectly from the same spot on the right side of his brain."  Then came Thursday.  Joshua performed beautifully, with seizures coming one right after another.  It was awful.  But, God was showing the way.  As he always seems to do when we need him the most.  As hard as it was to watch him seize, and as hard as it was to stop them, even after 8mg of IV ativan, it gave us the info that was missing.

Joshua is seizing from both sides of his brain.  The worse seizures, the ones we need to go away forever, are on the left.  Without removing more brain from both sides, we will not succeed in suppressing his seizures.  Deal or No Deal.  The doctor was crushed.  But, he wasn't willing to concede defeat.  We are.  It's a No Deal.

Joshua has survived a brain tumor, a 15 hour surgery to remove most of the tumor.  Lived in the hospital for 7 months undergoing grueling chemotherapy followed by a stem cell transplant.  Endured 31 rounds of high dose radiation to his 3 year old brain.  Withstood infection after infection due to a failed immune system as a result of the chemotherapy and had to start IVIG infusions.  At 9 years old, his seizures became our enemy of all enemies and they came, unrelenting, untreatable.  We began the IVIG infusions again in a desperate attempt to give him more than 20 minutes of seizure free time.  It worked, on all the types except the one that will eventually kill him.  The drop seizures that cause him to drop straight backwards into anything near him.  The ones that have resulted large holes in his head and the need for stitches.  The ones that require him to wear the stigmatizing, ugly helmet.  The ones that force us to never let him walk alone or go to the bathroom independently, ever.  The ones that if we don't intervene with heavy duty rescue meds, he will go into a coma.  We cured him of a brain tumor, but have so damaged his brain. . . But, at the time, it was a Deal or No Deal situation.  Would we have changed anything if we knew he was going to become severely developmentally challenged, have terrible seizures, become severely hearing impaired, go into puberty at only 4 years old, fight terrible infections due to a lousy immune system and he'd have another 16 hour brain surgery to try and stop the seizures only to fail monumentally? 

Yes.  We would have.  We wish we had more options, but this is still the treatment of choice for kids with this type of tumor.  Medicine is infinitely more advanced than it was 15 years ago, and yet it's woefully inadequate as well.

So, we sit, we play, we hold him as he seizes and laugh when Joshua presents a Deal or No Deal situation to us.  He has presented them to us his whole life and isn't even aware of it.  But, he's happy and that's all that matters to us. 

Saturday, June 2, 2012

12:54 AM thoughts. . .

12:54, something wakes me.  Probably Cody's nightly migration to our bed but I can't see him, so I'm not sure.  The house is so quiet.
Flashback 10 hours earlier in the day. . . I was just getting home from the hospital with Sergio who had just had day surgery to replace his G/J tube and a new central line.  That was a fiasco, as usual, and I was working out how to manage a new PICC line instead of a permanent central line, as well as 2 lumens instead of his single.  How one hospital can mess up things for the same child over and over is beyond me.  But, we were home.  Sergio has been running a fever for over 24 hours.  Saw the doctor after his surgery and had labs drawn.  He has an ear infection. . . something normal, yeah Sergio!  He was very hot just an hour after getting home.
Flashback 6 hours earlier. . . Marriela is exceptionally happy and energetic, despite the fact she has received her night meds an hour earlier, with no sign of slowing down.  Rest of kids are in bed, Marriela is bouncing happily on the couch watching a show we've never seen before (she found it on Netflix).
Flashback 4 hours ealirer. . . .Marriela is still very much awake, but now, not happy at all.  Very agitated, can't decide between a movie or her music, can't make her blankets work the way she wants, can't make her brain stop hurting.  Sergio's temp is now 103.4.  Praying meds will help.
Flashback 3 hours ealier . . . Marriela and I are laying down together in her bed trying hard to get her to settle down.  She is having a very hard night.  10:30pm, 4 1/2 hours after she received enough meds to get 4 adults to sleep for 24 or more hours, she is sleeping.  She remains asleep so I return to bed.  Sergio's temp is moving down.  Prayers worked.
Flashback 2 hours earlier. . .  My back and elbows are hurting a lot.  No choice but to take Motrin and a Unisom.
12:54, all is quiet on the Curkgang front.
It's overwhelming sometimes to realize that there are 6 "little" people in the house that rely so heavily upon you. 6 people that, for various reasons like age, illness, developmental challenges, mental health, will be dependent upon you for the rest of YOUR life.  What will happen to them when I'm not there.  Who will love these kids as much as Peter and I?  Who will work for 4 1/2 hours to help Marriela fall asleep, and help her work out her emotions several times a day and love her for who she is?  Who will let Joshua go to the bathroom 20+ times a day and answer his 1,000+ questions a day and hold him as he seizes and will be sure his needs are met as he grows up and wants to one day move out?  Who will be sure Annette's staff is always in place and the 3 pounds of paperwork a week are done, and make sure she is happy and healthy and getting out of life all that she deserves?  Who will be there to care for and love Sergio for whoever he is, and continue to demand more out of him than people think he can do, and not give up on him just because. . .it's hard?  Who will be there to help Tray manage his post-transplant care and handle all the potential issues that will eventually come down the pike, including, but not limited to, the fact that the average transplanted heart only lasts about 10 years?  Who will be there to encourage him to live life to the fullest, including, finding a career he loves, a wife, and maybe even kids!  And finally, who will be there to help Cody make sense of it all.  One day he will look around and it will hit him, that he isn't in a family like any other he has known.  How can we foster a continued relationship with his siblings if we're not here?   Who will work/fight with the doctors, the schools, the therapists, and every person or agency that works with our kids, to be sure My KID'S needs are cared for, not those of the service providers.  It scares Peter and I to think about it, so it's easier to not.  But recently, we've been hit with several deaths of people around our age.  When did people our age start dying?  I would love to do a will, but who would we leave the kids to?  No one family member could handle all of the children, yet, I can't imagine separating them at all.
I did a post on a Rabbit that's For Sale. . . For the Price of Love.  Many people have read the post, but no takers yet on my poor sweet rabbit.  Here she is, in my living room still.  How am I to find competent, loving, caring and dedicated people to care for my amazing children, if I can't even find someone to take a sweet, trouble free rabbit.
I hate waking at 12:54am.  To many hard thoughts come into my head and I have no answers to provide.
6:15 am, Marriela is awake and yelling about something.  I tell her she has to come to bed with me for a bit.  She does so, but not happily.  Within moments she is asleep.  As I rest between Cody and Marriela and listen to them breath, I know that I have the best job in the world.
Please pray that Peter and I live for a very, very, very long time. 

Wednesday, May 9, 2012

Chaos Reigns. . .

My brain is tired lately.  Every Monday at 3:00am I wake up Tray and we get in a car and drive to NYC for his clinic appointments.  We stay there for 4 hours and then get back in the car and drive back home, getting back around 4:00pm.  A 13 hour day and still need to make dinner and do homework and get kids to bed.

Yesterday, Peter took Sergio and Joshua to the hospital to get them started on their IVIG infusions.  He arrived at 8:15 am.  Joshua was up and running by 9:30 but Sergio's had yet to arrive and his infusion is 4 - 6 hours long.  I stayed home briefly to take Trayvon his meds at school.  He was cleared to start again.  Due to the number of medications and the frequency of changes, it is easier to take him his meds each day than to try and have the nurse do it.  So after giving him the meds, Marriela and I set off for her psychiatry appointment.

The psychiatrist is always very calm and relaxed with Marriela, but clearly doesn't know what or how to deal with her either.  Marriela is a unique and wonderful child who does not make things easy for anyone including herself.  Within 10 minutes of arriving for what is suppose to be a 60 minute visit, she is stating loudly and clearly, "I'm ready to go. Why does she talk so much? (referencing her doctor) You need new toys, these are old. (referencing the toy selection - and not entirely inaccurate either), Why do you make me come here, it's boring. (again, not entirely inaccurate).  Let's go Mom, why do you keep talking?  I have to go to the bathroom (though she went only 1 minute before entering the office)."  At the 40 minute mark, scripts were done and we had an appointment made for next month, withOUT Marriela.  Marriela one, Doctor, none.  LOL  

We then walk together in the rain over to the main building to switch with Peter so I can stay with the boys.  She is no happier at this clinic than the other.  Peter takes Marriela back to school where she had a great day.  I begin a rousing game of Uno with Joshua and a volunteer.  Sergio's IVIG finally arrives at 10:30.  11:30, Sergio grabs his head and screams out and then begins shaking hard as his temperature begins to climb rapidly.  He is having a bad reaction to the IVIG.  While holding Sergio and praying that his tylenol begins to help his head and the doctors are called, Joshua says "My chest hurts."  More nurses, more meds and we stop both IVIG infusions as we administer medications to counter the reactions.  They are getting different brands, so it isn't a brand related issue, it's a Curkendall related issue.  It's just a day in my life.  An hour later, Sergio is burning up, but sleeping.  Joshua is restarted and with some extra Tylenol and benadryl on board, resting comfortably in the recliner.  Both have their infusions slowed way down and what was suppose to be a 5 hour day is now extended to a 9 hour day.

But at the end of the day, we're all back under one roof.  I awake today, dress quickly, help Marriela dress and prepare some meds in preparation to leave the house by 7:00 am for a PET scan.  This was the first time I was not allowed to stay with my child for a procedure or test.  Joshua was unfazed by it, I was riddled with anxiety.  He did great and came through the door sporting two new water bottles and asking to stop for something to eat.

Tomorrow is the only day I don't have to go to a doctor's appointment.  Friday, Sergio sees the TPN team to discuss his labs and, I'm hoping, to reduce his time on the TPN to only 16 hours (he is currently on 18 hours a day).

Chaos is just a natural part of our lives.  If it were to suddenly stop, I can honestly say, I would fall apart I think.  The unknown is what makes each day interesting. . . but more importantly, never lets me take things for granted. 

Saturday, April 21, 2012

Times are Changing. . . an older update that I forgot to post. LOL

Well, Peter and Tray are wrapping up the finally days of his initial transplant stay in NYC.  They had a blast at the Museum of Natural History yesterday.  Today, maybe ChinaTown.  Maybe.  Tray is trying to soak up all the play time with his buddies he can.  Once he returns home, he'll be lonely and he knows it.  Can't go to school.  Can't participate in most camps (until the heart camp at the end of summer) and his friends will all be busy with one or the other.  He's happy, healthy and full of energy, with no where to expend it.  He's going to need to learn how to live life without the confines of medical restrictions other than not being in crowds. Times are changing for Tray.

Peter and I drove past a school and they had posted Kindergarten Registration days and times. . . for the first time in 17 years, we don't have anyone waiting to go to kindergarten.  We were both saddened by that.  A big change that had snuck up on us when we weren't looking.

Nettie is ready, or so she thinks, to move out.  How different life will be with her not in the house.  She has been with us for 18 years.  18 years of watching, helping, teaching, letting her fall, and scooping her back up.  She defied the doctors, she defied us, she defied all practical modern medical wisdom.  She is alive and well, and despite our reservations about her preparedness, she is looking to move out into the big world.  Times are changing for Nettie.

Joshua continues to seize.  He has been doing it for so long now, it doesn't faze him.  It does us.  We've tried all we know and have researched so many options and nothing has been successful.  He continues to seize.  Yet, he laughs every day, talks about what he wants to do when "he grows up" and who he'll be like.  It both heals and hurts to hear him talk about the future.  I don't know what it holds for him, but he will continue to get older, thus the day he needs to move out will also come.  Next year he will be in the main high school building in 10th grade.  Yes, he should be a senior.  But, he is oblivious to this fact and that's just fine with us!  He will be with new kids, new teacher's, new 1:1 aides.  We will be making major medication changes in the near future.  We pray they are for the good and not bad.  We will revisit the possibility of another major brain surgery.  Only time will tell.  Times are changing for Joshua and here's hoping it's all for the good.

Marriela is the antithesis of change.  She despises it, and balks loudly when it occurs.  She likes her routine and even that is not routine enough sometimes.  She is going to 5th grade next year.  She has been given nothing but the most dedicated of staff at her school to get her through the 4th grade, without having to move to a different program, thus another school.  Next year will be her last year at this school.  The last year she'll be able to walk the halls to do her learning, the last year she'll be able to be escorted, lovingly, down the hallway by 3 teachers to the special "area" where she falls asleep under a weighted blanket in a bean bag.  The last year, she'll go to the playground and play tag with typical peers.  I worry the very most about Marriela.  This school sees her for who she is and can be, not what she says and does.  She apologizes sincerely, but can't stop herself from lashing out when frustrated.  She truly believes all that children say, for good and bad.  Resulting in many sad moments as she misinterprets a comment as something mean and many angry moments when she feels slighted by someone, who has no idea they have done anything at all.  When we say good by to her teachers this year, I feel that things will never be the same or as good for Marriela again.  It just isn't possible to hope for that much to continue.  Times are changing for Marriela and she's not going to like it!

Cody is going to second grade.  My goodness, second grade.  He is going to be fine.  Cody doesn't see change as a problem and deals with it by just rolling with the punches.  He is a friend to all in his class.  He is a good brother to all in our family (though he and Marriela are doing a lot of head butting lately!).  He is a lovable and happy child whom is loved by all of his teachers.  He makes us immensely proud.  Change is coming for Cody, but he could care less.

Sergio. . . where to start.  Sergio has made many changes recently and more are to come.  This month, we'll be restarting some feeds in his tummy.  He hasn't had any food in his stomach in over 2 years.  In 2 weeks, Sergio will be 6 years old.  SIX years old!!  To see him, you'd know why this is so hard to believe.  To know what he's been through, you'd know why this is so hard to believe.  Most certainly a milestone, many did NOT think he would make and I'm beyond thrilled that even I have been proven wrong. He scared me more times than I can count . . . and I can count pretty high, just ask Cody.  Sergio is in a beautiful state of routine right now and we'll be rocking that boat with the feeds.  But, he's managed all that has been thrown at him and more, so I have great hopes this will be same with the change.  Next year, he's repeating kindergarten.  He will not care, nor even notice.  Change is coming for Sergio, here's praying he handles it well. 

Peter and I will be looking at what is next for us, our family and the major transition back into the work force.  It's hard to commit to a job when you have a child on a heart transplant list, another undergoing major brain surgery, another one living in and out of hospitals for more than a year and another who can not go to any sort of childcare facility.  So, with much of that behind us, Peter and I are exploring our options.  Maybe returning to school for me.  Peter may continue to his work from home, with a much more aggressive course of action, or maybe he'll revisit moving to a company.  So many things to consider, so much change.  Not a great fan of change.  I really have a hard time, though do fine once the change has occurred.  I am actually far more stressed "talking" about it, than the actual act of change.  Does that make sense??  But, in the end, we all have to roll with the changes and we're finally in a place to face them head on. 

Sunday, April 15, 2012

Crazy Little Thing Called Life. . .

Joshua and Marriela. 
6:00 I get a phone call, it's Peter.  Joshua has had 7 seizures, should we give his Ativan.  8 seizures.  Yes, give 2cc of Ativan.  9 seizures.  Slips in the med between seizures.  I sit helplessly by on the phone as Peter counts off the seizures.  Another one.  Another one.  Another one.  Should I give more he asks.  Yes, give another 1cc.  Another seizure.  Peter and I finally  figure out how to do FaceTime on our phones, so I get to sit helplessly by and "see" my baby seizing in the chair now.  Seizure number 17.  18.  Should we give one more dose.  Yes, 1 more cc.  The last dose allowed before having to call 911.  In all he has more than 20 seizures before the meds finally do what they're suppose to do. 

Tray is only one of several kids in our house dealing with stuff.  In fact, at this point, Tray is the healthiest among those with health issues. 

Life at out house is unusual, a bit unorthodox and never uninteresting.  It can be profoundly frustrating like last night watching a child seize and know there is nothing you can do to prevent it from happening again in the future.  It can be downright comical as you listen to Marriela's stories of "when I'm 30" and she owns all the cars owned by anyone that's ever visited, she's had twins. . . no wait, it think it's Chinese twins now, and she will put up a pink swing for her "real child".  It can be sad, as you leave yet again for another stay, at another hospital, for who knows how long.  But, for the most part, it's just as normal as yours with a little smattering of crazy added.  

Just 2 months ago.
Today, looking over the river.
Tray is now over 2 months out from his transplant.  It's truly hard to believe that we got the call over 2 months ago.  Today we walked for almost 2 hours straight.  His legs are sore, but other than that, he did fantastic.  He is now off to play with his friends here at the RMH.  He will start a blood pressure medicine once we get home tomorrow because his big, new heart, beats too hard for his little body.  He'll grow into possibly, or maybe he'll just need a little support.  Otherwise, he is doing fantastic.  But, we don't take this for granted at all, as the child who was transplanted only 11 days after Trayvon, is suffering from all sorts of complications.  He gets 3, 10 hour infusions, weekly.  He is rejecting his heart.  We know this is, and will always be, a possibility for Trayvon.  We are truly blessed he is doing so amazing.


Just one of many days in the PICU.
We await word from neurology on how to help control Joshua's unrelenting seizure disorder.  A PET scan has been ordered, but insurance doesn't like it and wants more justification.  I can't say I blame them, they paid for a huge surgery as well as a month long hospital stay to no avail.  What makes them think a very expensive test will show them anything more.  I can't assure them it will.  I don't have an answer and, at this point, neither do his doctors.  I don't know what else to do for him.  We need to get him off some of his meds, but even that, takes an admission because he'll seize a lot and need IV rescue meds.  So, we await their decision and the doctors to write more letters to justify a test, that no one can say will help at all.  But, to not do it, leaves open the unanswered question, what if there IS something we can do. 

So we wake up each day and smile and love our children and live this crazy little thing called life, one day at a time.