The Hail Mary's. . .

We've all seen them.  The dramatic end of the game play that makes it or breaks it for the team.  A desperate attempt to make the impossible possible and pull away a winner rather than a loser.

Well, we've been doing that for 20 years now with our kids.  Throwing up those Hail  Mary's and then praying.  Praying we land the basket, hit the infield or make the net.  Tomorrow is another Hail Mary.

Truth be told, I'm positive there is a God.  You know why, because the majority of our Hail Mary's have worked!  We've been faced with two impossible choices and after making one, praying it was the right one.  Whether it was leaving a DNR in place for Nettie or choosing to revoke it and push her through another life crushing infection.  Or choosing between a life taking cancer or a life taking treatment for Joshua.  Or putting our newly adopted son, Trayvon through another open heart surgery only to know transplant was not possible if it failed at that time.  And even the impossible decisions of quality now v. quality later in life.  We've had to decide whether or not to use medications in our daughter that cause neurological issues in people the longer they are on them.  Doing so would give her the chance to see life in a more stable and rage free manner but may result in life changing complications in her future.  Not doing so meant holding my daughter daily as she raged for two or more hours.  What kind of life is that.  What kind of choices are these??  Shitty vs. shittier.  That's what they are, plan and simple.  But you must make a choice and so chose we did.

Today we had to chose again.  We chose to wait for a single blood culture tomorrow morning.  The result, positive or negative, comes with risks and concerns for either outcome.  We, as a team, decided a positive means Sergio will need a new line.  That means removing this one and leaving him without one for 3 days and then praying hard we can put a new one in.  A negative means we get to go home.  But, knowing that when we turn off the antibiotics, we may be facing another life threatening infection like the one we just went through.  Both choices are crappy choices.

I know there's a God, because he's held me up as I've stood an listened to the doom and gloom of doctors for one child after another.  I know my sweet daughter that was to be is smiling down from Heaven, happy and whole.  I know God has my back and though bad things happen, I also know he's not making them happen.  He's pulling us through the shortcomings of this life.  He loves Sergio and doesn't want him to suffer but that's the world we live in, the answers just aren't here yet.  So he'll hold me up as we make choices to give my precious boy both quality and quantity and wait for the "answers" to come.

Nettie has proven that we've made some good choices.  I signed two DNR's (Do Not Resuscitate) orders for my baby girl.  Each time they were to be activated, I look at her and just knew it wasn't the right time.  She'd give us the signal she's ready to go, it wasn't my call to make.  The same for Joshua.  Despite the grim statistics and the side effects of the meds, and the life long disabilities that may occur or the chance he may need to battle another cancer caused by the treatment of the first. . . once the info was shared, we told the Dr. we'd only accept positive reports from that day forward.  We were going to live like it was all going to work and he was going to survive.  If we had to face another potential outcome, we'd cross that bridge when it appeared.   And Trayvon, we decided it was the wrong time to move to transplant, despite the misgivings of the transplant team.  We had hard decisions to make, and harder ones to live with if we were wrong.  In all of these cases we were right.

Our luck, time, whatever will run out one day.  We'll be faced with such an impossible Hail Mary it won't be realistic to hope for success.   Until then though, I think we'll just keep throwing them up and praying they're going where they need to be to make us a winner and not a loser.  I just hope God isn't keeping score.  :-)

With love,

Renee 

How Hot Can You Get???

Even at 106.1 he was trying to smile in the ER.

That was the question Sergio decided he was going to try and answer for us Friday evening.  Now, this child has gotten "hot" before, up to 106.5 and I don't really even bat an eyelash, as long as he's getting the medical intervention he needs. . . but, Friday was a different story. We landed in the ER at 3:00 am due to a fever that was moving rapidly and he was looking very sick, very fast.  It earned him a trip to the PICU.  During the day the docs and nurses kept saying how good he looked, despite the fact that I kept saying it was highly abnormal for him to sleep all day and his heart rate was very high for him.  At 7:10 pm he decided to see how hot he could get. 

He had just reached 107.3

107.3.  That's how hot he can get.  I pray that's the hottest he ever gets again.  It was the highest temp of the new PICU, where we were thank God when he pulled this little stunt, but not the highest of the hospital.  The record was 108.1 for a little girl with a massive abscess in her abdomen.  They drained it and immediately she recovered and was on her way.  That's impressive.  Sergio's wasn't so easy. He shook harder than any seizure I've witnessed.  He cried out in agony as his body was violently put through a temperature change of over 8 degrees in less than 15 minutes.  He turned purple as the blood vessels clamped down to preserve his organs and his heart rate sky rocketed to over 200 beats a minute.  Yea, he spooked a few diehards in the PICU Friday; including me.

 It's the line again.  That damn, lifesaving, life giving, and potentially life taking line; the one that feeds him because his gut just refuses to work for some unknown reason.  The line that keeps him growing, thriving, hydrated, and fed.  Pair that line with a gut that is full of bacteria, as we all are, and a gut that likes to just share those bacteria with his blood stream, again for some unknown reason, and you have disaster.  These disasters happen about once a month again.  We do get breaks (the longest one was 18 months!) where he stays infection free, and then bam!!  We get stuck in this vicious cycle that is trying the best of the docs here. . . and me.  

I consider myself a pretty good problem solver.  I like murder mysteries and often solve the "mystery" of a movie before the end. I like games like Words with Friends, because they make me think and I love my medical apps that give me a case and I have to solve it (I've gotten pretty good too LOL - thinking of charging $20 for advice at this point!).  But I've lived with a walking, breathing, strong headed medical mystery now for over 6 years and I can't figure the answers out.  That's a kick in the gut. I can solve random crap but not the one that really counts.  

Sergio can't talk.  But he can communicate beautifully.  Sergio is smart, but he'll make you think otherwise if it means you'll ask him to do less. He'll play smart if it benefits him to do so.  Sergio can read (not at grade level, but can read words), he can spell, he can count he can problem solve and is incredibly resourceful in devising ways of getting to his water sources.  He is sly and creative and is his own favorite comedian (he literally will sit in his bed and crack himself up with evil little thoughts! LOL)  He is an integral part of our family.  The nurses that care for him in our home, love him like he was one of their own. 

Two days after his little fever fest.

The nurses in the hospital argue over who will have him to care for.  Why do I say all this. . . because he’s worth the fight.  He’s worth the time, energy and mental anguish to pull him through these awful infections again and again.  I often look at Sergio and think; “Do the doctors see what I see, and do they think we should fight as hard as we do?”  I never let my mind think the unthinkable, that maybe just maybe, this disabled little boy isn't work the money or time.  But, their actions speak louder than my worries.  They fight like hell to keep him going as I fight like hell right along with them.  The doctors have pained looks on their face each time we have to talk about replacing a line, or what to do with this severe infection or how do we keep this from happening.  They just don’t know either.

So in the end, the mystery stays just that, a mystery.  My little spit fire who loves his naked, backless potato heads (preferably in water).  My naughty little man who sticks his tongue out at everyone now because he knows it gets a rise out of virtually anyone that works with him.  My mystery man who has mastered the best primal growl you’ll ever hear from a human when he doesn't like the outcome of a plan he had devised.  And as everyone knows, a mystery is just waiting to be solved and so I will. . . hopefully it will be in time.  

Days of Summer....

“There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, of deep contrition, and of unspeakable love.”

― Washington Irving

            It’s pouring out and the house is quiet. . . the two noisy ones are at summer school.  Thought it was  a good time to put some words to “paper”.  Marriela has advocated that I take up Vlogging.  I think not.  There aren’t a lot of pics of me out there and there sure as heck not going to be videos floating around the world of my mug talking with my irritating nasal voice.  Oh my.   So I’ll stick with the Blogging, which she completely disagrees with.  Sigh, sorry to disappoint sweet girl!

This was supposed to be the update following our incredible Make-A-Wish trip to the indoor water park.   Sergio became very sick and spent 8 days

Sick little man.

in the hospital instead.  But he defies the odds and the antibiotics, despite not

Sprinkler time!

working for many days, have successfully cleared the infection once again.  I asked his doctor the odds of saving his line, he said it was 50/50, but Sergio has won the 50/50 coin toss over 80% of the time, so he would never bet against him.  J  That’s my boy!! If only we could put that good luck into something far more productive than saving central lines! 

Anyway, back to topic at hand.  We didn’t get to go on the trip.  We are looking at trying again the last week of August.  We started a new method of giving his Immunoglobulin treatment and so far it is going very well.  He is now getting it via little needles in his tummy and a pump pushes the IG into his tissues where it absorbed over the next week.  We repeat this weekly rather than going for one big dose IV each month. The IV method was causing severe reactions that were also resulting in hospitalizations so I didn’t think quality of life was being met the way it should be.  Praying this helps with infections AND decrease the reactions so we get all the positives and none of the negatives. 

The first fireworks the boys have seen.

The rest of the kids took the news of a delayed trip better than we anticipated, especially a certain little brown girl who doesn't handle change well at all!  I did cushion the blow by scheduling her Hawaiian themed birthday party for the local public pool.  This was a nice distraction and now we’ve been researching Luau themed birthday supplies on every site we can find.  Summer school, and the anticipation of several other fun things have helped create the distraction we needed. 

Thinking of making one of these for home!

Enjoying our turkey legs!

This past week we took four of the kids to the Renaissance Festival.  Tray, Cody and Marriela really loved it!!  Marriela got so much more from the shows than we anticipated.  Cody and Tray loved all the armor and other crazy outfits people looked just a tad too comfortable walking around in.  Joshua went to Casey’s Place Medical Respite where he decided he should keep them on their toes and started seizing badly at the park.  But they gave him his rescue meds and he pulled though and stayed the rest of the weekend.  He LOVES that place and it’s the only place he can go safely.  Sigh. 

This week we are leaving for four days to the Brian Bisgrove Home of Courage in Owasco, NY.  What an incredible gift for our family.  I’ve talked of this incredible place before, but please know this is really is the closest thing we’ve had to a relaxing family vacation in six years.  We did go for four days

Last fall at the Home of Courage

last summer to Lake George and had a great time!  But, it was intense, I was running 2 antibiotics for Nettie’s severe knee infection, 2 antibiotics for Sergio’s recent line infection and all of the other meds and IV stuff that is routine.  The Home of Courage is just relaxing.  There is no pressure to “go” anywhere.  Just hangout, fish, shoot bb guns, put together puzzles, cook out and get as close to “camping” as we can without risking the kids.  I am looking forward to it!!!

The week after that, Cody is going to a Ninjago Lego camp, then Tray leaves for a week for his Camp Hope with Heart near NYC and the week after, Joshua goes to his Camp Hole in the Woods camp for 4 days near Lake George.  THEN we hope to take the kids on the Make-A-Wish trip as Sergio will be suffering from severe cabin fever by that point!! 

Tray and Cody are very into “Zombies” and how to survive an apocalypse. I asked them to research the CDC site and find a list of 20 items they would need to take in an emergency to survive.  A few of their answers. . . brace yourself for the well thought out ideas. . . don’t be shocked if you didn’t think of some of these. . . ready??  A teddy bear, Bo and Mazzy (our dogs), a “blunt object”, toilet paper, a note to say good-bye to the family, food, a bandaid (just one apparently is all you need for a zombie bite), layers of clothes, a book to read, and the best. . . berries.  I’m pretty sure they both spelled batteries wrong,

A day at the park.

at least I’ll just hope that was their thinking.  Clearly they will not be surviving well for too long in the event we need to really leave in an emergency.  There were some good answers (with some prodding) like their meds, a knife, some water, etc.  LOL  Marriela just said not to worry ‘cause we’re going to Heaven soon anyways. . . this is a running theme with her, should I be worried??  She has plans for my pictures, our house and my ashes!  LOL 

The kids are all doing well.  Tray is so healthy and strong and his last biopsy in June was perfect.  Cody has had almost no issues with his asthma and he is excelling at his Jui Jitsu.  Joshua has actually been doing very well relatively speaking.  He has about 3 seizures a day, mostly when he first falls asleep or early in the morning hours, or during naps.  But he is happy and well otherwise.  Nettie is doing very well and is always busy.  She comes over every other Sunday and next week is going to restart attending Church with her new worker (at her request).  I love her so much!  She will be going with us on the Make-A-Wish trip and she is very excited about that!  Marriela is doing well.  She is growing, healthy and mostly happy.  Recently however, we are dealing

Loving the pool!

with a lot of “anxiety issues” and an over focusing on recurrent worries.  Starting a very mild med to see if we can reign some of this in for her, as it really upsets her when she can’t “turn her brain off” on a worry.  She has to talk about it, share it and just overall obsess and it is very upsetting.  This results in tears and anger at her “brain” and the panic like symptoms she develops as she becomes upset, such a difficult cycle to break, and it hurts my heart to see her struggle with it so much.  But overall, her summer school has been great and she is so excited about her birthday party!  Trying to keep her focused on the things to come.  Sergio is

First days of summer

doing well.  When he’s not sick, he’s well.  He is going to summer school, and the gets a little water play in every day (more than he should, but he’s very resourceful!) 

Well, this is long enough for today.  Sending love and peace for a wonderful summer everyone. 

Renee

Messy Miracles in the Making. . .: Just a little update

Messy Miracles in the Making. . .: Just a little update: So much happens in such a short time, it's hard to keep up with it all via this blog.  I guess I should do it more often.  So here'...

Just a little update

So much happens in such a short time, it's hard to keep up with it all via this blog.  I guess I should do it more often.  So here's a synopsis of where the CurkGang is right now. . . knowing this may all change by tonight.  LOL

Today I have Cody and Marriela home.  Marriela is highly agitated that she was "given" a cold and that I should be able to "take" it away as easily as it was given.  Not sure how to explain the epidemiology and transmission of viruses to my daughter, and if it doesn't end with "sit down and I'll take the stuffy nose away" it's all for naught anyways.   So I conceded that she's not a "fun" sick person.  Cody on the other hand, as long as his fever is down, is very fun.  Already beat him at a game of Battleship and now he's dueling it out with a virtual friend on Call of Duty while his antibiotics go to work.  Other than the continuing noisy wheezing you can hear from a room away, he seems just fine now.

Peter is on his way to Elmira.  They have created an end of the year award for athletes: The Peter Curkendall Male Athlete of the Year Award.  How cool is that?  This is the awards first year so he's going down to present it.  His dad is also in the ER again, second time in 2 days, and only 3 days out of rehab for 5 weeks.  It's very hard to watch our parents age and see them struggle with things.  It occurred to me that I am now the same age as my mom was when I married Peter.  How amazing is that?   It's wonderful and scary.  So please pray that we can find the means and way for Peter's dad to be independent AND safe.

The rest of the gang is well.  Trayvon is growing like a weed.  Size 14 feet (Lord I hope he doesn't grow into those feet!!) and officially "almost" as tall as I am (5'9") he just keeps looking more and more like a man every day. My sweet little boy who struggled to grow at all from 2 - 5 years old is now a growing machine (and an eating one).  Joshua, though done growing up, seems to still have room to grow "out".  We gave a trial off of his Adderall.  Due to his seizures and the inability to just "go out" anytime he would like, physical activity is difficult.  In addition, his Traumatic Brain Injury creates a chronic fatigue that the Adderall clearly was helping with.  Off of it, he is always hungry and slept all the time.  So he's back on it and as of today he was happy with only one bowl of cereal!  LOL  That was a learning curve I'm happy we've jumped off of!  Seizure wise, it seems he's having another increase.  He's needing his ativan about once a week or so.  But, this tends to cycle, so we'll see how it goes.

Sergio is holding his own.  The IV medication that has helped him stay free of ear and lung infections, may be the culprit in his monthly admissions. It seems that after every infusion he has a severe inflammatory response that results in fever and admission.  We are withholding this month's dose to see if our suspicions play out.  If they do, we're going to try a "sub Q" version, in which we place several small infusion needles in his tummy and infuse a smaller amount over a few hours weekly, rather than the one large dose monthly in his IV.  There seems to be a history of fewer reactions to this method so we pray that holds true for Sergio as well.

Nettie is doing well.  She has unfortunately begun to experience a "treatment failure" in that she is having side effects of her HIV medications as well as  small bump in the amount of virus found in her blood.  Because of the two issues, she has now been changed to a whole new medication regime. The first change in over 13 years!!  That's unheard of, so I guess I can't really complain.  It's amazingly wonderful that we actually have all new meds for her to go on because, only 5 years ago, she had taken them all at one point or another so if this had happened then, there were few choices to work with.  Today that is not true.  Even MORE amazing is that the three new meds are combined into one pill she only has to take one time daily!!  That means she goes from taking 9 pills a day to only one! She loves that.  The side effect she was having from her old meds is neuropathy of her feet.  Her toes are burning and painful, which is compounded by her need to wear foot/leg braces and use a walker. She has said that the burning isn't as bad since changing the meds so we are praying it's all reversible.  Otherwise, she is doing fantastic!

Peter and I are chugging along with school.  I have actually graduated with my M.Ed. in Education Administration.  Once I take my exams I'll be certified as a school building leader (principal).  Peter is within a semester of starting his 3000 hours of internship and is researching local options.  We are so close to finishing!  I am just going a bit longer to get my School District Leader Certificate so I can work as a Special Ed director or other district leadership position.  These credits will apply to my doctoral degree, eventually I will complete that as well in the future.

That's us in a nutshell.  Have a wonderful day.
Love,
Renee

Motherhood. . .

Mother’s Day. . .  well, actually, every day is mother’s day.  I am blessed daily to be mom to wonderful children.  I am blessed daily to do all the things a “mom” just does and I’m even blessed to do the things moms don’t want to do (like clean the toilets. . . God really should have focused on the aiming capacity of boys or we need to invent wider bowls, but that’s another blog).  I am the mother of my children in both the “traditional”, home-grown way, and the non-traditional “adoption” way.  I have held two children as they entered this world and I held a child as she left this world.  I have grieved over a child that was not to be due to an ectopic pregnancy.  I have grown close to foster moms who gave an incredible piece of their hearts to their little packages and then turned them over to another family to adopt.  I've watched the pain of biologic parents as they grieve and celebrate their child’s life from afar.  I sooth my children who so wish they knew who their “real” moms were, if only to say, “see, I’m doing ok and thank you for letting me get adopted.”  I hold the hands of my children as they endure the tortures of modern medicine in an effort to improve, increase, and enhance their lives.  I've watched as modern medicine failed to give us the answers and treatments needed to continue any further. 

Being a mother is a responsibility, a job, a need, a requirement and an honor.  Some days I wish I could turn off the ability for my children to yell “Mom!” for even a few hours.  But, then, when it’s quiet or one of my children isn't home, I long deeply to hear that same word.  My eldest moved out almost two years ago and I still ache to hear her in the room next door, asking me if I’m scared of the thunder, knowing she’s all alone at her own home now. . . terrified of the thunder.  When I hear my name screamed in “that tone”, the one that signifies a major ordeal or trauma my heart skips and my adrenaline goes into full force.  And once that trauma or ordeal has passed, I get to hold my child and wait for the internal panic to settle and move on while soothing a human being I, incredibly, have been allowed to be responsible for.   

I have known since I was a child I’d have a “different” kind of family.  I don’t know how I even knew about adoption; I didn't know anyone who was adopted.  I just knew that I was going to be mom to someone else’s children as well as experience motherhood from my own perspective.  I did not expect however, that adoption would have been the first step!  I did not anticipate that after my ectopic pregnancy, having a child would elude us.  Nor did I anticipate the incredible loving bond I formed with my student, Annette.  God knew all along though and allowed me to gather the courage to approach motherhood at the age of 23 from a very different avenue than I had envisioned.  Living with my child in a hospital for almost two years never crossed my mind when I thought of my family planning. . . now, it seems like it was always a stepping stone for some other new challenge that lay ahead. 

I am deeply honored, blessed, grateful and humbled in my role as a mother.  I can’t imagine a greater responsibility in life, nor could I imagine doing it without the man I knew would be the one and only man who would join me on this crazy journey.  Again, God knew, and the path was set with or without my input. 

Happy Mother’s Day to each and every mother.  To those whose children have grown and left the nest, to those who struggle with health needs and the need to be a mother – what an incredibly difficult and amazing ability to juggle all that is needed, to those who birthed but do not raise their children – without your sacrifice (willing or not) I would not have been blessed with 5 amazing children to call my sons and daughters, and to those mothers who have angels on high – the hole left with the passing of a child is beyond words, the sheer ability to carry on to continue caring for others and yourself is nothing short of a miracle.  I know some truly amazing women in my life and each and every mother I've ever met has helped me learn how to be an even better mom.  Thank you.

To my own mom: though we did not see eye to eye on most things earlier in our relationship, I can’t imagine how life would have been had I not had you as my role model.  To my sisters: we each went in different ways and we have each worked hard to do the best we can in every crazy circumstance we found ourselves.  I love you both.  To my sister-in-laws:  you are like sisters to me, each of you (Brenda, Tammy, and Millie).  I may not talk to each of you anywhere as often as I should or could, know that I love you. 

Happy Mother’s Day my friends.   

Breath in, breath out, repeat. . .

Honestly, sometimes I'm so tired this is enough to make me exhausted.  With full time school, full time family, part time internship, and musical beds most nights, it's hard to really catch up.  I know for a fact, we are not alone in this dilemma.  I realize that parenthood in general is exhausting, but sometimes, even once, I'd like to FEEL rested even if I'm not really.

With that said and the little rant over, things are good.  Really good.  I have officially finished my internship and at the close of this semester I graduate with my Ms.ed in Education Administration.  In addition to that, I went through the many, many hoops NYS has created to re-apply for my teaching certification as a Teacher of the Speech and Language Disabled.  I took two exams for state credentialing, had to take an exam for credit (6 graduate level credits!), I I had to complete 3 workshops and have my fingerprints done once again.  Now I pray, hard, that the deem my past transcripts as successful in meeting all of their requirements. If they do not approve it, I essentially would have to go back and do a BS degree all over.  On 5/1/14 NYS changed ALL of their requirements and have all new exams.  My past degree is, in essence, erased.  Sigh. Like I said, I'm praying!!

Sergio has just celebrated his 8th birthday.  At four I was overwhelmed with the magnitude of the health changes he was undergoing.  Thinking TPN was going to be a temporary 6 month or less endeavor, until his gut started working again.  At 5 the start to of the never ending hospitalizations for weeks at a time.  At 6 being given no hope that he could beat a fungus infection that had overtaken his entire body and we were sent home on a regime of drugs that no one can even find in any medical literature.  To the amazingly wonderful 18 months of absolute stable health and no hospital admissions.  To 7 when the vicious cycle

started all over again.  Here we are today, incredibly blessed to be outpatient now for over 2 months!  He's happy, healthy (in a very relative term) and still keeping us on our toes day and night.  His Make-A-Wish trip is now in the planning stage with the organization and we were blessed again with a wonderful duo of experienced wish planners.  They are kind, compassionate and appear to understand the level of needs each of the kids present when planning a trip for a particular child. We'll give more details when things are more solidified. :-)

School is almost over for the kids.  I'm so proud of all of them.  Granted, Tray has given us a few extra gray hairs, but that's what a healthy child should be doing!!  He is feeling strong, invincible and adventurous.  He's also now feeling grounded, phone-less and for some time he was x-box-less.  But we've given back some things and he has held up his end and is keeping his nose to the grindstone and out of trouble. We were REALLY close to going to homeschooling and then I thought. . . . who am I kidding!!??  I've always said I could NEVER homeschool, I'd kill them all. LOL  So after talking, yelling, withholding and loving, he is moving in the right direction again.  I'm happy. :-)  That was a close one!

Marriela, Cody and Joshua have all had good years.  Joshua is officially a senior next year, but hopefully we can talk him into staying until he's 21.  We'll see.  If not, we'll find him a program to get him into a home based business like Nettie.  Speaking of Nettie, she recently had 2 very large orders and now has enough to buy a laptop!!  We are so very proud of her and in a month we'll be looking to hire her own personal business assistant to help with all of the card making, paperwork, and businessy stuff.  Here's her website again if you haven't had a chance to visit.  www.fortheloveofpeace.webs.com


Peter is getting very close to the end of his schooling as well and will be looking at his internship (3000 hours!) by the fall.  It seems like just yesterday we were signing up on-line and laughing that we'd never get accepted!  Who knew??

Well, that's it for now.  Just felt like it was time for a bit of an update.  Hope this finds you all happy, healthy and in company of loving family.

Hugs,
Renee