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  

Time To Make A Wish. . .

After a several scary episodes, after several years of unpredictable trips to the hospital, after 3.5 years of hoping the TPN will only be temporary, after attempt after attempt to use a GI tract that is defies logic. . . we are asking for a referral to Make-A-Wish.  I knew "one day" Sergio would get a wish.  I had only hoped it would be when he was much older so he could be more communicative on what he would like.  Not knowing the future or how the unpredictability of his many issues will play out, we feel now is as good a time as any. 

One of our scariest stays yet.

So, what do you say to the wish granters who want to help "build" a dream come true for a child that can't speak.  Anyone that knows Sergio, knows he can most certainly "communicate" and does so all day long - from yelling at you when you tell him to get out of the sink, come down from the top of the stairs, get out of the toilet, etc, etc.  To when he asks for his brother, Cody, to get into bed with him and play monkey.  To when he requests very specific things for YouTube (Spider-man Potato Head, pumpkins, babies, etc).  Yet, how can he tell the wish granters what we KNOW he'd want to if he could. 

Peter and I talked a long time and we realized that Sergio's wish isn't something concrete.  It isn't a specific trip (he loves Potato heads - but only in so far as he can bounce them, not actually dress them and such).  It isn't meeting someone.  Those are the categories listed on their site.  After a great deal of thought, throwing ideas into the hat and dismissing them almost as fast, we realized Sergio has shown us what he would love.  A VACATION!  One of the happiest times we've ever seen Sergio was last summer on our trip to Lake George.   He had never been on a trip with us up until that point.  He LOVED the hotel.  He slept in bed with me every night.  He LOVED the boat ride.  He LOVED the many different places we went.  He LOVED being away.  We had the best vacation ever and it was only 3 short days long.  Every one of our child loved the experience and we feel this is what Sergio would like and want if he could ask. 

Sergio LOVING the boat ride!

He can't fly, he can't go in water, he can't withstand heat, or cold, he can't be far from hospitals and he has to have the ability to get out and move regularly.  We have to travel with 3 wheelchairs, need a refrigerator for TPN and meds and storage for monitors, medical supplies for all of the children, and car seats for two kids.  Sounds like a road trip to me!  A larger RV type vehicle that can fit all of us and our equipment with plans to stop along the way to stay at hotels and maybe even an amusement park during the time of day Sergio is most inclined to enjoy it. . . is perfect. 

I couldn't talk about it without tears when we first broached this subject.  I found myself seeing it as yet another leg of "finality" in his overall journey.  Now, I feel very different.  I know this is something Sergio will truly love, as will the rest of the family, as we make amazing memories together.  He will be a part of something we would never be able to do on our own and our family will be whole, happy, and free to be so. 

I pray hard that the wish granters will see what we see when we look at those pictures of last summer.  I pray they will listen to Sergio and his sweetness and look at the complexity of his needs and realize that there isn't a "package" that he can be a part of.  I pray that they understand the number of factors that complicate his ability to participate in so many of life's activities. 

A little sister and Sergio time in the bed at the hotel.  

The referral will go in this week.  I am now excited and see this as the amazing opportunity it is.  I have faith that all will work out and that Sergio will make memories, have fun, live a full experience that he would otherwise not be able to participate without the help of Make A Wish.  To me, that is the very nature of their mission. 

With Love,
Renee

Revelation. . .

* I was prepared to post this a couple of days ago, since then, we've had a nice meeting with many of the key players.  The battle is harder, the weapons are fewer, the warrior is frailer.  However, the battle continues and we will fight. Sergio has shown no interest in giving up.  He is happy and loving life while healthy and when he's sick, we'll work hard to get him through.  In the mean time, we are looking at more options in how to assess his GI tract to trace where there may be areas of concern or remediation.  We will re-assess his vascular system and see if there are other places to put new lines as they become infected.  We will analyze his previous antibiotic experience and look for other options.  So, I had another day of revelations.  Revelations of hope to counter the ones of fear.  And so the story continues.  


 1/4/2014

Today was a revelation kinda day.  We've all had them, maybe you realize a relationship needs to end, a job needs to change or your hair needs a new color.  Whatever it is, we all have them.  Today was a revelation day for me.  Sadly, it was a revelation I've been banking wouldn't come anytime soon. 

Today I heard the words that stirred the revelation to a new high.  Gram pos. cocci and gram neg. anaerobic.  I've heard those words hundred of times between all of my kids.  What makes it different, is that this time, these two bacteria are failing to respond to the antibiotics we've been steadily pumping into my youngest son.  This time, they are growing together and are refusing to remit to what is suppose to be their cryptonite.   My sweet boy, Sergio, has no idea there is a war of all wars going on inside of his little body, right at this very moment.  He is busy playing at school.  He is busy being bad, being good, being funny, being mischievous, being Sergio.  He is living and so is the bacteria. . . the question now, is who will win.

We are in for the fight, but we are fighting against an enemy we do not understand, nor do we have the ability to stop it from coming at us again, and again and again.  His gut stopped working for all beneficial purposes, but has now turned on my sweet baby and poisons him monthly.  In turn, infecting his life line to nutrition and hydration, his central line.  Without a central line, there is no Sergio.  With the central line, the bacteria have a party central to hang out and make him incredibly sick.  There is no win, win here.

 Sitting in the car I found myself having some very strange thoughts attached to this revelation.  I realized my hair needs to be colored, I don't want to make big decisions with gray hairs showing.  I realized my basement needs to be cleaned, I don't want to make big decisions with a messy house.  I realized I need to get some good freezer meals made so there are things to eat. . . yeah, that one is always a need regardless of the days revelation's.   Is this what other mothers thought when they were faced with the realization that life is changing dramatically for their child? 
So we march on, and fight as hard as we can while maintaining as much neutrality and home bound time as physically and medically possible. 

Season of Miracles

As I sit here, waiting for inspiration to flow through my finger tips, all I can think of is, phew. . . we made it!!  It's been a challenging year in many ways, yet it has also been a year of amazing miracles.  Without a doubt, we have witnessed several miracles unfold before our eyes, even if they were slow to evolve, they could not be denied once seen.

Trayvon:  He is only 2 months from his 2 year heart anniversary.  Two years!  How is it possible that we have lived two whole years since that amazing, scary and incredible ride.  He is thriving.  Trayvon is now 15 years old, 6 inches taller, 50 pounds heavier, and looking at life through the eyes of a child who sees a future.  He wants to be a vet tech.  It's truly a miracle to listen to a child, who at one point, was in danger of having no future, now consider occupational options.  Tray has had no negative repercussions from his transplant that he is aware of.  He feels and looks truly amazing.  His heart is working hard, it probably always will do to his underlying lung issues that are a result of years of poor perfusion.  But, he doesn't feel it, so we don't acknowledge it.  He is going next week for his second annual cardiac catheterization.  He goes every 2 months for a regular one, but he has one big and very involved cath to assess blood vessels and to look for even the tiniest evidence of chronic rejection. . . the arch nemesis of transplanted organs.  Based on how he looks and feels, I suspect, they'll find nothing.  He really is a walking, talking, miracle of modern science and God's great love. 

Sergio:  I was drawn to the edge of fear just a little more than a month ago, that this Christmas was going to be celebrated with another angle looking over us.  His brush with death was as close as he and I and his doctors wish to ever go again; yet sadly we know that just is not in the cards.  His malfunctioning GI tract necessitates a central IV line in his chest to allow his nutrition (TPN) and hydration (water) to reach his body.  Sergio eats and drinks nothing by mouth.  Never has, but even if he wanted to, he couldn't, his stomach is just a lump in his abdomen.  It does not function.  This very same GI tract continues to dump bacteria into his bloodstream and infects his line, bringing him to the point he reached in October.
   

But, the fact remains, as stated by a doctor who rarely shows his stress outwardly:  Sergio was every PICU doctor's worse nightmare:  Septic shock from a gram negative bacteria that was unresponsive to blood pressure medications.  Yet, he is thriving once again.  Sergio has returned to the same little man we knew before that brush with Heaven.  He goes to school, gets in trouble all day long and gives out kisses to anyone that asks for them.  That's the miracle.  God and medicine combined yet again to bring my sweet boy home to continue to bless us with his spunky attitude.  This is not lost on me for one moment and each time he runs a fever now, we will be profoundly scared of the subsequent course of events.  We don't have a cure, this is life for my baby boy, but he's happy, loving and thriving when he's not sick and that's all I ask for.

Marriela:  Oh my, what a year my sweet girl has had!  From a little girl who had to be restrained regularly in school to prevent harm to herself, to a young lady who has had only one "bad" day this entire school year thus far.  That "bad" day, simple required a 2 minute phone call home to me and she went on to have a wonderful remaining day.  She is learning.  She is growing.  She is maturing.  I see hope for her in the future

now, where before it was difficult to fathom.  Marriela, will start a program similar to Annette's early next year, in which we will hire staff to help her learn how to acclimate and engage in all sorts of home and community based activities.  She will be taught to communicate and handle money, and be a part of activities she was unable to participate in before.  This is exciting and much needed for all of us.  Dennis the Elf on our Shelf has rejoined us for the season and she is handling his presence so much better than before.  Do we have our moments, of course.  Have we learned and mastered techniques that bring her back to us before she goes so far to the dark side we need to use medications to bring her back, yes.  But, we use those techniques so often now, she rarely gets anywhere near those points anymore.  She engages and embraces new activities, transitions and life as a whole.  What a blessing to watch her blossom!

Joshua:  My always  sweet, father loving, home body.  He is a "daddy's" boy 100%!  First words when he wakes up, "Where's daddy?"  Last words of the night, "I need a hug from daddy."  Joshua has periods of
great seizure control and times we find ourselves grabbing the rescue meds frequently.  He doesn't seem to be affected by these changes at all.  The miracle of Joshua is that he really doesn't see himself as any different before, during, or after seizing.  He happily goes on, whether in an ambulance, home, hospital or school.  Life is what it is and that's all there is to it.  He loves his movies, his PS3 NCAA Football game and his WWE. 

He loves family time and fires in the fireplace.  He loves hot chocolate with ice cubes in it (actually, they all love "hot" chocolate as long as it's cold lol).  We await word from our neurologist who is attending a two week conference in DC and learning about new technology to control seizures during sleep.  But, know, that if nothing else is available and this is the best seizure control we ever have.. . Joshua is happy and that's all that matters.

Cody:  My never stop moving, wears his heart on his sleeve, BJJ loving, sensory overload little man.  He is such a loving, wonderful member of our family.  His ability to "go with the flow" with all that goes on here is a testimony of God's ability to meet our needs.  He knew Cody would need to be empathetic, self-soothing, introspective and yet highly personable and he ensured those characteristics were intrinsically part of my baby.  Cody loves his siblings.  He tells us he loves us all the time.  He plays with Sergio.  He rubs Marriela's
back.  He concedes defeat when challenged by any of his siblings over
the tv, phones, gaming units.  He just finds something else to do.  He is challenged himself by unrelenting asthma that has sidelined him several times this winter.  He missed his first ju-jistu tournament due to asthma and croup.  Despite his disappointment, he moved past it and all was well.  Our family is truly blessed with Cody's presence.

Annette:  Wow. . . she is the epitome of determination.  She refuses to accept failure or even having to settle for less than her best on anything!  After a long, painful, awful 5 week hospitalization due to a severe infection in her knee, my sweet girl had to learn to walk all over again.  She had to use a wheelchair for weeks (something she sees as a slight to her abilities).  She had to live at home for three weeks after her

hospitalization as I administered her IV antibiotics 3times a day.  But, the night before her last dose, she had her bags packed and everything waiting at the front door for her trip home, her home, not ours.  It was bitter sweet all over again.  I loved having her near to see her and help her.  She wasn't into it nearly as much as I was.  She is an independent woman who has a life to lead away from us.  We're brought into her life every day as she calls and shares EVERYTHING that happens, but it's via a phone call and on her terms.  She comes over every weekend and she would be deeply offended if we took the kids somewhere without her.  She's still a little girl, who's managed to figure out (with the support of her wonderful worker, Taralee), how to live the life of a grown up despite her cognitive and physical challenges.  She is an inspiration to all that know and meet her. .. at least she should be.

Well, that's my update and though it may be long, my angles deserve recognition of their individuality and the miracles each and every one embody.

Merry Christmas,
Love, Renee