Saturday, August 20, 2011

Messy Miracle in the Making. . . Sergio.

Since he’s the youngest and we’ve actually only had Sergio for 3 years, you’d think he would be one of the easiest Miracles to talk about, alas that’s just not the way it is.

Sergio, like Marriela, came into this world very undercooked. He was born at 24 weeks to an 18 year old mom who had made some bad choices in life. He was 1 pound 6 ounces and due to a severe lack of amniotic fluid, he had severe contractures of his arms and legs and a very misshapen head. I only know what I do, from the various nurses who had him in the NICU as well his foster parents. According to his NICU nurse (who is now our nurse who comes out weekly to do all of his lab work) Sergio was one of the most fragile preemies to survive. He coded multiple times a day and was virtually impossible to touch him without causing significant issues. He was vent dependent for months. His mother was initially a part of his life, and I think, had things been different, would have been a bigger part, but life is funny like that. Sergio was too much for her. She faded out over the weeks and months after his birth and eventually, he was placed in the care of the DSS. His foster mom to be, began visiting him daily to help him acclimate to being held. Each time a nurse tried, he’d code. They held little hope that anyone would be able to help Sergio and often pushed the state to put a DNR in his chart. Thank God, the state is not allowed to use DNR’s if the bio parents object (and Sergio’s mom refused to sign it). Maryann, the foster mom, slowly but surely was able to get Sergio out of the incubator, onto her chest and eventually, off of the vent. His nervous system was so hyper that the noise from a garbage can caused his heart rate to sky rocket and his breathing to fail. Everyone worked diligently to get Sergio to a point where he could leave the hospital one day, and that finally happened 7 months after he was born.

Sergio was severely compromised due to lungs that just refused to cooperate, thus requiring high doses of steroids and oxygen just to maintain his ability to breath. The steroids made him. . . for lack of a better definition, fat. He was so swollen from the steroids that he couldn’t move without assistance. When we met Sergio he was the length of an 8 month old, but weighed 10 pounds more than Cody, our homegrown 2 year old) who was 6 months older than him. He was huge in width. He had rolls in places I didn’t know could roll! He had at least 3 chins and well, breasts (or as the kids here call them, pecs) that I could only wish for. He was blowing out a size 6 diaper.

With the blessing of the doctors and the assistance of his foster mom, we began an aggressive and determined attempt at weaning Sergio off of his steroids. Though he didn’t get far while still in foster care, once he moved here, we went to work immediately. Though there were glitches along the way, it was amazing at how quickly Sergio began to thrive as the steroids were pulled away. His breathing improved rather than declined, he lost weight and began to roll, sit and interact in ways no one had predicted he could have done. He proved that he wasn’t blind and actually had great eyesight in his one good eye. He demonstrated that though he had huge challenges, he was determined to overcome them. We were so happy at how well he was doing. Soon he was off of his oxygen (a feat his pulmonologist had determined was virtually impossible) and the discussion about needing a trach was completely taken off the table. All was going well. Until. . .

March of 2009, Sergio caught RSV. We spent the night in the hospital, but they weren’t really doing anything for him that I couldn’t do, so we opted to go home later the next day. That night things went down hill and the next day I was in the doctors office holding a blue little boy who was struggling for every breath. Off in an ambulance we went. That admission was the start of many issues that continue to plague my baby to this day. While in the hospital, he contracted the Roto Virus, this normally harmless virus, completely shut down his stomach, we had to have a tube implanted in his intestines to bypass his stomach to feed him. He was back on steroids and oxygen was now a part of his daily life again. We worked hard to overcome these new challenges and just as we had made some head way, exactly one year later it all came crashing down again. This time he began having neurological issues, his intestines were no longer accepting the feeds and after a short time, he began having profound head pain that only morphine seemed to remedy and for only short periods of time. We were in the hospital for 3 weeks looking for elusive answers. In the end, we came home on pain killers, with no working GI tract, dependent on an IV surgically inserted for all nutrition and back on oxygen. He was so sick. He improved a bit but 6 months later a vicious cycle of infections, fevers, blood loss and contaminated central lines began to rule our lives. Sergio continues to confound the doctors and there are no real answers. It is suspected that he has a mitochondrial disorder, but what one is anyone guess.

However, Sergio is so much more than the above issues. He is fragile there is no doubt, but he lives as if there is nothing wrong. He has no issues with his issues, so we work hard to live the same way. He is who he is. Sergio can’t speak, but he sure can let you know what he wants. Sergio can only see partially with his left eye, yet he can find anything he desires. Sergio can’t eat, but that doesn’t stop him from touching and tasting every nasty thing that humans or God have created (including but not limited to, dirt, mud, bottoms of shoes, random discarded soda cans and bottles at local parks, the steps up to the slides, the screen doors or windows in virtually any house, the hospital radiator and last but not least, the cool feel of toilet water on his hands – clean or dirty is optional). Oh trust me, I know how gross that all is. . . come on, but it just goes to show, he’s not afraid to try anything once (or twice or even three times if I’m really slow getting to him!).

Sergio loves to blow kisses, can give the best high fives and knows the signs to all of the verses of wheels on the bus. He can manipulate and operate the iphone and ipad with remarkable dexterity and intelligence. He prefers to listen to Dr. Suess in Italian or French (don’t ask. . . he’s figured out how to go to options and change the language LOL). For all we know, he can think in multiple languages, but due to the area of his brain that was damaged, he can’t speak a single word. Sergio hasn’t grown since he was 18 months old and though he is 5 now, he still wears 12 – 18 month pants and 2t shirts. His favorite hangout is his swing which is really just a plan old baby swing that he fits just fine.
In the end, Sergio is a Very Messy Miracle in the Making. I pray that it is in God’s will to allow us to continue making this miracle into all that he is suppose to be.

Wednesday, August 10, 2011

Rabbit for the taking. . . for the price of love.

Yes, we have a rabbit, in addition to the 6 kids and 2 dogs.  There’s a story behind the rabbit, as there is with all things that come into this house. 
For Christmas one year, we took Nettie and Joshua out to a mall in the Elmira, NY region and stopped by the pet store to let the kids see the puppies.  I fell in LOVE with some baby rabbits.  They were so cute and fluffy and I just knew that this was the perfect pet for us (along with the dog we already had).  Now mind you, we only had 2 kids and one dog, so the thought wasn’t so crazy  (at least at the time it didn’t feel crazy).  Willow, the name I settled on, was treated like a part of the family.  He was litter trained, did not live in a cage and had free run of the house.  He enjoyed sleeping on our bed and would chew on Peter’s beard hairs when he was sitting on the couch.  The only down side. . . he decided I was “his” chick and felt the need to mark me every stinking morning!!  So, off to the vet to take care of this one little issue.  All was great until he was three and we went away for a weekend.  While away, we had family stop in to let the dog out and to check and be sure Willow had food and water. They decided to take their new puppy with them not thinking anything of it.  Well, Willow got spooked and ran between a chair and the leg of the table and in doing so, snapped his back leg in three places. 
Now, I realize most people would have said, so sad, but, he is just a rabbit and kissed him goodbye and had the vet do the rest.  However, I felt obligated to try all I could to help my baby.  So after visiting 2 local vets, we went down to Cornell University’s emergency room.  The doctor was awesome and he agreed to try and cast the leg to let it set and see if it could heal.  Once a week for 6 weeks we went down to the vet and had the cast changed and the leg x-rayed.  Willow did awesome.  The final visit came and I was a bit concerned, as Willow wasn’t acting his usual self.  When we got there, I mentioned he seemed more sullen than usual. . . long story short, the leg had not only rebroke at some point, it had become an open fracture and my baby was septic and in shock.  Again, a normal person would have said their good-byes and let nature takes its course.  Apparently, I’m not normal.  I kissed him and sent him off to the ICU where they did emergency surgery and amputated his entire back leg and hip joint.  He spent 4 days in the ICU and when I picked him up I was instructed in how to care for his “stump”, how to give pain meds, antibiotics and to feed him a very special critical care formula.  I was told there was little chance he would survive, but if he did, he would do ok with just 3 legs.  $1,800 later we head home.
For those who don’t know, Willow fit right in.  Our daughter was in a wheelchair and our son had just finished treatment for an aggressive brain tumor and was left with numerous deficits as well.  So what was one more “kid” with meds and therapy needs.  What I didn’t expect, was Willow became depressed.  He stopped using the litter box and was no longer able to be left out of his cage.  My heart broke.  I washed him and loved him and but knew he was sad.  He became a dirty little old man.  Soooooo, bright light  moment, let’s get him a friend! 
Off to the store to get a friend.  I picked a lovely little gray and white female.  She was so pretty.  And, unfortunately so NOT into Willow.  She kicked his 3 legged butt over and over so we had to separate them.  I called the vet.  He tells me she needs to be spayed.  Oh my, that’s another $200.  But, nothing’s too good for my Willow.  Peter disagrees about this point, but we’ve gone this far, might as well go for it.  She gets spayed.  We follow all of the instructions for reintroducing them, to no avail.  She and Willow clearly are NOT going to get along.  I go out and find a $70 cage for her to now live in. 
Now we had 2 rabbits, living in separate cages.  One still very much depressed, one bored out of her mind and NOT able to be a free roaming rabbit as she would chew through all of the cords in the house. 
Willow lived another 4 years.  He was a dirty old man, who refused to use the litter box and needed almost daily baths (I think he did it on purpose!).  I had to care for his stump and infections many times over those 4 years, but he was very loved.  I was heartbroken the day he passed.  Sarah, as we came to call our other rabbit, is a pet, but not in the same way as Willow.  Sarah, needs to be loved like Willow was, but she’s now a pet in a house with 6 kids and 2 dogs.  She is stuck in a cage, she get’s little attention.  I’m sad about that and would like her to feel the same love as Willow did. 
Soooo, rabbit for sale (free) to a good home who can appreciate a rabbit for the great pet they can be and will care for her with the love we once did for another rabbit. 

Monday, August 8, 2011

My Parental Confessions part 1:

I have parenting flaws, some as large as the grand canyon, others small enough that even I miss them sometimes. I feel obligated to share these flaws because it's shocking how many people say I'm an awesome mom... So before you make that assessment anymore, you should know the following: my kids play video games - a lot of them. There, it's out, I've said it. Spare me the lecture I already know the studies and what I SHOULD be doing, I choose to let them play. Cody and Tray prefer Call of Duty. They happily sit there with the one working controller (we're down to only one because Marriela threw the other one when her character died on the game Assassin's Creed,, yeah should have taken that as a warning, I know)and engage in surprisingly lethal warfare with some invisible foe on the tv screen. They proudly announce their death/kill ratio and I cringe. People come to visit and find Marriela standing in front of our tv playing Assassins Creed, while her brother, Cody stands watch and repeats over and over "Don't kill civillians!". What those poor people must think of us as parents! Joshua prefers the computer to the Playstation. He will play Wizard 101 or go online and play hidden object games.

We found a long time ago, this house runs better when the children are busy. I would LOVE to sit and do a craft with my children, and when they were younger and there were fewer, I did. Developmentally the disparities began to become very evident. Play dough was not an option for Marriela or even Joshua with their sensory issues. Painting was a brief event at best unless you counted the clean up time after Marriela and Cody tried to help. To provide a sense of calm as we manage the never ending list of tasks that need to be completed daily, Peter and I have come to the agreement that those techies who invent this stuff are owed our gratitude!

Of course the games pose some issues in life. Cody was playing soccer and one of the team's players had a dad that showed up in his Army fatigues. Cody proudly walked up and thanked him for defending our country. As we turned to leave he followed with question, "Are you American or German?". Oops, those darn parents. And then there's the whole killing civilian conversation that Marriela enjoys brining up at the most in opportune times. Or the sheer pride in your son's voice as he shares his death/kill ratio with his summer school teacher - who stops and shoots me "the" look that says we shouldn't allow them to play those types of video games. Whatever!

In the end, I don't think my kids are plotting terrorist attacks against mankind and for the most part, they're well adjusted and appear to be socially appropriate in the eyes of most.

Oh do I feel better. Confession 1 down. Ah, but so many more to follow.

Til then, take care and happy playing!

Sunday, August 7, 2011

Our messy little miracle. . . Marriela

Well, this is my first attempt at a blog.  Actually, that's not entirely true, I've been keeping a caringbridge page for years, but this is different.  A different blog for a different reason.  I am accustomed to writing about the kids and their medical issues and such, but not so much about the "kids" themselves.  I suspect, that many have a hard time imagining what our life is like, though to us, it's just life; to others it may seem a bit overwhelming.  So comes the time to start "blogging" on the inside workings of our unique and organized chaos.

Since today, August 7, 2007 is the 9th birthday of one young lady named Marriela Marie Curkendall, I thought she would be a perfect person to start with.

Most people that know Marriela and many that are even close to her, don't know about Marriela's start to this world.  She was born to a mom who was not well in many ways.  She was sick in about as many ways a person could be sick.  Marriela's birth mom was in foster care as well and sadly was abused by an uncle from the age of 7 on.  By 9 she was an alcoholic, 13 a crack addict, 16 pregnant with her first.  She was diagnosed bipolar and schizophrenic (who wouldn't be after all that trauma!).  When she came to the hospital and was already in advanced labor due to a kick in the stomach followed by a tumble down a flight of stairs, she thought she was about 4 months along.  Too early to be viable, the hospital staff let nature take it's course.  Mom was given some meds to ease the pain of labor and she drifted off to sleep.  The nurse at one point took a look under the covers to see if there had been any progress and to her horror, there was Marriela laying in wait for someone to discover her struggling body trying to breath with all of her might.  The nurse immediately realized (God was shining down on my baby) that this little bag of skin and bones was farther along than her mom had thought.  The staff worked hard to get Marriela stabilized and transferred to her new home, the NICU of Floating Children's Hospital in Boston, MA.  She was severely drug addicted, had withdrawl that literally shook the breathing tube right out of her mouth as she shook uncontrollably for over 2 months until the drugs cleared her system.  She suffered one infection after another and took over 3 months to finally take her first breaths without the help of a ventilator.  Marriela is a fighter.

We met Marriela on her first birthday, 8 years ago today.  She was so tiny and had finally come to the point of not needing oxygen 24 hours a day.  I picked her up as our daughter 4 months later.  She was 16 pounds at 16 months.  She lost weight daily it seemed as we struggled to find a diet or formula her body would tolerate.  Her care in Boston was less than optimal and she was under fed, under nourished and had profoundly under-treated asthma.  She was in our home for only 2 days before I was sitting in the ER watching her breathing away at 100 breaths a minuted and fighting for each and every one.  Marriela was quite medically fragile at first and our focus was on the medical and severe developmental delays she clearly had.  At 18 months she was more like a 4 month old in virtually all areas.  The focus remained there over the first year and a half as she began to grow, make monumental gains and even began to attend preschool!

At 3 we began to notice signs of things to come.  We knew going into this, that she was strongly predisposed to mental illness. . .she had a brother who was hospitalized by the age of 9 with severe issues.  So we began the search for the elusive and at times unattainable, pediatric psychiatric services.  We started with a Developmental Pediatrician who worked with us for 3 years, trying many modalities to help us learn to cope and medications to help soften Marriela's "symptoms".  Finally, after using the last of the meds he felt he was qualified to use, he referred us to our first true psychiatrist.  He was a good man and wanted to help Marriela, we tried many things including psychotherapy.  The therapist was awesome and in the end, he left feeling defeated. . .like he failed us.  No one has failed us, Marriela is a unique individual who refuses to follow protocol.  She doesn't respond to meds the way she should, she doesn't follow the rules of her various diagnoses like she should.  The books weren't written for kids like Marriela.

Now, with all of that said. What I really came to say is the following.  Marriela is an awesome creation of God.  She was put here, not as a mistake of her mother's, oh no, she was put her BY her mother. . . for us.  For that, I thank her mom.  I wish her mom had an easier life.  I pray she has found some solace knowing her children are loved by other families, and she has made many couples happy as they complete a part of themselves as only a child can.  She has formed many families, at last count, 6 that I knew of.  Marriela is one of those lucky ones we were blessed to find.

Marriela, oh where to start!  She is a challenge, she goes from laughing and having a great time to raging that "She's BORED!" in the blink of an eye.  She can drop you to your knees with laughter at some of the things she says or cause your heart to just burst as you watch her have to conquer one fear after another every single day.  She has the development of a 4 year old, the body of a 9 year old, and a mind that refuses to allow her any real peace from anxiety, anger and frustration.  Yet, Marriela has more empathy and love in her than her developmental and mental status says she should be able to have.  For example, Marriela speaks freely and lovingly of Ethel, our precious foster child who passed after just a few short weeks with us.  She LOVED her baby sister with all that a sister could love.  She smiles daily and says she wishes Ethel was still here.  Today she announced "I will dance with Ethel in Heaven.  When I get old I think."  She will happily go up to a child in a wheelchair or stroller that has any physical similarities to Ethel and share how beautiful that child is because they look like her sister, Ethel.  Marriela is also going to have a banner 30th birthday year.  Apparently, this is when we are all (virtually anyone that Marriela knows) will have to donate our cars (including but not limited to a: 12 passenger van, Dodge Caravan, Chris' car, and Toni's truck).  She will also get all of the baby stuff she needs, as she will be having her first baby at 30, including Ethel's crib from the basement.  She is getting the neighbors infant car seat (and oh yes, she has told the neighbor) and apparently will also be aquiring her little brother, Sergio as well.  I'm not sure how he got thrown in the mix, but she's convinced he will be the same size (and hey, she may be 100% right) in 21 years and will need her to take care of him!  Marriela loves riding her bike and is terrified of toilet paper roll holders in public bathrooms, yet her anxieties make her have to go the bathroom about ever 1/2 hour, a cruel irony.  Marriela HAS to bounce she she listens to music, so if you're the unfortunate one to sit on the same bench with her in the van, you WILL have a headache at the end of the trip.  She bounces hard enough to shake the whole van but does so in such amazing rhythm you almost forget the van's shaking like it is.  She knows the words to virtually every hip hop song out (oh, spare me the parenting lecture. . . you try to find something else that keeps her as calm as hip hop and I'll be happy to play it!).  How she knows the words to these songs when we only listen to the radio in the car, and yet can't remember things we talk about daily is beyond me.

In the end, Marriela is a very Messy Miracle in the Making.  But, she's worth every single drop of mess she makes.

With Love,