Thursday, December 12, 2013

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