So Grateful for Family, Friends & Friends of Friends

I am so grateful for all the love and support in my life from family, friends and even friends of friends.  From what I hear, the surgery recovery may not be too bad.  I am, of course, still freaking out about my daughter going under anesthesia and being cut open, but like a friend explained to me, she is young and healthy and will most likely bounce back better than an adult would or even an older child.  We have a pre-pre-op appointment tomorrow morning with her Pediatric Urologist and boy do I have a list of questions for him.  I’ll fill you in later.

So, I did end up taking Alexa to a Pediatric Chiropractor earlier this week who claims Alexa does in fact have a slight twist in her upper lumbar region and her left hip pronates somewhat, but I don’t think he can help with this VUR condition.  I don't think it is related.  It was worth a try though.

20 more days till surgery... 20 more days until this VUR condition is gone for good.

I’m Running Out of Time!

Alexa’s surgery is only 26 days away and I am now in full panic mode researching all night, every night for alternative treatments for high grades of vesicoureteral reflux.  All I can find are the typical things our Doctor has already discussed with us that he believes won’t work for her particular case.  My heart is racing.  I can barely swallow.  My mouth is dry.  I’m shaking and choking back tears.  This whole situation is freaking me out!  Tonight I found a fairly new method, still in the research process called Laparoscopy.  Did the Doc talk to us about that one yet?  I can’t remember.  We have a pre-pre-op appointment in 6 days.  I will ask him then.  I’m running out of time!  I’m sick to my stomach!

She’s sleeping right now so peacefully.  We have a video monitor so I can see Alexa as I type this.  I’m not sure why I still use this video monitor since she is now close to two years old and hasn’t awaken in the night for a long, long time unless she’s sick.  But I guess having her real life image next to me during the night helps me feel like she’s literally by my side.  I miss her at night while she sleeps in the other room and sometimes secretly wish we continued to co-sleep.  Right now Alexa’s in her bed, in her room, all snuggled up next to her kitty blanket and her favorite little brown bear that we ironically received as a gift from the hospital when she was first diagnosed with this condition.  At 6 months old, we spent 5 days in Boca West Hospital on IV’s as they ran brutal test after brutal test to determine the cause of her extremely severe kidney infection.  The bear was with us the entire time.  This little stuffed bear used to wear a T-shirt with the name of the hospital on it.  The second we returned home from the hospital, I took off that bear’s Tshirt and threw it away never wanting to be reminded of that experience again. She’s snuggled with the bear ever since.  He’s traveled with us to St. Maarten, Antigua, Italy, France, Monaco and Texas. Little did I know that little brown bear would spend the night with us in the hospital another 4 times before she even turns two years old for the same damn condition.

I have decided to try something completely random tomorrow… I’m going to call every Pediatric Chiropractor within 75 miles of us to see if they have ever treated a toddler with VUR and if so, were they successful.  I found nothing about this in my online research, but I did find Pediatric Chiropractors are treating kids with colic, ear infections and even asthma now.  If Chiropractors can cure kids with digestive and respiratory conditions, why not a urological abnormality?  In my research I learned nerves near the end of the spinal cord (the sacral level of the spine) control how the urinary system works.  Maybe Alexa’s sacral level of her spine is slightly off and just needs a little adjusting to fix the vesicoureteral reflux.  Am I crazy?  Am I stretching this a little too far in my desperate attempt to find an easier, less traumatic, less painful way to cure my little girl?  Well, if you think I’m crazy, so be it.  I don’t give a fuck what anyone thinks about my actions right now.  This is my baby!  My precious sweet innocent little girl and I am determined to thoroughly examine every conceivable option to ease her pain and avoid possible unnecessary open surgery.  I can barely swallow.  I’m running out of time!  There’s sooo much weight inside my chest pulling me down right now.  I can’t breathe.  Ok… I’m turning off the computer now.  No more research tonight.  I’m going to try to get some sleep… with the baby monitor just a few inches away so I can feel like she next to me.

Because… Today Is All We Have

FEW! I can finally catch a little breath, but only a short one.  George is upstairs packing to go away on a 3 week work trip (St. Barths… then Italy, Spain, France, Germany and Holland) so I want to spend some time with him tonight before he goes.  Since my last blog we packed up two months worth of crap in two hours, flew back to Miami and have had a whirlwind of a week trying to find balance in our chaotic stateside routine.  Why does it seem like there really is never enough time in the day when in the states?  I frequently find myself up at 6am and going nonstop until midnight (or many times even later).  I can barely catch a breath.  If I have 10 extra things on my daily “to do list”, I am lucky if I accomplish 4 in addition to my paying job(s), my fulltime motherhood job, my housework job, school and all the other daily crap that comes up.  I miss the relaxmosphere of the Caribbean.

Despite the USA chaos, every morning I wake up grateful for a fresh, new day and try to live it like it’s my last.  I try to be grateful for everything as much as I can.  I try to be mindful and aware.  I’m purposefully kind to everyone (or try to be) and truly feel love in my heart for everyone and everything.  If I am lucky enough to go for a run, I imagine zapping everyone I pass with loving energy from my energy reserves and imagine the sun reenergizing my entire being with every breath I take.  If something frustrates me, I try to find the good in the situation and let go of all disappointment or any other negative feelings as soon as I notice the feelings are there.  Yes, I do have to vent them out sometimes, I’m not perfect, but after venting I begin to allow those negative feelings to dissolve as quickly as possible.  Because… today is all we have.

…I’m going to miss my baby while he’s gone and worse, Alexa is going to miss her Daddy so, so incredibly much.  I hope you enjoy the random pictures of Alexa.  I'm off to spend my last few hours with my hubby for a while.  A little separation is good sometimes, but 3 weeks!  That's just so long.

Good News!

Good news!  The Dutch St. Maarten Doc tested Alexa’s pee this morning and it is clean.  She still needs to finish the meds though, 3 more days, just to be safe.  Alexa felt so good today we took her on a boat ride.  She loves boat rides.  We anchored off of a random beach, jumped into the turquoise water, swam to shore and enjoyed spectacular gourmet food on the beach cooked by an amazing Chef in an abandoned bus.  Wish we would have found this hidden treasure sooner, but hey, we have something new to look forward to for next time.

After the Doc and before the boat ride, Heather, Margarita, Jamie and I scurried off to a gorgeous beach front yoga class in Grand Case.  Words can’t describe how beautiful it was.  But the car ride back was the highlight.  I haven’t laughed that hard in a long time.  Boy did I need those laughs.  I’m so grateful to have girlfriends.  What we would do without them?

Imagining Alexa Strong, Healthy, Happy and Glowing

So what’s been going on this last week with the Whitehouse family?  Well, a whole lot of mixed emotions.  I went scuba diving with a friend in Saba.  It was magnificent, but the buzz was quickly killed when we found out Alexa has another kidney infection.  I will spare you the details leading up to this dreadful discovery.  Again, it’s heartbreaking and my poor baby, again, had to suffer longer than she should have.  What’s worse is we are still in St. Maarten, thousands of miles away from her Pediatric Urologists and trusting children’s hospital.  Normally when she acquires kidney infections in the past, she is put on 24-48 hours of IV antibiotics.  Not in St. Maarten and not that I would trust anyone in St. Maarten to stick her tiny veins with an IV anyway especially not with her severe allergy to Rocephin.  Thankfully we are scheduled to fly back to Miami in just three more days, Monday morning March 14.  She is about to begin day three of a strong antibiotic, one they rarely give kids in the states under 12 years old because of it’s dangerous side effects.  She is having some digestive difficulty with it, but so far it’s not too, too bad.  She still seems to be running a slight fever and is still obviously not feeling well so I am really worried.  Actually worried is an understatement… I am utterly beside myself.  I’m praying every chance I get and doing everything in my power to eliminate these horrible thoughts that sneak into my mind every so often each day and night.  I can’t bear to say them out loud or type them.  Instead I am focusing on imagining Alexa strong, healthy, happy and glowing.  When one of those awful thoughts enters my mind I force it out and replace it with envisions of us laughing and dancing around on our catamaran somewhere exotic. (We don’t have a catamaran yet, but we plan to at some point in the future).

This infection is the final straw with her specialists back in Miami.  She is officially schedule for surgery to correct the grade 4 VUR on April 19^th, 4 days after she turns 2 years old and 1 day before our 3^rd wedding anniversary.  I can barely swallow.  I’m trying to remain strong, especially in front of her.  The surgery is a 3-week expected recovery and a slice across her whole lower abdomen.  The worst part of this whole thing is that we can’t explain it to her.  She is going to wonder why we are putting her through this pain, this torture.  My heart is breaking!  I can barely swallow!  I have to be strong for her and I’m crumbling!

This particular surgery has a 99% effective rate.  They will be replacing both valves, both sides.  After her recovery, she will not have to take the toxic daily prophylactic antibiotics any longer (that apparently aren’t even working anyway).  We will not have to rush her to the emergency room to get painfully catheterized every time she has a fever.  We won’t have to put her through those dreadful yearly molesetic VCURG tests.  We will no longer be chasing her around with a plastic cup and her diaper off desperately trying to collect a pee sample every time she seems a little sick.  We will not have to push liquids down her throat like we do now.  She will be healed, healthy.  She is a strong little cookie already and this will make her even stronger.  I’d like to say I am confident she will come out of this just fine, but I’m scared shitless of...  Ok, changing gears… replacing those horrible thoughts with positive ones.  I AM CONFIDENT SHE WILL COME OUT OF THIS SURGERY JUST FINE AND MAKE A MIRACULOUS RECOVERY!  GOD, PLEASE, PLEASE HELP ALEXA’S BODY TO HEAL AND PLEASE, PLEASE GIVE ME STRENGTH.

Sunny Blue Wind Brings Stillness

It’s a gray, rainy Caribbean morning turned blindingly bright blue just in time to be stuck inside for Alexa’s nap.  Harmonizing with the weather this morning, my ♥ feels funny and still does, although not as intensely.  The sunny blue wind albeit through the windows brings some stillness.  Although intensely grateful for the balance of work and play gifted to us in the Caribbean, I’ve been digging for a deeper spiritual connection inspired by my frantic search for alternative healing methods in an attempt to avoid surgery on my sweet, gentle, compassionate daughter next month.  Yoga, meditation, detox, sobriety and listening to a myriad of intense audio books on my iPhone are all part of this quest.  Is this the ironic culprit of my uneasiness?  I think the last Carolin Myss live seminar injected into my head straight from deep within the rain forest coupled with this horrible murder in our neighborhood, plucked my last foundation violin string.  Lately, I’ve felt grounded, strong, with purpose and now, after a month of meditation, yoga and asking for “God’s” guidance, I’m suddenly shaken.  Trusting in the divine power, I can only conclude this uncomfortable place is necessary for more growth… or is this fear brought on by this murder an unhealthy reaction in desperate need of release?  This Yacht Chef was picked up in our neighborhood by a gypsy cab, tortured and left to die on Mullet Bay Beach.  He was stabbed repeatedly, nipples cut off, eyes gouged out and when the police found him, he couldn’t even give a statement.  He died 10 hours later.  I’m in tears just typing this.  Suddenly I feel unsafe on this island and unsafe in this apartment.  I am trying not to judge this feeling, tagging it with meaningless labels of good or bad, but honestly, I want to crawl out of my skin and scream.  I have a strong urge to take Alexa and George off this island and go back to Florida.  George just walked in the door… I would go for a release run while Alexa naps, but I’m afraid to go alone.  Should I do yoga, swim, meditate, mop these messy floors so our feet bottoms stop collecting layers of sand, clean the guest bedroom since Scott (our co-worker) just left, do laundry, dishes, work on graphics work, update “yachtie moms pages”, finish taking my online web programming class, download my photos from the cameras and upload them to this blog and facebook, anything to find some release?!?!?  I think I’ll go outside in the sunny blue wind in our gated community… with a knife in my right skirt pocket for protection.

Butterflies, beaches, bonfires and a MURDER?!?!

OMG I’m so sorry, I am so far behind on my blogs!  And I refuse to type out any more excuses!  Butterflies, beaches, bonfires and hiking about sums up the last week or so.  Of course add in a bit of work, running, scuba diving and yoga too…. Oh and a murder. 
http://www.thedailyherald.com/islands/1-islands-news/14208-megayacht-chef-dies.html

Island life is great until a fellow yachtie is tortured and murdered right in your neighborhood.  Alexa and I walked to the grocery store today, like every other day, in broad daylight, only this time I carried a knife in my right skirt pocket for protection.

(I will update this blog with more photos within the next couple of days so check back please!)