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Welcome to Skye's Web Page. Skye Nicole Anastasia was born December 17,2003 weighing 5lbs 12oz. She has been diagnosed with microcephaly, nystagmus, seizures, optic nerve hypoplasia, hypotonia, chronic breathing problems, failure to thrive, brain damage and no mylenation of the white matter in her brain. She is entirely tube fed through her Mic-key button and she also has a broviac for blood draws and IVs. Skye has been through alot. Many Mri's, EEG's, Swallow Studies Upper GI studies, Muscle and Nerve Biopsy, 2 skin biopsies, a Nissen surgery, She has been hospitalized with RSV, Aspiration Pneumonia, ParaFlu, Respiratory Distress Syndrome, and Bronchilitis. Her neurologist in Cleveland believes she has a severe, progressive, metabolic encephalopathy specifically a mitochondrial cytopathy. Currently we are not doing anymore testing. Skye has been through enough. After 9 months of intensive Pt, Ot, and Speech therapy Skye has not progressed but continues to regress. Currently she is under hospice care and I have signed papers for her to be DNR. We have a great support team now of private duty and hospice nurses. Also I have everything I need to make her comfortable including a suction machine. She requires deep suctioning at the least 2xs a day at the most 4xs a day. She has her nebulizer she gets 4xs a day or treatments every 2-4hrs when she is sick. She has her feeding pump, pulse ox to monitor her heartrate and Oxygen saturations and Oxygen which she uses on days when her breathing is labored her stats are low and always at night when she's sleeping. She is my angel sent from Heaven. Her body may not be strong but her spirit is. She is my lil Princess. Skye is a love and showers anyone that knows her with smiles, cooes, and giggles. Please pray for her, for continued health and strength.



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Sadly Skye lost her battle with Mito on March 18,2006 after fighting courageously for 3 months to give me her dad and sisses the extra time we needed to say goodbye. She continues to be a strong presence in our lives by showing us signs everyday. We miss her dearly and ache for her but have peace in knowing she has her perfect body and is playing, running, jumping, and doing everything else in paradise with God and Jesus. Everything that her earthly body could not do. FLY HIGH LIL ANGEL SKYEBABY!

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This page I have also decided to share my battle with Mito. I was going to make my own page but figured I would start here. Currently Mito affects my muscles I have myopathy in all muscles and permanent nerve and muscle damage. I have numbness in my legs basically from the knee down. Sometimes I walk with a cane. I tend to fall down but mostly after I have pushed myself too far. I have an enlarged heart that is not correctly in place making tests on it very hard to do. I have regurgitation in my mitral and tricuspid valves which may require surgery in the future, I also have kidney dysfunction. I have a tumor or calcification blocking my filing duct from my kidney. It is compressing the filing duct which causes me great pain. In October 2006 I had surgery to correct this problem and was diagnosed with a bladder disease called Interstitial Cystitis. My bladder holds less then 50% of what it should and has become rigid. I also have inflammation and ulcers on my bladder wall. My urologist is trying to treat this with medication. I'm on my 3rd medicine with no relief from pain or symptoms. If medication does not help I will be undergoing another surgery to alleviate the pain. I have also been diagnosed with Irritable Bowel Syndrome. I take a lot of medication and part of the Mito Cocktail. My good days are good but on my bad days I can feel significantly ill. Currently I have a wonderful primary care doc, neurologist, cardiologist, kidney oncologist, nephrologist, heart, lung, and vascular doc, and a urologist. I do take medications to help with some of these problems but as we know there is no cure for Mito. I have had problems since youth and after having Skye it all makes sense now. I take one day at a time as I grieve for my sweet Skye and continue with the numerous tests and doctors visits for myself. Pleasee pray for my continued mental and physical health as I continue to walk the journey of Mito disease and grief over the loss of my precious girl. God Bless
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HEAVEN'S VERY SPECIAL CHILD


A meeting was held quite far from earth. "It's time again for another birth," said the angels to the Lord above, this special child will need love. Her progress may seem very slow, accomplishments she may not show, and she'll require extra care, from the folks she meets way down there. She may not run, or laugh or play, her thoughts may seem quiet far away, in many ways she Won't adapt, she'll be known as handicapped, so let's be careful where she's sent, we want her life to be content, please Lord, find parents who will do a special job for you. They will not realize right away, the leading role they're asked to play, but with this child sent from above, comes stronger faith and richer love, and soon they'll know the priviledge given, caring for this gift from Heaven. Their precious child, so meek and mild, It's HEAVEN'S VERY SPECIAL CHILD
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Sometimes I'm sad. I know not why
My heart is sore and distressed;
It seems the burdens of this world
Have settled on my heart.

And yet I know...I know that God
Who doeth all things right
Will lead me thus to understand
To walk by FAITH...not SIGHT.
And though I may not see the way
He's planned for me to go...
That way seems dark to me just now
But oh, I'm sure He knows!
Today He guides my feeble step
Tomorrow's in His right...
He has asked me to never fear...
But walk by FAITH...not SIGHT.
Some day the mists will roll away,
The sun will shine again.
I'll see the beauty in the flowers
I'll hear the birds refrain.
And then I'll know my Father's hand
Has led the way to light
Because I placed my hands in His
And walked

>
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IN LOVING MEMORY


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Journal

Thursday, May 15, 2008 9:03 AM CDT

I've been meaning to come here and update for quite some time. I come here and think about what I could possibly write and I just hit a wall. I guess not being able to update about what Skye is doing day to day just opens up the wound in my broken heart. Lately, I've been so busy living, so busy with Liv and Lex, I don't allow myself the time to think about Skye. It's a delicate balance of being able to live on without her, to give Liv and Lex the happy Mommy they deserve, and not feel guilty about being happy.

I can't update about Skye Coley but I do know that she is looking over me and her sissies everyday. She shows us strong signs from Heaven that the path and journey we walk in living on without her is just where we need to be. Liv has been busy with competitive gymnastics this year and just moved up a level. I can't even explain how far she has come over the past year. It's simply AMAZING!! I had so much guilt that she would never get the "innocence" of childhood back after death visiting her life so early and in such a horrific way. Liv lost the sparkle in her eyes the day she asked me if Skye was going to die when she was only 5yrs old. I remember that day so clearly, we were driving in the car, and I pulled over and took her little face in my hands and told her "Yes, Louie, yes we are going to lose our Skye." At that moment I realized I had to prepare Liv and myself for when that moment came but until then we were going to live BIG and enjoy life and that is exactly what we did. Almost 26 months later, since the day Skye took her last breath, 1 month less then her 27 months spent here on earth with us, Liv has her sparkle back. I never thought it was possible, I must have forgot though, that through Faith and Hope anything can happen.

These past few months Olivia has been so happy, beaming, smiling, a regular schoochy little tween. Her future is SO BRIGHT her childhood of all "normal" things restored. She's my straight A, smart, sassy, competitive, athletic, big-hearted 10 yr old. She keeps me going everyday, together we've begun living again, and it is wonderful, also bittersweet.

Alexa, my Boops, She's playing soccer now. My 6yr old baby. It's hard to think that's it's been 4yrs since I sent her to go live with her Dad and Step-Mom, to give her the normalcy she deserved, and the best start at life. Her personality is so unique, she's so laid back, so loving, and such a clown. Last year, I put alot of my energy into Liv. This year, I concentrated on putting our little family in a better place. Trying to piece us back together after Skye's bright spirit left. I've been fortunate enough to see Lex just about every single day. I'm looking forward to this summer when we will be spending LOTS of time together and going on vacation to Jersey.

Our days together as a family are much like any others now at this moment. We talk about Skye when the girls bring her up. Now the the nice weather is here, I've been enjoying spending the evenings outside peeking at my girls as they play together. It's the most fun when they don't know I'm watching. They are loving caring sisters, who will always carry their baby sister in their hearts, and help their Mommy's heart and spirit shine on.

Skye lives on through the 3 of us. I see her in Liv's smile, I see her in Lexi's pouty face, I know her spirit surrounds us and brings the joy we feel when we are together.

March was a tough month for me, right after Skye's 2nd Angel day I got sick. It knocked me down for a bit, but it didn't take me as long to get back up. Whenever my body hurts so bad, or there's another test, surgery, blood test, this or that, I draw strength from knowing that Skye was so strong even in that broken body she was there and so strong. My memories of her flash in and out of my head sometimes 10,000 times a day, sometimes just 10, but she's always there with me. Sometimes, the bad memories try to jump into my mind, most of the times I just try to push them away, others I know that I need to let them slide through and release my grief. I'll be a grieiving Mother till the day I die, but until then I'm going to live BIG with Liv and Lex. I'm going to enjoy every little moment. I'm not going to sweat the small stuff. I'm going to and AM grateful, for everything I learned from my littlest boo boo. Everyone that knew her is a better person. Everyone that carries her in their heart everyday is blessed.

Our future is bright. Olivia, Alexa, and Me. We are our own little family and although we are missing a big part of us here on Earth, somehow, through God's grace, prayers, hope and faith, we are complete. Happy, growing, blooming, healing, loving, laughing, smiling. Our days are filled with laughter and smiles.......and as we laugh and smile.....the memory I cherish the most.......is Skye's laugh and smile.......as I see the girls jumping on the trampoline, giggling, beaming, I feel and hear Skye......We are living, we are happy, although the guilt creeps up on me sometimes that I shouldn't be happy without Skye here, it's just then at that moment....I get a little sign, almost like her woogee woogee bopping me on the head, Silly Mama......JUST SHINE!!!!!!!!!

Always carrying the Mito Angels in my heart.....
Saying prayers that are battling against this disease.....
God Bless and Happy Belated Mother's Day!

Tamm

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E-mail Author: tamm06@aol.com

 
 

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