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Digitally Painted by Lavone with Elegantly Painted 
  
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ANNOUNCEMENT:
As of FEBRUARY 23, 2008 we are moving all of Makily's updates to our family blog. It's getting difficult for me to keep both pages up with all the happenings in our life lately. I hope you will continue to follow our family's journey but especially our miracle baby's girl's amazing life.
NEW WEBPAGE IS AT:
www.mynewnormal.blogspot.com
If you have any problems getting there the link is "clickable" at the bottem of THIS page under the "links" section as "Mamma's Online Journal".
HOPE TO SEE YOU THERE!
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Makily Ashtyn was born on April 1, 2004. She weighed 5 lbs 10 oz and was full term. Makily was in immediate respiratory distress and it was discovered at birth she had a cleft palate and 3 skin tags. She was transferred to a level III NICU and spent the first week of her life on a ventilator.
When Makily was 6 days old she was diagnosed with Partial Trisomy 11/22, which was recently given the name Emanuel Syndrome. Having a healthy and uneventful pregnancy this was a HUGE shock to the entire family. We are very proud of how far Makily has come and we thank God every day for giving us the privilige of being Makily's parents. She has taught us more than any scholar, teacher or doctor ever could...and she has never uttered a single word from her tiny lips....she is our miracle angel baby.
JOHN 9: 1-3
As he went along, he saw a man blind from birth.
His disciples asked him, "Rabbi, who sinned, this man or his parents that he was born blind?"
"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life."
Makily's life Montage.
MAKILY'S MEDICAL DIAGNOSIS AND FACTS!
Emanuel Syndrome/Partial Trisomy 11/22
Cleft Palate w/Pierre Robin Sequence
Seizures
Mild Ventriculomegaly
Mild Cerebral atrophy
Thin corpus callosum
Laryngotrachealmalacia
SEVERAL ASD's, with shunting..repaired 7-13-2007
Mild Pulmonary Hypertension
Moderate Cardiomegaly
Mild Tricuspid and Mitral Valve Regurgitation
Severe GERD
Severe Delayed Gastric Empyting
Hypotonia
7% curvature of the spine.
Global Developmental Delays
Past surgeries and Hospitalizations:
April 1, 2004 (birth):
SHANDS NICU x1 MONTH for meconium aspiration, severe pulmonary hypertension, pneumothorax, and genetic issues.
April 23, 2004:
First G Tube placement
July 2, 2004:
Shands for surgery Pyloroplasty, Nissen Fundoplication and G-tube replacement 2 week hospital stay.
September 20, 2004:
Admitted to Shands for leaking G tube with dumping and retching. This ended up in a 4 week hospital stay and Makily going into respiratory distress due to being overdosed on narcotics...she had to be put on a ventilator for 3 days what a nightmare that was.
November 1, 2004:
Admitted to Arnold Palmer's Childrens Hospital Orlando for leaking G tube (you read that right). G tube was removed and NJ placed, Makily also had pneumonia 5 day hospitalization.
January 20, 2005:
Admitted to Arnold Palmer Childrens Hospital Orlando for surgery. Vent tubes placed in ears and ABR done, laryngoscopy with broncoscopy, NJ tube removed, G tube replaced (yes again), skin tags on cheek and in front of both ears removed. Due to Makily's stomach being placed differently (most likely due to all the other surgeries and or mistakes being made by the previous surgeon) the surgeon ended up having to open her up instead of doing the G tube laparscopically.
September 9, 2005
Cleft Palate Surgery. 4 day hospitilzation.
December 14, 2005
Ear Tube Replacement OUTPATIENT!
February 2, 2006
Admitted for 2 days to Munroe Regional for dehydration due to rotavirus.
June 10, 2006
Transported via ambulance to Munroe Regional for seizure lasting more than 20 minutes. Once stable was transported to Arnold Palmer Children's Hospital for further testing and treatment. Was intubated, sedated and paralyzed for 3 days. Ear tubes placed again, 4 day hospital stay.
July 13, 2007: Admitted for MRI of brain, heart cath with ASD closures. OVERNIGHT STAY!
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Please visit Makily's little boyfriend Brennan. He is such a miracle little boy. His site is at:
www.caringbridge.com/visit/brennanhammer
Makily's First Steps
Journal
Saturday, February 23, 2008 10:07 AM CST ******************************************
ANNOUNCEMENT:
As of FEBRUARY 23, 2008 we are moving all of Makily's updates to our family blog. It's getting difficult for me to keep both pages up with all the happenings in our life lately. I hope you will continue to follow our family's journey but especially our miracle baby's girl's amazing life.
NEW WEBPAGE IS AT:
www.mynewnormal.blogspot.com
If you have any problems getting there the link is "clickable" at the bottem of THIS page under the "links" section as "Mamma's Online Journal".
HOPE TO SEE YOU THERE!
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Read Journal History
Hospital Information: Patient Room: 219 Munroe Regional Medical Center
1500 SW 1st Avenue
Ocala, Florida 34474
352-351-7200
Links: http://photobucket.com/albums/v126/Patyrish/ Our Family Photo Album
http://www.c22c.org Learn About Emanuel Syndrome Here!
http://mynewnormal.blogspot.com/ Mamma's Online Journal
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