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patyrish
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Makily Using PECS board Makily (aka Doodles) is a four year old little girl with Emanuel Syndrome. It causes many medical and developmental problems. This video is Makily identifying objects/people using her PECS board. To follow along with our family's journey and to learn more about Makily and Emanuel Syndrome please visit our blog at: www.mynewnormal.blogspot.com Tags: aspergers autism Emanuel needs OneTrueMedia PECS pediatric special speech Syndrome therapy trisomy |
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EEG on 9-17-08 Makily's six month EEG. This is my daughter having an EEG (electroencephalogram). Makily is a four year old little girl living with Emanuel Syndrome. In June of 2006 she had her first and THANKFULLY only grand mal seizure that nearly killed her. Makily was given SEVERAL doses of IV medication to stop the seizure with no results. The doctors were forced to basically put Makily into a drug induced coma to stop it. She was sedated, intubated and paralyzed for three days to give her body and brain time to rest. She has been on Topomax ever since and has not had any seizure activity since (*knock on serious wood*). To learn more about Makily and our family's life please visit www.mynewnormal.blogspot.com Tags: 1122 EEG Emanuel epilepsy Makily OneTrueMedia Partial seizure Syndrome Trisomy |
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Music and Makily Makily and music! Tags: Makily Emanuel Syndrome Trisomy special needs child music |
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Mic-Key Buttons 101 Makily having her Mic-Key button changed. Makily is a four year old little girl living with Emanuel Syndrome (ES). ES is a trisomy of the 22nd chromosome. It is very rare and causes many medical and developmental problems. Makily having Emanuel Syndrome caused several birth defects including Pierre Robin Sequence, a cleft of the hard and soft palate, suck swallow breathe discoordination and hypotonia (and more). All of these conditions make it VERY hard for her to safely eat orally so she is fed via a G tube. To learn more about Makily please visit our family blog at www.mynewnormal.blogspot.com **any negative or hurtfully ignorant comments left about this video will be immediately removed and you will be blocked* Tags: Makily Emanuel Syndrome tube gastrostomy Mic-Key button feeding |
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Speech Therapy 7-2008 Makily in speech therapy with Mrs. Elon! Tags: 22 child Emanuel Makily needs special speech Syndrome therapy trisomy |
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Don't Bite Your Friends! Makily watching Yo Gabba Yo Gabba Tags: yo Gabba gabba don't bite your friends Makily Emanuel Syndrome |
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The Villages April 2008 Makily's field trip to the Villages. Tags: Makily Emanuel Syndrome Happy baby |
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Our Blessing. Makily's Journey to FOUR! Makily is a four year old little girl living with Emanuel Syndrome (ES). ES is a partial trisomy of the 11th and 22nd chromosome. It causes many medical and developmental problems. To follow along with Makily's story visit my blog at www.mynewnormal.blogspot.com Tags: Emanuel Syndrome Inspirational special needs child praise you in this storm trisomy casting crowns |
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Pneumonia December 2007 Makily had a cold that turned into pneumonia back in December. Seems like she gets it once or twice a year. Last year she also had it for Easter so we are hoping to have a "hospital-free" easter this year! Like I said it started out as a cold and quickly turned into blue spells while she retched. That was very scary and she needed oxygen to keep her 02 sats up. We were in four days. Thankfully our pediatrician is AMAZING and was able to take care of her in our local hospital instead of having to transfer her out of town to Childrens. www.mynewnormal.blogspot.com Tags: Makily Emanuel Syndrome Easter pneumonia coughing retching blue spell OneTrueMedia |
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Singing and Dancing with Makily Makily LOVES pop/hip hop music. We like to dance and sing in the playroom together. Britney and Justin haters STEP OFF! LOLOLOL www.mynewnormal.blogspot.com Tags: Makily special needs child Emanuel Syndrome Trisomy Funny Laughing OneTrueMedia |
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Play Time with Makily Makily playing with doggie, tabletop toy and her new car. www.mynewnormal.blogspot.com Tags: Emanuel Syndrome Trisomy happy baby special needs OneTrueMedia |
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My Montage 2/9/08 Awaiting our foster baby. Tags: foster parenting licensing process adoption to adopt |
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Makily's Wheels Makily driving! We purchased this car for Makily off ebay. Visit my blog at http://mynewnormal.blogspot.com/2008/02/babys-got-wheels.html for link to the ebay seller I purchased this from. Tags: Trisomy 11 22 Special needs toddler car remote controlled |
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Makily's TINY FAST FEET Makily loves dancing! Makily is a four year old little girl living with Emanuel Syndrome. She has overcome many medical and developmental difficulties and is our miracle baby girl. www.mynewnormal.blogspot.com Tags: Makily happy dancing baby trisomy special needs child Emanuel Syndrome |
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Makily's Angels! Makily with her angels Tags: Makily special needs trisomy angels genetic sweet Emanuel Syndrome OneTrueMedia |
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Tiny makily Makily was probably four moths old in this video. You can hear a little bit of the "stridor" she used to have. It typically was much worse than this though. I am trying to find another video that you can hear it better on. www.mynewnormal.blogspot.com Tags: Makily Emanuel Syndrome special needs child stridor trachealmalacia |
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Where's Mommy!??!? Makily is a four year old little girl living with Emanuel Syndrome. We were told when she was six days old she would do nothing. Here she is identifying her Mommy and her baby! :-) www.mynewnormal.blogspot.com Tags: Makily special needs child trisomy Emanuel Syndrome speech therapy |
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Makily's week 8-13-07 Just a week in our life. Going to the doctor, playing and of course therapy! Makily is a four year old little girl with Emanuel Syndrome. To learn more about her and our family please visit www.mynewnormal.blogspot.com Tags: Makily trisomy Emanuel Syndrome pediatric physical therapy standing |
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crazy lady Makily is about seven months old here. We had been in the hospital for weeks at this point. Shands at UF. They seriously put us in a room with a 22 year old psych patient. This woman talked constantly and you couldnt understand much of what she said. Makily sure is cute though. www.mynewnormal.blogspot.com Tags: Makily Emanuel Syndrome special needs child |
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Makily's Heart / Heaven by Live. I made this video the week before Makily had her heart catheterization to repair several atrial septal defects (ASD's). To see the follow up to this video go to http://www.youtube.com/watch?v=NR_4MNwWAPA To follow along with our familiy's journey please visit our blog at www.mynewnormal.blogspot.com Tags: ASD atrial septal defect congenital heart catheterization surgery special needs Emanuel Syndrome |
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Heart Cath ASD's REPAIRED! Makily was born with a congenital heart defect called an atrial septal defect. This is a video montage of the days before the repair of this defect, after the catheterization and tells about the closure of the holes. She ended up having many ASD's instead of just two. We were lucky to avoid open heart surgery. Makily also has Emanuel Syndrome. It is a rare genetic condition that causes many medical and developmental difficulties. To follow along with our family's journey please visit our blog at: www.mynewnormal.blogspot.com Tags: ASD Atrial septal defect heart catheterization congenital surgery |
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A day in the life with MAKILY! **I have blocked the Nazi that suggested we let Makily die. She was getting kicks out of leaving nasty remarks here about my baby and I will no longer give her that pleasure. To all those who have supported our family with your comments and rebuttals to this unfortunately ignorant soul THANK YOU FROM THE BOTTOM OF MY HEART.** I have left up the comments she posted to show others how TERRIBLY ignorant some people ARE towards the disabled. It's 2008 and we are WAY past the days of letting those that aren't "normal" lay in a hospital bed to slowly die alone and in pain.** www.mynewnormal.blogspot.com Tags: speech feeding therapy play Makily Emanuel Syndrome trisomy |
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Our Little Bee This is our Makily taking her first assisted steps. She had just turned three in this video. Makily is an almost four year old little girl living with Emanuel Syndrome. It is a rare genetic condition that causes many medical and developmental problems. At six days of age we were told Makily would never walk or talk. The doctors gave us little hope Makily would do anything. To learn more about Makily and follow our family's story please visit: www.mynewnormal.blogspot.com Tags: pediatric physical therapy walking Emanuel Syndrome Makily hypotonia special needs child |
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Makily laughing... Makily and Daddy playing and laughing again. Tags: Makily play giggle trisomy baby girl special needs happy laugh |
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Makily standing WITH NO THERAPY BALL! Makily standing up with NO support! Just using fingers to balance! Makily is a four year old little girl living with Emanuel Syndrome. She is not quite three years old in this video. At birth we were told she would never walk or talk. The doctors gave us a very bleak outlook and we were left thinking she would be nothing more than a vegetable. This is her standing up for one of the first times. Last time I checked....broccoli couldnt stand up! :-) To learn more about Makily and our family visit our blog at www.mynewnormal.blogspot.com Tags: pediatric physical therapy standing Emanuel Syndrome special needs child trisomy |
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Makily and Daddy Playing. Daddy and Makily laughing and playing together. Tags: happy Makily playing laugh smile tickle |
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Father Abraham Makily with Aunt Cousin Tara singing "Father Abraham" Tags: Sweet funny baby singing laugh smile girl Makily |
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Breathing Makily was born with laryngotrachealmalacia. Long word eh!? It's basically when the trachea and larynx do not harden during embryonic developmenta (wow I sounded smart just then LOL). So when she breathes in her trachea collapses. (much like if you were to suck air through a straw). This is one of the first things I noticed about Makily the day she was born and it was MUCH worse than what you see here in this video. I thought her entire neck would cave in. She was a LOUD breather until she was about 18 months. It slowly got better. She had lots of stridor and respiratory problems as an infant. She is four now (she was about three in this video I think) and it's not quite as bad now. Some children outgrow this but since Makily is four now I doubt it will go away. It does not seem to bother her unless she is ill and then she does have a harder time recovering from your average cold. Her other medical problems add to that too though. To learn more about Makily and Emanuel Syndrome please visit our family's blog at www.mynewnormal.blogspot.com Tags: pierre robin prs trachealmalacia stridor retractions Emanuel Syndrome special needs child |
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Makily sitting down This is Makily sitting down like a big girl. www.mynewnormal.blogspot.com Tags: pediatric physical therapy standing sitting Emanuel Syndrome special needs child trisomy |
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Makily Standing Makily standing up with no help! www.mynewnormal.blogspot.com Tags: pediatric physical therapy standing Emanuel Syndrome special needs child trisomy |
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