Our baby also has:
Microcephaly (small brain, small head) ,
Epilepsy:Infantile Spasms, Myoclonic Seizures, petit mal seizure, grand mal seizures,
Agenesis of the corpus callosum (missing the middle portion of her brain), Sleep Apnea (stops breathing when sleeping), Asthma, Cerebral Palsy, gastroesophageal reflux, non-verbal and developmental delays.
Because of these conditions she had surgery to place a gtube, Nissen fundo application and hernia repair. She will have more surgeries in the near future on her hips and legs due to her Cerebral Palsy.
Mya in her wheelchair/stroller
The first doctor that talked to us about her condition told us to research it. Worst thing to tell someone. The online websites aren't always updated and the first time I read about it the internet stated death by age 2. This completely tore all of our hearts. Somtimes I still get angry and ask why her, why us... I did everything right during my pregnancy and this still happened to us. Some doctors are God sent and others have no idea what their doing. I have been told that my daughter will never smile, will never know that I am her mother, will never sit, walk or talk. But my baby is strong and will prove them wrong.
1. My baby Can Smile! She smiles a lot.
2. My baby has cried out MAMA not once but a few times! She is working so hard in Speech therepy. She even babbles sometimes.
3. My baby can Pull to Sit, she can sit for a few seconds, she can Roll, and she can scoot. Mya at Therapy :)
One thing I know for certain is that Mya is definately here for a reason. She has changed my world for the better and melts everyones heart with her smile.
I have created this go Fund me account to raise money for Mya's special needs bed that her insurance will not cover. I started the process back in August 2014 and insurance denied coverage for her bed even though 6 different doctors wrote letters of medical nessesity. I appeled their decision and they denied my appeal. This is what I have left. We need your help to get Mya her special needs bed so she can sleep safely. Mya has outgrown her crib and wedge. A typical bed will not suffice. Mya must sleep elevated due to her Sleep apnea and gastroesophageal reflux. She needs safety sides on her bed to keep her from falling out. Mya has seizures and can become entrapped during an episode so I cannot have pillows in her bed to keep her elevated. If she gets this special needs bed she can sleep safely and momma can get some rest as well instead of trying to watch her all night.
Special needs bed
So with lots of love and hope... We will defy the odds with your help.
God bless us all, our babies, and every inchstone. Never take a second for granted.
- Jamie Schiefelbein
- Bilyn Doane
- Rose Frankie
- Monica Roberts
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