I would like to fill you in a little about Mary Elizabeth's Mitochondrial Encephalomyopathy and some of her daily needs.  You can read more about Mitochondrial diseases on http://www.umdf.org. Mary Elizabeth had her first apnea episode when she was 13 weeks old. I had just laid her down for a nap and was going to fix me some lunch. I felt uneasy and went back to check on her. She was completely blue and not breathing. I called 911 and started CPR. We had to learn infant CPR before she could be released from Egleston Children's Hospital after her two week stay there. She was transported there by angel flight when she three days old after a very traumatic birth. By the time the ambulance got to the house she was breathing again.

 

We received the call from the doctor on Mary Elizabeth's first birthday that she was diagnosed with Mitochondrial Encephalomyopathy. This was determined from a muscle biopsy. We were told that Mary Elizabeth would not
live past the age of 3. She did almost die when she was 3 but she pushed through it. 

 

She has apnea episodes where she stops breathing mainly at night. She may stop breathing anywhere from 3-14 times a night. She has central and obstructive apnea. Central meaning that her brain just doesn't tell her to breath. Obstructive means her muscles may be weak in her throat and blocking her breathing. She is a very positional breather meaning we have to re positioner her at times to help her breath better. She is on a pulse-ox monitor at night so we know when she stops breathing. The machine alarms when her oxygen gets low. Sometimes the alarm will wake her up and she will start breathing on her own. Other times we have to go in her room and re-position her, wake her up or massage her chest. She has oxygen when it's needed. She also has a suction machine if she gets too congested. She has breathing treatments when they are needed too.
She is medically fragile meaning that she picks up infections very easily. If someone comes around with a runny nose she will usually get it but usually it turns into pneumonia and we end up in the hospital with her. 

 

My favorite time is when I go to get her out of bed in the morning. She smiles the sweetest smile and lets me know everything is going to be alright. She is completely dependent on her daddy and me. Her day is filled with being fed, getting her meds, changing diapers, playing, watching tv and some therapy thrown in there here and there.

 

Mary Elizabeth has a wonderful teacher that she loves dearly. Her teacher comes into the home twice a week. Her physical therapist on the other hand is not her favorite person. She has been seeing Mary Elizabeth since she was three months old. She is a wonderful friend and therapist. Mary Elizabeth loves it when she comes to visit us but not when she comes to work with her.

 

Mary Elizabeth loves to go to church. She loves the music. We are not able to go in the Winter with all the sickness going around. It makes for a long Winter but we make up for it by enjoying spending time together at home.