2/24/11

Emma's Story

Emma was born on February 3, 2006. We were so excited to meet our little girl and her two brothers were excited to meet their little sister. We looked forward to the birth of our healthy baby girl, as nothing during the pregnancy indicated otherwise.
But God had other plans for us and blessed us with an angel who needed special loving care. When Emma was born, she had difficulty breathing on her own and it was determined that she had bilateral vocal cord paralysis. This caused her airway to be closed off, therefore, requiring the insertion of a tracheotomy tube at only 5 days old. She recovered in the hospital for a couple of weeks and then we were sent home.
After being home for about a week or two, we were experiencing problems with feeding Emma and felt as though she was not receiving enough nourishment. At that point, Emma had to be readmitted to the hospital for additional testing. It was determined that it was necessary for Emma to undergo a nissen fundoplasty procedure which narrowed the opening of her stomach to help reduce reflux and the risk of aspirating something into her lungs. At the same time, she also had a g-tube inserted into her stomach to receive liquid feedings, as she was unable to tolerate any food by mouth.
Emma recovered from this surgery and we were sent home once again. It wasn't long after this that my motherly intution told me that something still was not right, as Emma continued to have a lot of problems and did not respond like a normal infant.

However, doctors kept saying that she was going to be developmentally delayed due to all of the procedures and hospitalizations she had been through. I knew as her mother that there was something else going on.

So after much persistence and additional testing, we finally received the news in June (when Emma was almost 4 months old) that she had partial agensis of the corpus callosum. This is a rare brain abnormality that affects your cognitive ability.

Additionally, a diagnosis was given that she had microcephaly (meaning small head) since her head circumference was in the 5th percentile for her age. She was also diagnosed as having overall small brain matter.

Essentially, Emma’s brain had not formed fully.

Due to these abnormalities Emma has a hard time with coordination which affects literally everything from her speech, to sitting up, walking, crawling, picking up and holding things, eyesight, etc.

She also has severe sensory issues and is extremely sensitive to sudden loud noises and “big crowd” noise like ball games, restaurants, etc.

Emma’s eyes were also affected as she was unable to keep them straight due to the neurological deficit. So at the age of 3, she had eye surgery to help tighten the muscles to straighten her eyes and she has done much better since then.

A huge issue that her neurological problems has caused is severe sleep disturbance. For the first year of her life she essentially did not sleep at all. Now almost 5 years later Emma still does not sleep well. There are times when she may only sleep a total of three or four hours over a period of 2-3 days

Because of all her medical issues, she requires 24 hour care.

She has to be suctioned frequently due to tracheal secretions and has to be watched as she likes to try and pull out her trach and g-tube (which she has accomplished on several occasions).

Emma's medical condition requires continual visits with her regular pediatrician as well as a whole hosts of specialists who monitor her needs. She also has to have weekly occupational, physical and speech therapy sessions to help her learn how to do everything.

It has been a very slow process, but she is making progress.

At age 5, Emma is now able to roll over and push up on her forearms while lying on her stomach. She has learned to reach and grab things and can push buttons to make her toys light up or play music.

She is still unable to sit, walk or talk and is in a wheelchair.

She has a special device that we are using to try to help her communicate with us.

She is learning to anticipate things, sometimes not such a good thing when we go to the doctor.

So, I have told you Emma’s condition and what has made her the way she is, but now I will tell you about Emma...

She is a beautiful special little girl who has been a true gift from God. She has a smile that can light up a room. She definitely has her own personality, a little sweet, a little sassy, and a little stubborn. She loves music and lights. She loves to hear children talk and laugh.

To know her is to love her.

I get overwhelmed at times thinking about the responsibility I have been given to keep this angel on earth safe and to give her the best life possible. Caring for her has been the biggest challenge in my life but I know she is here for a reason and I hope I am able to help her fulfill whatever that is. She has totally turned my world upside down, but I would not have it any other way.