1. Enough growth in the next few months to make her a good candidate for airway reconstructive surgery.
2. That she is able to have the surgery and have her trach removed for good before Fall 2010.
3. Strengthening in her hips and legs to help with hip dysplasia.
4. Progress in learning how to eat by mouth.
5. That we are able to enroll her in school this Fall.
1. She has such a bubbly personality and when she is in a group, she is definitely not shy and steals the show!
2. She has not been really sick in a year. She is able to fight whatever she catches and it no longer goes directly to her lungs.
3. She knows about 200 signs.
4. She can speak about 100 words.
5. She has such a great capacity to learn new things, she is like a sponge!
Marissa was born on March 13, 2007 after a complicated pregnancy. She was born with a PDA (heart valve that did not close) and had to have surgery when she was three weeks old to correct it. We knew of many of her issues before she was born but the one that took us by surprise was her breathing problems. As soon as she was born we noticed she had trouble breathing and even squeaked (stridor) when she breathed in. She was intubated immediately after birth. She spent nearly two months trying to get off and stay off the ventilator to no avail. It was determined she was having problems breathing due to her small recessed lower jaw, subglotic edema (swelling) and tracheomalcia (floppy airway that would collapse on itself). It was finally recommended that a tracheostomy be placed. She had her trach placed on May 9, 2007. Because she had lost her natural ability and desire to eat by mouth because of the vent tube, she was also given a g-tube at the same time.
Marissa has no primary diagnosis other than "multiple congenial anomalies" She has several issues other than her breathing and eating, all of which affect her life to varying degrees.
After 2 1/2 months, we were able to bring Marissa home from the NICU on May 31, 2007. Luckily, she has only had two hospitalizations since then, both for aspiration pneumonia. With the help of family, friends, home therapies and a team of great doctors, she is thriving beyond anyone's expectations or dreams. She is a spunky little girl and is the light of our lives. She has the uncanny ability to make anyone who meets her fall in love with her immediately. We love her so much and thank God everyday for the blessing He has given us in her.