Stacey was born full term, and appeared to be just like her siblings. When she was three months old, she woke up one morning very sick and spent 16 days at Childrens Hospital in Los Angeles. It was during that stay that they found her to have a brain disorder called Agenesis of the Corpus Collosum. This finding triggered more testing and as the months went on, we were given a lengthy list, including her 3q deletion.
Stacey has had pneumonia 14 times. ( 9 of which were in her first 2 years!) She was diagnosed with chronic lung disease because of so much scar tissue. This seems to have improved significantly and she is very healthy now.
Stacey has had slow development in all areas, but does make progress. She began walking at 4 years old. She began in a gate trainer, then a walker, and finally onto her own! She cannot run, and her walk is unique. She sort of stomps and keeps her arms either straight by her side, or pulled up to her chest. Until she turned one, no one thought she would ever progress in motor skills as she could barely hold a toy. She had very low tone, we used to call her our little "pasta" because she was as floppy as a noodle!! Little by little, and with much work on her and our parts, she made progress!
We are still waiting for words from her. She communicates very well with her body language, and knows how to lead you to what she wants - such as the fridge or the outside door, or book shelf. She can sign please and all done and we are starting PECS (Picture Exchange Communication System)and she is doing very well with it. She is very affectionate and hugs and pats our backs all the time. She is overly generous with her kisses, and since she is a slight drewler, they are wet! She does "blow kisses" which we try to direct her for other people!
Stacey had been labeled Failure To Thrive as a baby, but now at 5 years old, she weighs 35 pounds and is average height for her age. She is able to finger feed herself, and can hold a spoon, but rarely gets the food into her mouth. She has a few favorites, chicken nuggets, grilled cheese, spaghetti and graham crackers. She chokes easily so things have to be cut small.
GERD (reflux) was something she dealt with for 4 years. She finally seems to have outgrown that too! I kept putting off the insertion of a g-tube, and I am grateful as now she is past the need! She still has some delayed gastric emptying, but she does fine. She needs to have oxygen when she sleeps, for some reason her level drops and her heart rate is fast - (tachycardia). We have yet to find out why, but she doesn't have apnea anymore. She used to have up to 56 spells a night, but they slowly decreased and now they are gone, but her level still drops!
Seizures, now that's a biggy. They started 2 weeks after her 4th birthday. Her first one lasted 45 minutes and took 3 doses of medicine in the ER to stop it. She spent 4 days in UCLA recovering. She was having 1 big one a week, the longest lasted 2.5 hours. We eventually found out she was having 15 -20 a day that were called sub-clinical. We couldn't see anything, but part of her brain would be in "seizure mode" for up to 20 minutes at a time. We changed her to Trileptal and they seem to be under control.
Stacey attends Special Ed Pre School, and will start SE Kindergarten this year. ('04) As far as therapy goes, she used to get everything, and lots of it - now she is in a program called M.O.V.E. (Mobility Opportunities Via Education) and speech.
Stacey is our 4th out of 5 kids and fits in wonderfully. We make an effort to keep a balance, doing things more geared toward her sometimes, and others focusing on the others. She doesn't tolerate loud noises, so movies are a rarity, but when a good one for the kids comes out, we will get a sitter for her and take them. She attends church with us and is in a special class part of the morning, then into the 4 year old class for the rest of the time. She does well and doesn't need a one on one aide anymore.
To any parents just getting started in this "new normal", I am sorry you have to make this adjustment and the realization that your child isn't exactly what you expected. You will soon see your precious child through new eyes, and although the care and special needs can be daunting, you will love and laugh stronger and with more passion than ever before. I still have days when it seems like my life revolves around a disability, especially when a friend invites us to something fun, like the park or beach, and I can't go because Stacey can't handle the heat (triggers seizures). It is frustrating at those times. At the same time, on some of the most stressful days, she will do something so hilarious that all the other "important" stuff seems so trivial. Hang in there. Find support, talk to other parents, take breaks, and enjoy your child as much as you can!
Feel free to contact me at smaccss@juno.com we live in California.