Well, the last time I formally wrote about Melissa was in the April 1995 issue of the newsletter. I thought since I needed to fill some space in this newsletter, I would give you all an update on what’s happening with our daughter, Melissa.

Melissa turned eleven years old last November and is currently mainstreamed in a 5th grade classroom in public school here in a suburb of Minneapolis, Minnesota. She is truly a Minnesota kid and loves winter and playing in the snow. Since she has been healthy, and not metabolically unstable for almost "five" (knock on wood) years, I don’t tend to cringe when she does go out and play in the cold and snow.

She continues to get all of her nutrition from her "NG" tube. (NG stands for nasal gastric) Yes, we have continued the use of an NG versus a G-tube, mainly because, well, we just haven’t had any problems. She has been putting down her own NG since she was about four years old…and just recently we moved up to a bigger NG tube (10 French), in order to make her bolus feeding go a little faster, and not so difficult to push with the syringe. Since going to this bigger NG, she has been able to perform the bolus herself! I have to admit, even though I do supervise her, it is a great relief on me and my arm muscles! She is very proud of herself, and I am even "training" her to measure her own formula. Her formula consists of Propimex-2, 80056, whole milk, water, one jar each of Gerber’s fruit and meat baby food. I believe adding the "real" foods has contributed to her good health.

Melissa does not really see herself as different, and is a very happy-go-lucky child. She is developmentally delayed and has attended private speech therapy for the past seven years. Her speech has moved up to about a 6-year-old level, and reading is on a 3rd grade level, and math is about a 2nd grade level. She does have private tutoring, and even though she is labeled at school as "Mild-to-Moderate Mentally Impaired," she does function much higher than similar children with this label. She does have good memory skills and is always eager to learn.

She is currently in a Special Olympics Gymnastics team, and last summer proudly won four metals at the state meet. She is also taking swimming lessons, and is on an adapted t-ball team in the summer. She has been involved with Girl Scouts the past few years, but of course, I’m one of her leaders and I’m always advocating for her to be included in typical activities. Her social skills are obviously delayed as well, but after children get to know her, they do enjoy playing with her. She is definitely a "daddy’s girl" and enjoys helping her dad work on his car, or go for a motorcycle ride.

She started a new school in our new neighborhood this past fall. I had her dietician, Dorothy Markowitz, come and speak during "Disabilities" week and she did an awesome job explaining "diets" and Melissa’s disorder. I think that the kids now have a better appreciation for her. She recently went through some oral surgery, and while we were anxious about her going under anesthesia, she again amazed us by going through this procedure with flying colors. The dentist removed eight of her baby teeth and polished and cleaned her teeth. I had heard of other PA’s that have teeth problems, mainly due to the lack of protein. Her enamel on her teeth is not very strong and her gums had overgrown onto her baby teeth, thus not allowing them to loosen and come out. Thankfully, I found a great dentist who specializes in special needs that has managed to keep her teeth in order. Teeth can be such a "social stigma" to other kids when they don’t look good. Another problem with "fitting-in" to school has been an "odor" that she has sometimes, especially when she sweats. I believe it’s the Carnitor®, and her metabolic doctor, Sue Berry, is going to look into this, since she has heard of other PA’s with this odor problem. If you have any solutions to this, please let me know!

I enjoy sharing my story with all of you, and also producing the OAA newsletter. Knowing that other families can learn from our experiences is so rewarding! Please feel free to call, write, or email us if you have any questions!

The Stagni's
13210 35th Avenue North
Plymouth, MN 55441
763-559-1797
LeeKatMN@aol.com