Contact: mileen@earthlink.net

I have a 2 year old son with R.T.S. He was diagnosed at Childrens Hospital in Seattle when he was a week old. He was born with several heart defects, broad thumbs and crossed second toes. He weighed 9lbs at birth which is probably why he has done so well. He had surgery to close his PDA at 10 days old, but since then he has been extremely healthy. He has never even had an ear infection. I strongly believe that alot of that is due to the fact that I breast fed him (and am still) as soon as the doctors in the hospital would allow me. I was extremely persistant and it was not easy, especially with sceptical nurses looming over my shoulder, aiming their sugar water and formula retorics at me. I strongly encourage other mothers with babies with RTS to be patient and not to give up on breast feeding if it is an option. I would love to offer support and advice to anyone who is struggling with this, please e-mail me.

My son, Osiris, (pronounced Oh-Sigh-ris) has been very lucky. He is considered a mild case and is very functional. His growth and weight are in the 50th percentile, which I gather is uncommon. However, a few weeks after his second birthday, he is still not walking without assistance and he is not speaking. He is learning a few signs and he points and grunts to communicate his needs. He has a depth perception problem, which may be why he won't try to walk, and he wears glasses to correct a lazy eye. He whines alot, which can be very unnerving, but I can imagine that it must be very frustrating for him being unable to communicate. His cognitive skills are age appropriate. He is involved in the birth to 3 early learning program offered in our area through the public school district. He is also seeing a P.T., S.T. and an O.T. who is helping us with some of his oral motor issues. He has trouble chewing and swallowing and tends to over stuff his mouth and this triggers his gag reflex. Lots of throwing up going on.

I am a single mother and a full time student, I am working towards a Masters in Special Education, with a specialty in art therapy. We are a very busy family. Osiris has helped me to find my calling in life. I am constantly learning from him and feel so blessed to have him in my life. He is a sweet, cuddley, happy, curious and good natured child. Although sometimes we get frustrated with each other, mostly we just really enjoy every minute of our time together. He loves the outdoors, water, animals, music, babies,looking at books and getting his hands into all kinds of messes. He is extremely receptive to textures and loves to make art projects. I have a wonderful and supportive mother, younger brothers and a sister that are a huge help and who love Osiris and appreciate his sweet prescence and all of his differences. He has helped us to see the world through his eyes, and that has made all the difference. We never take any accomplishments for granted, now matter how small.Through Osiris, I have witness the true meaning of miracles. He is enabling me to look at the world in a differnet way. I now am able to see ignorance, cruelty and prejudice and rise above them, with soaring pride and love for my very special little angel. Everyone says he looks like a little cupid, and today, Valentines day, is the 2 year anniversary of the day I finally brought him home from the hospital. I would love to hear from other parents, and to help in any way that I can. Thank you for helping to educate the world on these wonderful children.

Sincerly, Mileen Gilkey