Swallow Study Scheduled

We got a call today from Whit's Pediatrician's office. We finally have a swallow study scheduled at Cook Children's Hospital on February 4th. I am very anxious to find out what it shows. Whitney is still unable to eat anything but pureed baby foods. She can't even tolerate regular food that has been mashed in a food processor because it's too clumpy. Some of her baby foods even have to be "watered down" with milk or formula. She gags way too much for a child her age (19 months). It is frustrating not to be able to put food on her highchair tray and allow her to feed herself, but that is but a minor roadblock in the big picture. I just want to be assured that there's nothing anatomically wrong with her, especially since she had a cleft soft palate at birth. I pray that someday Whitney will be able to eat pizza and chicken nuggets with her brothers. Hopefully this test will show either no problem at all or will guide the doctors to fix whatever the problem may be.

On another note, I am frustrated beyond words with the "system." Before having a child with disabilities I had no idea how expensive things were for these families. Therapy, doctor visits, prescriptions, adaptive equipment, surgeries, mobility devices, etc. are so costly. To top it off, our precious U.S. government and state services are impossible to deal with. We do not qualify for many programs due to income levels (though we don't make much for a family of six). We have been put on waiting lists for programs that offer help to children with disabilities. Some of these programs may take years for our name to come up, and others we may never see. Luckily we are able to utilize ECI (Early Childhood Intervention) services for Whit's therapy sessions, but that will end when she is 3 years old as their program only covers children up to that age. I have been around and around with each entity trying to find help with paying for equipment and medical bills only to be turned down (medicaid, social security, children with special health care needs, etc.) If anyone knows any tricks or has any advice, please pass it along! Whitney desperately needs a wheelchair/stroller and it doesn't look like our insurance is going to be very helpful. These devices typcially cost around $3,000-$4,000. I have looked for used chairs and equipment too, but it is difficult to find pediatric equipment that is in good condition or that fits little tiny girls. It saddens me that this is a problem for so many families with handicapped children.

In the meantime, here is a video taken today of Whit and the many new tricks she's learned recently.