The guy we're working for!
And on to the more important stuff...
Today Kevin and I skipped work to go to a "Tools for Success" all-day presentation for families with disability. We went to 3 workshops and heard a fabulous key-note speaker, Shelby Nurse, who is a Sr. in a fully included high school, has CP and will be beginning college in the fall.
We got some great info about the MOVE program and special needs trust planning. We were so inspired after we left the workshops, we went by the Social Security office to make an appt. for Camden to apply for SSI Disability! We're going to make it our goal to do start doing one thing a day for Camden during Lent...either making a phone call, setting an appt, taking him to an appt, researching assistance, whatever! We want to start doing more for our guy.
The other piece of news is that Camden had his Ear, Nost & Throat (ENT) appt. yesterday. The ENT Dr. himself was not remarkable. Though a nice guy, he didn't really tell us anything we didn't know about Camden, only not to speculate that he's in any kind of pain when he swallows. He just chalks that up to a developmental delay as well: learning to swallow and breathe at the same time is a difficult thing to master for kids. What he did do that was great is have us speak to his speech pathologist. When we told her we're about 1 month away from placing a feeding tube in Camden, she shook her head and said "No! No tube!" From her perspective, once kids get the G-Tube, oral learning really declines so she's not the biggest proponent for the tubes. She works with other CP kids who are on the verge of getting G-tubes with "Vital Stim" therapy. Camden is considered a dysphagia patient because of his problems with chewing and swallowing. Vital Stim involves putting tiny electrode stickers on dysphagia patients necks and giving a small amount of electricity to wake up the swallowing muscles and produce swallowing. She says it will not harm Camden in any way, the worst part of it will be wires hanging off his neck, which he'll want to take off. This would require a big committment from us, because she wants him to come in every day for 3 weeks to have a meal there at Nemours. Either breakfast or lunch, whichever is most convenient for us. It will be teaching Camden to swallow and we may be able to dodge a feeding tube if this works. How exciting!
So we've got some stuff to think about and things to do to prepare for all of this. I'll try to keep you posted...in all this free time I've got! LOL! :)
