Today we were blessed! Andrew started receiving respite care services through an agency here in town. At first it was a little awkward having someone come in our home and feed him, change him, and clean up after him. But, it helped me out sooo much and I was really relieved for the help. I am still working as a speech pathologist with a home health agency here in town but wasn't able to work yesterday due to sitter issues. I was able to work a little today and even run some errands while he slept at home. His attendant wanted to wash dishes and even wash his clothes. What?! What a blessing to have these services and I pray that all families in our situation will take advantage of what we all need and deserve, a little rest!
Our sweet boy is exactly that, a sweetheart. As he gets older I can see that things are going to be more difficult for myself and our family. It has become very difficult to change his diapers and even more difficult to give him a bath because he can no longer sit up for more than a minute at a time without falling backwards. He seems to be more irritable.....maybe I should put him back on the Paxil. He has already lost the use of his left hand and is starting to lose function of his right hand, which makes feeding himself a task. We end up with more food on the floor than what is actually in his belly. I could say that's why he is so thin but he eats all day. Prayers are needed! Please pray for a cure as the latest research has reversed the effects of RTT in mice-what a blessing that this has been found, and pray that I can endure some not so fun back pain.
Rett Syndrome. One year Post Surgery
9 months ago