Well it's Labor Day weekend and we are spending it like almost all Labor Days in the past years, doing nothing. We did have the opportunity to go to Red River with the Mounce family but we weren't able to communicate and get our act together to go. Very disappointing for us and for them. I know they were looking forward to seeing Andrew. It would have been difficult for us but it would have been fun and good to see everyone. And we love the outdoors.
Lately Felt and I have been feeling pretty depressed and down about life's situation. Things are sometimes hard, it just makes it harder because this is not what we expected in life or for Andrew's life. Andrew has been sick the past couple of days. He got a cold from daycare and you know how that goes, coughing, runny nose, irritable child. It is like a repeat from the beginning of last school year. He wakes up in the middle of the night coughing, and then ends up vomiting. FUN!! I love waking up at 2 am to be bathing Andrew and washing sheets. He is worth it though, I love that little boy! Although he was cleared by HealthSouth from the swallow study for liquids, Felt and I feel that he still has dysphagia and still needs Vital Stim therapy. We aren't sure if we should go back to honey thick liquids, nectar thick?? It's frustrating. I feel like all of those aptmts this summer for therapy were for nothing. I have an aptmt for him to go to a pulmonolgist but really if it is dysphagia there is nothing breathing treatments or a lung specialist can do. Since we can't go back to HealthSouth he is on the waiting list at Warm Springs Rehab. It stinks that they have morning aptmts available but I can't take him because I am at work. Why is everything for these kiddos waitlisted? I don'tunderstand 1 in 150 kids are diagnosed but there is hardly any services for them. I know God is in control but I have to admit that it is hard for me trust and have faith in him. The other night I started crying and couldn't stop as I was trying to get Andrew ready for bed. I have told myself that I am not in the grieving process anymore but I think it is cyclical and I haven't really let myself have a good cry. I don't like to be down about things because it does nothing to help Andrew or us, but sometimes it's hard not to feel this way. I was talking to our PPCD (Preschool Program for Children with Disabilities) teacher about this process. She has a son with Autism that is in middle school. She informed that it doesn't get any easier but that we learn to deal with it better. That was hard to hear.
This week will be difficult for Felt. I will be in Austin Tues.-Thurs. for a workshop and he will be in charge of getting Andrew ready for school, dropping off, picking up and doing dinner and bedtime. Shouldn't be too hard though, I do this everyday.
Please continue to pray for us during this time and for Andrew that we can get him the best doctors and therapist to help him.
Rett Syndrome. One year Post Surgery
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