Sick

It was inevitable. Now that Justin is back in school, we are all sick with colds. For Zane, this means nebulizer treatments every six hours. It also means a temporary hiatus from oral feedings and some of his exercises. He has been coughing a lot with this cold, which seems to be causing him to vomit. At least we hope it is the coughing and not the dreaded return of full-blown reflux.

We’ve been through the respiratory illnesses and reflux issues before. We’ve been very fortunate that Zane has been well through 2009 until now. Hopefully, this cold will be short-lived.

Transition

It is taking a bit longer to receive respite than I thought it would. Like all things bureaucratic, there is SO MUCH paperwork. In addition to signing my name on endless signature lines, a nurse has to come out next week to go over what I do with Zane so that she and I can train the home health providers to care for him. It looks like it will be another week or two before respite is actually in place.

Next week, however, brings the start of some big changes for us. Zane is making the transition from early intervention services to the school system. He has been receiving therapies and services under Part C of IDEA (Individuals with Disabilities Education Act of 2004). When he turns three this December, he will fall under the jurisdiction of San Juan BOCES (Board of Cooperative Educational Services) where Jeff works. At that time, he will be serviced under Part B of the Act. This means that much of his therapy will revolve around how to help him function best in an educational setting. This is a very difficult transition to make, as Zane still needs a lot of help to do the most basic of things. I wish early intervention lasted until the age of five. He could use the additional support. His transition meeting is this coming Tuesday, September 1st. I am a little concerned that our town’s preschool will be unable to provide the environment (and attitude) that we want for Zane. Some concerning things have happened with the director of the school that make me wonder if we should send Zane to a Durango preschool instead. We’ll review all of our concerns with the appropriate people on that day and see what comes of it.

In the meantime, I am attempting to educate myself on IDEA. I am familiar with it from my days as a third-grade teacher. But now I think it is crucial that I become intimate with IDEA—it will only help me to be a better advocate for Zane going forward.

Respite

It must be a dream. It can’t possibly be true. Yet, it is happening. I have called, badgered, researched, hoped, wished, kept my fingers crossed, and given up. Now, after all this time, we are finally getting respite services!

I am in the process of going through the required paperwork with a regional home health agency (not the nasty one who provided “services” through Zane’s Pediatric Hospice waiver, but a nicer and kinder one) to start in-home care for him. I have meetings tomorrow with two more people, then respite care should be official by week’s end.

I am easing myself into the process. It is hard relinquish control of Zane’s care after being in charge of it for over two and half years. While I could have someone come out the house every day of the week, I have chosen a more conservative approach: two days a week for three hours each time. That is as much control as I am willing to give up right now. I am sure, with time, I will grow more comfortable with a stranger watching my precious son. But, for now, I am happy with six hours a week.