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.

Doctor’s Office

Today we made a trip to the pediatrician. Ever since the nutritionist advised me to increase the rate of Zane’s feedings, he has been coughing. Typically, this is a precursor to reflux. So I made an appointment. The doctor listened to his lungs, checked his nose, and determined that Zane is not experiencing any outward evidence of reflux. Rather, he has allergies. He comes by them honestly: Justin has them, and Jeff has way too many to count. He now will take a dose of Claritin along with his numerous other medications and supplements. Of course, we’re greatly relieved to know that the reflux has not made a return visit…yet.

Brianna

Please keep little Brianna and her family in your thoughts and prayers. Like Zane, she has a diagnosis of Trisomy 18 and has recently been in and out of the hospital four times. You can see her beautiful self and read about her journey at www.briannagiveshope.blogspot.com

We hope that a second opinion about her current medical condition brings more positive news.

Give Him a Hand

In addition to making great progress in oral eating, Zane has recently started holding a spoon. This is huge feat considering his wrist contractures! At times, he will grasp a toddler veggie stick and feed himself. The crunchy food, of course, requires a lot of monitoring. Zane always bites off more than he’s supposed to, and aspiration still looms as a potential threat.

While most of the credit goes to Zane for his tremendous determination, a couple of others cannot be overlooked. Mary—Zane’s hand therapist—deserves the most kudos for creating hand splints for him since he was an infant. Without them, he would not be this far. Also, Zane’s OT—Sarah—has been working with him for the past couple of months on holding crayons, toys, and utensils. He’s come a long way since she started.

While Zane demonstrates his abilities in the video, no one can accuse him of being a neat freak!

(The link to the San Juan Kids brochure is in the left-hand column. Zane is the star of the brochure thanks to my friend, Rachel).

Telluride

It is amazing! Zane slept through both nights at camp. While we were able to enjoy nice evenings (albeit with quite a few mosquitoes) and nights, Zane did become fussy on our Saturday hike. We attempted to take the Cross Mountain Trail, but only made it to the twenty-minute mark when Zane wailed. We gave him a break at trailside with some sweet potatoes. He continued to border on fussiness, so I took him back to the parking lot in his Kelty carrier, which he inherited from Justin. Of course, after a few minutes back on the trail, Zane was perfectly content. By then, it was too late for me to catch up with Jeff and Justin (I’m a slow hiker). I didn’t get to do what I wanted to do (hike) or see what I wanted to see (meadows and other cool stuff), but I did get to enjoy some nice one-on-one time with my littlest guy in the sweet mountains of Telluride. That counts for a lot!