Progress

November? Wow…

The past month we’ve spent at home, we have watched Ethan do better every day. He’s eating more, drinking more, getting stronger, doing more and more physical activity every day, getting more hair, taking meds better, behaving better…it’s getting BETTER.

We continue to go into the Jimmy Fund Clinic every Wednesday. Ethan gets his blood drawn to test for blood levels and med levels. These visits are usually 3 hours. He received a 2nd dose of Darbopoetin yesterday, to stimulate the production of red blood cells, as his levels are slowly declining. This is due to other meds he is on, and is an expected side-effect of them. Other than that, he blood levels look great!

He still has his central line (the tube coming out of his chest), so blood draws are still easy. As of Monday night we stopped his IV fluid, as he’s drinking really well (~50 ounces/day). In a month or two, we can think about pulling the central line out, as clinic visits decrease, and blood draws decrease. Without the central line, Ethan will have to get “poked” for his routine blood draws. If we’re going in once every two or three weeks though, I think Ethan can deal with that. Not having a central line will mean much easier bathing (we can’t get the central line area wet), no daily maintenance (flushing) of those lines/tubes, no changing of the dressing around the area every week (Ethan doesn’t like that), and no changing of the caps at the end of the lines every 3 days! He’ll be a much lower-maintenance boy!

Looking at each day, Mommy would probably say they’re not productive…we’re not accomplishing HUGE projects, we’re not going to EVENTS…BUT, looking back week by week, we’re doing GREAT!

Ethan’s now seeing his teacher/therapist Jane every Monday at our home. He’s starting to wear and adjust to his “new” sound (cochlear implant). Starting next week, Jane will begin doing some work with Ethan while he is wearing only his new sound, not his old one. This is part of the rehabilitation process of his “new ear”, working toward the goal eventually having that ear hear as well as his “old ear”.

Ethan is receiving his Kindergarten work from school. Mommy met with his “would-be” kindergarten teacher Mrs. Budd, and received great instruction/direction. Ethan is excited to receive and complete the work his friends are doing at school.

We’ve managed to have Ethan see a few of his friends outside, either at our house or their house…short visits, keeping distance between the kids, no hugging, etc….but even with these restrictions, that kids don’t necessarily see as restricitions, it’s wonderful. To see Ethan play with his friends. To see that being apart from his best friend for 5 months doesn’t change the way they play now.

While it may be hard to put into words “what we did today”, or “what’s new”, I feel as though things are progressing, we’re taking steps forward, and making really good progress.