Lucas James Stisher: Update

I had planned on updating the site this weekend by saying "all good"... but now I'm not so sure. We had a pretty good week of recovery, some crying the first few days home, but every day it got better and he's been very happy. Now this weekend, there's definitely something wrong. He's throwing up again (last night and this morning), is lethargic, sleeping more than usual, and his eye is dropping a lot again. The old question remains... is it just a virus or is it the shunt? Of course, we're always suspicious of the shunt and pressure, if it weren't for his eye dropping, we wouldn't be as bothered. And, with Dr. Yaun saying we would "try" this revision first before going to Plan B to clear out the scarring, we're very on edge. We even contemplated going to the ER tonight when he was very limp all evening and started crying for no reason, but he's sleeping peacefully now and we decided to wait until morning before deciding what to do.

On a good note, we saw the pediatrician this week, and all is clear with the ear infection. He said he was very pleased with how he looked and his lungs sound clear again. At least we can put that one behind us.

There are a lot of changes going on with his therapies, but I don't have a lot of time to write much detail. Here's a quick summary... after increasing his therapies from the county to once a week for each (OT, PT, VT), we are now looking into private therapy multiple times a week to increase his motor skill focus. It is going to cost us quite a bit, but we must try some new things. He has fallen very behind and it is becoming a lot more clear lately (as he is not yet sitting up, not even close to crawling, etc.) We have a lot of things we can point to for being behind... surgeries, illnesses, introduction of siezure meds, vision impairment, and limited use of his left arm... all of these compound to create some major setbacks, there is no doubt about that. But, increasing therapies should help, so we are currently looking into a number of options.

We also requested a new OT from the Early Intervention program, after deciding that she is not the best fit for us. She has been very negative lately, and when you're dealing with all that we are faced with, we need the most optimistic and positive people around us. Our PT and VT are awesome, but the OT is missing some things that we feel are important for his success, and quite frankly, my sanity in dealing with her once a week! I spoke with the Executive Director last week and we should be introduced to a new one this week. I am told she will be from the team that has more neurological experience and deals with more medically complicated children.

Lastly, I am so excited about an appointment I arranged for him last week (for Feb 09). Dr. Christine Roman is a well-known expert on CVI (cortical vision impairment). She is an educator, author, and lecturer, and is Director and Assistant Professor of the Program in Visual Impairment at Marshall University. Our vision therapist studies her, and often references her theories, writings, etc. From day one of meeting Beverly (our VT), all I've heard about is Dr. Roman. I just learned that she is in Philadelphia (3 hours away), and that she still sees children. I got to speak to Dr. Roman last week, and she is going to see Lucas!! I am part of a network of other parents with kids with CVI, and have heard nothing but great things about her and how much she's helped them. Some families have driven from several states away just to see her. We can't wait! http://www.wpahs.org/news/releases/index.cfm?mode=view&article=74

I had to end this update on a good note, as I hate to just report bad news. But, we are worried and absolutely sick about the thought of taking Lucas back into Children's for another surgery. We'll see what the next day brings, and I'll try to do better at getting an update up more timely.

Here's a few pics from last weekend, we didn't get quite as many smiles this weekend. :-(

Cutie in his new Rocky & Bullwinkle PJ's