What I've been up to lately...
Troubleshooting my son's shunt. For those of you that don't read his Caringbridge updates (link found to the right in drop down menu) we've been noticing a lot of symptoms that were worrisome. After a series of xrays was taken, the verdict is: It's probably broken! We've been working out the details with his Neurosurgeon in Chicago. For now, we continue to manage his symptoms and will fly to Chicago soon for them to assess the situation and possibly do a shunt repair.
Attending the ASAP Conference in Wisconsin. Yep that's right. I got away from my 4 children (5 if you could the hubby lol) and spent a few days knee deep in medical information regarding my son's condition. My brain litteraly hurt each and every day. There was just sooooooo much to take in. While I enjoyed getting away, and I learned a lot, it wasn't without drawbacks. By Saturday night I was at a major low. Listening as some of the Country's top Neurosurgeons spoke of the debilitating condition my 11 yr old suffers.
Hearing that only 4-5% of patients come to develop Pseudotumor Cerebri (as my son did...such odds!!) was hard to swallow.I listened as they told us that the long term outlook for these kids is not yet known, but that Spinal Cord Function seems to deteriorate sooner and Spinal Cord Fatigue set's in. These words could someday be my son's reality. Especially as I looked around at many of the Adult Patients attending the conference. Many with fused spinal cords, wheelchairs, walkers and service dogs. That provided WAAAYYY to much reality for me for awhile. At that point, I was ready to come home!! I missed my kids and wanted to be with my family.
I arrived home late Monday night and had to get up bright and early Tuesday as my 9 yr old was having his tonsils and adenoids out. Earlier this summer he had a sleep study done to evaluate his crazy sleep terrors in which he get's up and runs around like a MAD MAN. He had circles under his eyes and would fall asleep frequently throughout the day. He was clearly not getting enough sleep. Results of the sleep study came back to show he was suffering from Sleep Apnea and Hypoxia. While he doesn't snore or have large tonsils, it was decided they must come out! Hopefully that resolves the Apnea. I fear something else is causing the Apnea, but I refuse to go into details until I have to. Anyway, the surgery went well and he's resting quite uncomfortable on the couch at the moment. Keep your fingers crossed that this solves the sleep issue.
*SIGH* So that's why I've been on the quiet side here on the blog.
I promise, I will update again soon...