Brisan and Parker Stults | Living with Niemann-Pick Type C

On Monday Brisan was having troubles with his seizures and his right eye started to look funky again. I think we might buy him an eye patch so he can be a full time pirate if need be. Here are a couple videos we took last night. One of Duncan being silly and a complete cheese ball saying his name, trying to count, and how he has his underwear on backwards.

Also have Brisan getting his treatment done on his G-Tube site. He has a fungus around it and the skin is pretty broken down around the area. You will see we have him in a “onesie” that we cut a hole above his G-Tube. The onesie is so he won’t “play” with his diaper as much but it totally gets in the way of doing his feeds/ medicine. This is the new regiment minus the cleansing wash we have to do recommended yesterday by the doctor. Interesting enough Medicaid paid for most of the supplies but something little that typically would be covered they did not. This is messed up with no private insurance…well at least affordable health insurance. We know the future will be better at some point with this issue but we have to “move along” as needed.

Related posts:

1. Follow Up On Parkers G-Tube Consultation
2. Recap of Week and IEP Meeting Outcome
3. Some new meds
4. Update 11-17-2010
5. Week of 5-17-10