More Helmet Drama and EEG results

****Update*****

Whitt and I are flying out Wednesday for an appt.! Getting a little nervous about the way his head is shaping out.

*************************************************************************************

Well, after having his helmet back on for one day....it's back off!! I took it off yesterday for his "hour off" and noticed the skin under the side-burn part of the helmet was really red. Rubbing is normal and red spots are normal but only if they disappear with in 30 minutes. Whitt's was pretty red for about 3 hours....and is still a little pink this morning. So he definitely had some rubbing that caused a little break down in his skin. We are just going to keep it off for now. It is so tight on his head that I can't even close it. Sweet baby's head is just growing like a weed! It's frustrating being so far away from the treatment center because when things like this happen we can't just go in and get it taken care of. If we hopped on a plane to go right now, it would be over $500. I'm still having a hard time deciding what is going on with his head. Sometimes it looks totally normal, but other time it looks off. Crossing our fingers and hoping for the best. We don't have an appt. until 2 weeks from today....because we had to get the internet special for our flight.

It also occurred to me that I never posted about Whitt's EEG results. He had to have and EEG about a month ago to rule out infantile seizures. The results were normal....thank you, Jesus! He was doing (and still does) this little shiver, like when you have a chill go up your spine or when you've eaten a lemon. I had noticed him doing it for a while, but we just laughed and said he was having the hibbie-jibbies. Well, the day he started wearing his helmet 23 hours a day, he did it around 20 times in about 30 minutes. Long story short, Josh called our pedi, they wanted to see him that day, we recorded it on video so we could show the doc, he watched it a few times, he told us it was probably nothing but wanted to do an EEG anyway. So we did! The process is grueling. I let him go to sleep the night before about 6:45. Woke him up at 9:00 p.m. and kept him up until 11:45 p.m.. He slept until 4:30 a.m. when I had to wake him up and keep him up until the EEG at 8:00. Babies have to be sleep deprived to get an accurate reading. He took it all like a champ. We just played and played until it was time to go. He was great until about 7:30 and the melt down began. They glued all of the nodes to his head while he screamed bloody murder and then we had to wait for him to fall asleep. It took about 15 minutes of screaming before he passed out.....only to wake up about 15 minutes later screaming again. He was obviously just beyond his limit and couldn't get settled. He finally fell back asleep and slept for the remaining of the test....20 more min....to be awoken by strobe lights trying to induce a seizure. I had to go in there during that time and hold him to make sure he didn't fall off of the bed. I dang near had a seizure myself! ha! Anyway, we got the results about a week later and he's fine. We've come to the conclusion that he "shivers" because he's having a physical response to something....like eating, peeing, pooping, tired, and in the case of 20 shivers in 30 minutes....HIS HELMET!!!!!

Oh and Coop had to go to the er the other night because of croup! Boo......

All this to say......we are broke due to medical issues...and a $500 trip is hard on the wallet! So, I'm hoping we don't regret waiting this noggin thing out.