Today has been a long and crazy day. To begin with I had to get paperwork filled out for Zach for a school camping field trip he has coming up that I had forgotten about. The paperwork is due back at the school by Friday (oops), drop that off at the peds office, drop more formula off at the elementary school for Ellie, then get Jade for her follow up derm appt.
With Zach's paperwork now filled out, the formula in the car, I realized I had to wait to drop by the elementary school and went straight to the high school to get Jade. Her appt went very well and over in a few minutes. Another round of freezing on the wart on her hand, scheduling for another follow up in 3 weeks and we were on our way again.
As Jade and I headed home, we decided to stop by the grocery store and look for something special for Ellie. In the gluten free section, we found TWO kinds of cookies that were casein, corn, soy, egg, nut, free and everything else she is allergic too. In total excitement we grabbed one box of chocolate chip and brownie chocolate cookies and left.
I dropped Jade off at school, and headed home. I now had about 45 minutes before I had to leave again and headed home to relax for a few. With the few minutes I had, this was the perfect time to take care of the neuro paperwork for the next appointment.
I now had 20 minutes until I had to leave again. This was the perfect amount of time to head to the elementary school, dropped the needed formula off to the office, then headed to Ellie's classroom. In a couple hours her class would be having a special authors tea party to celebrate the creation and publishing of their class book. Originally, I was going to attend this little celebration. However, a last minute/urgent appt made that impossible.
While waiting to see Ellie, I got to talk to her teacher for a quick minute and explain to her that she had never had a cookie before and today would be a first for her.
I opened the grocery bag and handed Ellie the cookie box for her to look at. At first she puzzled out what her special treat was going to be. She did not realize she was really holding a box of cookies. Then it hit her. Suddenly, her mouth dropped, her eyes popped, and there was this little gasp, as her hand flew to cover her mouth. All of a sudden, she started jumping up and down as her hand clasped her mouth harder and she held back her scream. The squeal that erupted instead was a tiny delighted scream that would not disrupt the other classes. Yes! I made her day!
Next thing I knew she flew at me with a huge jump, huge, and giant thank you, as she ran into her classroom to put her cookies where she could have them during the activity.
Next, I grabbed my son from the middle school and we left for John's Hopkins for his appt where we sat and waited.
I sat and waited anxiously watching the time go by knowing I was going to cut our arrival at the scout ceremony either late or extremely close. Finally, nearly an hour and a half late, we got in with the neurologist.
Dr K was wonderful and knowing we were running so late now did everything she could to help us get the needed time with her, yet still leave as soon as we could.
We already know that if Corbyn gets up to fast (especially if he has been sleeping) he will get dizzy and fall. We also know that he has been having off spacing episodes and has been losing track of time.
Well the neurologist saw exactly what happens when he gets up to fast and is not worried about those spells at all. He simply has an obnoxious autonomic system that is freaking out as she put it. However, what they are worried about are the episodes that are causing disorientation, loss of time, the stiff and jerky movements he sometimes has, and more especially the fact that he does not know when he is having these.
I was asked if he gets tired afterwards and falls asleep, he right away said "nope I am just fine" as I was shaking my head no letting the dr know he is not just fine. When I was asked I let both Dr K and the head neurologist (when he came in) know that Corbyn does indeed get very tired and will just fall asleep right afterwards. Once I said that, he mentioned, oh yeah, if I try to watch tv or read, I do find I fall asleep without knowing it.
Apparently, these episodes of "spacing out" or what I have thought were spacing out may be seizures instead so he is getting an EEG, and something else done to look for seizure activity. Tomorrow, I have to let the school know that they suspect seizures and that he is to monitored more closely, and anything out of the ordinary is to be reported back to the nurse, then to me, so I can report it to the neuro team.
She is hoping we can prevent future ambulance trips to neuro shock trauma, (not a fun ride) and future ER trips due to this can be better defined. At this point I am just glad we are looking to have a better answer why he is having some of his episodes like he is.
