What a crazy, long day! The oncologist decided yesterday that he wanted Jon to be seen by the seizure specialist today in clinic. So they ordered another sleep deprived EEG for this morning and then we went to see the dr. The EEG was the same as the one last week...definitely could be prone to seizures but not seeing much actual seizure activity. Duh!!!! thus the reason we asked it to be done when he was in the hospital and it was happening! But we are just the parents; what do we know????
The neurologist did have some interesting ideas though. She picked up on some new muscle weakness that is somewhat concerning. Both eye lids are drooping today which is different and odd. There is some kind of muscle condition or disease that can cause some of the symptoms we see but not all of them. She did blood work to test for this. It takes about a week before the results come back. She also decided that they wanted another 24 hour EEG. They had an opening today...lucky me! I should have told them no and to wait until next week but I didn't. And so now it has added so much stress and chaos to the weekend.
I am going on a women's retreat tomorrow with ladies from church. Jon has to be taken all the way to Denver just to have the EEG disconneted. Two hours out of the day. Two hours out of a day that didn't have 2 extra hours in it. I think any other time it would be no big deal. But this time it is jut particularly annoying because they are doing it after the fact and will not really see anything... so its kind of a waste of time and money. But I want these doctors to be diligent in finding answers so I am willing to do what they ask at least for now.
The prep for this EEG took forever...long enough to watch an entire movie. So we got on the road late and ended up in rush hour traffic. Jon started throwing up in the middle of this traffic. I couldn't reach a bowl so he was throwing up in diapers. Finally we got out of traffic and I could stop for a little while and get the bowl. He threw up over 17 times...those are the only ones I was able to write down. I have no idea what happened. When we got home, I gave him anti-nausea meds and he went right to sleep. Thankfully he has not thrown up again.
So here we are tonight. I am praying against the attack of the enemy...there is much of this going on in many of the lives of those going on the retreat. God is going to be working in our hearts there and the enemy is not to happy about it. I am praying for wisdom. I am praying for the ability to clearly and confidently express my thoughts and frustrations in a calm and respectful way. And I am praying for the doctors involved to have wisdom to think out of the box and find some answers to wait is ailing Jonathan. Thank you all for your prayers as well. We love you all!