No April Fools



Not feeling well.
Can not get comfortable

Elias had another seizure yesterday evening after not doing well most of the day. An early warning perhaps? Follow-up call with neurology coupled with the beginnings of a potential second seizure onsetting during the call prompted the doctor to tell us to call 911 and bring him in. The ran every culture and lab they could. The initial labs came back fine and the cultures are brewing for another day or two before the final results are back. In the mean time they gave him a broad spectrum antibiotic to cover him while we wait for pending results.

Finally Asleep just
before seizure

We brought Elias home last night much to our surprise & delight. Made it here around 2:40am. He has restless through the night and slept through the morning - he never does that so you know he isn't well. Been putting everything back together as stuff was everywhere from the seizure med kit to moving things for EMTs. We are both exhausted, but happy to see Elias smiling and feeling a little better this afternoon. Follow up tomorrow with the medical team to see what else they want to do. The positive the rescue drug seemed to work at stopping the seizure and the beginning of the second potential never became full-blown. During the course of the day Elias was vomiting with a little blood in one set, but it was trace so the concern there was minimal. He also potentially has a cold, which for him is very bad. His IGG levels are still very low so there has been concern for immunity issues. about 10 days ago a phone call to the FA clinic earned us a trip in to be evaluated and tested as he was experiencing some issues as well. Nothing turned up, but they suspected he had a stomach bug going around the community. With the low IGG and the school therapists coming in and out it is possible he picked it up.  We will just need to remind everyone that comes about the vigilance we must take. We will try to keep you posted on the outcome. As you can tell between updates, we have been very busy with Elias all around. We are having difficulty keeping up at times. Hopefully we will have a little lull. Overall though there is quite a few positives in all that is going on. Hopfully we can get an update on that stuff soon. Thanks for all the thoughts and prayers.