Abby is home!

Happy Labor Day everyone. I am extremely happy to say that we are FINALLY home with Abby. We got home Sunday afternoon to make our stay a total of 5 days! It was a good thing we were there on Sunday though because we got to speak with a neurologist that that we heard was great. Nobody can pronounce his last name, so everyone just calls him Dr. E. We had a lot of questions for Dr. E about Abby, especially regarding her seizure medication. Did we absolutely have to keep her on the anti seizure medication she had been getting during the past few days? Our goal was to keep Abby off any medication if possible. I don't think I've spoken too much about medication and Abby, but given her history with her brain bleeds, her shunt, her feeding tube and all of that, it's INCREDIBLE that she is not on any medication thus far. Kelly and I know in our hearts that her little fighting spirit is the driving force behind this, which is why we were reluctant to just put her on this anti seizure medication full time. The stuff was making her dizzy, and sleepy and just not herself. There is no question that it would be difficult for her fighting spirit to shine through and do what it needs to do if she were to continue this medication.

So what's the big deal you ask? Why not just take her off the seizure meds and go home? After all, it is just the first seizure, right? Unfortunately it ain't that easy friends. It's like this: Abby had a seizure at the same time she spiked a huge fever. We found out that the fever came from a Urinary Tract Infection (UTI). Fevers can cause seizures, but because of Abby's neurological history, she is prone to having seizures so the docs were not ready to say that the seizure only happened because of the fever and call it a day. Okay, fine. I'm on board with that, but why now? She's 2 years and 4 months old. Why didn't she have a seizure before? Apparently, kiddos with neuro issues like Abby can start having seizures at any time. Some will go seizure free for years and then start having them for any number of reasons. Whatever triggers the seizures is different for each kiddo. It's very likely that Abbys fever did trigger the seizure, but there's no guarantee that something else won't trigger another seizure in the future. This is why one neurologist (we saw two) said it would be a good idea to put Abby on the meds now. But Kelly and I were adamant about giving Abby every opportunity to be medication free. Look, we're not ignorant to the fact that she is prone to seizures and that she may in fact need meds down the road. But we would be kicking ourselves if we didn't at least give Abby a chance.

Thankfully, Dr. E agreed with us! He sat with us for an entire hour, answered all of our questions and was on board to let us take her off the meds. Woohoo! No meds for Abby! The only catch was that he did want to send us home with emergency anti seizure medication that is a suppository. He made it very clear that as parents, we must have good nerves, keep our cool and be able to give this medication to Abby while she is seizing. Well, this just happens to be Kelly's specialty so we're good there.

Oh, by the way...we got the results back from the EEG and were told that there was some abnormal activity but it wasn't seizure activity. Huh? Abnormal activity but it wasn't seizure activity? What does that mean? I don't think I really got an answer on that. What we did learn though was that it's better to get one or two more EEG's done on Abby in order to really use this information. For example, if we got an EEG done in a couple of months during a time when there was no seizure stuff going on, but we still found the same "abnormal activity" we would then know that this is just Abby's normal activity. If we don't find the same "abnormal activity" then we'll know that what we saw this past weekend was in fact seizure related activity. Gggggrrreeeaaaaat.... You all saw the pics of Abby hooked up to those wires. Did she look like she was having fun to you? And we get to do that again? Nice. All I know is that Abby's been dancing to her own tune since she got here, so as far as I'm concerned, Abnormal is just short for Abby Normal.

So let's see, what else? Oh yeah. The medication she was on to fight the UTI actually gave her diarrhea, which is bad news for the Abby Girl. You guys remember what happened the last time she got bad diarrhea? That's right, since she doesn't drink very much and can't tolerate very much fluid at one time through her GJ Tube, she got super dehydrated and we spent some time in the hospital because of it. Thankfully we were still able to get her home and we seem to be getting that situation under control.

Well. I think that's it. This concludes yet another incredible fight with Abby in the red corner and The Odds in the blue corner. After a respectable effort by her opponent, Abby has once again beaten The Odds. Nice work Little Miss Magic. Now get some sleep. You got another big fight coming up and you need your rest.

Man I love her.