Ramblings From our Recent Days

Saturday night was our last dinner together before Vada and I headed to Saint Louis. We had something easy and something that left very little of a  mess for me to pick up-- tostada's!

At dinner Kiliegh gave Justin and I our three year anniversary gift (from her). She had made a really sweet card to "Mom and Dad" (her words).  My gift was a dazzling pair of faux diamond dangle earrings that she had purchased from a near by neighborhood dollar store over the summer. She broke them in for me-- sweet girl. ;) Justin's gift was three used pencil top erasers. It was sooo cute. One of the erasers was broke in half, one was worn half way down and the third was in pretty good shape. These are the gifts that I love the most. The ones with heart put into them. I swear I will miss the days where I get odd ball gifts and sweet mis-spelled homemade cards. I stuck the card, erasers and earrings in a baggie. I plan to someday show Kiliegh what a sweetie she was when she was this age.

After dinner Kiliegh played the Wii but before she started she made a play mat for Vada. "So we can spend this time together" she told Justin and I while doing it.

Justin's parents stopped by before I put V to bed. They wanted to get their Vada fill before we headed out for the few days of testing. Justin and his Dad went outside to look at something in Justin's shop and since it was a nice night Annette (Justin's Mom) took Vada outside too. They had been out for only a few minutes when Justin yelled in at me to come outside quickly. When I did I quickly turned back around and grabbed my camera because I didn't want to miss the opportunity to share this visitor with everyone.

Hummingbird Hawk Moth

The trip to Saint Louis was great! Vada slept the whole way!!! She had ate a huge breakfast with Daddy , so she had a full tummy. I guess the key to our successful drive. She stirred a couple of times throughout the drive but never fully woke up until we were about a half an hour from the hotel/hospital.

I thought that the long nap would have interfered drastically with her bedtime but I thought wrong. It was a very minor change from her norm and nothing to complain about. She played in our room (at the hotel), took a bath, played some more and then was asleep by 11 PM. I was in bed by midnight. Not too bad, if I do say so myself! It could have been worse, for sure.

We arrived at the Children's Hospital at 8:30 AM and by 11 AM Vada was hooked to the EEG and was sent to her room which she is now confined to until the testing has been completed. Prior to her being being hooked up we had about twenty minutes of wagon walking through the twelfth floor hallways. She really enjoyed that and since she was already behind on her nap I think that all of the walking also helped her stay calm(er) while getting all of those stinky leads stuck to her poor baby head.

Now, we're in Vada's private room. She's hooked up but is still able to be somewhat mobile. She is scheduled to be here for four days. Although we may be able to leave sooner if we get what we need before the four days are up. They just scheduled it that way so that we would hopefully have enough time to "catch" what we would need. She was scheduled to have a sedated Lumbar Puncture but that was canceled. (Sometimes people who have seizures also have metabolic disorders that can cause the seizures, which was why they had it scheduled in the first place-- to rule out other possible causes. However, Vada had a bunch of labs drawn a couple of weeks ago and they came back fine which is why they decided against this test, at least for now.) So for the time being we wait and watch and I work really hard at keeping my girl entertained...

 At the very least, she's getting fed well!

Seizures and Saint Louis

Im pretty tired right now, so this is my one attempt at an update. I'll fill in what I have left out a little later.

Vada had a DTaP vaccine on August 4, 2011 and I swear that night she began having seizures, again. However, at the time I took her "behavior" as she was having a sore thigh from the injection and maybe showing some irritability as well. I also thought that she quite possibly could be constipated--she has serious issues with being able to poop on a regular basis and we haven't got the Mira-Lax dosing tweaked just right-- yet. I can't say for certain that the DTaP caused the seizures because she had two DTaP vaccines, this last one being her third and the first two caused no concerns. This time is just very coincidental, if you want to call it that. Anyway, a couple of nights passed, she pooped (a lot) and still she was waking up screaming and crying. She would throw herself back and make circular motions with her whole upper body, which, by the way, were kind of frightening to watch. It wasn't until Thursday night when her jack knife motions reappeared or at least when I allowed myself to see them for what they were. Seizures. The next morning I told Justin how she had woke every hour or so, each time having fits. Together we decided that we would work together and try to record what was happening.

On Sunday Justin and I decided that I would take Vada to the Emergency Department of the Saint Louis Children's Hospital. Going through the ED would result in almost immediate treatment verses a possible wait due to office scheduling. The Children's hospital was rated number five out of the top fifty in the U.S. and since we no longer have our Peoria Neurologist this is where our hearts were telling us to go. Plus, the hospital and Neurology staff came highly recommended by people who have gone down this road and who have, in way or the other, came out on the other side.

So that's it. I'm really tired and writing seems like such a task right now but I wanted to post a update for those who were curious. Thank you to everyone who have sent messages to me, who have prayed for Vada and our family and a special thank you to Amy Armstrong, who continues to help me through this, even from afar.

I should know more soon, as in today and when I find something out ill post a update. As far as the videos go I have posted one that is edited, "My Movie" and the ones that follow have not been, they are longer and there is a great deal of time between the questionable seizures where nothing other than rocking, bouncing and or sleeping occurs. If your interested, I would say that the first two show the best of our concerns.

Feel free to ask any questions. I'll answer what I can and find out what I don't know.