Wednesday, September 14, 2011

Medicine and Milestones!!

On Tuesday evening I finally got the call we have been waiting for from Kinley's neurologist. She said the results of the EEG were what we expected. The right side of her brain is still very actively seizing. I know this just sounds does to me too. My understanding of the situation is that even though this is the side that was "disconnected", it still gets blood and is connected by vessels, but the nerves have been severed, which means that the seizures are still happening, they just dont sent out the signal like they used to. We knew this was how it would be so no surprise there. She told us the left side looked good, no seizing. There was a slow wave in the background, but nothing to be concerned about...which is why I wish she hadn't mentioned it :) After a short discussion, we decided there was no reason not to proceed with weening Kinley from her meds. So we started a smaller dose of the Keppra - the drug we HATE - on Tuesday night. It's a big milestone for us and we are very excited. However, there is still a part of me..maybe not quite as small as I would like to admit...that's scared out of my mind to take her off her meds. We have been giving her the medicine for almost a year now and its such a part of the routine around here. Its just so weird to think that we might be back to "normal" after a few weeks. But exciting nonetheless. In all honestly, when I hung up the phone with her dr. I had to choke back this incredibly sick feeling. I think some of it was relief. I had mentally prepared myself for the worst and thankfully that is not the news we got. But that small wave on the left side still has me a bit concerned, even if her dr. is not. I hope and pray (and ask you to do the same) that the wave doesnt get more prominent as we take away the meds!

The other milestone we have is that Kinley made her first transition. For those of you who aren't "down with" therapy talk, a transition is a move from one position to the next...sitting to standing, or in our case, laying to sitting. We have been working for MONTHS to get Kinley to sit up on her own and on Saturday, while at my Uncle Mike's house, with quite an audience, Kinley "fell" down while I sang Ring Around the Rosies, and then she just sat right up :) Thankfully I had my phone handy and snapped a video. I am going to try to upload that it goes.

Now I would like to note another uploads a video (if it worked...can't tell from here) :)

In other Kinley happenings, we had her first trip to Chuck E. Cheese for cousin Brooke's 4th birthday party. I think she was more interested in the pizza than the rides, but she did do a couple of the little rides and seemed to like them enough. Then on Sunday we took Kinley to the zoo. GiGi and PaPa had the idea to take her and Brooke since it was Grandparents Day. We let Grammy tag along for the ride. I can summarize our trip to the zoo with three numbers...100. Yes, that was the temperature. And it was miserable. Kinley sucked down 4 bottles in the two hours we were there and even had a little water, which she never drinks. She couldn't care less about the animals for the most part, and was too hot and tired to even enjoy the carousel. Once mom started getting pissy, we headed home :) Then I got in a fight with my GPS and it was not pretty!! But we made it home, ate, napped, and felt much better.

Do you notice a trend in these pics? Yes, she basically had a bottle in her mouth the entire time :) Which brings me to my past tpoic. We had k's 15 month check up yesterday. She hasn't gained any weight - still 24 pounds (70-90%ile) but has grown almost two inches since her 1 year appointment. She's now almost 33 inches, which puts her off the charts :) Her head didn't really grow much and is only in the 25%ile but we aren't too concerned since me and Jay both have small heads. But to bring this full circle, her Dr. says its time to get rid of the bottle :( I am not sure how I feel about it, but I know it will have to be done at some point. She is holding her own bottle because she can grip the end of it, but has trouble with a cup, even if it has handles because she can only hold the one side and it sort of tips over. Plus, she hates cups and never drinks more than a trace amount from one. So today at Allison's house, I forgot to send a bottle so we had our first cup only day and she did fine. Never asked for a bottle. And even drank a little lemonade from her cup. However, as soon as we walked in the door she said "baba, baba" and of course, I caved. She feel asleep drinking which she never does in the evenings, almost like saying "ahhh, this is so comforting" :) so, that project will be in the forefront of my mind...but I am definitely going to take it slow :) she already looks like a toddler, but she doesn't have to act like one!!

Wednesday, September 7, 2011

EEG...Not so Fun!

It has been a long couple of weeks for us! Last week Jay traveled to Germany for work which meant long days at work for dad, and long days at home for mom! Normally Jay does drop off duty in the mornings, which lets me get out the door early and allows Kinley to sleep a little later. But when dad is gone, we have to get out the door by 6 am...and yes, I am looking for a little sympathy! But we made it, and dad made it home. We had a really nice, relaxing long weekend.

On Monday, Kinley had an EEG. Her Neurologist wants to try to ween her off her medicines - she is still on two meds twice a day. But before we can come off the meds, we need to make sure she isn't having seizures in the background. The test was at 7:30 am, so it was an early morning for all. In spite of all the cute bows that Kinley wears, she actually hates people messing with her hair so we were not very optimistic about this test. And...we were right :) It was terrible. They had to measure out and place 27 electrodes on her head :( she was screaming so loud that it didn't even sound like Kinley. We tried and tried to console her, but it didn't even come close to working. She did finally settle once the electrodes were on and we played Mickey Mouse for her to watch. But then, of course, Mickey had to be shut off so they could flash strobe lights for part 2 of the test. Part three was "well, not that your kid is screaming like a banshee, please put her to sleep". Oy vey! I convinced him to let me pick her up and the poor thing was so exhausted that she crashed after a couple "My Bonnie Lies Over the Oceans" and a bottle. That peacefulness lasted maybe 15 or so minutes before it was time for part 4, wake the kid back up. (sigh). Luckily, they let her watch Mickey again and she was all smiles and "mi ka"s. The test finally ended and it was time for what I assumed would be the most fun part...taking off the 27 electrodes and the tap and "glue" that was holding them on. And it was as much fun as it sounds. Needless to say, we were very happy to head out the door and get back home. Mom and dad were really looking forward to a great, exhausted Kinley nap. Yeah right!!! K decided to stay up and...whine. All day. The poor thing. So I kept her as happy as I could as I dragged her to doctor appointment number 2. She had a follow up appointment with the Rehab Specialist that helped us getting her leg and hand braces. The doctor was cracking up because she couldn't even keep her eyes open. Thanks to rush hour, we had quite a long drive home and she did finally nap for a few minutes. We were so ready for the day to be over.
before EEG :)

one of the "quiet moments" courtesy of Mickey Mouse!

And now mom is fighting a mental breakdown :) It's just funny to me because pre-baby, if we had faced a challenging day, we would spend the rest of the day sleeping, lounging, watching tv, having take out. And now, there is just no down time, and there are so many more stresses. But I guess that is life!

I am really looking forward to this weekend! We have our weekly music class on Saturday, which Kinley loves! And then we get to celebrate cousin Brooke's 4th birthday. Hunting season starts this weekend, so you can guess where you can find dad :) But I am sure he is going to be SUPER appreciative of the time away and will take over and give me a small break when he gets home!

We should have the EEG results in a few days...I will keep you posted. Pray for us! We so desperately want good news!!!