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 crazy...it 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 video...here it goes.
video

Now I would like to note another milestone...mom 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!!





5 comments:

  1. everything sounds great. even though the zoo trip was a hot one we still had some good pics. can't wait till it cools off some so we can do it again! :)

    Papa&GiGi

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  2. Praise the Lord! I'm so glad she's doing well. Will definitely be praying that weening off of the drugs goes well. God bless!

    Jonathan Fashbaugh

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  3. Yay for Kinley getting to sitting up on her own! My son does therapy as well, I fully understand how exciting these milestones are! :) He is 2 and finally almost walking..its been a long drive to get to it, I'm so glad he's finally almost there. He was also on a bottle until about 18 months, where he went from 2 bottles a day to none, because I just took them away. He didn't care at all! I only kept them so long because he wouldn't drink milk from a cup, but I knew he needed the nutrition from it since he was always lower percentiles. He just decided to drink it from the cup from then on which was awesome! He also didn't ever really take to a sippy cup, he has always preferred ones with straws. Maybe she will like those better too? But don't feel bad about the baba's, it will happen! I will pray for the best with the weaning of the meds, I hope all goes well!

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  4. Well, tried to post a nice encouraging something, but it disappeared. I think I didn't pick the the correct thingy at the bottom. Oh well, I'm thrilled to hear Kinley is doing well, especially with sitting up! May what the doctor said is nothing to worry about, simply just vanish, and the medication reduction work out wonderfully!! Just for fun, I'm going to pray for cooler weather, so Kinley can try the zoo again, and be able to enjoy it!! May God continue to keep your family strong!

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  5. Hi Kinsely
    My name is Jenna and i came across your site. You are a beautiful and pretty little girl. You are a courageous, strong and determined fighter. U are a brave warrior, smilen champ and an inspirational hero. I was born with a rare life threatening disease. I love it when people sign my guestbook. www.miraclechamp.webs.com

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