In May we made the trip to Weatherford, Texas, near Dallas, for the annual Hemispherectomy Foundation fun run. It was really great to meet other hemi families, and better yet, hemi kids! We were amazed that all the kids ran at least the 1 mile family fun and one even ran the 5k! Grammy and Grandpa made the trip with us and Uncle Steve finished out Team Kinley, meeting us from Amarillo. Kinley was a pretty good sport and sat in the stroller for the bulk of the walk, but was able to run across the finish line! And thank you to everyone that registered for Team Kinley. We were able to beat the goal of 10 runners!
Since the Hemi walk, Kinley's walking has really taken off. She is now able to pull herself to standing position using just about anything and can even bend down to pick up toys, etc off the floor. The first night she did it I was cooking in the kitchen and turned around and noticed Kinley wasn't where I had left her! I had actually convinced myself that I left her standing....until I had her sit down and then turned around again to find her walking across the room! And the rest is history. At home she walks freely around the house without any assistance from us! It has definitely taken some getting used to. We are quite used to finding her where we leave her and now we are constantly surprised by little hands on our legs and "Hi momma" when we thought we were in a room alone. But we are just loving it. She always looks so proud of herself and you can tell she greatly enjoys the freedom. Its been a long time coming! The best thing for us is that she is old enough to understand what she should and shouldnt be in to, so we didnt have to do much to child proof, but just have to monitor her and tell her when something is not for her to play with.
Her tall leg braces underwent another round of revisions, with the final decision that they are going to have to be remade. She doesn't really need them for balance, but does need them to help keep her ankles straight. So we go back in a couple weeks to have new braces made - ones that will hopefully not give her poor little feet blisters.
Ok guys, brace yourself for the not so great part...the part of the story that I've been dreading writing for days.
Over Memorial Day weekend Kinley and I went to visit my grandparents. I made several discoveries while we were there - one being that kinley loves to eat raw corn :) The other was a bit more alarming. At dinner one night I noticed that Kinley's eye was twitching and it sent me into a panic attack. Its sad that such a simple bodily function had me on edge like you would not believe! She wasn't eating well and ended up with a fever. I told myself not to worry, sometimes eyes just twitch. I watched her like a hawk and saw it one more time, but again, I told myself that it was a normal thing and to move on. Two weeks later, the twitch came back.
I was pulling up to work when my phone rang...it was Jay. I could tell that he was trying to stay calm, but it wasn't working out very well. He said he noticed that he left arm was sticking straight out and her eye was twitching. I just sat there, looking out the parking garage, knowing what we were about to face. I just kept saying no....no....no. Then of course Jay told me that he was sure it was nothing and let's not jump to conclusions. But we knew. I forced myself to go in to the office and about 30 minutes later I got a text from Allison saying she had done it again. I raced out of there and picked up my sweet girl to see for myself. That day she had 4 "twitches".
We called her neurologist and she said just to monitor the situation and make sure the twitches didnt move or get more frequent. To say we were devastated is most likely the biggest understatement I could make. Of course we couldn't help but assume the worst - the twitches were mild seizures which could only mean one thing - the surgery was not a complete success. The next few days were just a blur. While we were busy wondering what would happen next - medicine? surgery? continued seizures? would they get worse? could they be stopped? we had to put on a brave face as it was now Kinley's birthday weekend and we hadn't really told anyone what was going on. My family came into town and we broke the news to our parents. Obviously everyone was caught off guard. I've blogged a million times that we know her seizures could come back but we never actually believed they would. We just knew the surgeon had severed all the connections and that we would be the exception to the rule...and our family felt the same way. I really never thought we would have a setback like this. But here we were.
Kinley continued to have several episodes each day. Jay and I were struggling to eat and sleep, worried about the days to come. On Saturday, her birthday and the day of her party, I asked Jay if we could just cancel. I wasn't ready for everyone to know what was going on and I had these terrible visions of everyone gathered around to sing happy birthday and Kinley would have a...you know, episode. He said that we weren't going to cancel and that everything would be ok. And the party was great! The decorations were adorable and Kinley was just the cutest little thing! Kinley meet our "year 2 PT goal" of walking into her second birthday party and it was such a beautiful moment!
Everyone was swimming and chowing down on hot dogs and cupcakes and we made it through "Happy Birthday" without a hitch. Then, we sat down to open presents and Kinley had 4 seizures in a row - right it front of all our unsuspecting family and friends....and it about killed me and Jay. I am not sure that most of the guests realized what was going on through the first and possibly the second one, but by the fourth one there was hardly a dry eye in the room and it was just so...awkward. Jay and I were visibly upset and Kinley was pretty dazed. Jay and I sat there debating whether or not we needed to administer her emergency meds to break the cycle and our family and friends were simply watching and waiting. So, we kept opening gifts. And once they were all gone, we ran upstairs and broke down privately. Remember, at this point, most of the people in the room had no idea that we were having these issues and we would have preferred to keep it that way until we had a plan in place. But there we were, like fish in a tank. The emotions were so overwhelming. And having to be strong in front of our guests was even worse.
Needless to say we were very relieved when the party was over and I jumped in my car and got the heck out of dodge. She had two more seizures when we got home, yet I felt so much better than I did at the party. At least we were home and could properly freak out :)
So, to make a long and emotional story not quite so long (or emotional), on Monday we spoke with an epileptologist and decided to put her back on her Trileptol. We are going to try a slightly lower dose than what we were on before and we are very at peace with this decision. In fact, since Monday night, when she went back on meds, we've actually eaten!
Now I don't want anyone to be upset. Kinley has been GREAT on her meds! We haven't seen anything suspicious in over 48 hours. And she is back to being Kinley. Walking all over the house, being silly and making us fall in love with her all over again. The anxiety she seemed to be having the past week is also gone. She was super clingy to me - didnt want to even sit next to me in her high chair and lay down for bed - but that has now subsided. Its an amazing thing now that she really understands what we tell her - I simply explained to her that the meds would make her better and that there was no reason to be scared anymore and the clinginess has subsided. She's also not taking a bottle before bed anymore which is a big step for her...and me :)
So, although we had a small speed bump, we are moving forward full speed! Below is the link to her favorite video. It is quite fitting for our girl and we like to think of it as her theme song :)
Please keep us in your prayers as we know that the meds might not always keep the seizures at bay. Many kids need to have revision surgeries and we now fully understand that this might be an option one day. But for now, we will focus on continued improvement and positive thinking! The show must go on!