Thursday, February 23, 2012

One Year Seizure Free!

I think the title says it all. One year ago today Team Kinley gathered, both in person and "virtually" to support a little girl as she underwent a Hemispherectomy. My facebook page was flooded with people in their pink as we waited and waited. Some time around 11 pm, our hero, otherwise known as Dr. Curry, came out and told us that the surgery was a success! Today my facebook page was flooded with pictures of pink cupcakes to celebrate. One year seizure free. A friend of mine told me that last year she was saying just think of where she will be this time next year. Well, here we are, so let me just tell you what she's up to :)

Here is a video of Kinley "running" at home tonight. Please focus on Kinley and not the status of our house :)

She is also, very consistently, able to use lefty. She can put it in her clothes, lift it on to the tray of her high chair, and use it, actually use it, to play. Such an exciting time for Kinley!

So last night I made 100 cupcakes to send to therapy and Jay's office to celebrate. My back was killing me but it was so worth it. And I must say, my piping skills are improving :)

Kiney enjoyed her cupcake in Speech Therapy, where all the therapists, even the ones that don't treat Kinley, wore pink!

We just feel so blessed. Thinking back at how overwhelmed we were with uncertainty of her future, it is just amazing to sit back and watch her grow. If only we had known then that everything would be ok!

So here's to another year, Team Kinley. I can't wait to look back on this day next year and remember it as the year that Kinley started walking, talking in sentences and wowing us all! She has done amazing things in this year, but the best is yet to come.

We love Team Kinley!!

p.s. one final picture just to drive my point home...k right after surgery on year ago.

Wednesday, February 1, 2012

Jay and I have been "celebrating" our one year anniversary of Kinley's hospital stay this week. We started out pretty emotional, thinking about all our struggles and set backs during those weeks, the heartache and uncertainty we left for our baby girl - and how emotionally and physically exhausted we really were. The anniversary of her 2.5 hour seizure that landed us in the hospital was definitely the hardest day. It seems like another life now, but also like it was just yesterday. I can so vividly remember exactly how I felt as I laid there watching my sweet K get round after round of adult doses of every drug they could think of to make her stop seizing. I also can remember how I knew, after getting calls from friends and family from all over the world, that everyone else knew the severity of the situation. Most of all, I remember the little glimmer of hope that we recieved after getting a second opinion from another Neurologist who thought she had been misdiagnosed, fade out and die. Although I still had hopes that surgery wasn't going to come, deep down I knew that was how this would all end.

Except, now, almost a year later, I have learned that surgery was not the end, but the beginning. Call me crazy, but I think Kinley realizes too, that we are coming up to her one year seizure free anniversary. We have been agonizing (and making her OTs share in the agony) over whether or not to give her botox to relax her "lefty". And just like that, in the past three weeks, Kinley has decided to once again make the hard decision for us. Its like a light bulb went off and suddenly she has realized that she has two arms! Oh, hi lefty - there you are!! She has always moved lefty some, when forced! But in the past few weeks, she has not only been moving lefty, but USING it! She pushed a play coin in a piggy bank (see video below), pushed the bottons to make animals pop up on her farm toy, pulls lefty out to set it on top of her high chair, and even gives me lefty upon request when I am getting her dressed - something I have been working on for 11 months! As weird as it seems, its like she has become friends with lefty. She will pat it with her right hand and say "lefty" and use her right hand to pull it up to her mouth to give it kisses. So sweet!

Needless to say, we have called off the botox as there is no way we are going to risk all the progress she is making. We are just so thrilled that she has decided to get on board and use both arms. We have a long way to go, don't get me wrong, but it is a start. And its a great start!

Her speech continues to cause us some frustration. She does a pretty good job at mimicing words that we use. But she will NOT combine them. I know it will come with time, but we tell her 100 million times a day "more please" "more fish" "down please" - and all she does is say the last word we say. Yet, she will "hot dog" "hair bow" "all done" etc. We just don't get it. Again, we know she will get there when she is ready, but that doesn't make it any more confusing and frustrating to us!

We are still trying to get her off "baba" (her bottle) but aren't having much luck. 99% of the time she wont even let us put a cup in her mouth, or anything for that matter. She is back to refusing her medicine and hates when we brush our teeth at night. I know this is all normal, so I am not worried, just ready for the phase to pass.

She has become very attached to her Minnie Mouse doll and even asks for it when she goes to bed. We tried to get her to want a "lovey" when she was younger, but it never worked. Which just proves again that she will do things at her own pace and mom and dad are just along for the ride.

So, as we get closer to Surgery-versary, we will continue to look back at old blog and facebook postings to remind ourselves of how far she has really come. I think if I could have seen ahead at how happy and healthy she would be, I wouldn't have worried about surgery at all. God chose us to have a super special girl, and now we are really seeing how truly special she is! Thank you for all the support and interest in the posts I make. Its always reassuring to know that Team Kinley is still alive and well!!