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.

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!!

I am a naughty, naughty momma! I just feel like the weeks slip away and then I turn around and its been 4 months since I updated the blog!

Kinley has been making amazing strides! She had a second EEG to make sure that there was no change after coming off the Keppra. EEGs are so terrible - its the only time I curse Kinley's long hair. Thanks to Sesame Street and a bag full of bottles, we made it through. Her results were exactly the same as the last time which is great news! We decided to wait until Kinley has her MRI in late February before making any decisions to come off the last med. The MRI will help us see if all the connections to the left side were severed. We have every reason to believe that Dr. Curry did a perfect job!

Because so many things have been happening, here is a quick summary:

Kinley was an adorable zebra for Halloween. She loved trick or treating and passing out candy!

She is making huge strides in her stepping. In the 11 months since surgery, we've gone from her refusing to even put pressure on her legs, to standing up with assistance, stepping with us prodding at her legs, stepping with support at her waist, and now stepping with us just holding her hands, or even just one hand! And she loves to step everywhere we go. Which is fine now that we can hold her hands - the other way killed our backs!! She is determined to walk, and I really think it will happen soon! In order to assist the process, we saw her Rehab doctor and we are going to order new braces. Her current leg braces have just a strap that goes low across her ankle. The new braces will go higher up her leg and have a second strap around her calf muscle or so! I have very high hopes that they are going to give her the support she needs to take off...alone!!

Her rehab doctor also wants to give her botox. I asked if she could sneak a little to mom...I'm certainly not looking as young as I once did :) The botox is supposed to relax her muscles in her left arm, with the hopes that she would use it more. I am skeptical. Her therapists are also skeptical, which makes me even more skeptical. The problem is that there is no guarantee of how she will react to the botox. When she does use that arm, she uses the little bit of stiffness she has. I am so afraid that if she gets all loosey goosey after Botox that we will lose all the progress she has made. On the other hand, I dont want her to get used to using the stiffness because we want her to learn how to use her arm when its not stiff. So we have an appointment set on Valentines Day - whether or not we keep it is undecided.

Her speech development is coming along as well! She loves LOVES to sing!! Her favorite song is still the Mickey Mouse Hot Dog song, but I would say her color songs (thanks to Grammy) and Head, Shoulders, Knees and Toes are close runners-up! We are still going to music class at Gymboree on Saturday mornings and she loves that too. They have a clown called Gymbo that she adores and they always let her hug him!! So special! She is getting much better about using words to tell us what she wants - including play, hungry and our favorite, all done! We are working on getting her to say "I want xxxx". However, most of the time it turns in to I want momma!! :) Which is ok with me!

We also had a fabulous Christmas! Kinley got a wonderful swing set. If it were up to her, she would swing all day every day! She also got a bike that we are practicing with, but we are experimenting with different ways to help keep her feet on the pedals. We also got a wonderful zoo animal toy that has been great to teach kinley some animal sounds apart from the typical barn animals. All in all we had a great Christmas. K is always so happy and so sweet. She lights up every room she goes in (if I do say so myself). But she didn't care at all about opening the presents. I would be lying if i said i wasnt disappointed by that! But she liked the toys which is what matters most!

We had a very low key new years at my friend Leah's house. We did a girl's night in and Kinley got to play with my friend's little girl, Sadie. She is only a couple weeks older than Kinley so they made a great match! It does still make me a little sad to see kids her age that are able to do some many more things but we are getting there!

Kinley is also turning in to a very girlie girl...wonder why??!! She gets so excited when she can come sit with me when I do my makeup! She calls it up. And she even knows where most of the different makeup items goes. Love the blush brush of course!! And her other favorites - purses and bracelets! She turns anything that will fit around her wrist into a bracelet or purse. And her love for Mickey Mouse is now second to Minnie Mouse. She is always wanting her Minnie dolls and its so cute because it sounds more like Mimmie.

And most importantly, no seizures!!! We are really so blessed that she is seizure free and making so much progress in her development! Her doctors and therapists are all amazed by her! She even has an article in the new Sugar Land Magazine that came out this weekend. The website is sugarlandmagazine.com, click on current issue and you should see the article Caring for Kinley. It was live yet when I checked earlier - it is the Winter edition. She looks so pretty in the pictures and its great to get her story out there.

One quick prayer request for Kinley's warriors...I have been following a blog about a little boy with a rare skin disorder and little Tripp grew angel wings over the weekend. I was really moved by his story and want to send as many prayers to his family as possible. His mom, Courtney, is the most amazing person! Another angel baby watching over my girl!

Thanks for keeping up with Kinley! Oh, and get your check books ready! Its almost time to get Kinley's team of virtual runners together for the Hemi Foundation's annual fundraiser. We got second place last year, which is definitely not going to work this year. We're going big and taking the winning spot! I will send out the sign up info as soon as they are ready to have us!!

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.

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!!

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!!!

Welcome to the new home for Team Kinley!!

I will not give up, I will not give up! I am determined to make this the permanent home for Kinley's blog! This was her original blog, but I gave it up because I couldn't quite figure out how to make the posts exactly perfect. But, I have decided that perfection is in the eye of the beholder, so I will quit worrying and just blog! I am super excited to be able to post pictures and videos...especially now that Kinley has so many great tricks...and more importantly - PIG TAILS :)

There are so many things I want to include in this blog - some of them a bit on the emotional side - so bare with me!

First things first. Yes, Kinley's hair is finally long enough for pig tails! It was about the cutest thing ever and I am not just being biased! I will admit that I felt a bit like a pageant mom as Kinley was screaming and hitting my hand away, but as soon as I was done messing with her she forgot all about the ancient form of little girl torture i just performed and rebounded back to happy Kinley. I won't make her endure this "pain" every day, but it is nice to be able to get her crazy hair off her neck every now and then.

In perhaps more important developmental news, Kinley has started to move her left arm more! It's like something has just clicked...or perhaps in her case, connected! Last night Grammy was playing with her and her ball popper and was helping Kinley use lefty to start the popper. And then Kinley would pick up her left hand, try to get a ball and then gently put it back down. What you say??? You want to see proof??? Well, too bad! I can't get the video to upload - will consult Aunt Kelli and post it in the next blog. I know it might not seem like much to you guys, but trust me, its a HUGE step for Kinley! Then when I was getting her ready for bed last night another miracle happened!! No, she didn't use her left arm to knock over and shatter her adorable red vase with white flowers that has been on her changing table since before she was born...her darn right arm took care of that Sunday night (insert Mom's sobs!!!). Each night I put her jammies on the same way. Feet first, then arms, then we lay down and zip zip zip right up. I always open up the left arm whole to try to get her to put her own arm in and last night SHE FINALLY DID IT!!! I screamed Oh MY GOD and poor dad and Grammy came running in with total panic on their face. Ok, in hind sight maybe I should think about what I yell out, but OH MY GOD she finally did it!!! I really couldn't believe my eyes!

Kinley's communication is improving as well! She is now very consistently signing thank you, please, wagon, hi, bye, all done, duck and her favorite...eat!!! She will also mooooo when you asked her what a cow says, thanks to the fridge farm! We still get lots of da das and ga gas and mom mas and ba bas (bottle) and pa pas. She surprises us every now and then and says a real word perfectly clearly - like diaper or bottle or night night, which is her new thing for telling me she is tired. And she is clicking that she needs to vocalize more for what she wants. Which is great. Her favorite talking place is definitely the car. She will just babble and babble to herself - which is a far "cry" from little baby Kinley that would scream us to where ever we were headed.

Kinley's "walking" is also progressing. Although, just like her mom, she seems to prefer dancing over actually walking. So we take a few steps and then have a dance break :) She still likes her Britney Spears song, but we try to use the Hot Dog song from Mickey Mouse Club House instead. I have video of this too...but unfortunately, I am a dumb dumb. Give me a little time!

My friend at work always tells me that she doesn't have favorite kids, just favorite stages. Now, I only have one kid so it's ok for me to play favorites, but I have to say, Kinley is in a great stage right now. She's really starting to enjoy more "kid" things! We took her to the river house this weekend and she sat in an inner tube playing with the water and splashing! K also still adores our evening walks in the wagon where her favorite thing is to see how many times she can throw her dog out. But mom got smart and tied the dog to the wagon! One point for mom! But then she likes to put the dog that has just been drug halfway around the block into her mouth...Minus one point for mom! She is still being a little toddler when it comes to throwing her food on the ground too, but we are working on that as well. I was going to try the "ignore the behavior and it will go away" theory, but dad didn't think that was helping! So on to plan B....actually start disciplining my angel :( WAHHHHHHHH I think my favorite thing about this stage is that Kinley has started hugging. When dad gets home from work its waving and "hi da da". I never, and I mean never get a "hi ma ma" which is fine. But as soon as I pick her up she goes right to hugging my neck and gives me a sweet little pat pat. She does this at bed time too now when I put her down. I give her a nice long hug, tell her I love her and then....MY GIRL PUTS HERSELF TO SLEEP!! I never thought I would live to see the day! She actually prefers to sleep in her bed, rather than on me :) YAY!!! Its nice to actually have a little time to ourselves in the evening and not spend from 8-10 battling with her to get to sleep. One point for mom!

We have Kinley's first music class at Gymboree this weekend! I am quite excited and hope she likes it! Its for 6-16 months, so I think that Kinley will fit in well. She won't have to feel left out because she doesn't walk yet!

**WARNING: emotional blah blah to follow**

This weekend at the river, Kinley was taking a nap and I picked up "Heaven is For Real". If you haven't read it, read it! Its the story of a 4 year old boy who was having surgery and, even though the machines never recorded it, he went to Heaven for a few minutes. A few months after surgery, he began to tell his father, who happens to be a preacher and therefore knows a scripture for EVERYTHING, about his trip to Heaven. This is a true story. It is just the sweetest thing and really gave me such a sense of total inner peace. Until the chapter on the little boy meeting his sister. Turned out his mom had lost a baby in her tummy and the little boy talked about meeting her. This was, as you can imagine, quite emotional for the parents who had no clue that it was a girl and no real reassurance that she was in Heaven. As someone that lost a little one before Kinley, this had me in a fit. But my emotional downward spiral is not the point...the point is that I hope this can bring a little joy to all of you that have suffered a loss and can find some reassurance that our little ones are waiting for us above! I still find myself, days later, thinking that I need to name our baby because he or she is up there without a name. I am wondering how much begging I would need to do to Jay to pick out a name :) anyway, seriously...read the book!

We also have a new addition this week to our hemi family. The little girl was around 10 months - so close to how old Kinley was. And it just brought back so many emotions. Us "experienced" hemi parents were trying to help the mom prepare for what was to come and it just brought back so many memories for me. She was posting updates throughout the day and it made me go back into the caring bridge blog and read some of the posts I made while Kinley was in the hospital. It was very emotional for me, but just made me realize how amazing these kids really are. In the days following Kinley's surgery, she couldn't even hold her head up - and many of these kids are so drug down by their seizures, that they can't even hold their head up before surgery! And now look at her! She talks, signs, stands, dances, names body parts...even gives us a gig 'em aggies!! Just incredible!

As we get closer and closer to Kinley's EEG at the end of August, I find myself praying more and more. So many of these kiddos have to have repeat surgeries. The thought of that for Kinley just breaks my heart in a million tiny pieces. I am hoping and praying that her EEG is perfectly normal and we can start coming off the meds. Another big milestone in the recovery. But I just can't seem to shake the little thought in the back of my mind - what if something is still going on in there. So Team Kinley - please don't give up on praying for our girl! We still have a long way to go and need your help!

Busy Month!

August treated Kinley well! We had our 2 month dr. appointment at 11 weeks. Kinley is growing fast - she is now 14 pounds, 3 ounces and 24 inches long! This is the exact same size her daddy was at the same age! This puts her in the 95% for weight and 90% for height. She was a brave little girl at the doctor when she got two shots and an oral vaccine. Then we slept for the rest of the day!

Jay had to go work in Austin for a few days so we packed up and hit the road with him. Jay dropped us off in Taylor to visit Kinley's greatgrama and greatgrampa Rose. We had such a great time being spoiled rotten! Kinley gave greatgrama lots of smiles and in return, greatgrama gave me lots of yummy treats and 3 cooked meals each day! We didn't want to come back home!

I also wanted to post some bath pics of Kinley...she really does get crazy hair! I have a feeling she is going to have some curl like her mom. Poor thing :)