Thursday, October 4, 2012

Hospital Update

I am typing with one hand so I'll be brief. We made it out of ICU yesterday and are now in a nice private room on the Neuro floor. Kinley is doing well today. Her swelling has peaked and she looks a little rough but  we came up with a new plan for treating the nausea today and it seems to be working. She is taking small amounts of apple juice and ate 2 cheerios, which is a start. She is a bit temperamental and if you ask her the wrong question she gets so sad and does a little whimper. So we try to only ask the right questions! The best news is that her development hasnt seem to be affected at all! So we should get back to status quo pretty quickly! She continues to win the hearts of all the doctors and nurses and they can't wait to see her all better! The highlights have been her visitors! She loves people coming to see her. And of course her "jail breaks" when we get to disconnect and go out of the room. She also loved the CT scan and told the technician she wanted more when it was over, which he said was a first.

It's very easy to stay positive when you have as much love and support as we do. Team Kinley is alive and well!! We appreciate it so much - especially those of you that chose to share her story!

Please keep the free hospital messages coming.

Here are a few pics of our journey so far.

pre surgery fun in Kemah!

right before going back for surgery!

right after surgery

wagon rides!

the swelling begins

the peak of the swelling :( should be downhill from here

Tuesday, October 2, 2012

kinleys surgery

Hi all. Just a quick update to let you know that kinley had her surgery today and it went really well. They started about 10 and were just  closing her up. They said he saw exactly what he was looking for and we able to get it with no problem. We are very much looking forward to seeing her! Please continue to pray that the surgery will be a success!

Thank you for all the well wishes and prayers. We appreciate all the support for team kinley!!

Wednesday, September 5, 2012

When I was pregnant I used to sit in Kinley's room and imagine what she would be good at when she was older. Would she do gymnastics, dance, cheerleading, be a singer, play an instrument, basketball, volleyball? I would find myself actually giving real thought to this question and stress a bit over what she might choose. Today my thoughts are drastically different. All I dream of for my baby girl is seizure freedom. I don't worry at all about the rest. Kinley is the most determined child I have ever met, and she will figure out a way to achieve any goal she sets for herself. But we have to get her to seizure freedom first.

So that's the goal. October 2 she will undergo what we call a hemispherectomy revision surgery, aka a "redo". After the surgery panel met, they decided there was too much ground to cover with a laser and elected for the good, old-fashioned method - they will crack her skull and separate the remaining connections in her right brain. We were stressing over whether to attempt the laser method and prayed for God to help us make the decision. And that's what he did - even though it is a bit disappointing at the same time. We just knew it sounded too good to be true.

And I'm trying. I really am trying. Not sure what exactly I am trying, but I know I am trying for something. I think most of all I am trying to keep a positive attitude. I know this surgery has a 50/50 chance of working or not. We know just as many kids that have had two surgeries as three surgeries. And unfortunately, many of them still have seizures after that. But there are plenty of kiddos that are living a seizure free life. And we will choose to focus on those lucky few. I am trying to convince myself that this surgery is the answer. She is older and her brain is more developed. Dr. Curry is very certain that he can do this and get it all. So we put our faith in Dr. Curry because, well, because we have to. And I'm trying to believe that the second time is the charm because, well, because we have to. And most of all, I am trying to convince myself that the surgery will not have a negative impact on her development. And this is the most trying trial of all. I know that there are a million things that have to go right. And a million tiny opportunities for something to go wrong. And the chance that the part of her brain that is still connected is being used. If this is the case, it will result in a loss of whatever the skill is that is mapped to that location. We don't think this is the case, but you just don't know.

We have just been so blessed, in spite of the seizures, with her recovery. She is a role model to hemi kids all over the world. I get so many messages from the other parents that look to Kinley to see that its possible. Its possible walk, talk, run, count, sing and play on half your brain. And its possible to do it while laughing, smiling, hugging, kissing and high-fiving everyone around you. 

I just want to reassure Team Kinley that she is doing great! She is totally oblivious about what is going on. She started singing her ABCs all the way through this weekend (even though there is definitely progress to be made), still loves her burritos and is really enjoying playing in her kitchen....oh, and watching videos of herself. She LOVES Kinley :) Well, Kinley and Taylor Swift...oh, and this terrible video I found on You Tube one night of The Cat Came Back. Mental note, next time she asks for a song about something, I need to think about modern music and not some goofy song I sung in 3rd grade choir. Because when you find goofy songs from 3rd grade on You Tube, your daughter gets addicted and then you end up with The Cat Came Back in your head for days on end and your daughter walking around meowing. Not good.

Oh, and we did start her on a second med, Keppra, tonight, in hopes of eliminating the seizures before surgery. So here's to hoping. And faith. And trying. We did it once before and we will do it again. Deep breaths for mom...and all of Team Kinley. 

Thank you for all the prayers and positive thoughts and messages to us. We appreciate everything yall do to show us support. 

Thursday, August 16, 2012

Seizures Stink

Well, its been a long two months since Kinley's birthday. We have been very busy, as usual. I have been putting off this update until we have good news to share with you all. Pessimistic Erin says that we aren't quite there yet, but I feel like I own an explanation.

For those of you that follow me on Facebook, you know that Kiney is still having seizures. Although we have made several increases in her medicine levels, we haven't been able to shake the darn things since they started around her birthday. They aren't super scary seizures like before, but present as a twitch in her right eye, or a stiffening of her left arm. So scary to see? No. Do we HATE seeing it? Yes. We don't want to see her having seizures, even if it just looks like a pesky eye twich, which brings me to my next story.

After the 3rd increase in meds, we decided it's time to take further action. We had a good discussion with her neurologist and were extremely pleased that she took us seriously and didn't pass off the twitches as nothing. She suggested another EEG - where they connect electrodes to Kinley's head to detect the seizure activity. This is terribly traumatic for Kinley so we really hate doing it. But, we know its needed so we agreed. As the date got closer, I started panicking that we were going to go through all this and wouldn't capture a seizure. The test is typically 2 hours for outpatients and then they disconnect. I called the doctor back and asked for a longer EEG, which she approved. Unfortunately, they are either 2 hours, or 48 +. I just knew that once she was hooked up, I would whack the guy with a club (or Kinley's lefty which is like getting hit with a club) if we went through the process and he wanted to disconnect before she had a seizure, so we opted for the 48 hour, check into the hospital, EEG.

On Monday we got checked in and set up in our room. It was torture for all involved parties getting her connected, but in true Kinley fashion once they were done, she was a happy girl! I (over) packed many of her favorite items as I knew it would be a struggle to keep her in bed for 48 hours. We were able to let her get up a little, but it was a team effort as she was attached, Avitar style, to many cords coming from her head. She isn't the most steady on a regular basis, but once you add cords to her head and connect them to a backpack she has to wear - the girl is, as she was labeled by the hospital, a fall hazard. So we did our best to keep her in bed, with bribes of Popsicles, cheetos and plenty of juice, which she doesn't typically get. Gigi and Papa brought her some new toys to keep her entertained, which she of course loved! And Auntie M and Jackson brought her the best dinner in the world...a Freebirds burritio, which she devoured.

Fortunately (?) we got plenty of seizures recorded. She had a couple not long after we got her connected, so for us the pressure was off. She took a nice long nap in the afternoon and when she woke up, it was like someone flipped the switch. From 5 pm to about 7:30 pm, Kinley probably had about 30 or more seizures and about 7:30 I was finally called into the observation room, which was pretty cool by the way, and the doctor was waiting to speak with me. He asked if this activity was what we had been seeing to which I said um, no...don't you think I would have mentioned if she was having 40+ seizures a day!!??!! He said that they had more than enough data and that they wanted to give her the emergency meds to make the seizures stop. So the nurses can in to give her Ativan and then she spent the next few hours being super silly and giggling. Then she had the munchies :) Just kidding. They came in to do the strobe light with her and she was cracking up and asking for more. The tech thought it was the funniest thing! We finally settled in for the night about 9 pm. Unfortunately our room didn't have a bed, so Jay headed home. We had a pretty good night, or at least Kinley did! She woke up happy like always and we were disconnected about 11 am. She was so happy to be free! She did several victory laps around the floor, saying hello to all the nurses that remembered us! We felt a bit like celebrities :) They were all very impressed with her walking and talking!

We were a bit disappointed by the info we received before we left the hospital. They basically told us that her seizures were still coming from the bad side - which is really great news! If they were coming from the good side, there is not much we can do except add more meds. They are going to review the EEG and see what they can determine and also did a blood test to see what her med levels are. Then we can adjust accordingly. But, the bottom line is that we will be headed back to surgery.

Many of you have sent me questions about why she would need more surgery - surely disconnecting half her brain is about all we could possibly do. So let me try to explain as best I can. The human brain is very complex. The human brain of a child with Hemimegalencephaly is even more complex. She has one hemisphere that is bigger than the other, which makes disconnecting quite complex. Its not like ok, there are 10 connections so we will count as we go along. They do the best they can and attempt to make all the disconnects, but sometimes there is a missed connection. And if any of the bad pulses escape the bad half of the brain, they still cause seizures. We hoped and prayed that this would not be the case for Kinley - to date her post op MRIs and EEGs led us to believe they got it all. Clearly that is not the case.

So the really complex part of it all is that the right side of her brain is still in her head and seizing. And we knew that would be the case. So, when they try to review the EEG to determine where the seizures are coming from, they see the right side continuously going nutty, which basically makes it impossible to figure out which nutty piece is crossing over, causing the seizures. We have an MRI scheduled for Tuesday, which can hopefully shed some light on where the missed connection is.

So best case scenario, they are able to determine what they missed and go in to fix it. Not as great scenario, they are not able to determine where they issue is, so they perform what is called an anatomical hemispherectomy and go in to remove the entire right half of her brain. Worst case scenario is that they perform one of these two options and the seizures return. But we will cross that bridge if we come to it.

Jay and I are doing pretty well, all things considered. We hate this for our sweet girl, but we do not want to continue seeing her have seizures. Our goal is to make quick, well informed decisions on her behalf. We are so blessed to have a wonderful team of Hemi parents and doctors on our side. The other parents have such amazing advice for us and always know how to guide us when we feel that we are at a dead end.

As for Kinley, she really is fantastic! She is completely oblivious to what is going on and still improves daily. Her latest past time is singing and it is the cutest thing she has done yet! She is obessed with Somebody That I Used to Know and Call Me Maybe - hysterical! She is still super loving and as sweet as she can be. She is now able to walk up stairs unassisted, as long as there is a rail that she can use. And she has conquered slopes! She continues to make improvements with lefty, and we see her hand incredibly relaxed these days thanks to some electro something or other therapy. It doesn't hurt her, but i am still glad it happens on dad's therapy day! But it really has helped a lot! We also have her new leg braces and they have really helped with her stability and endurance. She actually likes to wear them, which is such an improvement over the last pair that never seemed right. She's also very into reading her Jesus Book, which is a rhyme Bible that was given to her by her great grandparents. She's also made a lot of progress with her straw/sippy cup! We were doing much better pre EEG when I still had energy. But I am confident we will get there! And the biggest news - we have moved her to a big girl bed! And she LOVES it! She fell out/got out 2 nights ago and we found her sleeping on the floor so last night we installed the bed rails. She just looks like such a big girl in her bed. But I love it!!

I will do my best to keep Team Kinley updated as we make these next few decisions. Of course we are always accepting prayers and positive thoughts from anyone who is will to send them our way!

Kinley all EEG'd up - not sure why it won't turn upright!

Kinley singing Call me Maybe

Showing off her new big girl bed and the blanket we got to redo her room!

Last minute update: we heard from the Neurologist and we are going to up K's meds again. They will also try to get her on the surgery discussion panel either this or next Tuesday to discuss what kind of surgery they want to do and when. Makes it all seem so real...

Wednesday, June 13, 2012

Never Gonna Quit, I'll Keep Getting Stronger

The time just keeps flying by! Its been a really busy 2 months since I last posted.

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 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 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 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!

Monday, April 9, 2012

Busy Month!

Miss Kinley's had a very busy month! We finally got her new leg braces and they are as cute as I thought they would be! We even found adorable leopard shoes to match and for a full week she totally rocked the look. Unfortunately they gave her really terrible blisters on her right heel and the little bone that sticks out the side of her foot. Once her PT saw, she confirmed that there was a real issue. We took the braces back and had them add a couple pads to help correct the issue. For two weeks now we've been out of her braces...which totally stinks. I think I had a lot of hope that these braces would give her the push she needed to start walking unassisted. So far all they've done is left us blistered and discouraged. I am just not sure that these braces are going to live up to my expectations. Maybe I will be surprised once she is back in them, now that they are fixed. I also think she has a hard time because they are so big that her shoes are now 2 sizes too big so that also takes time to get used to. But when she walked, she was using her hips to help her, which she shouldn't do. So all in all, a bit of a bust in this mom's opinion.

In even sadder PT news, Kinley's wonderful physical therapist will be heading off on maternity leave. We thought we had another few weeks with her, but they know how important it is to keep our time slots and they have 2 openings for us with new therapists. I have spoken to both so I know it will be ok, but Jennifer has been with us since the beginning and it kills me to lose her-even if it is only for a little while. She has worked so hard to make sure Kinley is progressing as much as possible and now she will (most likely) miss Kinley taking off on her own. And Kinley's birthday. This is really hard for me because last year we made a pact that Kinley would walk (assisted or unassisted) into her 2nd birthday party. I think we all know that will happen because she walks great with assistance, but I really wanted her to be a part of it. I feel like she has earned the right to be the one that's there with us when she finally makes the leap to walking unassisted.

We are stilling chugging right along with lefty! She continues to amaze me with how often she remembers that lefty is there! One of the biggest comments that the older hemi kids tell us is that they simply don't remember that their weak hand is there. Every time she eats she asks for lefty to be wiped clean. She uses lefty to play with her toys. Puts bracelets on lefty. And she calls it by name :) People always think its so funny that she calls her hand lefty but it really was a great way to get her to interact with it. People that have been seeing her once a month or so along the way are suddenly amazed when she reaches up and gives a high five and fist bump with lefty! We are now working on getting lefty to open on demand and we are making progress. I think its important that she starts to become aware of her clenching and try to fix it as much as possible. We still wear her soft brace during the day to keep her thumb out and then he hard brace at night to keep all her fingers flat and its definitely working. She hasn't gotten stiff or hooked!

Now its time for frustrated mom to come out. The cup. Ohhhh the cup. I think the cup is THE most frustrating thing we have faced so far. We have tried every sippy cup there is. No luck. We taught her to blow in a straw. Now its a toy. We gave her fast flow nipples to get her used to more liquid in her mouth. We took them away because we want her to work her mouth muscles more. We bought a cup that you squeeze the drink up a straw into her mouth. She cokes or lets it all dribble out of her mouth. Now they keep telling me that open cup is the way to go. But I am actually not on board with the therapists for once. Can you just imagine a 2 year old that has use of only one hand having an open cup as the only method of drinking. Its just not going to work. That would mean that any time she wanted to drink anything someone would have to help. And thats just not practical. I keep telling myself that the most important thing is that she is getting liquids from her bottle and that is something that, in the days following her surgery, we weren't even sure she would be able to do. As my mom said, sometimes its easy for all of us to forget what shes been through because she's made so much progress and seems so normal. But shes not normal and if she has to be on a bottle until she is able to learn another way, then thats fine. These days its rare for her to even put a cup up to her mouth and when i stop to think why that is, its not hard to come up with the answer. For months we have offered her a cup and for months she has been unable to get anything to come out. You think I am frustrated - imagine how she must feel.

And for the even more whiney news...poor k is still biting her tongue. In fact, she is screaming as I type from having bit it again. Its been 5 months now of drool and biting and blood and screaming every...single...night. Her tongue has the biggest sores. I know how bad it hurts to bite your tongue, but to bite it over and over on the same tender place and every time you try to fall asleep you are jolted awake again with another surge of just kills me. And again. Sighs...sighs from mom.

On to more cheery news :) We have also been having a lot of fun! Every Saturday you can find us at Gymboree and she LOVES it! Our class went from just Kinley to now having 5 regulars which is just fantastic! She loves to interact with the other kids and chase them around. And I think she is a natural with the little bell set that you play with a mallet.

We also took Kinley to Galveston and actually made it away from the bay house to the beach...and she HATED it :) She hated the sand, hated the water. All she actually enjoyed was the Wendy's french fries we had on the way back to the bay house. Once we were back she played with a crab and went up and down and up and down the stairs. Mom was sore the next day! We also enjoyed a trip to Chappell Hill to see the bluebonnets. Dad even surprised us and ask his photographer friend to come with us to take some family pics. It was a lot of fun...even if I tend to get a bit crazy when we have out pictures taken! Easter was also a lot of fun! We got to see her cousins and hunt eggs. She loves to spend time with her family and is always giving out hugs and pats. Such a sweet girl!

And finally and most importantly, its time for the annual Hemi Foundation fun run and once again you can sleep in and be a virtual running required!! The deadline to sign up and get the free tshirt is the 14th of April, so you have to act fast. We really owe the hemi foundation so much that we love to use this as a way to pay them back! $30 is the cost to register and the website is - Team Kinley. We are actually signing up to attend the race, which takes place near Dallas! This will be our first hemi event and we are really looking forward to meeting some of the kiddos!

That's all for now. One day I will find the time to update this page more than once a month!

p.s. She just bit her tongue again. Blah.

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!!

Tuesday, January 17, 2012

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, 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!!