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!!





Wednesday, September 7, 2011

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!!!

Wednesday, August 10, 2011

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!