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 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!!

1 comment:

  1. Kinley is amazing!! Thanks for sharing your story with the world!