Updates and Celebrations

Well, I figured it was time to post again and keep everyone up to date on Kinsley’s goings on! We’ve had a very busy couple of weeks. Kinsley (and her mommy and daddy) have met with a new doctor, she had a speech therapy evaluation, she turned 1 year old (!) and had her second Christmas, but the first one celebrated in Alabama!

I guess I’ll begin by telling about Kinsley’s medical updates. Two days before her birthday we met with a developmental pediatrician who will be one of Kinsley’s doctors for many years to come. This was our first meeting with Dr. Karkos and we were a bit hesitant going into this appointment mostly because she works in the same clinic as the unnamed terrible neurologist I mentioned in my last post. However, thankfully, Dr. Karkos was MUCH better than him and we are very happy to have her on Kinsley’s team. One thing we found out at the appointment is that she has worked with three other children before who had one of the syndromes that it is suspected that Kinsley has. First of all, we were very surprised and greatly pleased to get this news simply because as of yet we had not met with any doctors with any experience with WWS or MEB. She stressed that her experience was limited, but we were just happy to know she has ANY experience with it. The other great thing she told us was that based on her experience, she thinks Kinsley “is AMAZING.” Those were her words. She told us that having read about Kinsley’s condition ahead of time, she was expecting something different than what she saw when she actually met Kinsley. She told us that Kinsley is the most well off of the babies she’s worked with with these syndromes. So, suffice it to say, her encouraging words helped win us over. Other than that we didn’t get a whole lot more new information. She mostly explained how she will be helping us as one of our doctors – making sure Kinsley is receiving all therapy, treatment, equipment, etc. that she may need in the years to come. That was the main extent of the appointment. We will see her again after six months.

In other medical/development news, Kinsley finally got to have her speech evaluation a couple of days after Christmas. As expected, she has delays in both expressive and receptive language. We were already aware of this, but in order to receive the therapy there has to be an official evaluation done to get insurance to cover the therapy. Having been through three other evaluations before, we are aware that now we will wait for paperwork to be filed, passed to the pediatrician and back to the therapists and then another meeting before therapy actually begins. So, it will probably be three-four weeks until then. Once it begins, she will go one or two times a week for 30 minutes a piece. Please pray for it to begin soon as I am anxious to get it started. If this therapy goes in any way like the rest have then Kinsley should make great gains with it. I am praying so hard for that because I want so much to have some form of communication with our little sweetie. I will say I have hope because in the past few days she has begun to babble more – putting multiple consonant and vowel sounds together in longer strings. She’s done this some before, but not as much as she has the past two days, so please pray that it’s progress. Also, she seems to be learning how to give kisses! I don’t think she understands the word yet, but she definitely seems to understand that when I pucker my lips that she should lean forward and put her mouth on mine. So I’m taking these things as signs of more good things to come.

As for the rest of life, things have been super busy. Kinsley had her first birthday!  Praise God for a wonderful first year with our sweet girl with no sickness to speak of. Knowing what we know now about her condition, we know to thank God for each year that our sweet girl is with us and take each year as a blessing. We just pray that we have 100 more to come! To celebrate her birthday, we spent the night with Luke’s parents and had a small party for her and Luke’s brother, Jared. Kinsley and Jared both have December birthdays, so they got to celebrate together. Unfortunately for Jared, I think Kinsley’s birthday haul somewhat out did his. :) Unfortunately for Kinsley, her mother is not too bright and I scheduled her 12 month shots for the same day! Therefore, she was not in a good mood the rest of the evening as you will see in the pictures below. Presents were not all that exciting and singing "Happy Birthday" brought out the bawling. She did stop crying when she got to try her cake! That definitely got her attention and had us all laughing.

The next evening we began our journey to Alabama for Christmas with my family. And what a busy journey it was. We stopped that night for a wedding in Eureka Springs and then traveled (quickly) onto Searcy to spend the night. The next morning we had breakfast with Jared (whose home we’d stayed in) and then hit the road again. On our trip we stopped for a meet up with my college roommate, Lydia and her husband and two darling boys. We only got to see them for 20 minutes or so, but it was worth it! We then (finally) made it to my parents’ house in time to change clothes and then head to my grandfather’s house for an Open House Christmas party. Whew! And that was just the beginning of our visit. The next day was Sunday, so we had church services in the morning and evening and Kinsley’s big birthday party that afternoon. Most of her Alabama family was in attendance for her tea party. We themed the party around one of Kinsley’s favorite toys, her Fisher-Price teapot. I have to give all the credit for the planning and prep of the party to my wonderful cousin, Mallory, my two sweet Aunts Lisa and Jana and my amazing mother, Donna. This party would not have happened without them! The only thing I helped with was making the edible teacups used to put the ice cream in. My sister and I made them the night before and dubbed them the “Pintrest failures.” Neither she nor I got the creative gene the rest of the family seems to possess! You can kind of see them in one of the pictures, but no close ups!

Anyway, the next day was Christmas Eve, which we spent with my mom’s side of the family and on Christmas day we celebrated with my dad’s side. Kinsley got way too much stuff. But, we had a wonderful, packed holiday with much fun, but most of all the joy of being with family. And did I mention that Kinsley got way too much stuff. Cause she did. It’s still sprawled all over my living room although I feel as though I worked very hard to put much of it away already! However, I’ve decided to see it all as just another blessing we have because Kinsley has a great big family, all of whom love her very much!

Please enjoy the pictures of Kinsley’s birthday and Christmas below. But, most of all, PLEASE, continue to keep our sweet girl and her parents in your prayers. If I let myself, I would cry each day about what our Kinsley girl is having to go through and some days I let myself, but mostly I take those moments to say a prayer that God is with her and with us through this all and I take comfort in knowing that.

Mark 9:24 - “Lord, I believe. Help my unbelief!”

Birthday girl on the actual day.

Looking at one of her presents.

See how she loves when we sing!?

 But the cake is good!

Wearing the beautiful dress and bow made by my aunt at her tea party. (My mom did the hem!)

Teapot cake inspired by the teapot toy. The cake was also made by my amazing aunt!

Cake is good! Again!

She likes the book presents!

Beautiful girl on Christmas Eve.

Reading one of her presents on Christmas day.

Sitting on her birthday quilt made by my other amazing aunt (with help from my mom!)