Caught Red Handed!

When I nominate myself for Mother of the Year next spring, I'm going to submit these photos with my entry as evidence of my superior parenting skills. . .



"How many fat grams are in these things?!!"




"Dang! That is not good!"




In my defense, she used a chair to get on the counter and help herself to these chips while I mixed her bedtime meds! The girl loves her chips!

Yup! Just call me mother of the year:)

Monday Morning Mommy Musings

I'm not even sure what "musings" really means but, I wasn't sure what to title this post of random jumbled up thoughts. I do love a good alliteration every now and then, probably left over from my teaching days:) Our love for alliteration is one thing that MckMama and I have in common.

Unfortunately we have a few other things in common.

If you don't follow MckMama, then you've never met Stellan and the whole Happy Meal. They are an extraordinary family dealing with extraordinary circumstances- not unlike our own. Their youngest child, little Stellan, suffers from intractable SVT. I'm not sure I entirely understand his medical condition as well as I do Miss Avery's, but I think that because of electrical misfirings sometimes his little heart beats too fast and the medicines used to control his SVT don't always do the job alone. Last spring he had surgery to remove one of the extra pathways that causes his heart to beat in this abnormal rhythm. But the SVT came back. Hence the "intractable" part. His struggle reminds me of Avery's in so many ways and I can so relate to many of MckMama's updates from the hospital. Avery's seizures are caused by electrical misfiring in her brain and they aren't always controlled by medication. She too had surgery in attempt to stop these misfirings, but it was to remove the part of her brain (not her heart) that caused the seizures. The surgery worked for a time but the seizures came back.

Hence the "intractable part.

Baby Stellan has had a really rough couple of weeks. He has been in the hospital as doctors attempt to find a way to control his SVT. Miss Avery also had a horrible, awful, miserable week last week- fortunately we did not spend it in the hospital. As those of you who read my Facebook updates know, Avery struggled with major irritability for the better part of last week. We finally ended up at Children's Mercy to get a CT scan of her brain. Avery is followed by a team of specialists st Cincinnati Children's Hospital in Ohio. We live eleven hours from Cinci, but Avery's neurologist, Dr. Franz, is one of the best in the country and he is an expert on Avery's disorder, tuberous sclerosis complex. Dr. Franz was concerned with Avery's change in behavior and irritability and wanted a CT scan to rule out any changes with the tumors in the ventricles of her brain. Unfortunately the scan did show that one of Avery's ventricles is mildly enlarged. We aren't sure why yet, and because it wasn't dangerously enlarged we won't have to do anything about it right a way. She will have an MRI in three months to look at the change in the size of her ventricle and hopefully it will be no bigger than it is now!

We think most of Avery's misery last week was because the levels of her anti-seizure medication, Depakote, in her bloodstream became too high. In fact her levels were DOUBLE the therapeutic range! Medicine toxicity can cause all of the symptoms Avery was experiencing and when we lowered the dose, gradually, we started to see small improvements in Miss Avery. Avery had an amazing evening last night! We went for a long drive (which lately she has asked for constantly!) and she laughed and giggled in the back seat the entire time. She's such a sweetheart.

Avery is irritable a lot of the time- even when her medication levels aren't completely out of whack. We have tried everything we could possibly think of to distract her and entertain her. She also has autism, and so at three and half years old, she doesn't enjoy all the normal things a preschooler would enjoy. In fact, she doesn't enjoy much when she's having a bad day (or a bad week as the case may be).

Britton first had the idea that Avery might like to go for bike rides in a bike trailer or baby seat quite awhile ago. However we were both afraid that if we went out and bought new bikes and a bike seat, we would find out too late that Avery wanted nothing to do with it. Then we would have the bikes but not be able to ride unless Avery wasn't with us. Thanks to our sweet neighbors we were able to borrow two nice bicycles to test Britton's theory and guess what? Avery loved it!!

Here are Avery and Daddy getting ready to head out for a ride.





Avery laughs the entire time and yells "Go! Go!" as Britton pedals her around the neighborhood. It was a brilliant idea on Daddy's part:) She seems to love the feel of the wind in her face and the bumpiness of being strapped to the back of Daddy's big bike! Plus, it's great exercise for us! I'm so excited that we've found something that all four of us can do together as a family!

*And yes, we make her wear a helmet! We just strap it on at the very last minute because it's the one thing she does not enjoy about taking a bike ride. To say the least.




Well, that's probably enough rambling for one day! Kaylen is visiting her Grandparents in Salina this week, so it's just the three of us! We will miss her, but we know that she will be enjoying her time with Grandma and Grandpa as they spoil her rotten!

Happy Monday!

Scooter Gang

From the time Kaylen was a toddler, she has always been blessed with bunches of neighborhood playmates. For the first five years of her life we lived on Summertree Court in Olathe. There were no less than a dozen little ones Kaylen's age and younger at any given time. Then slowly but surely, the other families started to move away. On to their bigger and better second homes:) By the time that we put our house up for sale, there was really only one little guy left that Kaylen played with. He was nearly two years younger than Kaylen, and they didn't have much in common, but it was better than having no one at all!

So when we moved here, I prayed and prayed for our new neighborhood to be filled once again with lots of little kids close in age to Kaylen. God answered this prayer abundantly! In just three houses on our street (well really the cul de sac that our house backs up to) there are six little ones and five of them are girls!! From the first few nights in our new home, Kaylen has been glued to the hips of these sweet girls.



Kaylen is rarely ever without a friend to play with! They bounce from house to house and during the summer sometimes spend entire days together. Last night I had to go outside at 9:30 to drag Kaylen in and I found them like this, having scooter races on the driveway. I absolutely love, love that Kaylen is growing up in a community where she is surrounded by playmates. That they are able to run and play, ride bikes and scooters, jump on the trampoline, and swing on the swing set well into the night and they are safe. They are safe and happy and carefree and getting to grow up together.

What a blessing for our sweet girl and her friends!

Thank You Danielle!

Here it is! Our new look! I really enjoyed working with Danielle, from the Design Girl, on this blog design. Oh, who am I kidding! I didn't "work" I just asked questions and she did all the work! I love it and am so inspired to get back in the swing of blogging more often! Thanks again, Danielle!

Way Back When-sday!

Our family computer bit the dust last summer during a lightening storm and with it, hundreds and hundreds of our digital pictures!! Or so we thought. We didn't even bother to try to get it fixed until this spring, when a co-worker of Britton's mentioned that he had recently had the same thing happen and was able to recover all the lost data and pictures. So Britton took our computer in and ta-da!! All our pictures right there where we left them! I was so happy I almost cried!

I have been looking back through file after file of "old" pictures and I am so happy that they weren't lost forever. There are so many precious memories stored on our hard drive, and we are working quickly to get them all saved over to disks so that we never lose them again!

So for today's walk down memory lane. . .

From the moment that Kaylen found out that our new baby would be a girl, she started dreaming (out loud) about all the fun things that they would do together! First item on her agenda? Play dress-up! I explained to her that it might be a little while before her baby sister was old enough to play dress-up, but Kaylen was patient. One day when Avery was about seven or eight months old I was folding laundry and Kaylen and Avery were playing in her room. Pretty soon, Kaylen called to me, "Mommy, mommy! Come see! Come see!"

And this is what I found!

Oh. My. Gosh. Were they ever this little? They are so precious it makes me want to cry!

And I'll let you in on a little secret. . . They are so precious it makes me want another one. . .

Shhhhh!

Yikes! July?!!

I can hardly believe that its already the end of July and in a few short weeks school will be starting again! It has been a busy, busy summer and a blog-free one too! I can't believe how I've neglected this poor, abandonded blog!

Who knew that a little thing like this blog o' mine could cause me so much guilt. Each day I stop by here and see my last post from (GASP) April and I feel so guilty. Guilty for not updating more often and guiltly for ignoring my blog!! I know this is silly because there are probably only two other people in the world reading this, but still. . . I don't like to start something and not keep up with it, so here goes. . .

So what have the Harts been up to since I last posted?

Well what a better time than July than to talk about what happened in May I say! In May, Kaylen Rose turned seven!! We celebrated by throwing a rock-star themed sleep over and it was a hit! I ordered these rockin' invitations from Designs by Georgia off of Etsy! If you need a fun invitation and a quick turnaround time, Georgia is your gal!

We decorated our basement with tons of balloons, sparkly stars, and streamers. To create the effect of a "dance party" we even had a friend of ours who is a DJ bring over some fancy "strobe" lights that flashed in bright colors to the beat of the music. With the lights turned down and the music cranked up it was the perfect setting for the little divas to get their groove on!

As you can see in the picture above, it was kind of hard to get good pictures of the rock stars as they were "dancing" - aka, chasing each other around our living room:) But you can see the fun "disco" lights!

This is the only shot I got of all the girls together, as the night was winding down and they stopped for a minute to watch High School Musical 3 in their jammies. This party was so much fun, it really deserves a post all of its own. . . we'll see;)

After Kaylen's birthday weekend was Dance Recital Week. This was Kaylen's second year in jazz and ballet here in Emporia and gearing up for recitals is always a big deal! Kaylen had dress rehersals EVERY night for a week and then perfromed on two different nights! In the end it was worth it and the dances turned out very cute!

Here are Kaylen and two of her dance buddies at rehearsals.

After school was out, we took Kaylen to Chicago to visit the American Girl Store. What a fun trip! Yup, that trip certainly deserves its own post!

Here are Kaylen and I eating lunch with her doll, Mia, in the American Girl Cafe! What an amazing place to visit! More on that later. . .

We also took Kaylen to Branson at the end of June for a quick weekend getaway. I didn't even take pictures on the trip. We've been there so many times, and we were having so much fun, I just didn't snap away away like I normally do!

While in Branson we took Kaylen to White Water- a water park with tons of wild and crazy slides. I had no idea Kaylen was such a daredevil! Just last summer she wanted nothing to do with the water slide at our local pool, but she didn't say no to a single ride at White Water!!! She even went down Kaluni Falls, the picture you see below! It was a little scary, even for me, let alone Kaylen, who was just barely tall enough to ride it!!






At the end of June our best friends visited from Arizona! We always enjoy having them stop by, even if their visits always feel too short. You can see the amazing pictures my friend Bethany took of our family while she was in town by clicking here.

Another fun part of summer for us is hanging out on the lake on our friends' boat. We enjoy boating so much that we are thinking about getting a boat of our own for next summer!! Kaylen had a blast tubing with daddy and our friend Garrett!



Avery even got to go tubing for the first time! I don't know how much you can see here, but in between Daddy's feet is her little face. You can't hear it on the video, but she was laughing and clapping the whole time! She loved it! I guess we have two daredevils in our family! For the most part she loves being in the boat and hanging out in the water!






Well, that pretty much sums up May and June! Wow! Birthday parties, dance recitals, vacationing, lake trips, and visits from friends! I guess I didn't realize how busy we really were this summer! See. . . no wonder I haven't found the time to blog:)


I really am going to start blogging at least a little more often than every three months because I'm getting a blog makeover soon!! I can't wait to reveal my new look!

Hollywood

Last month we traveled to Los Angeles for Avery to undergo a surgical evaluation at UCLA medical center. After many months of researching different surgical centers we made the decision to travel to UCLA to meet Dr. Gary Mathern, a highly respected neurosurgeon.

It was a long and difficult trip for many reasons. I detail more of Avery's medical stuff here , but we are hopeful that the surgical team at UCLA may be able to pinpoint the brain tumor that is causing Avery's seizures and remove it.

After we were discharged from the hospital we took in some of the sights and took Avery to the ocean for the first time We just happened to have a professional photographer with us to capture these precious memories. My dear friend and her sweet family made the six plus hour trek from Arizona to hang out with us after Avery was discharged. We had a blast with our friends in Hollywood and learned that Miss Avery loves the ocean. She laughed until tears ran down her face. The entire ordeal was worth that precious sound!