Monday, August 31, 2009


For the past several days I have gone back and forth, back and forth between wanting to post an update, and not wanting to "jinx" things! Here we go again. Who would have ever thought that a crazy disease could challenge my faith in this way? (O.k., yeah, a disease like this would be a pretty obvious test for anyone’s faith!) But seriously, as I've said a million times before, I just don't believe that writing about the good brings on the bad. I don't "knock on wood" or cross my fingers. I pray.

And yet.

It seems like every time I bring you good news, I find myself following up a few days later with an urgent prayer request.

But tonight my desire to shout from the rooftops about the past few weeks has won out over my hesitancy to jinx us. So get behind me satan, because here I go!
This summer and past couple of weeks brought some amazing and exciting changes to the Hart family. First of all, we moved Avery into her big girl bed and guess what? The girl sleeps! All night. Every night. (O.k. so maybe I just knocked on the table next to me. Very softly. It hardly even counted as a knock, because you know, I wouldn't want to wake her up!:) We have even been reducing some of the sleeping medications that she takes because she seems to be so sleepy and tired in the mornings, even after sleeping all night. Notice that I said sleeping medication(s), as in plural. It really bugs me that my not even four year old takes multiple medications to help her sleep, but Avery without sleep is a very, very bad thing. We think that perhaps Little Miss Avery just wasn't "little" enough for her crib anymore and was waking herself up as she thrashed about in bed at night, because as soon as we made the switch to the big girl bed (full-size mattress) she slept, well, like a baby for the first time in her life.

Now she wakes up early in the morning (usually between 3:00 and 5:00) and comes out of her room and into ours. I actually love, love this new little routine. In the past when Avery would wake up, like every other hour, she would stand and cry in her crib until I would go and get her out. We would then sit in the rocking chair until she fell asleep again and I would attempt to lay her back down without waking her up. So the fact that she wakes up, climbs out of bed, walks down the hall and right up to my side of the bed and says "mama, mama" in her soft, sleepy little voice just melts my heart. And Daddy's too. I scoop her up and settle her in between us and she immediately scootches all the way over to Daddy's side of the bed and snuggles up to him as closely as she possibly can. Just another way this little girl has changed our lives in a big way. If it weren't for the past three plus years of total and utter sleep deprivation I would probably be complaining about this little visitor to our bed each morning, instead of rejoicing in it! While Kaylen has been known to fall asleep in our bed on occasion, or come snuggle up with us in the early morning hours, I have always been happy that she was such a good, independent (aka, in her own bed) sleeper. I think sleep and bedtime routines are so, so important for babies and children and so it has really been a struggle for us to work through these sleep issues with Avery. Letting her sleep the last few hours of the night cuddled in between us, is a dream come true! I can't tell you how many nights Britton and I have tried unsuccessfully to get her to sleep with us. To get her to sleep without us. To sleep anywhere! So yes, this has truly been an amazing blessing!

O.k. probably the most exciting change of all for our family is one that I've hinted at a few times over the last few updates. One that I've waited a long time to say. Our Avery girl is seizure free. For real. I feel confident enough that she won't have a seizure tomorrow or the next day or the day after that to say that out loud. (I might cross my fingers right now, if I could still type, and you know, if I did that. But I don't.) She did have a 45 second absence seizure (staring spell) the second day of school, but that is the only seizure we have seen in a long time. A long, long, time in Avery time. That morning we were in a big hurry and we forgot her seizure meds, so the brief absence seizure didn't surprise me. However the fact that she had a seizure soon after missing a dose tells us that her threshold for seizures is still not great. On the other hand, because of her Depakote levels being so high at the end of July- to the point of being toxic, we had to lower her dosages significantly. She is taking the least amount of medication for seizures that she has ever taken (just a low dose of Depakote) and still no seizures!

I can't even begin to describe to you what life without seizures is like, after having lived with them for so long (nearly two years of daily seizures.) How quickly we forget what those days were like. I really hoped that I would be able to update about this time that Avery was still not experiencing any seizures, because this would be exactly one month after her brain surgery that was scheduled in July. But that surgery never happened because the seizures stopped. Without surgery!! Praise God!

The other day when Avery's school asked for contact info for her neurologist I started to rattle off Cinci's phone number but couldn't. I realized that I no longer have Dr. Franz's phone number memorized. I had to look it up!! Do you realize what a startling revelation this was?! I don't have to call them a few times a week! I haven't called Dr. Franz's office in almost a month! I'll bet they miss hearing from me:)

And because Miss Avery is enjoying long stretches of seizure freedom we have made the giant step in enrolling her in a private treatment center/preschool for children with autism in the Kansas City area. Once again we are making the hour plus drive from our home to the city three times a week. It's a trek, but we truly believe that the intense therapy that Avery is receiving will be worth it in the long run. The difference this time around is that we know Avery will be able to attend consistently and I won't worry so much about her having a seizure on the way there or while she's at school. She goes for a full six and a half hour day and so far she seems to love her new school and is thriving there. (Although one day last week when I picked her up, her face lit up and she immediately turned to her teacher and said, "All done!! Uh Buh Bye!" Her bye-byes are priceless!)

We were so blessed to receive a grant from a foundation in our community that helps children with medical needs, to help with the tuition because we could have never, ever in a million years have afforded it on our own. We also could not manage the trip three times a week if it weren't for sweet friends and neighbors who watch over Kaylen before and after school while Avery and I are making our commute. They say it takes a village to raise a child, and in Avery and Kaylen's case- they've been blessed by a loving, caring village for sure! The funding and how to make the travel back and forth work are all things that we prayed about for a long time and are so grateful that God has answered these prayers abundantly!

So there you have it. We are busy, we are happy and holding onto our ever present hope that there are more good things to come for our sweet girl.

Care to join us on the rooftop!?

Friday, August 7, 2009

Flashback. . . Fast Forward Friday

As I mentioned in my Way Back When-sday post, I thought that we had lost thousands of our digital pictures stored on our hard drive when our computer crashed last summer. I have had so much fun this summer going through those "lost" photos and remembering all the precious moments those photos captured. Birthday parties, baptisms, Christmases, and brain surgeries.

Cue needle scratch across record.

Did she just say precious memories and brain surgeries in the same breath?

Yes. Brain surgeries. And while they may not be happy memories exactly, they are very powerful memories of an extremely difficult time in our life. I guess they don't make me as sad as they possibly could in light of the amazing progress our sweet girl has made since those unbelievable hard days. These images just remind me of what an amazing little gal our Avery is. She is the toughest cookie I know!

Here is Miss Avery a few days after her first surgery. I can't believe how good she looks in these pictures, considering that during the five hour surgery doctors removed part of her skull, froze it, and placed nearly-one hundred electrodes directly on the surface of her brain to monitor the nearly thirty seizures a day she was enduring every day back then.




And here is Miss Avery a few days after her second brain surgery, which took place just a week after, the first surgery. Now here, she looks miserable, and she was. During this second surgery doctors removed a large portion of her left frontal lobe. Miracoulsy, Avery did not suffer any permanent loss of function and quickly regained the skills she lost during her long recovery.



She is a miracle isn't she?

Considering we almost lost our sweet girl after that second surgery to a blood clot in her femoral artery (from a central line that was placed during the surgery.) Avery's condition became critical when that blood clot in her groin decided to migrate to her lungs and become a pulmonary embolism. Yeah, those were tough days.

But when I look at these images, I don't feel sad. I am only reminded of what a fighter my sweet girl is. I am reminded of how blessed we are that she is sleeping soundly in her big girl bed and that she is full of life and spunkier than ever.

She's a miracle isn't she?

Fast Forward to today and here is Miss Avery now! (photo courtesty of Bethany) She is so beautiful, it takes my breath away and I am so very proud of how far she's come in the last three years.


Avery girl, you never fail to amaze mommy with your strength and courage. You refuse to let all the yuckyiness you have to deal with get you down. You just keep fighting and Mommy couldn't love you more. You are may hero and I am so proud of you baby girl! God surely has amazing plans for your little life!

Tuesday, August 4, 2009

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, August 3, 2009

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!

Saturday, August 1, 2009

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!