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!?


Lana DenHarder said...

This is fantastic news! I know how good it feels to write an update and say that without a doubt your child is seizure free...what an awesome feeling! I love reading your updates and often think about how Avery is doing as she and Cole are almost the same age.


ac said...

Yaa! So glad to hear that things are going well there. Will continue to pray for more shouting from the rooftop updates!! Hugs! Audrey

Bethany said...

Holy cow girl!! You need to update this baby!! It's been over a month!!!