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!

1 comment:

Nikki said...

LOVE IT!! So glad she enjoys the bike rides! We've been wanting to get a seat for Ava, but haven't done it yet! Maybe when it cools down a bit!! Can't wait to see you all again - back to work way too soon!!