Clusters

I wrote a long post explaining the events from this past weekend and then promptly lost it! Argh. Here goes again:

Sometimes when Abby has a fever she will experience something called "seizure clusters," it's when she has seizures one right after another with very little break in between.

This happened over the weekend after a fun filled Saturday with Aunt Connie and Uncle Matt. It came on suddenly and she quickly looked like she was headed for a status seizure. We gave her the Diastat and things settled down for the night. She slept well.

The next morning the seizures started back up again, so we called our neurologist who gave us instructions to give extra medication, alternate Motrin and Tylenol and take her to the hospital if it continued. We could not give more Diastat unless we were en-route to the hospital. (too much of this drug can suppress her drive to breathe).

Sunday was spent giving meds, watching her seize and praying we wouldn't have to go to the ER again. This continued through the night and Monday was spent resting and recovering from the weekend.

We are all exhausted; physically and emotionally.

The Lord has been teaching me several things over the course of this past year. One of them is to really live one day, sometimes one moment, at a time. The words "grace," "peace" and "surrender" have taken on new meaning as well. He has been speaking to me through His word, through other books I'm reading, through loving family and close friends that care.

We are taking to heart that our true hope won't be found here in this life. Our hope is found in the Lord. He is sovereign and promises to work this all out for good and for His glory. I'm reminded daily how shallow my vision is and how large my need for His strength has become.

So much in this life is out of our hands, but are safely in His.

On the lighter side, Abby is now on her 3rd g-tube button this month. They are supposed to last 3+ months and have in the past. We are juggling with the insurance people, her gastroenterologist and supply company to come up with a solution to this problem. The balloon inside her stomach holding the button in place keeps popping, causing the button to literally fall out. (could be caused by excess stomach acid, a product defect or possibly the medications she gets through it)

We may be compelled to revert back to a BARD button (instead of the Mic-key) in order to prevent a number of problems, the least of these being insurance coverage. She started out with a BARD in 2004 so we are very familiar... it doesn't have some of the features we like about the Mic-key. Not sure if BARD makes a GJ tube yet.

Visual of a Mic-key button:

(new button- deflated balloon)

(testing the balloon before placement)

We shall see.

For now we are enjoying a mostly normal Tuesday.