About Us

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Shawn, originally New Yorker, transported to Tennessee for a few years, chased the love of his life in Iowa, only to move her back to Tennessee. Rachael, small town Iowa girl that traveled the globe to find her love in Tennessee. Little did we know how much our lives would change when Little Miss Magdalyn Joy entered the world. Join our journey through the unknown of Maggie's medical issues, known truths of God, and the nuts and bolts of life.


What have you been praying for?

Not sure what you all have been praying for. Just after I posted the plea for more prayers for the spasms to stop, it seemed they actually got more intense. Grr...
Thus, we upped her evening dose again. And her bowels have slowed again. And her overall toxicity has increased again. (I can tell her liver is working hard as she has more breakouts popping up. Our therapist has also been monitoring this toxicity) And we wait for spasm control again. And we still see the spasms again. Not happy about this continuing. Often times when she is spasming, my eyes had been welling up with years as I pondering what is going on inside her brain, the damage that is being caused, and the effects on her future. A couple of things I have become apparent to me. 1) the reminder that those FEARS are not TRUTH. The truth is that I have one sweet little girl sitting in front of me that is making progress and trying to get her body to do new things. 2) She is more than likely completely aware of her surroundings while spasming. Instead of laying her down and just letting her spasm, I have tried to be more present while she is spasming by reassuring and talking to her.
So, to answer my most difficult question, "how is Maggie?" "We still don't have the spasms controlled yet, but she still seems to be making some forward progress."
We also went to the cardiologist on Monday. The original PFO (slight hile in her heart) is closing up nicely and it would not be causing the seizure issues. He said any heart related/blood flow issues are secondary to the seizures. As crazy as this sounds, I was somewhat disappointed. It would just be nice to have something to put our finger on. But if there was something wrong, the "fix" would most likely be more medicine or open heart surgery, neither of which we would be ok with. Shawn convinced me that it really was good news. I just can't let go of my suspicion of bloodflow/oxygen/pressure issues. Piotr also pointed out that she is "fixing" stuff every time we go to therapy. She is making good changes and getting stronger. In our world of instant gratification, I am to the point of looking for that quick fix. Don't think that's in our cards. But I'm thinking learning patience and endurance is. Hmm...
Right now we are on our way to Grandma and Grandpa Hennings' Ranch in Missouri. Tomorrow they are having a benefit ride and auction for Maggie on the trails at the campground. This is Maggie's first time to visit. Aunt Brooke, Uncle Tyler, and the girls live there now too. Plus Gma and Gpa Leyen, Great Aunt Linda, and Great Grandma and Grandpa are coming down to visit too! We figured Maggie better make an appearance at her own benefit. We're excited to see everyone, and we're only an hour away!!

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