It's almost midnight & I am just crawling into bed. I've been doing food prep for Aussie's big birthday weekend. My girl will be TWO tomorrow. It's so hard to believe. I feel like I was just writing her first birthday update & now it's time to fill you in on year 2. Austen's story was a little difficult to find on Facebook so I published it to my blog. I know some are curious, but feel awkward asking questions about Austen. Please know that I don't mind the questions at all. It gives us a chance to give you a tiny glimpse of how amazing our God is. That's another reason for these updates. I feel like God sent us on this challenging journey for a reason. I don't know why, but I do know that he uses us for his glory. I don't share Austen's story for pity, self-glorification, or to beat a dead horse ;). I share it because if I can reach one person I feel like it's worth it.
This past year has been much more normal for us. We've encountered a few scares, but there have been no hospital stays. Thank. God.
Aus is still having her episode/seizure activity, but we have learned a few things. Over-stimulation obviously makes them more frequent so we monitor TV, busy atmospheres, flashing lights, & so on. Fever & pain make them worsen as well. These things are all very normal for seizure patients... Except no one can actually diagnose Austen as having seizures. Our doctor calls them "electrical discharges" & they aren't really sure what she's dealing with. Characteristically they're seizures...& that's the best way I can explain it. We've learned when we see an increase in activity that Austen has something going on. So far this year it's been stomach virus, teeth pain, & ear infections. It's her body's way of telling us things are off. As soon as we get her pain or infection under control things return to normal. We are so blessed that we typically only see a few seizures a day. In the neurology clinic we see so much stuff & it literally wants to make me drop to my knees then & there to thank God for our "problems"! About a month ago we went a whole week without a seizure!! We don't really know why..but I do know (even though it didn't last) I will praise God for that amazing, stress free week!
We've also learned some details about how Austen's condition (ACC) effects her specifically. It's different with every patient. Most not being nearly as blessed as she has been. In HER case she is cognitively on target. Just spend some time with the little whipper snapper. She's got it together ;) Her motor skills are where we see a delay. She is progressing beautifully... Just a little slower than most. Imagine trying to walk when the two sides of your brain aren't connected & they aren't working together to tell your body what to do. That's what Austen is overcoming. Thanks to therapy, practice with family, & many trying sessions with Mae Mae ;).. Austen is spoon feeding herself, transitioning from laying down to sitting up, attempting to pull up into standing, & taking steps. I know this may surprise some people because if you've seen Austen you never would've realized she couldn't do these things. She's so normal, and you really have to pay attention to see it. Austen doesn't talk much either. She has a few words that she'll say, and has pre-speech characteristics so we don't worry too much. Her motor skill delay contributes to that as well. Communicating has been a huge frustration! Remember that her logic is there. The sassy little 2-year old knows what she wants! She just can't tell you. That's when we turned to "signing". LIFE-SAVER! We still get mad at each other..sometimes I wanna pull my hair out..., but for the most part we've learned how to use signs to communicate. Our big goal this year is to WALK. Say a prayer for Aus! The 27 pound youngin is killing my back!
I often reference Austen as our miracle. If you don't know the beginning of Austen's story then you don't know this...We weren't given any hope for a normal life with her. She wasn't "supposed" to be able to do anything according to her MRI & neurologists. Her doctor still can't believe how she "continues to amaze". I love hearing that.
When I was pregnant we were building our house. One afternoon as we were burning a big trash pile the wind picked up a bit. It began blowing the flames up into our huge Magnolia tree. The Magnolia has been on the homestead property for years, and I was devastated at the though of losing it. I heard the crackling of the leaves & I just knew it wouldn't survive. That spring there weren't any blooms. The tree was still green but no flowers appeared. It was green though, and I was holding onto that. Austen was born that May, and the Magnolia tree was the least of my worries. The following spring I was at the homestead property preparing for Austen's first birthday party. Our house wasn't complete, but we were close. I was rushing around trying to set-up party tables when I spotted the bloom. I almost cried I was so happy. The Magnolia was back & the first new bloom was on Austen's first birthday. I have had a strong bond with that silly tree ever since. I know it sounds crazy, but I can identify. When we were told the news about Austen I felt like I had been "burned". As a new mom you have visions of how you think things are supposed to be. When it wasn't my idea of perfect I was crushed. Then I held my baby. She was perfect...God gave me a "Magnolia" after I had been "burned".
This is the second year of blooms since the fire...how fitting that we are celebrating Austen's second birthday.
I don't care how silly it may be. That tree & my little "Magnolia" will have my heart for eternity.
Soli Deo Gloria
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