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Life Updates from the Haus

October 29, 2018

It's been awhile since I've written about Asher and where we are at with our journey - okay, actually, it's been a lot longer than awhile. I'd like to say it's because things have been going really well and there was nothing to report on, but a more honest answer would be, there's been a lot going on and I have found that I've had an increasingly difficult time processing it all in the last few weeks. 

 

This special needs life thing is no joke sometimes. 

 

Let's take a quick rewind back to September. Asher turned a year old and we had the most beautiful celebration of his life thus far at Al's Run. Our team, Asher's All-stars, was in the top 3 for fundraising and we were joined by so many people who love us to walk in celebration of surviving our first year of this life. It was such a perfect weekend and was a much-needed reminder that even when things get heavy, we have the greatest support system to lift us up. 

 

 

 

 

 

 

 

 

 

 

 

 

Since then, things have been *difficult*. Brain surgery back in July gave Asher some miraculous relief from seizures and discomfort and gave me some hope that things might just be looking up. Unfortunately, in September we saw a rapid decline and it became apparent that the relief surgery had provided us was temporary and that the first surgery just wasn't enough. We knew this was a possibility, but I was so hopeful that it had worked. We are now looking at another surgery in the very near future, but we need Asher to be a little more stable before we get there. 

 

 

October brought us 3 different hospital stays and our first ambulance ride. This month has been by far the hardest we have had to date. Asher's epilepsy is completely out of of control and as the days go on, our doctors are becoming less and less optimistic that he will one day know a seizure free life. Epilepsy is difficult on so many different levels, but the volatility and unpredictability has really tested my patience, nerves and faith. It is heart-wrenching to see your child go from okay to seizing in your arms in a matter of seconds and the constant fear of knowing that his next seizure might be the one that puts too big of a toll on his heart makes for a lot of sleepless nights, aching muscles and bitten fingernails. I didn't realize how physical stress is until this last month. 

 

The good news is we have added a few new doctors to our team and while it is frustrating that we haven't been able to see results yet, I have hope that we will in the near future. Right now we are focusing on trying to stabilize his seizure activity long enough to have surgery with the hope that this second surgery will give Asher more lasting relief.

 

In our constant game of wait and see, this wait has been agonizing, but as always, Asher continues to fight through it like the warrior he is. We have found moments of comfort in therapy and in quality time just hanging out at home with family and friends. Asher began monthly music therapy which he loves and continues to soak in all the time he can with his physical and occupational therapist who have become more like family than care team members. In a couple weeks we will meet with a new doctor who will help us talk through how to outfit our home with new chairs, beds and toys that will keep him a little more comfortable and independent. We have also began vision therapy to help us get a better understanding of how Asher uses whatever vision he might have, which is still unknown. Asher spends a lot of time being loved on by pretty much everyone we encounter on a daily basis and I continue to be blown away by the level of support we receive day in and day out. 

 

 

 

Like I said, it's been a difficult couple months, but with each troubling patch we reach, we always end up a little bit stronger and a little bit more hopeful at the end. We are excited to put October behind us and are looking forward to the upcoming holidays, Marquette basketball season, family time and Asher's first trip to the happiest place on earth, DISNEY! 

 

 

 

 

 

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