Sunday, November 16, 2014

New House, Old Fears

Isn't that the most beautiful hallway you've ever seen? That is the hallway in our soon-to-be NEW house!! We started looking around at homes a few months ago, just to see what was out there. We currently live in a two-story Colonial home (that we LOVE), but the bedrooms are all on the second floor. Waverly has gotten a lot bigger the past year (36 pounds now!), and it simply got unsafe to be carrying her up and down the steps. We ended up finding a home that we loved, that had all the bedrooms on the main level and had hardwood floors, and was in our price range! We close on the house this week.

Of course, with the new house, and the changes that come with it, old fears are surfacing for me. I first experienced these types of fears back when I was working full time and was finally able to quit my job. It was VERY needed, as it was so hard to work full time and feel like I wasn't able to be here with her (and my older two). I was stressed trying to get to her appointments, and when she was sick and I had to leave her and couldn't be there with her, it broke my heart. And my heart was especially broken over missing time with her, knowing that our time with her is limited anyway.

But as the time to quit that job approached, I got this terrible fear. I wondered, if NOW that I had quit, if NOW was the time for her to spiral downward. What if my quitting was the "perfect storm", opportunity for her to pass? I of course did NOT want to keep working full time away from her and miss time with her. But I was so scared of her passing, and then looking back in retrospect and realizing it was so great that I had quit so that I had that little bit of extra time with her. I don't even know if that makes sense. It didn't help that the very month after I quit, she got very, very sick.

But here I am again, struggling through some of the same emotions. What if we finally decided we needed to make some more permanent environmental changes (by moving into a handicap accessible home), only to find out that she ends up passing away before or shortly after we move?

What if we buy this house for our daughter and she isn't here to be in it for long? 

And that is a haunting, aching fear to carry. I know it seems irrational, and why in the world would I even think such terrible thoughts, and don't I know that it's silly to borrow trouble that isn't even there? But I can't help those fears from creeping up and gripping me when I least expect it.

I take those fears to my Father, though. He knows my struggles in this journey, and it is no surprise to Him.

Would you rejoice with us in this good news, but also help carry me in this struggle? And if you are local, and can lend a hand to us with moving help, please let me know!

Friday, November 14, 2014

Back home!

Waverly was able to get her MRI without sedation!  I kept her awake all day and then we gave her melatonin right before, and she did great!  

Thankfully, the results were "no new findings" with her brain. If they had found something on the MRI, honestly it would have been pretty bad news, so the fact that there was no change is good. 

But it does mean that we don't know why her seizures have increased. At this point, the only thing we can think is simply that the seizures are no longer responding to the medication. We have increased two of her meds, and will go from there. 

She was able to come home yesterday afternoon, and we are so thankful for that! 

Enjoy a few more hospital pics. 

Our sleepover arrangements. (Not comfortable, in case you're wondering.) 

Heading in to the MRI. 

So sleepy. 

On the way home! 

So happy to be snuggling with mommy at HOME!! 

Wednesday, November 12, 2014

Seizures and Hospital

So, here we are at the hospital again. Waverly has had a sharp increase in seizures lately, and the past week, especially the past few days, have been particularly hard. After debating what to do (and being very unsure), we brought her in to the ER yesterday to get her checked out and try to get some help. They decided to admit her, and after feeling like I was in between and trying to pacify several doctors with differing views who weren't talking to each other, we finally got a plan.

After having an almost 20 minute seizure last night and needing Ativan through her IV, she stopped. She had many more seizures that night until she went to bed. 
Today has been all about waiting. They have her on the schedule to get an MRI, so we are just waiting for them to have room for her. Some things you can pray for:
-that she can have the MRI without sedation and be still enough for a valid test
-for protection if she does end up needing sedation
-for wisdom/answers in how to help treat her seizures and how to proceed

Monday, November 10, 2014

Tune in!

Tune in to this call tonight (you just listen in) to hear how our family has been blessed! 

Wednesday, October 22, 2014

Heart Thoughts-The Seasons Change

These past 3 years, I've struggled with each changing of the seasons. And it's always been a bit of a mystery to me. Why do I struggle with feelings of sadness and anxiety, with the simple passing of one season into the next? Recently, though, I may have narrowed it down.


The passing of summer into fall this year has brought with it my normal pensive thoughts, and this time I realized why. No matter what is going on in life, what is happening in or around you, the seasons change. There is nothing that we can do to stop it or slow it down. It simply happens. In one aspect, it is God's grace. He keeps things going.

But it represents for me the fact that a time in life is coming that I simply don't want to face. Having a chronically ill child whose condition will eventually take them far too early in life makes you realize that your time with them is far too short. And when that time comes, there will be nothing that I can do to stop it or slow it down. It will simply happen, just like the changing of the seasons. This season of my life will change, and I will be forced to live in the next, whether I like it or not.

I love fall and the beauty that the colors bring. But I know that winter is coming, with its bitter cold and lack of color. Everything will be slower, darker, colder. And so the challenge for me is always to savor the beauty that is here and now, and not fear what is to come.

And oh, how I long for the day when each moment can be treasured with no taint of sorrow or sickness or pain. When each moment is pure joy and worship. Until that day, I will strive to live in hope and expectation, trusting in His goodness to sustain me through these changing seasons.

"He will have no fear of bad news; his heart is steadfast, trusting in the Lord." -Psalm 112:7

Sunday, October 19, 2014

Update-med increase

After dealing with some yucky seizures a few weeks ago, we increased one of her seizure meds (Keppra). Since she's gotten so much bigger lately (up to 36 pounds now! That's up from 24 pounds in February!), we realized she could use more medication. So, we increased her night time dose to start with, which has seemed to help some. We are still seeing more seizures than we'd like, but no big, long-lasting ones like a few weeks ago. At the end of last week, we went ahead and increased her morning dose as well, in hopes of further reducing how many seizures we are seeing. Let's pray that it helps, and we won't see as many!