Needing wisdom

We are needing wisdom for Waverly these days. For a couple of weeks now, she's seemed a little "off" and we are having a hard time figuring out why. She's been constipated even though she goes every day. She's been having an increase in seizures too, and we just finished treating another UTI a few days ago, and are waiting to hear if she's got another one already. She had a fever one day this week but that's all. And she's arching. A lot. We aren't sure if it's due to pain (from constipation or UTI), reflux, neurological, or airway clearance. 

I've spent my entire week trying to contact each doctor to get to the bottom of this. We took her in last week to check for bowel obstruction or other issues, and to get some blood work to make sure her levels were ok, and most of that checked out ok. (They did note some scattered stool throughout her colon and some dodge goon in her colon. 

So, we would appreciate prayers for her as we try to figure it all out. We've talked about a hospital admission just to have a whole team working on the whole picture (which is really needed), but an admission would be risky with exposure to other illnesses that are there. So for now we are still trying to do our best to communicate with all doctors (NOT an easy task!) and do what we can to help her. Thanks for the prayers! 

These pics were from last week. Poor baby! 

Waverly on the news

http://www.virginiafirst.com/news/good-news/ms-wheelchair-virginia-raises-awareness

Check out Waverly's message of hope! What they left off is WHERE we find our hope-in God! 

Little Miss Wheelchair Virginia

Waverly had the honor of being chosen to be one of the recipients of Little Miss Wheelchair Virginia this evening. It was such an honor for her to be asked! We are excited to show others that all life is precious and a blessing, and that despite a grim diagnosis, there is hope! She was happy to have her big sister help her! 

Perspective

I could be mad. The agency gave us official word that we would be without nursing care 2 days a week just days before that was the case. (Thankfully we had a conscientious nurse who told us herself a few weeks in advance.) It's a big rearrangement in our day and week. When we have no help for Waverly, one of us is housebound at all times. We can't just pop her in the van and run errands or take the kids to and from school. And because of her high level of care needed, and how many seizures she's been having recently, she required a lot of time and constant supervision. (For instance, today she has hardly been able to rest due to so many seizures.) 

But instead, I am choosing to be thankful instead of angry. Because it has given me a whole day at home with my girl. I've been able to sneak away and run downstairs to do some laundry. (Yay for clean sheets! I admit that doesn't happen often enough in our home...!) I've been able to open all the windows, diffuse some essential oils, and listen to praise music. I've been able to work on my business and help my team while never having to leave my house. Since I work from home, I am not in danger of losing my job because of not being able to leave the house from lack of nursing coverage. In fact, I'm able to still earn a full time income while being home and caring for her. I'm able to have views like the picture I took, watching her rest in between seizures. I'm able to sit and snuggle her while catching up on my reading for my Bible study tonight. (We are reading the book Anything by Jennie Allen-it's so good!) And just now, I was the one to be able to hold her and comfort her during yet another round of seizures. 

Yes, days like these are hard. And facing the possibility of doing this for a while can be overwhelming (I don't know how those of you without any nursing help do it!) But there is so, so much to be thankful for in the midst of this. I know at some point in the future, I would give anything to have this "inconvenience" for just one day. So today, I am rejoicing in the ability to be home with my girl and care for her, and all that means. 

Leap Day

I remember this day 4 years ago. And just like then, today I am so thankful for this day. Why?

See, this day is an extra day that we are gifted with every 4 years. For me, it means one extra, bonus day with this sweet girl. 

It's one extra day this year that I get to hold her, to kiss her hands, to sniff her sweet breath, to rock her and coo back and forth. It's a day we aren't guaranteed. It's a gift. 

Rare Disease Day

Did you know that February 29 is Rare Disease Day? How fitting to call attention to rare diseases on a rare day such as Leap Day! So, without further ado, here is a little more about our Rare girl!
Waverly was born with Miller-Dieker Syndrome. Her condition affects less than 1 out of 100,000 people. That means that there is a deletion of genetic material on her 17th chromosome. That caused her brain to be smooth, a condition known as Lissencephaly. 
As a result, she is severely delayed in all areas (physical and cognitive). What does this look like on a daily basis for us? She is fed through a tube that goes directly into her intestines and stomach. Her lungs are very weak, and we do multiple breathing treatments with her each day to try to keep them clear. She has multiple seizures a day. She is on an oxygen monitor at all times. She gets oxygen as needed, and is on a bipap (breathing machine) at night to help her breathe and keep her lungs open. We regularly suction mucous from her mouth and nose. We cath her 4 times a day to help her empty her bladder. She is on over 15 medications daily. She is non mobile and non verbal. She cannot hold her head up. She depends on us for every thing.
But want to know what it also means? It means that we now speak without using words. It means we don't take one day for granted. It means we love deeper and more fiercely than we ever knew possible. It means heaven is so much more real to us, as we long for the day to be with her in a healthy and happy state. It means that we have seen how real and strong our Lord is, because who can endure such things without His strength? It means we have known deeper sorry, and deeper joy, than we ever imagined. It means we have experienced how sacred and important life is, all life. It means we have known a love so pure and real that it points us back to our Father. It means that God gets the glory, because of His goodness. In short, it means everything.
Thanks for taking the time to read what Rare means to us today, and for those who love our family so well.

The Other Side

The Other Side

She quietly confided to a few of us that there were some concerns with her unborn baby. There were some markers of a syndrome. Then came the extra amniotic fluid. Another indicator that there was something wrong. And then the waiting game. 

I identified so much with the worry of what happens when the baby is born. How long will I have with my precious child? What will life be like with all the special needs? What if my baby is healed? 

And then she went into labor. 

And we waited. And messaged each other. And prayed. 

Friends in prayer are a powerful thing. 

And it hit me. This is what it was like on the other side. To be patiently waiting for news of what was to come. It was surprisingly hard for me. I wasn't expecting the emotions. 

And then that precious little one was born. Healthy and whole. 

And we all rejoiced with her. 

And I crashed. 

I was on yet an other side. Seeing what it could have been like. A new baby, an exhausted mom, typical normal stuff. 

But our story was different. 

Two different "other sides". 

Same God on both sides.