Sunday, March 27, 2016

Happy Easter!

This morning, as we watched Waverly have 10 minutes of seizures, it hit me once again just how important Easter is. Without Christ's resurrection from the dead, He would be just as powerless as any other person. The fact that He was raised meant that not only did He pay for our sins, He defeated death! He won! 

Daily we experience the consequences and pain of this broken world as we watch our sweet girl's body fight to stay alive. But thanks be to God that this is not the end of the story for her. As I spoke over her this morning, Jesus has won! This is the worst it will be-complete Wholeness awaits her one day. We have Hope because of His resurrection! And for that, we praise Him! Happy Easter, from our family to yours! 

55 "O death, where is your victory? O death, where is your sting?" 
56 The sting of death is sin, and the power of sin is the law.
57 But thanks be to God, who gives us the victory through our Lord Jesus Christ. - 1 Corinthians 15:55-57

Egg hunt

Waverly enjoyed making an appearance as Little Miss Wheelchair Va at our church's Easter egg hunt yesterday! 

Easter eggs

We enjoyed dyeing Eastwr eggs earlier this week! Waverly did not appreciate how cold the egg was though. 

Thursday, March 24, 2016

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! 

Saturday, March 12, 2016

Waverly on the news

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! 

Friday, March 11, 2016


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.