Monday, March 2, 2015

Siblings


I love these pictures of the kids being siblings and loving each other. Can you spot Waverly in the first pic? 

Thursday, February 12, 2015

Doing Better


After a rough night Sunday night, with sats only in the upper 80s/lower 90s with 8 liters of oxygen in her bipap, I took Waverly to the doctor on Monday and in for a chest x-ray. She was wheezing so badly that you could hear it just walking into the room. I was nervous they would send her to the hospital, but her x-ray actually looked ok (for her). We increased pulmicort (steroid) nebulizer to twice a day to try to help her lungs open up some, and increased the Robinul to help dry up her secretions more, and that seemed to help. She's still quite junky, but doing much better, and was even able to be off oxygen a little bit yesterday. Thanks for praying for her, and please continue to pray that she recovers more and gets back to baseline for her!

Monday, February 9, 2015

UVA update and sick





Sorry I didn't update after our UVA visit. There wasn't a lot to update with that, other than the doctor and I discussed a few medications, and he basically said to research which one we wanted to try and let him know. So, I've been working on that this week. After we got home from the trip, she got sick the next day with respiratory stuff. She's struggled all week, but hasn't been too too sick. Over the weekend, however, she's needed even more oxygen and last night her sats were only in the low 90s with 8 liters of oxygen on her bipap. So, this afternoon we are heading in for a chest x-ray and doctor visit. Please pray for wisdom, if she is ok to come back home or if she needs to head over to the hospital for more treatment. Thank you!

Saturday, January 31, 2015

UVA on Monday

Just a quick update to let you know that we contacted the neurologist this past week about Waverly's continued struggle with seizures, and he worked in an appointment for her early Monday morning. Please pray for safety on the road, and for wisdom for the doctors and us as we try to determine the best way to help her. She's been having hard seizures several times each day, and many more "smaller" ones as well.

We Moved!!

Sorry for the silence lately. We have been SO busy working on our new home, and last week, WE MOVED! That first night, we were able to wheel Waverly from her bedroom to the family room, and it was awesome! I have to admit that I did cry when I took her from our old home to the van to drive to the new home though. It was very emotional. While it is exciting to be in a new home, the reason behind it, that we HAD to move because of her condition, made it very emotional. Not to mention that our old home was our first home together, the place where we brought all 3 of our babies home, etc. We are praying for the perfect family for our new home, when the time is right. If you know anybody in the area looking to rent or buy, please send them our way!

Friday, January 9, 2015

Mundane Faithfulness

As I read this, I was holding my daughter, who should be running around like crazy playing with (or fighting with!) her siblings. Instead, she had just had a hard seizure, and was continuing to twitch. But even in that moment, there was such beauty. Snuggling all 3 of my children on the couch. A warm home. Time together. Holding that very child who has already outlived her diagnosis. Such beauty in the midst of such pain.

"How is your brokenness meeting you? Are you avoiding it? Can you see how it can be made beautiful? Can you see how the pain in your story could be redeemed to something beautiful? It’s a fight to see the grace through the fog of the pain- but it’s there. It’s there. Are you looking for it?"

http://www.mundanefaithfulness.com/home/2015/1/7/how-are-the-kids

Saturday, January 3, 2015

New Year


Here we are, in a new year. For many people, New Years is a time of renewal, resolutions, fresh starts. For the parents of a child with special needs and a terminal condition, it is such a bittersweet thing. It is the promise of yet another year that their child has survived.

But there is also the fear of "What if this is THE year...?"

Oh, the nagging reminder that lives with us each day. Sometimes we can go days without thinking about "it". But other times, it threatens to choke me with the weight of it.

Will this be the year we have to say goodbye to her?

Even when things are going "well" and she's been healthy (for her) and been out of the hospital and relatively stable, there is always that nagging fear in the back of our minds. The holidays are also a hard time for that, and a constant reminder.

What if this is her last Christmas with us?

The pressure to make it all as perfect as it can be, just in case there isn't another one...

So, will you please pray for our hearts? It is a lot to handle. And yes, I know we shouldn't worry about such things, but it can't be helped. It's there. It hit me the very first Christmas, especially as I took down the Christmas decorations. I began to cry and wondered if she'd be around to see them again the next year.

Of course, we have been blessed now with FOUR Christmases with her, and pray for many more. But the next one is never a guarantee, for any of us really. We thought last year that she wouldn't be with us at that Christmas, but she pulled through and we had her then AND this past one. And we are thankful.

On another note, please pray for her health. There is SO much sickness going around right now, and we've had several close exposures to the flu in particular, and our oldest is currently sick with a low grade temperature and sniffles. It is once again a reminder that even when she is doing well, she is just one sickness away from serious complications. Thank you!