Sunday, June 30, 2013

Chest x-ray and bugs...

A few weeks ago, we took Waverly in for a chest x-ray, because her pulmonologist wanted her to have one when she was relatively healthy, for her, to see what a "good" x-ray looked like (to compare with when she's sick). The result of that x-ray was not great: she still had several areas that were hazy and streaked, including a couple of bigger areas. So he ordered a culture of a sputum sample to see if any bacteria grew out of it.

We just got the results of that last week and it ended up growing three "bugs": the bacteria pseudomonas (what used to infect her with the UTIs so badly), klebsiella, and staphylococcus aureus. This isn't good news, and I'm not quite sure why she's not really sick with it. But the doctor called in the antibiotic cipro for us to have on hand and give her as soon as she shows signs of more sickness. The issue with cipro is that she's used it a couple of times before, and every time we use it, it's one less time that we can use it in the future, because it will eventually stop working as the bacteria becomes resistant to it.

She's had a ton of seizures today, and is sounding a little more junky, so I'm kind of waiting to see if she's starting to get sick again. Time will tell. She's been getting pretty sick with respiratory stuff about once a month, so in that regard, it is about time for her to get sick again. Of course, we'd love for her to prove that time table wrong any time, but recently that's been her trend.

Please pray with us regarding this latest news. It's been kind of hard for me to hear, for some reason, as I worry that it's just one more step in the wrong direction for her. Pray that we would trust the Lord, no matter what the future may look like, that we would have hope, and mostly that He would be glorified.


Well, it was a whirlwind, but vacation went well. Waverly enjoyed some special time with mommy the first part of the week while everyone else was gone, and then with daddy the second part of the week once we switched places. On the other end, both Johnny and I enjoyed some special concentrated time with the big kids while we were each able to be with them at the beach. I loved being able to pour into them, and not have to worry about splitting up or if something would be ok for Waverly or rushing back to get to her and relieve the other person. We are still sad that it had to be like that, but we feel like it was best for everyone. Especially since Waverly ended up sick on Tuesday (the day before I left to go down there)! She ended up getting better by the next day thankfully, as I was a mess for a while about the prospect of leaving her home sick (even though I knew Johnny would be with her and would take great care of her). I'm glad she cooperated and allowed me to enjoy my time away though!

Saturday, June 8, 2013

Everyday Life

Sometimes it's just hard. The seemingly little things you would never think about until you have to face them. Things that most people take for granted in everyday life. Like playing outside with your kids. When just one of us is home with all three kids, we have to weigh the options. Take the older two outside to play, and risk Waverly getting very sick from it from breathing in the pollen (and having to miss breathing treatments since they are so frequent), or make the older two stay inside the whole time, watching the beautiful day from the window? We can never do family errands together, unless we have a babysitter for Waverly. Occasionally if we are out and have her with us, we may make one stop, but that is very rare, because it is so much to get her in and out and it's hard on her to be out for very long. So, again when we have no nurse at home with Waverly, if Johnny and I want to go check something out together, we have to wait until someone is available to watch her. You can guess how many people are able to help us out with her. Now that it's nice out, there are lots of things happening in the evenings. Even simple things like neighbors outside hanging out and kids playing until later. The nurse leaves at 4:30, so we are left to decide which one of us stays in with Waverly and which one goes out with the kids. No more whole-family time outside until late in the summer evening. Even if we did decide to risk it, she needs to eat via feeding pump around 6:00 and breathing treatments start around 7:00. We can move that back a bit but it also moves back the rest of her nighttime care like cathing, etc. It just gets so complicated.

Family vacation. We both felt it best not to try to take Waverly this year. And it breaks our heart that our "family" vacation won't be our whole family. And what's more, like most things we seem to do now, it will be split. Johnny will go for the first half, then he'll come back, and I'll go for the second half. Because even though we have daytime nursing care, we don't have 24/7 nursing, so we can't leave her with someone and both be at the beach together. We won't be able to enjoy together the sound of our kids playing in the ocean or building a sand castle. And I worry about them, not seeing us together with them, not having their sister with them.

Even now, whenever we go somewhere, they usually ask, "Who's staying with Waverly?" because they know she doesn't go out often. I don't want them to disassociate her with our family. Not that they do, but they just automatically assume she will stay home from everything since she usually does. It is so hard to know what the right thing to do is.

Park trips. Church softball games. Gardening and outside work. Grocery store trips. All of these become big decisions as to what we will do, split up again or risk taking her out. Contribute to the separation or potentially put her health in jeopardy. It's just hard. And although I know some people have it even worse, and have had to face these questions for much longer, and have more to face than even I know or realize, it still just stinks. But it does make those family outings that much more special. The kids love it. And even though we are nervous about how Waverly will react (will she seize from overstimulation, cry all night like she often does from exhaustion from being out, get pneumonia again from exposure to who-knows-what), we try to soak up and treasure those sweet moments. So even if it just seems like a routine morning at church, or a family dinner out, or a trip to the park, if you see us all together, realize it is a very rare and special moment for our family. Turning ordinary times into extraordinary.

Sunday, June 2, 2013

A few pictures lately

Life has been so crazy and busy. I've had many posts and thoughts to share but simply run out of time and energy by the end of the day to share. But I realized I had some cute pictures that I at least could post!  

Waverly got some balloons for her birthday party (post to come) and LOVED looking at them when we brought them home. They stayed close to her side!

Sweet time with brother. 

She was less than thrilled the other night with her breathing treatments and had this face the whole time. Even with a grouchy face she's super cute!

These two are from this morning!  She isn't smiling a lot but we can occasional get some sweet smiles in the morning and then again at night when she's in bed.