Thursday, August 21, 2014

Uti and pneumonia

This is how we spent our day. After a rough night with fever and one throw up, the doctor wanted to see her and then sent her on to the ER for X-rays, blood work, etc. She has aspiration pneumonia and is starting an antibiotic for that, in addition to the one she started last night for a new uti. Thankfully her oxygen sats have been ok although she's had a fever and high heart rate and respirations. She definitely feels bad but wasn't acting too sick so the PICU doctor agreed to let us take her home and treat her here. If she gets worse we will just call him and go straight to be admitted to the PICU. Please pray that she stabilizes more tonight. That her breathing rate and heart rate slows down. And that her oxygen remains good. 

Sunday, August 10, 2014

Heart Thoughts- Siblings

They were playing yesterday on a rainy day. Throwing the ball and laughing away, with the typical sibling squabbles that came up occasionally too. And I looked at Waverly laying there in the next room on her mat, and her eyes were talking to me. She even made a few noises. Whatever she was trying to tell me, she was very serious and intent. 

"You want to go play with them?"

So I disconnected as much as I could, hoisted her up, and we went to her siblings and played ball (yes, in the house!). They shared it with her and rolled it to her and helped her throw it. 

Then, the fighting happened. Waverly got selfish and kept holding the ball away from them. "Waverly, give it back!" 

And they'd take it out of her hands. And they'd play a bit more and then "she'd" do it again. She even hit her sister a few times! 

"Waverly, you need to share and be kind," I'd remind her. 

And I had tears in my eyes. Most mothers would give anything for their children NOT to fight and squabble while playing. Goodness knows I could use a break from the older two getting into it about almost everything all the time. 

And even though I was "making" her cause a little trouble, I had to do it. At that moment I longed for things to be "normal". For my 3 year old to want to tag along and play with her older siblings. To have them laughing and playing together, like they were. But I knew that a little squabble would be part of it too. That as a typical 3 year old, I'd have to remind her to be careful and to share and to not be too rough with her sister. So I had her do those things too. Normal siblings play together. Normal siblings fight some too. And for a moment I had a tiny glimpse of what it could be like. 

And they all had a blast. 

Sunday, July 20, 2014

Family Vacation!

So, to follow up this post, here is what we were able to do instead of a whole-family beach vacation! We took a weekend and went up to the Harrisonburg area. Our sweet friends were gracious enough to let us stay in their home (even though they weren't there!) and enjoy time swimming in their pool and enjoying a few fun things around the area, as well as visiting with friends and family. It was a great and fun time, and the kids were thrilled to have their sister along with them!


We left on July 11, which was free Chick-Fil-A day and also 7-11 day. We grabbed our cow shirts and went by Chick-Fil-A on our way out for some free chicken for lunch on the way there. Then, a few minutes from our friends house is a 7-11, so we surprised the kids with a stop there for free Slurpees! (Kathryn thought we were going to miss 7-11 day and was despairing that she had to wait a whole year before getting a Slurpee-I think she thinks they are only available on 7-11 day! Don't tell her otherwise...!)

This was Waverly's set up for sleeping. Can you find her? 


One of our activities was going to the Children's Museum. Kathryn loved being a weather girl! She was also so cute, pushing Waverly around and showing her things there. 

I was so happy that my sweet friend Brooke and her kids could meet us there to play! We've been friends for over 20 years! (Wow, that makes me feel old!!)

The kids.

Our family! 

Another van selfie. We don't travel lightly.  :)
We are so thankful to have had the perfect set-up for our trip. The house we stayed at was all one level and open so we could all be together, and the pool had a screened porch right off of it so we could have Waverly there when she wasn't swimming with us (I don't have any pics of her swimming!). We were blessed to worship at the church we used to go to and see family and friends. The kids had a great time and Waverly did really well! She had several seizures where she stopped breathing, but we expected that since we were doing a lot of activities with her, which she isn't used to. But she did better than I would have thought, so I am so thankful for that!

Left Behind

I wrote this exactly a month ago today, just after we went on vacation. And I have debated since whether or not to post it. But there's a happy follow-up to it, so here goes. 
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We left her behind.

Sometimes, it's hard not to feel like I'm doing the wrong thing. Sometimes, there's just no "good" decision. That's how this past week felt. It was our yearly family vacation to the beach. We at first were planning to take Waverly along, but as the time got closer and we started to make arrangements, it just didn't feel right. A 6 hour car ride, plus camping in a pop-up, just felt like too much to ask of her. 
 
Last year my husband and I swapped places. He went for the first half of the week, drove back home mid-week, and I left to spend the rest of the week. It was not ideal, but we at least felt like we each had some time with the older kids to love on and focus on them, as well as enjoy a little vacation ourselves. But we missed that time together. 
 
This year, because of God's grace and our wonderful nurses, we were able to use some of our respite hours and get 24-hour coverage so the 4 of us could go while Waverly remained home and was cared for. And it was wonderful, but my heart broke the entire time. Johnny and the kids went down on Saturday, and I joined them on Monday. 
 
That afternoon, shortly after I arrived at the beach, the 4 of us walked down there together, and I cried. I missed my girl and doubted the decision to leave her home. What if she would have been fine and it would have worked out, but we left her behind instead? I hate the splitting up that we have to do all the time, and I was painfully aware of it this week.
And honestly, there is an element of shame that I feel.
I feel guilty for the decision.
I feel bad that she was left behind.
I didn't take any "family" pictures at the beach because it wasn't our whole family there.
I felt like there wasn't any "good" decision.
I cringed every time someone said "Oh how wonderful!" when we told them our plans. Because it wasn't wonderful. It was sad. And it was hard.
But I am thankful. And it was also good. This life can be so confusing sometimes. It's hard to know what to feel, because everything has two sides and both are very valid and felt poignant.

Saturday, July 5, 2014

Way too long

I apologize for the silence here. We have been busy enjoying summer! Waverly has been doing relatively well. She had another uti and saw the urologist. We now are cathing her every 3 hours during the day and have started a profilactic (preventative) antibiotic daily to try to ward them off. Please pray that that's successful in treating them. 

We have noticed a slight increase in seizures, most notably the apnic kind where she stops breathing. They seem to occur when she's been extra stimulated or tired. But infections and sickness can also contribute to that so it's hard to tell if it's a true increase or because of her recent UTIs.  

Sunday, June 1, 2014

Home and another uti

Sorry for not updating before but not much to report. Waverly got home Thursday afternoon as expected. We did find out she has yet another uti unfortunately. So she is on Cipro for that as we try to figure out our next steps in determining why she's getting them so often again.