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. 

Wednesday, May 28, 2014

pH probe

Waverly just got taken back for an upper endoscopy and pH probe test. The test is to determine if she is experiencing reflux and will need further intervention. The reflux could be responsible for some of her recurring respiratory issues. Please pray for her as she will have general anesthesia and will stay overnight inthe  PICU. 

Even though you'd think I'd be used to procedures and tests by now, it's still hard to let two nurses wheel your baby away in a bed into a room and have to go out in a waiting room away from her. I'm thankful, though, that her Heavenly Father is always with her, not hindered by policies and doors and confined to waiting areas. She is in His hands, even when she's not in mine. 

Tuesday, May 6, 2014

Always

For 3 years now I've had to turn off the radio when this song has come on. I was so terrified of being the woman he mentions in the beginning. But this morning when it came on I let the song play, crying the whole way through yet again.


There were many times that I did not think we'd make it to this point, celebrating Waverly's 3rd birthday. It's still 2 days away, and as she showed us yet again this weekend, even the next day is not a guarantee.

 
But I am so profoundly grateful that God has chosen to allow us more time with our precious girl than we thought we'd have.

 
But know this: even if she hadn't made it to her 3rd birthday, and no matter what the future holds for her or any of us, we believe and know that always, ALWAYS, our Savior never fails.

And He is with us, always.



(For an interview on the story behind the song, go here.)

Monday, May 5, 2014

Pneumonia again




Well, the little stinker has done it again. Another pneumonia. Right before her birthday. Thankfully we caught it early. After debating Saturday evening whether to take her to the ER or not, we decided to try to keep her home to sleep in her own bed and take her to the doctor Sunday morning. She did ok thru the night but was definitely feeling rough Sunday so we paid him a visit and he said she sounded like she had pneumonia. So she's on an antibiotic for that and so far she's been able to maintain her oxygen levels ok at home on the cannula and bipap. 

Thanks for praying for her!  Pray that she feels better by her party this weekend especially!