Tuesday, September 22, 2015

Physical therapy

Waverly was not too impressed with physical therapy last week! 

Wednesday, September 16, 2015


We've been on this journey now for over 4 years. So you'd think that we are pretty used to dealing with the daily life that is ours. And for the most part, we are. However, today I experienced something that I haven't for a while. 

Usually, I am amazed at my ability to speak of our lives and all we go through with a stoicism of sorts. I can explain how we have to deal with our daughter's mortality with a straight face, and wonder if people think I'm weird for not bursting into tears. I guess it's just something we are used to at this point. 

But every so often it sneaks up on me. Today, it was in talking to my daughter's teacher. I felt the tears start to form and my throat got a lump. Where did that come from? 

It reminds me that even though this is "every day" common for us at this point, it's still hard and a struggle to have to reiterate yet again the seriousness of her condition to someone new and what that means for her and the family. 

So, that is my confession for today. 

Wednesday, August 26, 2015

We are home!

Sorry for the blurry pics, but just wanted to update that we came home from the hospital yesterday late afternoon! She had been having a fairly good day, so they gave us the option to leave, knowing that we'd still have our work cut out for us at home. Because we missed our family, and aren't afraid of hard work, we of course said yes. Unfortunately, later that evening she had a really hard time for a while that left us second-guessing that decision. But after some more breathing treatments, we got her relatively stable, and she stabilized even more after falling asleep.

So far today we have been continuing with aggressive breathing treatments, antibiotics here at home, and she's been on her bipap most of the day to help give her breathing support. We appreciate all the prayers, calls, and texts. We couldn't walk this journey without your love and support, and without the grace of our Heavenly Father sustaining us!

Monday, August 24, 2015

August is NOT Awesome

So, August just seems to be a crummy month for our girl.  One year ago at this very same time of the month, we were in the ER with Waverly with pnemonia. (We were able to avoid a hospital stay that time.) Two years ago she was also in the hospital, a very sick girl. Three years ago we were dealing with ear infections. After battling a UTI for two weeks (due to the wrong treatment the first go-round), she woke up on Friday morning struggling to breathe and very junky. So, after a visit to the ER Friday afternoon, she was admitted to the PICU for pneumonia. She's had a fever, low sats, trouble breathing, and not tolerating her food. In Waverly fashion, she's making some improvements, with some setbacks along the way. She seems to be doing a little better today, tolerating a few hours on her nasal cannula with 3 liters of oxygen, but needing her bipap most of the time so she's not working so hard to breathe. We just started her feeds back today, at a very slow rate, and are working on weaning her off the bipap use to being on her cannula more. Please pray for her, that she would continue to improve, and that she'd be able to come back home soon! 

Great Wolf Surprise!

The last weekend of summer, we surprised the kids with a weekend trip to Great Wolf Lodge! The older two had been wanting to go for quite some time, so it was so fun to wake up on Saturday, pack the car up, and watch their faces be surprised as we pulled into the parking lot! (They had no idea!)

As you can see, it takes a LOT of packing to bring Waverly along! We certainly don't travel lightly with her! 

This was our setup with her. She slept on the pull-out couch bed and had machines and tubing hanging all over the place. Sometimes, being a special needs mom is all about innovation and engineering!

Waverly enjoyed swimming in the pool, and even got to do a few slides! Big sister was there to help catch her!

We were all tired after a long weekend of tons of fun!

Tuesday, August 18, 2015

Another UTI

So, we are battling yet another UTI here. After a few seizures last weekend, her nurse texted me on Sunday while we were at church that she had just had a lot of blood in her urine. I was already planning to take a urine sample to the lab that Monday because of the seizures, but that of course confirmed that. I called first thing last Monday, got a sample to the lab, and started antibiotics. It grew pseudomonas again (Yuck, that's a bad one!). We didn't get word that it was pseudomonas until Thursday night, and she saw her urologist on Friday. He does not agree with that antibiotic to treat that bacteria (which I questioned 3 times last time she had this and was assured it was fine), so we took a sample to the lab on Friday to get retested to see if it was killing the bacteria. After a SUPER frustrating time at the lab, they still did not follow the orders to culture the urine, so we had to take another sample back to them this Monday. I spent hours on the phone trying to figure out the issue (still not sure what happens each time we need a urine culture and why it's so hard to get one actually done). So, we should know tomorrow if it's clearing up, and where to go from here.

In the meantime, we had a BLAST this past weekend taking a family vacation trip ALL TOGETHER to Great Wolf Lodge! Pics from that to come...!

New School Year, Same Message

And, the crummy part of a new school year: informing all the new teachers about the special conditions at home and how stressful it can be on the family and what to look for in the kids. I remember meeting with another special needs mom here locally when Waverly was really young and her saying how hard it was every year to tell the teachers that this could be the year her son's sister died. (Too harsh? It's reality for us, and many others.) That sweet girl is now 26, so there's hope! But it's still crummy! However, I am SO thankful for our amazing school and how they love and shepherd our children through all they face! Such amazing kids we have, and a wonderful school as well!