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!

Wednesday, August 12, 2015

Been a while...

I know, I know. I've been even more terrible than lately with updating here. I've missed updating about her seizures (or mostly lack thereof!), her birthday, the summer. I'm sorry. And then I got overwhelmed with catching up. So, instead of continuing to wait and not update, I'll just jump in now and maybe catch up later!

Anyway, here we are! After the terrible bout with new meds and seizures back in April, she's done great! We had weeks and weeks of her being seizure free and happy, which was SO nice! In fact, she hasn't been this stable, in, well, a LONG time!

We've seen a few seizures here and there the past few weeks, the latest ones being due to a UTI that she just started antibiotics for this week. We've been relishing this time with her being so happy and healthy! Thank you for your continued prayers, and for checking in even when I've been so terrible to not update! I promise to try to do better! :)

And now, here's a picture of her on her birthday (May 8th)!

Tuesday, April 28, 2015

Update for this week


After last week's update, things have improved. She finally slept some on Friday morning, and has been sleeping at night and napping some during the day since. We stopped the Onfi completely, and it's working its way out of her system. So far her seizures haven't returned either, although the past few days she's been more twitchy, so I wonder if they are finding their way back possibly.

I also got a call last Thursday that she has a UTI as well, so we started antibiotics for that. Her urine grew pseudomonas, which is a very bad bacteria, and it's always a bit scary when it's a bad one like that. She's been junkier with lots of secretions and needing extra oxygen too, and working a little more to breathe (but not struggling), so we are keeping an eye on that as well.

My body shut down this weekend. I got a terrible migraine on Saturday that hasn't seemed to want to go away completely, and I've just been so tired from the past few weeks. Johnny is also tired, and our house is just weary. Please pray for rest and refreshment for all of us, as this can take its toll on our family.