Waverly woke up on Tuesday morning of this week with 4 seizures and a slight temperature. So after finding a place for the big kids to go, we headed on over to the doctor's office to get her checked out. I already suspected a UTI. After 3 catheter attempts, and a long wait for her bladder to fill, we finally got a urine sample. It looked clear and the initial quick analysis was clear, but two days later the lab report from the culture came back positive for pseudomonis again (the same bacteria she had last time). Apparently this type is very resistant to antibiotics, and isn't stopped by the prophlyactic antibiotic she currently takes daily. So, she's back on Omnicef to treat this infection, and we are doing lots of research to try to figure out why she's gotten 4 UTIs now in 5.5 months.
This morning, I had a quick but sad-to-my-heart conversation with my 5-year-old.
K: "When Waverly gets older, she'll be like, 'Your name's Kathryn, and my name's Waverly." pause.... "She'll say that mom, right?"
me: "What do you mean?"
K: "Will she say that? She will, right?"
me: "Well......, she probably won't be able to talk. But she can still talk to us in her way."
K: "Yeah, like she can say 'hmmm' and cute stuff like that!"
me: "Yup, she talks to us in her own way. And that's very special. Just like it's special how you talk to us too!"
It's so hard for me to not feel like I am dashing her hopes in who her sister is going to be. I know kids are resilient and often it's our own perceptions imposed on them and their feelings. I try to be honest but gentle in my answers to her questions, which are actually pretty few and far between. But they are still hard for my mama's heart. In the meantime, I know that the Lord is molding her into an amazing person who will have such a compassion and heart for others. The matter-of-fact way she deals with some of these hard things, like seizures and seeing her sister blue and noticing that she's different from other babies is already shaping who she is and who she will become. I pray often for the Lord's plan for these two older kids and all they are experiencing through this.
So, we haven't seen any of her "blue seizures" (as we call them) since last Wednesday!!! After having 23 of them in the previous 6 weeks, this has been quite a nice break! So it appears that the Topamax is working (we started it last Wednesday). She seems to be tolerating it pretty well, and we've even increased it since she's started it (it's a titrated dose, meaning we do it in incremental steps). We are so thankful to see our baby pink, all the time, instead of seizing and blue every day or two.
With the extreme heat we've been having here, though, we have had to be careful with her since one of the biggest side effect concerns is the inability to sweat and control body temperature. That means she could easily overheat, so we've basically had to keep her inside. The times we have taken her out have been later in the evening when it's cooling off (and even then we've taken ice packs to keep around her), or one time at a friend's house in their pool. When she wasn't in the pool (in the shade), she was still wet and in the shade with water being poured over her head to keep her cool, then inside their house.
We have also been trying her on a new formula, Pediasure Peptide. It's a partially broken down formula and appropriate for "older" kids (as in, not infants). She seems to have tolerated it well, so we are making the switch from her baby formula to that. She's growing up!
She also now has 3 teeth! She cut her third one, another bottom tooth, a few days ago.
Finally, today she was literally giggling. Something Jackson was doing or saying was making her let out short little laughs this evening. I tried to catch it on video but it distracted her and she stopped. It was so fun to hear her giggle though! We've never really truly heard a good, true laugh from her, but these quick little giggle sounds are music to our ears!