Summer Pictures

Just a few cute pics from earlier this summer.  Enjoy!

Just tired-Stream of Consciousness

It's been a crazy few weeks.  We've had lots of traveling (one trip to visit family that corresponded to a work conference for Johnny, and another trip to visit friends).  We've had sickness (some sort of congestion/virus for Waverly that's passed through Johnny and me as well) that turned into an ear infection for her, exposure to strep throat and croup, a new diagnosis for her (she's BLIND: I'll blog more about that later), and just some emotional things for me to deal with in the midst of all of this.  Needless to say, I'm feeling pretty weary these days.  There have been blessings in these weeks too: sweet time spent with family and friends; time spent together just as our family; wonderfully behaved kids on long car rides. 

Sometimes, I wonder if this is just old hat for people now.  They see Waverly out and about, see us dressed and put together, and assume everything is great and we're all doing so well.  But there are times when I feel like I am running on empty and don't have much left to give.

I am looking forward to fall and hopefully things calming down a little bit more.  We have one more trip this month for a cousin's wedding, and another one next month for a family event, and of course football games are coming.  I don't think we'll ever be bored!  I know all things considered, we are so blessed.  Waverly has been relatively healthy (read: out of the hospital), but there are times when I feel like we are just waiting to go back in (like with her UTIs).  I'm exhausted, yet not sleeping because there is just so much on my mind and I long for a break, but never truly get one since there is so much work in just arranging care for her and the two older kids.

But I am savoring the little things.  The times when Waverly fusses because she's tired and wants to be held, and then stops when I pick her up and nuzzles into me and drifts off to sleep.  Playing cars with my son.  Reading with my daughter.  Family walks pushing Waverly in her wheelchair or stroller while the big kids ride their bikes.  Quiet evenings on the sofa with my husband after the kids go to bed. 

Thanks for your sustaining prayers in all this time.  I know that those prayers, and God's good grace, keeps us going.  

Ear Infection

Last week on Monday evening Waverly had a rough night with being up sneezing and coughing.  We were visiting family with dogs, and although she's been around animals in the past I thought maybe she was having allergies.  But she continued with her congestion, and although it didn't get worse, it didn't seem to get better, so we figured it must be viral.  We took her to the doctor on Monday of this week and she was diagnosed with an ear infection, and is being treated with amoxicillin for that now.

We also have been talking to her nephrologist (kidney doctor) who is now referring us to a urologist at UVA since she's not quite sure how to treat her recurrent UTIs.  That appointment isn't until October (for now), so please pray that we can either get that appointment moved up or that she remains free of infection until then (which given her track record would be a miracle).

Beach Pictures

Here are a few more pictures from the beach (late!).  This was Waverly's first time ever in a swimming pool.  She liked it!  :) 

 Big sister was so happy to have her little sister swimming with her!

 Getting some great-aunt love!

 She had some crazy hair too!

 A few family pics.  :)

Another UTI...

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. 

Conversations

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. 

Updated Info

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!