Saturday, October 27, 2012


This past Wednesday we finally were able to head up to UVA for Urology.  She started with urodynamics, which is a study of how the bladder is working, including pressures, etc.  Then she had an ultrasound of her bladder and kidneys.  And finally we got to see the doctor.  The results are basically that all of Waverly's anatomy and functioning are normal.  Which is good news, except that we still don't know  why she continues to have all these UTI's (6 now in 8 months).  So, the doctor wants us to start catheterizing her every day, to help her bladder drain fully, and see if that helps.  If not, then we will add a bladder wash when we cath, and finally we will add an antibiotic solution to the bladder wash if needed.  So, the nurses taught us how to cath in the office, and sent us home with supplies and nerves.  :) 

I gave Waverly a couple of days off since she'd been cathed several times that day, and tried it for the first time at home tonight.  The doctor also wants to get an MRI of her spine to check for a tethered cord, something that I've been asking to check for several months now.  I'm glad that somebody finally agrees with me to get it done.  So hopefully that will happen within the next few months. 

Sunday, October 21, 2012

Sleepy girl

Not much to post as far as an update. Waverly's seizures continue to not be very responsive to the medication increases and new meds we've thrown at them (although she's had less the past couple of days). However she had been very very sleepy. She now spends most of her day sleeping. We still see an occasional smile when she's awake. I am not sure if it's due to her meds or the hypsarrhythmia or most likely both, but she can hardly keep her eyes open.

She's also been super junky in her lungs, and has yet another UTI (her 6th). Please continue to keep her in your prayers. When I sit back and think about what typical kids are like at 17 months old, running around, playing outside, etc my heart breaks as I look at my baby who sleeps most of her day and the other part of her day is spent in breathing treatments, dealing with seizures, etc.

But even at that, as I've watched a few mothers of children with Lissencephaly recently have to watch their precious little ones slip away from them, I am thankful to have more time with her.

When we were told of her condition, all the research says most children die before their second birthday. As we enter the fall and winter months ahead, with the promise of Spring on the other side, I can't help but wonder how much longer we have. Her second birthday is in May. In many ways we are blessed that she is still with us. And we see many children with her condition outliving those statistics these days. However, one of those precious children that just passed away this weekend was only 2. So as you lift up our precious girl with all her current struggles and issues, please take some time to pray for those families who are also struggling with their little ones, as well as those who no longer have their babies to hold.

Wednesday, October 10, 2012

Back home

Just a quick note to let you know that Waverly is back home now. She started klonopin at the hospital and will continue on that while we make plans. We got home tonight just before 9:00 and called about 7 pharmacies locally before we found one that had her prescription. Whew, that was a close one...!

Tuesday, October 9, 2012

Back inpatient

Waverly is back at UVA after a rough day with lots of long seizures, both infantile spasms and focal seizures where she turns blue. Johnny is with her tonight and tomorrow so I can work (yes, I started a full time job last week!), and then I'll head up there tomorrow night and stay till the weekend if she's there that long. We are looking to start a new medication for the time being while we wait for an appointment at DC Children's Hospital to start the ketogenic diet.

Sunday, October 7, 2012

Not much improvement

Please continue to pray for Waverly as she battles these Infantile Spasms.  We haven't seen much improvement since we've been working on medication increases.  She is now at her max dose of the Sabril, which specifically treats the IS.  We have increased her Topamax too, which isn't specifically for IS but is for seizures in general, and she continues to have them as much as before.  The doctor isn't really keen on doing more steroids, and we couldn't until just recently since she had an infection (UTI).  We did get a few really sweet smiles out of her yesterday, but in general we aren't seeing much of them anymore, and it breaks my heart to see her struggling so much.  I hate seizures and how they steal life away.....

First pigtail!