Thursday, September 27, 2012

A day (or 138) late...

Without further ado, here are the pictures from Waverly's First Birthday Party!  (Yes, from May...)

Waverly with Grammy

Getting some snuggles from Julia

So many people came out to love on our girl!

Smiles for Grandpa

Hanging out with Aunt KK


Tasting some icing from a cupcake!  Yum!

Sister love!

Cousins meet for the first time!

Wednesday, September 26, 2012

Another UTI

We found out in Monday via testing they did while Waverly was in the hospital that she had yet another UTI. We are treating that now but unfortunately had to cancel our scheduled appointment and testing with the urologist in Charlottesville because the tests are dangerous to do while the patient is infected. Please pray that we are able to get another appointment very soon and that this infection responds to the antibiotics. As it is she is already getting strains of bacteria that can be resistant and hard to treat.

She's also been really junky since returning home from the hospital on Friday so we have been really aggressive with albuterol nebulizer treatments and chest pt to try to help her clear up. We'd appreciate prayers for that as well!

Friday, September 21, 2012


The good news is that we were able to come home today.  Unfortunately, though, the results of Waverly's EEG show that she is not only having the Infantile Spasms, but her brain waves are back in hypsarrhythmia again.  Basically, that means her brain activity is very chaotic and disorganized with lots of spikes and epileptic activity.  If you recall last year when the IS had first started, after just two weeks her brain was so fried that she was "gone" for quite a while.  She lost her smile, her eye contact, her head control, her coos, everything.  It was a really hard thing to see.  Although she isn't quite "gone" from us yet in that sense, I had been noticing the past week or so that she's been a lot sleepier than normal, and not as talkative and smiley.  So I know the hypsarrhythmia has already affected her brain. 

The other bad news is that the neurologist said that each time the IS come back, they become harder to control.  Given that she's already close to the max dose of her specific IS medication, we are going to aggressively increase one of her other seizure meds that some say treat the IS (but it isn't typically first used for IS treatment).  We've already begun that increase with tonight's dose, and are praying for quick results. 

Would you please pray with us?  Pray that the increase in meds works, that the IS don't steal her away from us again, and that her other seizures (which we've seen more of as well) would respond to the increase also?  She also has been very junky sounding, and after this morning's breathing treatment in the hospital, has been coughing a lot.  I'm hoping that it was just that the respiratory therapist maybe went a little too far back in her throat when suctioning and irritated it, but her sats have been a bit lower since coming home and her heartrate has been a little higher too, and I'm nervous. 


Over the weekend last week Waverly started having infantile spasms again. If you recall they are a very damaging type of seizure and are bad news. We know that seizures are part of her condition, and it's a matter of controlling them but not medicating her so much to the point that she's unresponsive. However with the IS, they are so damaging that you want to get rid of them completely and quickly. (When she started with them last year they were so bad that after two weeks she no longer smiled or interacted at all, for several months!)

As a result, her neurologist asked us to come up to UVA for EEG testing to see what's going on and what to do with her medication.

We have been here since Wednesday afternoon and after a crazy fiasco of not being put on the EEG or even getting out of the ER for over 24 hours, she is now hooked up and we are rolling. We should hear from the doctors soon and have some direction after speaking with them.

Sunday, September 16, 2012

Update-therapy and bronchitis

We are just checking in to say hi and give a quick update.  Last week Waverly saw her pulmonologist (lung doctor).  It was a regularly scheduled check up with him (every 6 months or so).  He expressed concern over her breathing sounding so junky and being so shallow.  He diagnosed her with chronic bronchitis (add it to the list!) and is working on getting a "shaky vest" (technical term?) and a cough assist machine for her to help her loosen her secretions and get the junk out of her lungs.  She's sounded bad for a few weeks now, but is mostly upper airway/chest, so we are just keeping an eye on things and being proactive in her treatment so it doesn't turn into something worse.  We will also continue with albuterol and saline nebulizer treatments to help her get it up and out as well.

Her therapy the other week went well.  It's kind of a "time will tell" thing as far as how much difference it is making, but we are continuing to work with her and will see how she does over the next several weeks.  She goes again this week.  We have been running a few fundraisers to help pay for the therapy and travel to get there, and have been amazed at the response!  We are once again so thankful for the Lord's provision and for how many people are just asking us how they can help out.  THANK YOU to the many many people who support our girl and our family.  We are blessed to have you along for this journey!


Just a quick shout out to my Grandpa! 

Tuesday, September 4, 2012

New Therapy!

We are so excited to tell you about a new therapy that Waverly will be starting this week!  We have heard about this type of therapy for some time, and even found a therapist, but she is two hours away.  That, plus the cost (it's not covered by insurance), have made us slow to move forward with the decision to try it.  But, after much prayer and thought (and many questions by us to the practitioner!), we decided to go forward with a two month trial period. 

The therapy is called the Feldenkrais/Anat Baniel Method.  It basically focuses on training the brain to form natural movements (as opposed to traditional therapy, which focuses more on just muscle manipulation).  I have been in contact with many people who have gotten this therapy with their children with brain conditions, and they have seen great results.  We are being realistic in what we should expect, but are really hoping that she benefits some from it.  Our biggest goal is to see her gain better head control (she currently cannot hold her head up on her own at all, unless she is tilted forward and can hold it against gravity for a short time; otherwise it flops straight back or to the side if she's upright).  

We are going to be doing several fundraisers to help raise the money to make this therapy possible.  Since it's not a standard type of therapy, it is completely out of pocket.  Not to mention a four hour round trip each time we go.  She will be receiving two sessions each time we go, every other week, for a two month trial (8 sessions total).  We will then decide whether or not to continue. 

Would you please pray with us as we start this new venture?  I am nervous because of the extra that it will add to us, but also feel like we'd regret at least not trying.  We really feel like it could be a great benefit to Waverly and enhance her quality of life to be able to move with more ease and be a bit more stable physically, and we are excited to see what happens.