Addendum, Ketogenic Diet Appointment, and Therapy

The last update was typed on my phone, and I tend not to be too wordy when typing on a small touchscreen keyboard. 

I will be taking Waverly to the doctor tomorrow to get checked out.  She was diagnosed with an ear infection last Sunday, and has been on antibiotics for that, after just having finished antibiotics the day before that for her latest UTI.  She literally went straight from one antibiotic to another.  :(  Her ear still looks red to us though.  We called the doctor on Friday and told him, but they said since she wasn't showing any other symptoms to wait and finish the meds and see.  Her urine has also been smelling strongly the last several days, so I'm a little concerned about that as well.  So, given her increase in seizure activity, and those two concerns, back to the doctor we will go. 

I'm honestly quite nervous if she still has an infection of either one, as it means she's getting very resistant to the antibiotics.  Of course, that's me worrying about something that is maybe not even true, so I know I need to let it go and just take what's in front of me and go one step at a time.  But it's still hard not to worry about the what if's. 

We are planning on trying the ketogenic diet to see if that helps with seizure control.  See here for more information about the diet, but in short, it's a high fat/low carb/sugar diet.  The science behind it is still unknown, but somehow it helps some children with epilepsy.  There are risks associated with it, so we will have to monitor her closely, checking her blood glucose levels, ketone levels, and blood work.  But for some children, the diet works really well to reduce or eliminate their seizures, and they are even able to reduce many of their seizure meds.  We can see a huge effect of the medication on Waverly now, as she is very sleepy, very low tone, etc.  So we have high hopes that if the diet works for her, we will be able to wean her off of some of her meds too. 

We had to go up to DC Children's Hospital to meet with a neurologist and dietician up there who will be overseeing the keto diet for Waverly.  They will work closely with her neurologist from UVA.  The plan is to start the diet on Sunday, but depending on results from this week, we will see. 

Finally, we are SO thankful for all the amazing outpouring of love and support that has been shown through our fundraising efforts for Waverly's therapy!  I don't have a full total yet, but close to $1000 was raised!  And we only did a few of the many suggested and offered fundraisers!  We are so humbled and blessed!  Unfortunately, with all of her latest troubles, we've decided to postpone any further therapy until we get her seizures better controlled.  The therapist and I both agreed that with her constant seizures and infections, it was too hard on her to tax her body more.  So, we have that money set aside for when she does get better to resume therapy.  Her therapist has been wonderful and understanding, and we can't wait for Waverly to be healthy enough to start back up hopefully soon!  We will certainly keep you posted on that.

Thanks for reading this long update and keeping up with our girl.  She's certainly kept us very busy the past few months, and we are feeling the toll.  We couldn't do it without all of your help and support, and so for that, we are very thankful!