<<PLOP>> Whew! Could I trouble someone for a glass of something cold and sweet, and maybe a huge slice of banana bread slathered in real butter - not Oleo? Wait - make that moonshine and the most fattening bag of chips on the market.
Just got home about 10 minutes ago from Billings....planned on making a high speed run there, getting back here about 1:00, and calling Caroline (luvblues7) to meet up with them in Cody. For starters I left my cell phone at home. Really stoopid move considering that I've been waiting to hear from Jenny all day. Then Tam could not, and I mean could NOT, find a pair of shoes that didn't kill her feet. She has some serious foot issues so it's so hard to find shoes that work. We hit about every shoe store in Billings - and never did find something that she could wear comfortably on the cruise. Katie was hungry and getting owly, so we stopped about 3:00 to grab an early dinner.
While we were walking from the car to Penney's after dinner, the wheel fell off my walker. No warning, no wobbling - one minute it was rolling along and the next it was rolling away. So when the walker came to an abrupt halt, I stumbled, fell forward and clobbered my head on some parked car's bumper. Just great...Tam and I went in (sans walker) while Ken ran over to Lowe's and got some little doo-dad he needed to put the wheel back on. It's a sign......I ain't supposed to take that doggone wheeled contraption on this cruise.
I made two calls the second I walked in the door. I called Jenny first. News there is pretty doggone good. Kendra still has the same sized ventricles she had on her last MRI, and the amount of fluid in them hasn't changed. And the Chiari Malformation is also the same size and in the same position that it has been as well. So our Little Warrior doesn't need any surgery for either the malformation or shunts. Yayyyy!!!!
They think that what's happening is that her seizure activity has changed. Whether it's because her Onfi and Keppra levels are too low or it's the wrong combination of seizure meds is the question. We know from her EEGs that besides the obvious seizures we see she has many silent seizures that don't show up except on the EEG. Her neurologist thinks that the family history of migraine (Kenny, Jenny and me) and epilepsy (me, Jenny), and the uncontrolled electrical activity in addition to the fluid on her brain are causing these severe headaches. So tomorrow they begin the search for a better combination or different dosages of what she's currently on, plus the addition of some kind of pain medication for the headaches. They are bad - she presses her hands against her head so hard that her little fingertips turn white and she just cries and cries. It's heartbreaking. But now we know what we're up against and Kendra fights on.
The second call I made was to Caroline.....are you reading this, my dear? I left a message on your phone, but I figured by now you'd found something interesting to do or had checked into your hotel and are ready to call it a night. I am so sorry I missed you - I was looking forward to it all day long and planned to give you a call as soon as we got home from Billings. I just didn't expect to get home this cotton-picking late. I'll PM my number to you anyway. But if we can't seem to hook up, please drive safely heading for home, my friend.
Okay, caught up...I think. Deb, loved your story about your own personal "construction crew" and I'm loving looking at the porches. Um, does Deb's count as a porch? It's more like a spa!
Thanks for all the prayers and good wishes for Kendra. We accept them gratefully and humbly. I wish you all could hold her in your arms and look into those eyes - see one of her rare smiles - hear her giggle - and watch her as she learns to do things that most 10 month olds are doing already. She is a total inspiration, and I'm so proud to be her Gramma!
