Go Sophie Go

Sophie has been working hard on her bike riding, recently transitioning to a bigger bike. 

Berries

Best motivation to get Cece walking...berry picking!  

Rest in Peace, Aunt Patty

Aunt Patty passed away on 8/4/2018...Rest in Peace

Home at last

Last week in Florida

While Mike and Sophie help Cece get through her last wk in Florida,  I've come home to return to work and hold down the fort.  Feeling more human today after the long flights Sunday and Monday.  Piper has been giving me lots of love, enjoyed a lovely stuffed pepper from a wonderful friend, and Fluffy has been pure entertainment.  

Cece had a tough PT session today but survived (true MHE warrior).

Sophie got to go swimming and Mike took the girls to CR Chicks for dinner followed by card games.  Can't wait for Saturday when we'll all be reunited again.

Sophie

It's impossible to truly describe how difficult MHE is for our courageous Cece and how it impacts the entire family.  For this trip to West Palm Beach, Cece and I spent the first 2 wks together for testing and the surgery while Mike and Sophie held down the home front.  I'll leave today to return home and work while Mike finishes this last week of therapy and appointments.  So sweet Sophie and I spent yesterday together for swimming,  school shopping and Chick-fil-A (my first time...Wow!  Loved it).  I'm sad to leave now but know that we'll all be together again in 6 days.

Friday

Friday brought us Mike and Sophie all the way from Kodiak.  They brought salmon berries that Grace and Sophie picked.  (Cece loved them and ate them straight away.)  Cece also had her first outpatient physical therapy session.

(And 2 Florida beers I had waiting for Mike) 

Little by little

Cece stayed a second day - night in the hospital and now we're ready to go.  She's making gradual but steady progress recovering from surgery with her pain fairly well controlled by her meds.  We're just waiting for all the details and steps to be completed for her discharge (the irony is that it takes three times as long to get out than in).  

Tonight, she's looking forward to eating blueberry Mochi ice cream.

Tomorrow night, we're so excited that Mike and Sophie will be joining us here in West Palm Beach.  And Piper gets to vacation at Chez Wilco.

The first night

It's early morning after Cece's surgery and I'm glad the night is over.  This was a tough one.  Even though her surgeon didn't do the planned "shordt" procedure (fibula was very fragile from pressure and friction from the large osteochondroma), her pain was severe last night.  She's resting comfortably now and being lulled by the drama of a Grey's Anatomy episode.   Last night, Impractical Jokers was her distraction.
Here’s to daily improvements, rest and healing.

Surgery's over and Cece's doing okay

Cece has just finished with her surgery and now I'm just waiting to go back to her in recovery.  Such a long day...intake problems which delayed us for 45 min this morning and  then surgery delayed for over 4 hrs due to more time needed with some other prior surgical cases.
But now she's done and now we start focusing on her healing.  (Picture above is Cece right before her surgery.  Tired but she did amazing!)
Her surgery changed as her fibula was paper-thin.  I'll detail more when able.  Please keep Cece in your prayers and sending Good vibes her way.

Surgery day

 Today, Cece is getting ready for her left ankle surgery...scheduled for noon.  Please keep her in your prayers and send her lots of good vibes.
-Roxann

Sunday

As Cece is trying to stay cool in this Florida heat, Sophie and Piper have been busy fishing at home.  Next Friday, they'll join us here in Florida (Mike and Sophie) while Piper gets to stay with her second family.  I hear Piper is very excited for her dog - cation.

Friday and food

Cece completed the last of the medication trial testing on Friday.  A 1.5 hour MRI for which she had to wait 4.5 hours for...sigh.  No food or water as it was a sedated test.  This has been a tough week.

But on a bright note we have gone to her favorite restaurant twice- Seasons 52.  She got steak with a shot glass dessert and I thoroughly enjoyed this watermelon - tomato-goat cheese salad.

Bad news

Well darn it...more bad news.  Dr. Feldman told us yesterday that Cece's left ankle surgery will be much more complicated than we had thought.  She'll have the tibial exostosis taken off but also needs her tibia shortened.  6 wks non weight bearing.   And middle school starts in about 5 wks.

Despair

Please keep Cece in your prayers and sending her Good vibes.

Testing testing 123

Cece has been so strong these past 2 days.  New tests for the medication trial and for her upcoming L ankle surgery.   Hearing test, EKG and dexascan all went well.  Tomorrow,  Friday,  she has the big one...1.5 hr MRI under anesthesia.  Send prayers and good thoughts her way.

Return to West Palm Beach

On Monday,  Cece and I traveled to West Palm Beach, FL for a trip full of tests, new medication , surgery and therapy.  Our least favorite question is...are you going down for a vacation?  Sigh...if only we were.
Cece is on step 2 of enrolling in the first medication trial for MHE.  This medication is the first hope of a non-surgical treatment for MHE.  As it is still in trial stage, Cece will be closely monitored for the next 2 yrs while she is on the medication (full-dose, half dose or placebo...we just won't know as it's a blind study).
We made it Anchorage with no problems on Alaska Airlines.  But as we were waiting to board the Delta flight to Atlanta, a slightly scruffy male airline attendant announced that our flight was delayed until midnight.  A half hour later, they announced the flight would actually be delayed until 630 am the next morning.   Ugggg.  Luckily we were able to get on another flight.  Made it to West Palm Beach just a few hrs later than originally scheduled but without our luggage.
But we made it.

Cherish the little moments

Not sure where to begin....but Summer 2018 has been busy for all of us.  The girls decided not to go to summer camp this summer so we've started swimming early in the mornings twice a week, they're seeing a tutor twice a week, having play dates- sleep overs, and generally enjoying some unscripted days.  Salmon berry picking has been a high light for Cece and Sophie has recently been excited about hair bows and playing her piano daily (no prompting or reminding needed- she just enjoys it).  We've been luckily enough to go to Afognak island twice to spend time fishing, visiting with friends and setting off fireworks. Lovely, quiet moments before the chaos begins... medication trial, testing and surgery.

Crabfest 2018

Every year in Kodiak we have Crabfest. This year me, my friend Olivia, and my friend Natalie we went to Crabfest after the last day of scool.  We went on the Sizzler and the Tornado.  -Sophie 

Piper vs fish

Piper met her first fish- King salmon.  Piper is a F2 GoldenDoodle and
likes everyone. She is one year old.  -Cece