We have definitely seen some unfortunate changes in Brooklyn’s health this week.  As always, we’ve been in the cycle of fear/frustration then joy/victory then back again.

Brooklyn’s seizures are back and more consistent.  She has also had consistent episodes of heavy labored breathing.  We are managing both with powerful meds.

Corrie and I are ok with these changes.  They are difficult to witness, but we’ve known they would come.  We are incredibly thankful that they have taken so long to present themselves!

We have been in constant communication with our pediatrician and the doctor from Hospice.  Everyone is in agreement that Brooklyn is declining.  We’ve known from the beginning that her decline would likely be quick or gradual.  The fact that her decline seems to be gradual, at this point, is definitely another blessing.  There still isn’t a timeline for how long the decline will take, so we continue to celebrate and enjoy her.  I know we are both soaking up every minute and can’t take our eyes off of her beautiful face.

Yesterday was a beautiful day in Austin, so we took a quick hike to the top of Mt. Bonnell and enjoyed the amazing views! (pictures below).  We also had a quick opportunity on Sunday to grab some pictures of Brooklyn without her oxygen cannula and feeding tube before inserting new ones. (picture below)  Corrie and I love seeing her chubby cheeks and nose without the tubes!

A couple things you can be praying for:

-Brooklyn’s decline remains slow and she stays comfortable

-Corrie and I stay healthy (we’ve both battled minor colds/viruses)

-Corrie and I don’t find excuses for not doing the things we want to do with Brooklyn and just jump on the opportunities.

Thank you so much for all of the love, prayers, and support!  We feel it!

If you’d like to, friends and family have been providing us with dinner.  This has been a HUGE blessing and helps us keep focused on Brooklyn.  A Care Calendar was set up for you to easily sign up for meals.  People outside of Austin have used a couple food delivery services which have worked well.

Care Calendar:
Calendar ID:  132854
Password:  7403

Food Delivery Services: Zip Code is 78757

Lots of love,


Brooklyn and Corrie on top of Mt. Bonnell

Brooklyn and Corrie on top of Mt. Bonnell

Adam & Brooklyn on top of Mt. Bonnell

Adam & Brooklyn on top of Mt. Bonnell

Brooklyn without her oxygen cannula and feeding tube

Brooklyn without her oxygen cannula and feeding tube

4 thoughts on “Changes

  1. Thanks for keeping us up to date and for the tip on helping w/food from a distance. We continue to lift you up. You continue to lift us up!

    Dennis and Dana


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