Update

Well, once again, what is going on in our household is taking a backseat to what is going on in our community.  I don’t say this begrudgingly…but in disbelief and agony for the many friends affected by the latest natural disaster to hit the Santa Barbara area.  The south coast hillside communities that were threatened by the Thomas fire last month (that ended up being the largest fire in CA history) were consumed with mud after a torrent of rain swept through Monday night.  There was little to no warning for those caught in the mudslide’s path…homes were swept off their foundations completely, many other homes are still standing but filled with 8 feet of mud.  Fifteen people are confirmed dead and 24 others are still missing.  It’s a difficult situation for many in our community to process and we are truly heartbroken for the many we know in these neighborhoods.  Please pray for the folks affected, the rescue and recovery efforts still underway and the amazing local agencies organizing everyone.  It’s an overwhelming situation.

Our introduction to the infusion part of our journey occurred this past weekend before the rain devastation.  I had my temporary IV midline inserted Friday in the early afternoon and my first Radicava infusion done at the hospital later that same day.  Rolf and I went back to the Infusion Suite at the hospital Saturday, Sunday and Monday afternoons and have been doing the infusions ourselves at home since Tuesday.  So far, so good.  The weekend also included getting both boys back to school after their 3-week Christmas break at home and a pre-planned visit with Oma so it’s been especially full.  My ankle is still quite sore but is definitely getting better.   I so appreciate your prayers and encouraging messages…thank you!  As has been the norm lately, ‘so grateful God’s fingerprints have been all over the surfaces of our family’s life in the midst of so many variables that add to the chaos of living right now.

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Bruised but better.

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Rudy had enough t-shirts that all three kids got a special “Rudy Throw” from Oma…every element in the blankets came from Rudy’s dresser. Bittersweet, for sure, but mostly sweet! Thank you Oma.
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There was a sea of “Rudy Blue” at this year’s Kisses from Katie fundraising banquet back in November thanks to the Manning Family and their thoughtfulness in honoring Rudy. Thank you, dear ones, for honoring our boy, sharing KfK swag with us and for your continued work in supporting those who care for critically ill children. Your efforts bless so many.   
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http://www.kissesfromkatie.org

So, I’m not sure what the next few days will hold for us.  Oma’s visit had to be extended a bit because she can’t get to LAX for her flight home…the 101 Fwy is completely shut down due to the mudslide.  An important meeting with my hospice case worker regarding future help in our home had to be postponed as well.

Rolf and I will continue the daily infusions at home through next Thursday.  The following step will be for me to get a permanent port placed in my upper chest and then we’ll resume the infusions the first week of February.  Very doable.  In the meantime, I have a speech assessment and pulmonary function test coming up next week so with all the calendar items from this week being postponed until next week, it looks like we’re in for a jam-packed schedule coming up.  That’s all we know for now.  Thank you for all the inquiries and follow-up messages.  The love and concern is such a sweet comfort.

Thank you, thank you!

 

4 thoughts on “Update

  1. SO grateful for your faithfulness with these updates. So much trauma everywhere and you are, remarkably, the calm eye in the center. You keep putting one foot in front of the other (even when one slips and the other sprains!!!). You are living it out, Trish. One day, one minute at a time.

    (I LOVE Oma’s quilts!!! My daughter commissioned one for each of her son’s made from Mark’s shirts – they are treasures.)

  2. Think of you every day and pray for you and the entire family. So glad the ankle is better, and that the infusions are going smoothly.

    Lisa has been sending info about the devastating mud slides/flooding, along with urgent prayer requests. I must admit, I finally just felt so hopeless and sat down for a good cry. 2018 hasn’t started the way I’d hoped.

    But that brings me back around to our Lord… In Him we can find comfort amid the grief and senseless loss. God is good… In every way.

    BIG love and many prayers, sweet Trish!

    XOXO

  3. Ouch! That ankle looks pretty bad. Been there, done that. Love the t-shirt blankets Oma made. Such precious memories will be brought back whenever viewed. Great idea. I wish I lived closer to help you in some way. I hope you sense our prayers and love we continue to send each day. Love you cousin, Dianna

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