Happy Thanksgiving 2016

November 24, 2016 by

I’m cuddled up in bed still…getting ready to hit the kitchen for some fun food prep but enjoying the chill in the air and being under the covers.  Rolf is getting ready to go out for his daily paddle and the big kids are still asleep sprawled out on the living room floor after a movie night.  It’s a quiet start to Thanksgiving 2016 and I’m thankful for today…Wilson’s home and we’re looking forward to a fun celebration with friends later this afternoon.

So before things ramp up around here.  I just want to say…Thank you friends!  Thank you for your kindnesses and encouragement.  Thank you for your prayers and support.  Thank you for expressing your love creatively and for being the hands and feet of Christ in the life of a little half heart and his appreciative family.  :)  We are rich!

Here’s a little glimpse into this weeks riches…

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Teacher Tracy speaking Rudy’s love language with the new incentive chart she made him at school.

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A quick visit from Nurse Sara and Kayley was a perfect start to Thanksgiving break!…

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…as was a trip to Kyle’s Kitchen with Kathy and Carter!

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Oh yeah, we’ve made a few stops at K’sK this past week…

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The latest being last night!

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Honestly, we’re out of control!

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But the highlight of yesterday was, by far, the SBRM Thanksgiving feast! An afternoon of yummy food, great music and special guests & volunteers!!! There was a sweet spirit of celebration among us all and Rudy was in heaven…(photo credit Dale Weber)

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Serenading Daphanie with big brothers!

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Insisting Wilson’s shakers were binoculars!

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Joining in on the act!

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The Geyling Brother Trio!

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Finding his groove with buddy Ric!

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Chillin’ some more with Ric and meeting new friends!

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(photo credit Dale Weber)

Happy Thanksgiving to you and yours dear ones!  May today be a reminder of how much you are loved and appreciated!!

Grateful

November 23, 2016 by

I’ve had one of those weeks that frustrate the ba-geebers out me…one of those weeks when I’ve been on the phone trying to coordinate Rudy’s care and not getting what he needs and not making any progress on the “to do” list.  It’s part crAPRIA, part bureaucracy and part bad luck.  Unfortunately, I’ve developed a bit of a short fuse over the years when it comes to stuff like this so it doesn’t take much to get my blood boiling.  Yeah, go ahead, transfer my call, make me repeat myself over and over, let’s take this back to square ONE a-gain, better yet, don’t answer the phone, don’t return my calls, IGNORE ME!  Honestly, it sounds so absurd with all the “bigger stuff” going on in our lives but this is what pushes me over the edge and I end up shaking my fists at the phone wanting to scream at the poor customer service representative on the other end “I wasn’t created for this!!!!“.

What grieves my heart is that this isn’t just an emotional reaction to a frustrating situation but that I really do struggle with “purpose” in our journey with Rudy.  I shared about this struggle in a talk I gave at Westmont College  a couple of years ago so this isn’t anything new but it remains a fresh wound.  When the mundane frustrations in this journey overwhelm me and discontent creeps in, I long for the extraordinary things I dreamt of doing when I was young.  Sometimes, when I’m really feeling down, I allow myself to feel guilty over the lack of extraordinary in my life…maybe I’m not trying hard enough or maybe I’m too afraid to “go for it” and I’m using Rudy as an excuse, etc, etc, etc…do you know what I mean?

I share this because I read a blog post this morning that speaks to this VERY ISSUE!!!  I feel like God is saying to me “Here you go.  I see you.  I see where this week has taken you.  This is for you.”  Click here to read the blog in it’s entirety but two quotes that jumped out at me are these:

“You aren’t here to be extraordinary, to accomplish the extraordinary, or to experience the extraordinary. You are simply here to be fully you, limitations and all.”

The author went on to describe a situation he and his wife experienced and added:  “And, for a moment, I love our limitations, because they confined us to this experience. Our limitations nudged us toward this particular mountaintop.”

It’s true!  As limiting and isolating as life makes me feel sometimes, the reality is I’m confined to experiences that, as this blog can attest , are mountaintops in and of themselves.

I’m grateful.

 

November Celebrations

November 14, 2016 by

This has certainly been a perplexing week with much to process as it relates to our country, it’s government and it’s people.  My heart has been deeply grieved during this whole election process and I am left feeling raw.  I read a quote last week by a Presbyterian pastor in Olathe, KS that I can stand behind and it inspired me to commit even more to do life in community & relationship with a purpose to make a meaningful difference in the lives around me…which ultimately brings healing to all of us.

“Unity, liberty and justice require effort from all of us as citizens of this great country. It won’t happen via politics…it will happen through relationships and a shared commitment to dig in to what is so terribly broken in all of us.” -Jim West

Ironically, this has also been a full week of celebrations in our household so, thankfully, there has been much “goodness” to focus on and savor as well.

A week ago Saturday was DP’s homecoming dance so we enjoyed an afternoon of fun preparation before the big kids headed off to dinner and the dance with friends and Rolf, Rudy and I headed to a SBRM (recovery program) graduation.  A big night for so many!

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The traditional corsage making party with friends Tina, Autumn and Hunter…

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The finished products turned out GREAT!

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After graduation, Rudy, Rolf and I headed over to the dance for the crowning of the homecoming king ceremony. As mother of prince Max, I got to escort him onto the stage. Fun for me…not so thrilling for Rudy who, by 10:30pm was DONE for the day!

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Homecoming selfie!

On Monday, Rolf and I celebrated our 24th wedding anniversary…a milestone worth noting:

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November 7, 1992

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We may be starting to show some wear and tear but I’m proud of every grey hair and  wrinkle!  ;)

On Tuesday, I had the pleasure of visiting the big kids’ Fellowship of Christian Athletes club at school.  It was fun to see Olivia and her peeps having fun…

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…and to hear Max share about Shadrach, Meshach and Abednego.  He boldly shared how this Old Testament story encourages us all to never doubt God, to dare to be different and to never cease standing up for what we believe in…a timely reflection for sure.

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One of Rudy’s favorite places is the rescue mission…Rolf had a few late nights at work this week so we had “dinner with dad” and the residents on Wednesday night and Rudy was in heaven!

Speaking of eating, we haven’t made it to Kyle’s Kitchen yet this week but we have gotten some fun shout outs from friends who were there!  Ha Ha  We are so grateful for Jay and Deena Ferro, their support of the special needs community in our town and for highlighting Congenital Heart Defects & Rudy this month at KK!!!  Stop in, take a pic and send it to us for Rudy’s gallery if you can!!!

RUDY’s CIRCLE of LOVE:

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This next week will be dedicated to final jewelry prep for my annual holiday jewelry show next weekend!  I have a couple of shows scheduled this season and a couple of trunk shows at local offices too!  So excited!!!  Let me know if you’d like Silver By Trish to come to your office!  Check out Silver By Trish on FB for more details.

School Games 2016

November 4, 2016 by

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Rudy and his classmates enjoyed the annual Special Olympics School Games today.  In past years Rudy hasn’t been a very cooperative participant in the soccer tournament but this year he participated in the wheelchair “Hoccer” competition (a cross between hockey and soccer) and had a blast with teachers Ms. Ochoa, Teresa and Coach Galvan…

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This is as good a place as any to take a break!

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Fun with Nurse Evelyn…

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…and teacher Teresa!

Team Mountain View played hard and finished strong!  All will sleep well tonight!!  Thank you Special Olympics of Southern California for another fun day!!!

 

Super Rudy and His Sidekick

November 2, 2016 by

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Halloween included a school sing and costume parade for Rudy, a day off from school for Max and Olivia, the traditional chili, rice and cornbread dinner with friends and a phone call from Wilson!  It was a full, fun day for sure.

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Rudy gettin’ ready…to stand while his schoolmates sing! The fact that he stood on the stage is progress!!

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Rudy and his helpful sidekick at the school costume parade!

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Super Rudy then had to fly by the school office to wish Miss Jill a HAPPY BIRTHDAY!

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‘Really can’t get enough of these two!

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With Halloween comes beanie wearing weather!!!  Yay!!!

We’re excited to host the graduates of the Santa Barbara Rescue Mission recovery program this week before Saturday’s graduation ceremony!  Max and Rolf have a college visit later in the week and Max and Liv have the homecoming dance on Saturday night as well!  WOW, Welcome November!!

 

Reality Check

October 27, 2016 by

This week has been a bit of a reality check as Rudy has had both developmental and medical evaluations.  Here’s a recap:

Rudy’s IEP was on Tuesday morning.  This is an annual meeting of Rudy’s educators to establish an individual educational plan and discuss his various academic, social and physical goals.  This year’s IEP was particularly comprehensive as it included a triennial reevaluation to determine Rudy’s eligibility for services.  The eligibility assessment team included Rudy’s special education teacher, his adaptive PE specialist, district phycologist, district nurse, the speech and language pathologist and occupational therapist.  All were in attendance today along with Rudy’s CCS OT & PT, his general ed classroom teacher, district special services representative, Rolf and myself.

There weren’t any big surprises and, in general, we couldn’t be more pleased with Rudy’s progress and attitude toward school.  He is motivated to learn (most of the time) and eager to put what he’s learning to practice (especially when it involves sporting equipment of any kind)!  ;)  All in all, IEPs are a positive experience and Rolf and I always leave grateful for the community of professionals who pour so much energy and expertise into our boy. That being said, IEPs are also a bit difficult to face as they are designed to take a microscopic look at Rudy’s deficiencies and areas of need…even more so in the triennial.

The report presented on Tuesday determined Rudy’s eligibility and need for continued special education and related services based on the following criteria: Intellectual disability, Orthopedic Impairment, Multiple Disabilities, Health Impairment and Speech or Language Impairment.  One change is that as Rudy gets older and the academic divide between Rudy and his typical classmates becomes wider, the time Rudy spends in his special ed classroom becomes greater (the special ed/general ed split that was 50/50 the last couple of years is now more like 75/25).  In addition, the triennial report included approximate age equivalent determinations based on the psychologist’s assessments.  Rudy was tested in cognitive functioning categories like fluid reasoning, knowledge, quantitative reasoning, visual spatial processing and working memory (resulting in an average age equivalency of 3 years and 5 months) as well as in social/emotional functioning categories like communication, daily living skills, socialization and gross/fine motor skills (resulting in an average age equivalency of 3 years and 3 months)…it’s not something I dwell on too much but it does make me a little sad.

On Wednesday, Rudy had his routine appointment with Dr. Harake and monthly blood draw.  Thankfully there isn’t a significant change in the ventricle size or the tricuspid valve leakage since Rudy’s echo 2 months ago…still moderate to severe…and his hemoglobin level is still at 21.  Rudy’s next appt at the Heart Clinic/UCLA is December 8th and we see Dr. Harake again on December 20th.  In the meantime, Drs. Harake and Dan have recommended we schedule an appointment with Rudy’s surgeon so we are hoping to coordinate that consult with our trip down on December 8th.  We’ll see.

There has been a lot to process this week, my brain is tired.   It’s time to refocus and prepare for Halloween and all the fun of the next few days.  The holiday season is upon us and I’m ready!!  Let me be the first to wish you a Happy Hallowthanksmas!!!

 

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Rudy at the pumpkin patch with his classmates today.

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He picked out a good one!

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A Weekend Full of Fun

October 24, 2016 by

Since there will be much to document this week, I thought I’d slip in a quick update on our weekend that included a homecoming halftime, good time with dear friends, a camp fundraiser AND Monster Ball!!  I just love fall…the cooler weather, the fun festivities and all the yummy comfort food!  :)

Max had the honor of being a member of the 2016 Homecoming court.  The football game and crowning of the queen happened on Friday night.  The king is crowned at the dance which isn’t until November 5th so Max can’t hang up his royal hat just yet.

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The little prince with the Homecoming prince!

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Prince Max and Princess Joanna

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The traditional convertible parade!

Rolf, Rudy and I headed down to LA Saturday morning for the annual Camp del Corazon Family Festival & Reunion fundraiser.  Thanks to the generosity of “Team Rudy”, we were the 2nd top fundraiser!  Woo Hoo!!!  Way to go Team Rudy!

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2nd Place fundraisers!!

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Celebrating with Lisa Knight – Camp del Corazon co-founder!

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It’s always a huge encouragement to connect with Rudy’s former CTICU nurses…

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…and HLHS survivor Jeni & her husband Nick!!

Then, on Sunday, we went to the annual Monster Ball party with many of Rudy’s special needs buddies and the UCSB Gauchos!

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Rudy getting some pointers from Gaucho Alex.

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Rudy and Alex met last year and had fun reconnecting!

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Rudy has quite an arm…

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…and swing!

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Thank you Gauchos!!

The Gauchos’ head coach has a son and daughter who went to preschool with Rudy.  Shortly after we arrived, Coach brought his son over to Rudy to say “hi”…his son took one look at Rudy and said to his dad “That’s not the same Rudy!”.  Ha Ha  I LOVE IT!!!

Olivia and Wilson had big weekends too…

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Olivia ran in the Mt. SAC X-Country Invitational…

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…and Wilson competed in the Task Force South Ranger Challenge competition. His team finished in 1st place earning them a trip to Ft. Lewis in a few weeks for the next round of competition.

It was a big weekend for the whole family.

Next up?  Rudy’s triennial IEP meeting tomorrow, cardiology appointment on Wednesday, and a visit to the pumpkin patch on Thursday!  Yay Fall!!  :)

 

 

A New Season

October 20, 2016 by

This has been a different fall for our family.  With our AYSO days behind us, fall doesn’t have the same kind of intensity as it once did with multiple evening practices, Saturday games and “Coach Rolf” at the helm.  :)  The big kids are more and more independent and, more and more, Rolf, Rudy and I find ourselves chillin’ at home in the evenings.  A new season is emerging indeed.  ;)

I think we’ve appreciated being a little less CRAZY BUSY this fall but we sure haven’t had a deficit of fun…quick visits from friends and fun milestones have kept our family on our toes!

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One of the great advantages of living on the Central Coast is that we make a handy pit stop for friends heading up and down the coast! Rudy clowning around with Judy!🙂

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Olivia was excited to receive special recognition from her XC coaches last week. She’s off to another overnight meet this weekend and enjoying the experiences she’s having with the High School team.

There was another special accomplishment in the family last week.  ‘Thought I’d give you a “behind the scenes” look at our family’s response to said accomplishment…

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I appreciate Max keeping it real, Wilson’s PSA and just LOVE that Olivia managed to incorporate the word “magical” into her response!!!  We celebrate bowel movements…especially those that occur in the potty.

The celebrations continued (I’m sure Maya will love this segue) with a quick visit from Maya sandwiched between engagements on her calendar:

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Yep, folks, he went there!  (Wilson was home too but, sadly, I failed to get him in the shot!  Wilson!!!, why aren’t you in this picture????)

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Poster boy for “mischievous”…

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…and, of course, we made a stop at Kyle’s Kitchen! Surprise, Surprise!!  Ha Ha!

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Rudy and friend Thomas were twinning at church on Sunday.

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Max and Olivia were twinning too!…For spirit day at school!!!!

Ha Ha!  Fun stuff!

So, we have a big week ahead:

Rolf, Rudy and I are heading down to North Hollywood on Saturday for the annual Camp del Corazon Family Festival and Fundraiser.  We’ve been raising $ this month for this amazing organization in honor of Rudy’s birthday…if you’d like to learn more about CdC or make a donation, click here!

Rudy’s annual IEP is next Tuesday…this will be a particularly thorough IEP as it is his triennial so we expect to examine all aspects of his educational plan with many voices speaking into the assessment…always an interesting (and somewhat emotionally exhausting) process!

Then, on Wednesday, Rudy has his regular echocardiogram and exam with Dr. Harake.  I try hard to resist the temptation of living from one appointment to the next but, I admit, I’m eager to check in with Dr. H and get the latest echo info. We’ll keep you posted…

In the meantime, enjoy the sights, scents and yummy flavors of autumn!  May the changing of the season bring refreshment to our hearts and souls.  ;)

 

 

Happy 8th Birthday Rudy!

October 2, 2016 by

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Rudy celebrated his 8th birthday out at the Dos Pueblos Ranch yesterday with approximately 324 guests!  Although Rudy meandered around the ranch believing all the preparation and commotion were for him, we were actually there to participate in the 15th annual Back to the Bayou fundraising event for the Santa Barbara Rescue Mission.  Sadly, we were so busy that none of us took any pictures at the ranch but we did enjoy a little post-Bayou party at home later that evening.  It was a full day for our family but Rudy definitely felt celebrated in the midst of all the activity and we were blessed to share the day with so many SBRM friends & supporters who have a personal interest in and love for our family as well…the best birthday gift one can get is to know how very much he is loved and Rudy certainly got that tenfold!  Happy Birthday Rudy!!!

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An intimate dinner party on the ranch!

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A Bayou after-party with friends Jeremy and Becky!

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Olivia worked hard making Rudy’s Lightening McQueen cake just right…

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…and Rudy worked hard  “eating” it!

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Birthday Eve 2016

September 30, 2016 by

Rudy got a jump start on celebrating today with his friends and teachers at school…a birthday so big it will likely fill two blog post updates so here’s pictorial proof of Birthday Fun – Day 1!!

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Rudy got a hug and special greeting from Nurse Evelyn first thing this morning…

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…and then he got some birthday love from Mr. Latta and…

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…a few of his 2nd grade friends.

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Miss Ginny was all smiles on the playground with Rudy during recess!

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I brought a bunch of extra oxygen tubing to the classroom in the afternoon to make “silly straw” glasses with Rudy’s special ed classmates…

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…even the grown ups got in on the giggly fun!!

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Special friends!!

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The day ended with a very special visit from Christoph (cousin from Austria)!!

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A simply delightful evening…and a perfect end to a very special day!!!

It’s time to hit the hay…we all have a BIG DAY tomorrow as we continue the celebration at the 15th annual “Back to the Bayou” event supporting the Santa Barbara Rescue Mission!!  The Rescue Mission community was such a huge encouragement to us when Rudy was born, it will be fun to share tomorrow together!  :)  Happy Birthday Eve Rudy!!!  It’ll be your official birthday in just 26 minutes!!!!!