ALS Walk

Last Saturday was the annual Walk to Defeat ALS in Bellingham.  Our Team Kooistra/Kick ALS combined with Team Strike Out ALS.   We walked for Les and in memory of Ken.  There was another team from our town representing Nelda.  We never ran into Nelda and we are very sorry about that.  How did we miss those bright pink shirts??  It was a beautiful day!

SOME of Team Kooistra

Thanks to everyone who came out to support Les.  We appreciate the continued awareness of this disease.  The Bellingham goal was $45,000 and the walk raised over $80,000.  I think the ice bucket challenges has increased awareness of ALS.

Les walked half the walk - 1.25 miles.  At the half way point he took a break and rode the scooter the rest of the way.  Pretty snazzy.  Thanks Jan!

Yes the honeymooners joined us.  We are so thankful they are home safe and sound.  They saw God working that week and were confident He was watching over them.  Prayers were answered!!

Another New Development

Never a dull moment around here!  On the day of the wedding rehearsal, when 50 people were coming for dinner, Les had a semi-emergency visit to the Bellingham urology clinic.  He spent several hours there that afternoon.  I was not able to bring him (we had 50 people coming for dinner!!)-- thank goodness for brother Howard!  However, Howard had to leave mid-appointment to pick up his kids who were flying into Seattle that afternoon for the upcoming wedding.  THANKFULLY, a sweet friend was in Bellingham and wondered if there was anything she could do for us that day....... so she delivered Les home safe and sound.  Thank you Doris!!

Les was having a prostate issue.  He was wore out after his long afternoon and unable to attend rehearsal.  He perked up a little the next few days and did really well at the wedding.  He took a break while we were eating dinner at the wedding reception and had a feeding in the house.  THANK YOU to those of you who took the time to go to the house and visit with him.  He appreciated it!

Over the past week Les has had two follow up appointments at the urologist.  The first appointment he had a scope done, and this past Thursday he had an ultrasound.  We met with the doctor after the ultrasound.  Les' prostate is growing and pushing the urethra closed.  This is very common among men.  It is not ALS related; however the doctors believe that because of the ALS, these kind of issues speed up.

Les will have surgery on October 1.  The surgery will take place right in the urology clinic - they have anesthesiolgists on site.  He will be able to go home the same day.  He will probably be a bit (????) sore for about a week, and then should be back to (his) normal.

ALS walk on Saturday

This coming week we have NO appointments.  We are looking forward to a quiet week!  Prostate surgery is October 1.  Les will see Dr. Hillel, the throat specialist at the UW, on October 7.  On October 15 we have a 3 month check with Dr. Weiss at the UW.  We aren't really sure where the time goes!  Our little man is 9 months old today!!  Craziness.

Kris + Hannah = LOVE

A perfect day, a perfect wedding. Being the parents of the groom is SO much easier than being the parents of the bride.  Not nearly as stressful.

We helped set up on Friday.  The ceremony and reception were in the bride's family yard.   A very large tent was delivered, porta potties were delivered, tables and chairs were delivered. LOTS of flowers were brought in - Kay of Seven Sisters Design did an amazing job (it helps when the bride is a good friend of the florist).  Hannah's mom Jan did a great job of organizing and directing.

Sister set up

 

I'm thinking that too many people were praying for a nice day - it was was sunny and 85.  A little warm! The groomsmen in their suit coats and pastor Ben were pretty toasty standing in the sun.  I don't think the rest of us were too bad - but that beer after the ceremony sure tasted good.

The ceremony was beautiful and God filled.  The bride and groom wrote letters to each other and that made me cry.  Kris is a great writer- he writes beautiful cards.   Aunt Vicky played the REAL piano, which was a treat.  Niece Emily, nephew Phil and friend Lori sang "Shine on Us" which also made me cry.  They sang that song at our daughters wedding.  Praying over our children at the end of the ceremony was very special to Les and I.

Mr. & Mrs. Kooistra!

Time to celebrate!! The reception was so much fun.  Dustin and Averyl were awesome MC's.  The toasts were great; Les' speech was meaningful.  Our son even spoke, which is pretty close to a miracle!!  The food by Rose was amazing.  Dancing with friends and family is so so fun.

As parents it is such a blessing to see your children marry a Godly spouse.  We are blessed to have Brett and Hannah in our family.

 THANK YOU to everyone who traveled to get to the wedding.  We had family fly from Nebraska, Iowa, California, and Patterson Washington ;)  Newly married nephew Daniel and his bride Jackie drove from Montana (they married on Labor Day!).  Thank you Randy and Jan for your amazing daughter and for this wonderful wedding. 

Rehearsal and Dinner

Our son is married.  28.5 years old, he has been dating Hannah for 5 years.  It was time they got married. We had so much fun at the wedding--we are so, so happy for them.

First things first - Rehearsal.  We had rehearsal last Thursday night, partly because it's nice to have a day inbetween rehearsal and the wedding, and partly because one of my best friends had a son getting married on Friday night.  (What are the chances???)

Les' brother Howard and his wife Vicky flew out more than a week before the wedding.  Howard was such a blessing to me (and Les).  He ran errands for Les, he gave him back rubs, he washed our car, he did anything we asked him to.  It was a break for me and I really appreciated.  Vicky also was such a help.  She cooked, cleaned, washed windows.  I am so far behind with stuff since Les was in hospital for almost a week.  My sister Sharon flew in on Labor day, and she started laboring right away!  It was SO NICE to have her in the house and jumping and doing whatever I asked her and so much more - she kept an eye on me and told me when I needed to stop :)  Rehearsal dinner was at our home, so many many things needed to be done.

Our son asked for steak for his rehearsal dinner.  Les decided to add some ribs to the menu and insisted on cooking them himself.  He succeeded!  Friend Rick came and helped him slice steaks from the filet mignon roasts.  Les had asked master griller Brian to grill the steaks and Rick assisted.   Also on Kris' menu were cheesy hashbrown potatoes, grape salad and caesar salad.  We got all that made up on Thursday.   My parents and their good friends sat and cracked crab a day so my mom and dad could bring crab cocktails for us all.   Les' friend Rose brought a tray of goodies for dessert.

 My neighbors decided months ago that they would be my decorators for this event.  Several weeks ago chef neighbor Dan hung lights all along the back side of our house.  Neighbor Mark hauled in tables.  Jayleen and Melinda brought in tablecloths, center pieces and tiki torches; they put candles around the pond, lanterns in the flower beds - so festive and so beautiful.  We have REALLY great neighbors. 

The BBQrs, with a little help from Gpa

 My friends Lonnie and Pam came along with Brian and Rick and they ran the inside of the house.  They even washed dishes.  They are very dear to me.

The wedding party all ended up out by the fire and sat for quite some time.  The bride's out-of-town family stayed chatting at a table until dark.  The food was amazing - steaks grilled to perfection.  It was a very successful evening.  Whew.........

Ice Buckets and Updates

We love the ice buckets!  The timing of all of this is amazing.  We are in the middle of a fight with ALS, and all of a sudden there is national awareness of this dreadful disease.  Thank you for all the buckets poured in Les' name.  He is honored by all of them.  So far he has gotten to pour one bucket- -on our neighbor Jeany.  I want to share the following picture.  It's some of Les' best buddies from high school, from Iowa.  They are GOOD friends, they go WAY back....  Kevin Boeve, Steve Kooima, Elmer Boon - well done!

ALS strikes about 2 people in 100,000.  That's about 30,000 in the US with this disease right now.  Of those, about 25% are Bulbar ALS, which is what Les has.  This means the disease starts in the bulbar region, or the neck/throat area.  And of these 25% bulbar onset, about 19% are affected by the vocal cords/folds spasms.  Again, this is what Les has.  We always knew he was unique, right?  Because of his version of this disease, Les' vocal chords are freezing up.  Makes sense, as his first symptom was difficulty singing.  Since his vocal chords are freezing up and his tongue is basically useless, he had trouble breathing.  After two emergency room visits because of breathing, a trach was inserted to ease his breathing.  For an ALS patient to receive a trach is actually not very common.  Nurse Jen at UW told us this is only the 2nd patient she has worked with that has had a trach.

It's been about a week and half since we've been home from the hospital.  Les is doing pretty well.  The trach seems to be healing well.  Our followup appointment with Dr. Verneuil was helpful; Dr. said everything looks great.  Again, I am so thankful that Les is so self sufficient!  He suctions the trach himself, cleans it himself, hooks up his feedings himself.  The biggest adjustment has been getting used to the humidifer machine - it sounds like a generator running!   It's also been an adjustment getting used to breathing and coughing through his throat.  Our friends Rod & Lana dropped off a lift chair for Les and he LOVES it!  He has decided to keep the humidifier set up by that chair in the living room, and if he feels he needs it in the night he moves to sleep in the new chair for awhile. 

Countdown is on for the wedding.  Our first guests have arrived - Les' brother Howard & wife Vicky and my sister Sharon.  We are very excited!  AND praying for good weather since the wedding is in the bride's family yard.  Please pray that Les feels well and is rested for the wedding day.