Thursday, April 17, 2014

April Progress Report

This Wednesday was another 3 month check up for Les.  We can't hardly believe it's been six months since we heard Dr. Weiss say, "I'm quite certain that your symptoms are Progressive Bulbar Palsy, which will lead to ALS".  In some ways it seems like last week, and in some ways it seems like this has been our reality for a very long time.  We have been very busy, which makes the time go fast!

Wednesday we had a different doctor, Dr. Childers.  But, since this is a teaching hospital, we had a resident first and they both did all the same tests :).  They mostly checked his physical strength, which is good and they were pleased with that! Les has noticed a little weakness in his hands but otherwise is doing great physically.  He only lost 2 pounds so they were also pleased with that.   Next was William and the lung test. Again, Les did pretty well.  His lungs are a little weaker but still pretty good capacity.

Next up is speech therapy.  First we talked about Les' loss of speech and the process of getting a speaking machine.  Les has researched this and knows what he would like so we are checking to see what his insurance would cover.  He is using his phone app for speaking more and more but would like something a little more sophisticated.  The speech therapist then did some swallowing tests.  We know of course that this has been more difficult for Les and eating is getting much more difficult.  A swallow test has been ordered to find out what's going on his throat and what kinds of food he should and should not be eating.  We have also given the go ahead for a feeding tube, so we will wait to hear from the GI doctor and will then schedule surgery for putting that in.  We would rather be proactive with this and have it done while Les is still healthy.  It takes him so long to eat; he has starting using the Magic Bullet a lot more.....he throws his whole breakfast plate in there and makes a smoothie :). That is so much easier to eat and doesn't take nearly as long.

Next was the heart test (because of some of his meds) and normally this takes 5 minutes but this time he had to wait an hour. BUT we got a free parking pass out of it.  A very nice nurse :)  Last was the blood draw.  We were so hungry at this point that we actually ate in the cafeteria, and it was very good!  I didn't think I would see my friend Jill this day (she is an RN at UW), but she was in a class right off the cafeteria and when she walked out on a break, there we were!  We got to have a quick chat.  Love that girl.

Since we were in Seattle we hopped over to Virginia Mason to see Kris' friend Matt.  Matt has some liver issues and we were looking forward to seeing him.  BUT he was in a procedure and the nurse told us when he gets back he is sleeping, so all we could do was write a note.  We are not the only ones dealing with serious health issues!!!  We are praying for you Matt.
Waiting for Matt...see our car??
 Les and I were talking about his appointments.  They are really just to manage the disease since there is nothing to be done for this disease.  The UW doctors and nurses want to help Les be as comfortable as possible as we go through the different transitions.  And we are glad for that!  Our prayer requests:  Please pray for our frustration levels to stay low as we deal with Les becoming unable to communicate verbally.  Pray that his insurance company will cover the cost of a DynaVox machine.  Pray that he continues to stay physically strong.  THANK YOU!!!

Monday, April 7, 2014

Road trip Part II

After traveling down the Oregon and California coasts in our rented motorhome, we arrived in Santa Cruz about the same time as my sister and her kids....they were also on spring break.  My nephews came from Cal Poly along with a sweet girl named Julia.  We like her, S.P.!!!!  My sister and hubs rented a BEAUTIFUL beach house, with two master bedrooms.  A treat for sure after being in the motorhome for four days!

My sister had meals planned and so we just relaxed.  The weather forecast was rain, but we had beautiful sunny days.  God answered some prayers. We spent a day at the "Boardwalk". Fun to sit on the beach.......the kids (and Darrell!!) played volleyball. The boys actually did a little boogey boarding even tho the water was pretty chilly.  A great day

We had Darrell take some family pictures on the beach that evening.  During that adventure, THIS happened:

Little man's shirt said "will you be my auntie" and Kris dropped on his knee.  We are all so excited.  We love this girl and are thrilled to have her as our second daughter.  Well done Kris, you did good.  Aren't their faces just priceless??
Next day we spent some time at Capitola.  Such a fun little village on the beach.  We had to head out that day, on to Becky's B & B.  We spent two nights there.  Kris got to golf so he was happy, Brett got to wake board so he was happy.

I had a visit from my college roommate Jan.  We spent 4 years together at good ol Dordt College.  We had a great conversation, she knows just what to say.  You need to plan a visit up here Miss Jan!

We planned to leave California on Sunday.  My niece had a playoff soccer game so they were taking off for that.  After church and brunch our family all piled into the motorhome again.  This time we drove straight up I-5 and we decided to drive straight through.  Les drove California, Kris drove Oregon (he AGAIN got the winding pass...) and Brett drove Washington.  Topped off the trip with breakfast at the Hilltop.

How did Les do? He did great! His speech continues to deteriorate, but the boys were such a great help when they needed to be.  He does isolate himself a bit more because it's difficult to be a part of group conversations.  Les was also pretty tired the few days after we got home, but he kept saying "what a great trip". It truly was. Thanks to some of our friends who dropped off goodie baskets before we left - Lu, Rick & Pam, Barry & Doris, Dale & Gina, Dan & Kara - we loved it all!  I STILL don't know who the flower fairy is that filled my window boxes while we were gone..... Thank you to Lori and Emily for feeding us when we got back!  Thank you to our hosts, Darrell & Becky.  Thank you Sean, Mitch and Jenae for sharing your spring break with us! Thank you to our great kids and spouses for being such great travelers.  Thanks for the memories!!

Wednesday, April 2, 2014

Road Trip!

We decided to take a road trip. We bounced around some ideas for a family trip and this is what we came up with.  Gotta tell ya, when your kids are older and you take a family trip, you let the kids make some of the decisions and then there can be no complaining!!!  And as Clark Griswold said, "Why aren't we flying? Because getting there is half the fun.  You know that".  (From the movie "Vacation")  HA!!
Heading out to pick up Hannah!
We rented a motorhome and the 7 of us were off!!  Hannah (Kris' girlfriend) had a dental hygiene board in Seattle so we picked her up there.  She was ready to get out of town! (AND BY THE WAY SHE PASSED THIS VERY DIFFICULT BOARD!  So proud of her)  First night we had reservations in Cannon Beach and we made it by 10.  Thank goodness for Kris and his late night driving.  Right to bed!  Next morning was beautiful so we took a stroll on that magnificent beach.

On the road again......we made a stop at Tillamook cheese factory at lunch time.  Our second night was right on the beach at Coos Bay.  Again, an amazing beach.  Our little man Kaden was such a trooper!  He just hung out in his car seat..... Slept all night, eats every four hours, life is good!

Third day was a big day.  Lots of driving but the scenery is just so amazing.  I never get tired of looking at the coast.  Our God made a beautiful creation for us to enjoy!  All the guys took turns driving.  We detoured through the California redwoods.  Such big trees.  Northern California is such beautiful country, and not very many towns.  We stayed at a KOA in Willits, California and it poured that night!!!  We had had beautiful weather so couldn't really complain, but it was a dreary morning that next morning.

Wednesday was our destination day - Santa Cruz beach.  My sister Becky & family had rented a beach house there and we were joining them.  Our drive took us right downtown San Francisco, over the Golden Gate bridge.  What an adventure! and then we had traffic.....  Kind of a bummer after traveling down the beautiful coast, but we survived (with Les driving!)  We arrived at the beach house and hooked up with my sister and family.  What a beautiful place to spend two nights!!  Part II of this road trip coming soon........