Thursday, July 24, 2014

3 Month Progress Report

On Wednesday Les had another 3 month progress checkup.  That means it's been 9 months since his diagnosis.  The past 3 months have gone so fast - we have been busy!

We met first with Dr. Weiss.  He is such a kind, compassionate man.  When Les gets a little emotional, Dr. pats Les' knee and tells him how sorry he is.  We talked about symptoms and how Les is feeling.  Dr. Weiss is ordering a bi-pap machine for Les to sleep with.  Les has a hard time breathing when he lays down - he is already propped up on pillows.  The bi-pap machine will help him breath, and Dr. Weiss thinks it will help with Les' fatigue.  We hope so!  Les has been very fatigued lately and naps almost daily.  Les then went through the lung test, and his lungs are again a bit lower in capacity.  Nothing to get alarmed about yet.  We also discussed the saliva issue.  The Botox helped a bit, but not much.  There are no other drugs to try.  Dr. Weiss recommended talking to Dr. Hillel about this - Les has an appointment with him next week to take a "vocal fold" test.  Dr. Hillel does lots of Botox on ALS patients and Dr. Weiss is more comfortable having him perform the Botox in the throat (which would be the only other option for the saliva issue).  Dr. Weiss also acknowledged weakness in Les' right hand/arm (for example he can't turn the key in the car ignition anymore) and a "shakiness" in his legs.  Dr. referred us to Occupational Therapy and Physical Therapy to start discussions about these issues.  We haven't been to EVERY floor yet at UW, but looks like we might get there yet!

We had a quick chat with nurse Jen, which always cheers Les up.  She, too, is such a sweetheart.  Les weighed in at 190, so has gained a few pounds, but is still pretty thin.  We found out that our normal lung technician, William, took his own life this past Friday.  The whole staff in Neurology was still upset and trying to deal with this loss.  We also very much enjoyed William.

Next up was Les' appointment in radiology for the new "Mic-Key" feeding tube.  The old tube was quickly switched out for the new one; no anesthesia required.  The new tube is button size; the old one was a 6" tube.   Les was all smiles after - he was so tired of that other feeding tube always hanging down, pulling in and out.  A welcome change!!
And we were done!  7:45 am to 11:30, not a bad day.  We have several appointments next Tuesday; that will be a full day.

Here is a picture of us at a recent wedding (minus little man).  David & Mikaela, you had a beautiful wedding!!  We are counting the days for Kris & Hannah's wedding!

Sunday, July 20, 2014

Empty Nest (again....)

We are once again empty nesters.  We had an empty nest briefly after our daughter was married.  An empty basement - two empty bedrooms.  Lots of closet space.  Lots of room in the attic.  And then we heard the words "mom and dad, can I move home to save some money so I can buy a house?"  Um, sure??  Our son had been on his own for 7 years.  He was dating a sweet girl named Hannah.  We had hopes he would marry we agreed.  And thus he moved back home.  We did not realize how much sh... I mean stuff he had!  The closets were filled, the attic was filled, the garage was filled, all empty spaces were filled!  This boy has a problem!

Now it is 4 years later.  Yep, 4 years.  We have been looking for something for Kris for about 3 years.  Nothing was ever quite right.  He wanted property - but doesn't everyone want property?   So we kept looking..... Kris & Hannah got engaged in March.  Maybe they would live in the basement?  We have recently put a kitchen in our basement, not knowing what God would bring our way.  With Les' health issues, maybe we will need help and we could have someone live in the basement.

And then Hannah found a cute red house on 2 acres.  She fell in love, and they made it work.  They bought the house!!!  We are SO excited and happy for them. It is perfect, it is private; they have a beautiful, peaceful view out their back.  They received the keys on July 3.  A houseful of company arrived on July 3.  On July 4 Kris woke up, woke up his cousins, called his brother in law, and said "I AM MOVING TODAY!"  And he started loading.  He didn't think he had anything up in our attic.  Ha! said Les and Les went up in the attic and brought down piles.  We still have full closets and cupboards, but they are slowing emptying out.  Hannah is sorting and deciding what can go in the new house and what needs to get thrown away.   I am thankful it is her and not me.  Love that girl!!

And now I miss him.  I miss Hannah.  I miss hearing how their days were and what wedding plans were accomplished.  I miss having someone to talk to in the evenings.  I miss their friends popping in and out.  I miss Sunday night guacamole dip and movie night.

I DON'T miss the piles of laundry in my laundry room (I didn't do his laundry anymore).  I don't miss waiting for him to come home late at night (always a mom, right??)  I don't miss him taking a nap on our couch on Saturday afternoon when I'm trying to clean.  But I miss him.

In church this morning we read this verse, and I read it recently in Jesus Calling:  "I am with you and will watch over you wherever you go, and I will bring you back to this land.  I will not leave you until I have done what I have promised you."  Genesis 28: 15

A good verse to remember as our son starts his new family.  A good verse for Les and I to remember as we continue our journey with this disease.

Thursday, July 17, 2014

Summer Sun and Family Fun

Yikes!  How did it get to be July 17??  We have been very busy!  LOTS of family visitors, which is so, so fun.  We have discovered that lots of activity makes Les very tired!

My side of the family had a mini-reunion the past week.  The first brother-in-law showed up on July 1 and the last sister left on July 14.  Whew!!!  The few days we were ALL together, the number of peeps was 53.  That includes mom and dad, us five siblings and spouses, 16 grandchildren - some with spouses, and 16 great grandkids.  We were missing one granddaughter and her family of 3.   A shout out to our nieces and nephews who flew in from Minnesota, Iowa, Montana, Wyoming and California.  THANK YOU!!  It means alot to mom and dad and ALL of us.  Becky at Simply Enjoy Photography took family pictures - I will share some when they are ready.   LOVE this preview:
#teamKooistra #kickALS
My Iowa sister and her family of 19 rented a beach house in Birch Bay.  Our sweet friend Joanne generously let Les & I and my California sister stay at her beach house.  My brothers didn't stay as long so missed out on some the beach fun.  The weather could not have been better.
Birthday lunch!   

3 sisters with 3 daughters

Les' brother Howard also popped out for a couple of days.  He just wanted to hang with Les, and that's what they did.  We will see some of these people again in September for the wedding; it is so much easier to say good bye when you can say "see you in a few weeks".

Les has another 3 month check next Wednesday and he hopes to switch out his feeding tube that same day.  It will be a tube closer to his body, a "mickey" tube.  He has been quite fatigued but otherwise hanging in there.  The Botox didn't help as much as we hoped it would - he still has quite a bit of saliva.  We have mostly good days but still some down days as we continue on this journey.