Day August 25-Birthday Wishes and Miracles

                                        


Happy Birthday Sis! Loving the new hairstyle, but this could be the sign of a midlife crisis. 

I am so glad to have such an amazing sister in my life. I have learned to identify any miracle that life throws our way.  Miracles are like a cup of coffee, the perfect "pick me up" when we feel like there is no hope. Miracles are amazing.  One of the best miracles is having my sister through this difficult journey to talk to, make decisions, and laugh with.

      


Other miracles of the week....

Dad gets to take a break from his neck collar for a few hours a day and while eating.  What a relief!!


Mom and Dad got approved for Medicaid.  This means mom will get home health care 37 hours a week (7 days a week) in addition to 10 hours of hospice care.  The program through Medicaid is called Passport and it all starts tomorrow.  It looks like dad will have an aid to help start his day, an aid from noon-4:00, and an aid return to get dad to bed.  I am so thankful for Medicaid to help out and not let us down.  It only took 7 weeks of endless documents faxed to the office, but hey, it worked!!

August 24th-Commander Justin-Night Ops

                                      

Last night, dad took a sleeping pill and within a few hours of "sleep", the army showed up to take his neck brace.  If you know dad, he's the type of guy who would give you his right arm if you asked.

Well, the army wasn't going to get away with it that easily. He warded them off by fighting them for several hours. Sometime in the middle of the night, he called for mom to tell her the army was there and not to worry because he was going to keep them safe.  Groggy and confused, mom returned to bed and dad continued his noble duty. The army even came after dad's sippy cup!

When mom woke again, she witnessed just how hard dad had to fight! Somehow, he had managed to knock everything off the bedside table, flaying his arms, just to protect himself.  

I hope the army learned a lesson and doesn't return anytime soon demanding more from dad because...Commander Justin-Night Ops Special Duty Division will be reporting for duty.

 

   

August 20th-Sticker Chart

Boy, if only dad had a sticker chart, he would have definitely earned some stickers for having the best day EVER! He slept through the entire night-a first since July 4. He woke up with an appetite, ready to eat small meals throughout the day. His stomach pain was minimal (unless he was lying), and he drank lots of fluids. Oh the joy to see my dad looking healthy is priceless!

Dad also went to his Dr appt for his neck xray. It was our first time traveling w dad in the van-he did well earning another sticker for the chart. It was also our first time using the hoyer lift without an aide to help. Quite an adventure. Dad got to play peek-a-boo in the hoyer mesh pad...operating the machine sure takes skill. I'm giving myself a sticker for not dropping him.

Since it was only an xray, we couldn't see how the healing is coming along, however we were assured dad has not gotten worse-sigh of relief. In 6 weeks, he gets a cat scan to check bone growth. His first scan is attached from 7-4-12. Notice the three breaks making his injury an unstable neck fracture.

And in true sister style, no Dr appt is complete unless we made it fun! After the Dr left the room, we stole the skeleton off its hanger for a photo shoot. Dad nicknamed him Chip-N- Bones- he could have been a male stripper in his former life, just like dad thinks he was too...I didn't want to burst dads bubble, but with his physique, he had better odds at being a WWF wrestler.

We had dad crying from laughing so hard. It was one of those moments you really had to be there to truly get, but we've got pictures of it. Erica and I earned a sticker for creating a good time, but lost it for stealing and being too loud. Thank goodness no one walked in on and busted us. I was ready to blame it all on dad.

Thank you Todd & Erica for taking time out of your busy day to help... a sticker for each of you! I love you guys.



Gearing up for car ride to the Dr. -1st time on our own transporting dad




Smile Chip-N-Bones!



Cracking up!

Hold that pose!

Chip-N-Bones Photo Shoot Session

  

C1 Neck Fracture-3 breaks about 5-6 mm each (7-4-12)



August 19th-Wanted: Happiness

It's been one of the worst weekends. I am usually positive about dad's recovery, but he is quite ill and doing the best he can-a phrase that puts it all into perspective, thanks to Helene, -a dear family friend who helped me sum up his latest condition. This damn ALS is making the finer things in life we take for granted like eating, swallowing, and talking a struggle. He has lost weight and the stomach pain is relentless. 

To make the situation worse, he was placed in a long term nursing home unit at Heritage for 2 days. No one knew how to care for dad and all of his needs. I am sure its a great facility, it's just not for dad who needs a low nurse/aid ratio. Very upsetting.

So on a positive note, we are desperately seeking happiness. Any amount will do.

Happiness this weekend was...

1. A surprise visit from George while at Herirage -an aid who helped dad when he was in the rehab unit for 6 weeks. They have such a great bond that he calls mom and dad "uncle justin and aunt marcia" as he is their newly added nephew! My dad lit up the room when George strolled in. I can't thank him enough for the happiness he brings with him.

2. Eating spaghetti o's

3. Hanging out w dad and watching The Three Stooges movie and laughing until he cries.

4. Getting his teeth brushed

5. Enjoying a Wendys Frosty :)

6. Sleeping through the night-first full nights sleep since July 4th

7. Jello

8. Yogurt

9. Spending time with his daughters...lol

10. Being home again!

Aug. 17 -Return to Sender

Well after being home for two days, dad is heading back to Heritage for the weekend. He's been feeling sick, vomiting, and has intense stomach pain. I'm hoping he will feel better by late tomorrow or Sunday. He's in a room w no tv or clock! Poor dad, can't catch a break.

Day 42-Home Sweet Home

Dad finally is home today. It's August 15th. The medical supplies were delivered early this morning so he has a hospital bed, hoyer lift, and other needed supplies. Right now, mom only gets a home health aid for an hour in the morning and at bedtime. It's going to be a challenge!

Check our dad's balloon in the pic. The other pic shows dad arriving home in style...via ambulance.

Day 38- That's how we roll!

My birthday was August 8th and Erica's is August 24th- celebrating a birthday just isn't the same without dad.  So, my sis and I brought the party to him.  We surprised him with one of his favorite dishes (spaghetti) and desserts! Good times! Thanks Mary, Danny, Kent, Shay, and Sarah for joining us.  Dad loved it!

Erica's homemade meatballs

   

A dinner feast-sure beats nursing home food!



One proud Papa



Gangster in a neck brace?

Never a dull moment!

Sorry, not a good look dad...

I love you two!

Papa's Girls :)

Shay and Kent (expecting a baby girl any day now!)



Kent ate too much

Day 36-Countdown

The countdown is on! Dad gets to come home soon!!!! He has met all the therapy goals that the rehab unit has set for him. Heritage House can no longer keep him.  So, we have 2 options...bring him home or he transistions to a nursing home. 

Let me think about that for a sec...

Of course we want to bring him home!  To get ready to bring him home, dad will be moving to a hospice unit today.  It's like a 5 day hotel stay for dad...he gets a nicer room, fresh cookies baked on Thursday, and a private courtyard to enjoy the 70 degree weather we are being promised. 
(I am still looking for the swimming pool and spa) By early next week, he will be ready to go home.

Hospice will be taking over and managing his care and providing medical supplies.  This should give us peace of mind to have support for the ALS.  Phase one of our journey is over.  Phase two-homecoming is about to begin.  This is going to be a very difficult journey, but one I can't wait to make everyday with dad.  Mom will have minimal home health care and she will have to devote her days to his care-he still has limited use of his hands and has to be fed.  Dad is going to feel so good at home...sitting in his chair, watching his tv, dvr recording endless hours of crap on tv, and eating real food!

Day 35-Judy Who???

Dad has been slowly improving since his "DBA."  I know this because we had a funny moment...the kind that you would have to be there to really understand. I'll try to explain...

Dad read a plaque inscribed near the finch's cage and really loved it.  He found beauty in its words and wanted me to find the poem online to read it again.  So we searched and searched.  He assured me the poet was Judy Cleveland.  After several unsuccessful attempts, I gave up.  No luck.  Erica visited the next day and dad tried again to look her up.  This time, he tried the name Judy Chicago.  Success!! Too funny! Only my dad would confuse Cleveland and Chicago! Ironically, one of these cities was his birth city and the other city is where we grew up.  Kudos dad for trying!

The Merger Poem by Judy Chicago

One of Chicago’s most popular texts is the “Merger Poem”, originally written in conjunction with The Dinner Party. This beautiful and hopeful text has been integrated into many contemporary liturgies and published in numerous books.

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And then all that has divided us will merge.
And then compassion will be wedded to power
And then softness will come to a world that is harsh and unkind.
And then both men and women will be gentle.
And then both women and men will be strong.
And then no person will be subject to another’s will.
And then all will be rich and free and varied.
And then the greed of some will give way to the needs of many.
And then all will share equally in the earth’s abundance.
And then all will care for the sick and the weak and the old.
And then all will nourish the young.
And then all will cherish life’s creatures.
And then all will live in harmony with each other and the earth.
And then everywhere will be called Eden once again. 

- Judy Chicago

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Day 33-Random Thought

Today's random thought is brought to you because of DBA. 

Warning: Fine Print: If you haven't read the previous post, you may not get it...


So I was still thinking about dad (getting in last night at 1:30am) when I woke up today and I couldn't help but laugh.  I don't think dad ever saw the day coming when he would be the one getting in late, while his worried daughters waited for him.  Erica was there to tuck him in and I was at home waiting for the text.  Sorry dad, it sucks knowing that your late nite escapades weren't at a bar and you weren't out having a good time.

Role reversal.  Your daughters should ground you for getting in sooooo late.

Day 33-"DBA" August 4th

It's 3am and I can't sleep.  With every toss and turn, I have woken up worried about dad.  Sometimes I wake myself up crying.  I hate how uncomfortable and miserable dad's days have been.  I know he can hide it well with his boyish grin and sense of humor.  However, today was different. He must have forgotten his "mask" to hide the pain because he was really struggling.  It's been a rough few days for him.  The pain meds are to blame for a lot of the misery and discomfort (and the damn ALS too!)

Anyway, DBA stands for Dad's Big Adventure-perhaps after being cooped up for a month in the nursing facility, dad needed some adventure and excitement in his life.  So, with all of his discomfort and pain, the nursing facility and family thought it was best if dad was transported to the ER to get checked out. 

Thus, DBA begins...

No trip the the ER is every quick or an easy process.  DBA turned into a 12 hour ordeal.  Ironically, he was admitted to the same exact ER room that he was in on July 4th! The hospital ran some tests, xrayed his tummy for his severe stomach pain, and discovered an infection-curable with antibiotics.  Just a few hours ago around 1:30am, dad was released to go back to Heritage House. He welcomed his homecoming by vomiting up the pain meds he was given during his DBA and felt the best he did all day! Go figure!!!  Mom and Erica were by dad's side all day. We finally got mom home to rest around 10pm.  Erica stayed with dad until he got back to Heritage.  I am so thankful to have an amazing sister. 

A sister is a gift to the heart, a friend to the spirit, a golden thread to the meaning of life

- Isadora James

It's days like these that make you realize how short life really is.  I know there are times when the challenges that dad faces and his discomfort are unbearable.  His spirits keep pulling his broken body along day by day, giving us another day to enjoy his time.  Today was one of the rare days, when his spirits weren't strong enough for the chess match between the mind and the body. 

And life is short and precious. My girls found our first caterpillars of the season.  Meet Tom and Jerry...

Tom is chillin' in the upper right corner and Jerry is snacking in the lower left corner



Tom and Jerry visited dad today.  Addi wanted to show him her new friends. These caterpillars will one day become monarch butterflies.  

In the summer, my kids and I hunt for these caterpillars who are born on milkweed plants.  Luckily, milkweed grows wild in many unexpected areas...the side of the road and golf courses! The caterpillars will become classroom pets in a few weeks.   Unfortunately, these little guys are 3rd generation butterflies which means they will only live 2-6 weeks after they metamorphosis. 

 

There are 4 generations each year of monarchs.  The first 3 generations live 2-6 weeks. Each generation lives long enough to lay eggs to keep the life cycle going. The last generation emerges in September/October and migrates an incredible 2,000 miles to Mexico and California.  The same generation returns in the spring about 6-8 months later to lay its eggs before dying. 

Monarch Caterpillar Becoming a Chrysalis

      


Monarch Emerging from a Chrysalis


People say butterflies symbolize endurance, change, hope, and life-
very much symbolic to dad's journey to recovery.


I love you dad! Keep fighting, stay strong, and never lose hope. Bad days don't last forever! Praying today is better.

Day 30-Hanging Out!

It's hard to believe it's been 4 weeeks since dad broke his neck.  It's been an amazing month full of hope and recovery.  It's been a rollercoaster of emotions. And at the end of each day, I am thankful for my dad's strong spirit and his fight to recover the best he can.

Each day, we see progress, sometimes it's small

but hey, it's still progress. 

Today, dad complained about the burnt, dry grilled cheese...wanting better tasting food is progress!  More importantly, mom is making progress! She learned to use the hoyer lift to transfer dad. 

 Mom at the hoyer controls???? Scary thought indeed! Good luck dad. 

 Just hang around for awhile, she'll get you moved.

                           Dad's new hammock swing...fancy huh???

Dad still hanging and praying mom can operate this thing!