Yeah - we're still around.  Life has been quite busy.  After Tim's wedding we focused on a variety of things.  In November we vacationed in Florida and we're extremely blessed for the others that came down to help us in our care for Laura, namely our daughter Emily, Darlene's brother Tom, and my brother and sister in law Jon and Jen.  It was so great seeing all of them as well as the help they gave us in caring for Laura.


No pictures this time - so as we suggest to Laura when we read to her: "... just relax, listen to the story and paint colorful pictures in your mind..."


Laura and Emily attend the same University and thanks to videographer skills of her brother Tim and patience of her mother Darlene, in mid December Laura presented her final assignment in video format - viewable on youtube at www.youtube.com/watch?v=igMQgT0_lZc.  Absolutely amazing.  Earned Laura an "A". And touched the hearts and minds of all the other students and the professor. 


Since the last posting we've had two (2) trips to the ER, the latest was after a 35 minute in-home attempt to treat Laura's near fainting episode. Without going into the details, Laura received the final diagnosis of: Near Syncopal.  I had to look it up on google, and yes, Laura met the definition. 


Darlene manages all the health care issues; I handle the administrative and insurance issues. There is crossover when needed.  So, more curve balls thrown our way. And we're still hitting them out of the park. Our management style works for us, especially because of the added strength we receive from extended family, friends, neighbors, and prayer - which we are extremely grateful for.


Happy New Year to all and may 2015 bring you the joy, happiness and peace.

yeah - it's been a while. But rest assured - all's been going well.  Laura continues to thrive in her class at Towson University. Her professor is wonderful and it really is great seeing her in the presence of kids her own age.

Earlier this month Laura was sick for a short period so we had 24/7 eyes on her to make sure she didn't aspirate.  Her temperature eventually came down so was all breathed a sigh of relief.



 


The BIG news is that Laura's brother, Tim, got married last week to a wonderful your lady - Sarah - and we have every reason to believe that their marriage will bring decades of love, joy and happiness their way.
The outdoor wedding was beautiful and all had a great time.



It's always reassuring to know that Laura has healthy moments of joy and excitement in her life.  When I arrived at home before the 3 day labor day weekend, Darlene and Laura were sitting on the back deck and a particular comment turned Laura's flat affect into one of warmth and happiness. Moments like these make all our efforts worthwhile.


Unfortunately, Saturday wasn't as positive.  In the middle of the day, Laura was inconsolable while she wrestled with the realization of the debilitating nature of this disease and her inability to do common everyday tasks like read, pick up a drink when she's thirsty, or grab a cookie when she's hungry. 

It's not often I share about the tough daily grind, but this is a snapshot of what really happens behind the scenes.  Kudos to Darlene for the care and compassion she shows Laura at all times - all the more reason for me to do my part when I am at home.

I stood her up and held her for 10 minutes - usually that helps as it has the dual benefit of encouraging blood flow throughout her body, and relieving excessive pressure on her bottom and lower back. It ends up, I'm the perfect height as she is able to nestle her head on top of my shoulder.  Unfortunately, it did not resolve the matter.

Laura looked a little tired so we took her upstairs for a nap.  After getting her in her bed, Darlene read some of the Jodi Picoult book titled "Vanishing Acts".  If there's any silver lining, it was Laura's comment when Darlene commented to Laura that she looked more relaxed.  To which Laura commented: " I like the movie." 

That's odd. What movie was she referring to? Laura explained, "... the movie I'm painting in my mind as you read to me...."  So on that happy note, Laura drifted off into a 30 minute nap

Laura attends Towson University.  Thanks to the great support of Towson University, the great  care by Laura's personal care attendants (Emily and Darlene), and the flexibility of her professor, Laura is taking a psychology class at Towson University - at the exact place and with the exact same favorite professor where her university experience began prior to becoming symptomatic with the effects of this disease.

We are all so happy that Laura can participate in the community, interact with young adults her own age, and continue learning about her favorite subject.  We look forward to great school spirit and maybe a few football games in the fall.

We took a vacation break earlier this month and our daughter Emily was able to join us.  The vacation house was able to accommodate 22 people so we were able to relax a bit and have good times with my father, brothers and their respective families.

Each night, one of the families was responsible for preparing the main dinner.  The image includes Emily and Darlene standing behind their excellent creation.

After vacation, it was time to get back to work.  And this morning the 70 year old cast iron tub was removed and marked 99% complete on the  bathroom demolition.  The rest of my work includes final clean up of debris before the electrician comes in. Expected completion:  no later than September 15 .

New Bathroom Project Begins

After a couple years of planning and saving money, we are excited about how our upgraded bathroom will turn out. Phase one is the demolition and typical of my financial theory - no spending on credit, save money where you can / spend it where you have to - I've opted to do the demolition myself,  saving me about $1200. 

The bathroom on the main floor measures about 7 1/2' square and plans are for a roll in shower with no lip, ample space for maneuvering around, recessed and tiled shelves around the room for storage of supplies, heated towel bar, a heat lamp, and so on...

When demolishing the bathroom we discovered the date it was initially added onto the original house - the signed backboard reads: George William Dorfler (Darlene's grandfather) June 1947.

The project should be completed by Sept 10, 2014.

I realized last night that it's been a couple months since the last posting. Fortunately, in this case it means that home life, and Laura's status, has remained relatively stable.  So in spite of the daily grind, Darlene and I do our utmost to provide Laura with enjoyable activities. The left image is a cook out in the back yard to enjoy the spring weather and celebrate Laura's successful completion of her class at Towson University. Her sister Emily, who also served as her care companion during the entire semester, was able to spend time with us.  The right image was last weekend at a private horse farm in Pennsylvania where we enjoyed a cook-out in the company of a few other families going through similar challenges that we are.