Emily and Laura

Scenes like this remind me how blessed Laura is to have so many people spend time with her. To our other daughter Emily:  Thanks for being a wonderful sister and daughter; thanks for everything you do.   

Call it: Bitter Sweet Blessings  

A month ago Laura's cousin set up a gofundme page https://www.gofundme.com/lauramld
for Laura and we are absolutely amazed at the care, compassion and support people are showering us with.  Friends, family, and community have all been sharing in our journey. Thank you.  Some of this support is from people we've never met proving that the depth of the communities compassion is incredibly real.

So in spite of this journey we wish we were never a part of, we push on, hopeful that today and tomorrow will be better than the last, and trying to always stay focused on enjoying each moment.

It's been so long ! And there's no way I can cover the past 6 months. So here's a brief update of what's been going on.

First and most important.  Laura is in good spirits and has a wonderful perspective on life. Most of the time. 


However, every few days she will repeat "i hate this disease"  What's a parent to do?  We acknowledge it and offer reassurance that we are dedicated to taking care of her and doing whatever we can to help.  And that's what we do.

In the past month, there has been an unfortunate, and expected, progression in her disease.  So added to the senses and functions she's already lost, add can no longer drink (swallow) fluids and is legally blind.

So we push on.  We've modified her bedroom, again, so we can respond to her health needs.  This includes a sleeper chair so we can spend the night next to her when she's sick.  And IV bags for Gtube feeding and hydration.

Meanwhile, we continue to engage Laura in social functions and have weekly trips to Kennedy Krieger where she can actually walk on her own using a mechanically assistance device we all call "The GEO".

And now that it's warmer outside, we make it a point to have her on the back deck with us to enjoy sun and nature.

Many have heard about the 6 degrees of separation theory.  Well, Laura is 2 degrees removed from Pope Francis!! 

Let me explain: A few weeks ago, Laura was a guest of Maryland's Governor Hogan during the season opener between the Washington Redskins vs. Miami Dolphins.  This event was organized between the Governor's office, the Washington Redskins, and the Cool Kids campaign to recognize and acknowledge the effect that cancer has on many of us.  Governor Hogan is currently battling non-Hodgkin's lymphoma.  The connection is that Laura underwent a bone marrow transplant and has experienced many of the same treatments, baldness, joys, sorrows, and challenges that other kids have gone through during cancer treatment.

Here's why it's 2 degrees:  Yesterday the governor had the honor of meeting Pope Francis!  Voila.  There you have it !  Don't tell me life doesn't get exciting!

Prayers for personal strength, health and happiness are sent Governor Hogan's way during his ongoing treatment and recovery.

I know! It's been months since our last update.  So instead of replaying everything that's been going on, I'll just give you a snapshot of how we  are making the most of every day.

Last week I was spending some time with Laura and engaging her in

some great conversation.  I wanted to find out what Laura wanted to talk
about so I asked her the question: If heaven were a planet, which would it be ?  Answer: Jupiter.  And this led to other associations:

beach ......................... anywhere in CA
dog ............................ golden retriever
sister .......................... Emily
mother ....................... Mom (Darlene)
school ........................Towson University
favorite breakfast ...... chocolate chip pancakes
favorite dinner .......... macaroni and cheese

drug .......................... marijuana, and last

flower ........................peony

                   

I can't even imagine how boring it is to sit in a wheelchair all day long, all the while unable to verbally articulate what you may want, as in: hungry, tired, bored, can you take me here or there, I'm cold - can I have a blanket, and so on...  I think Darlene and I are pretty good at being able to read Laura's expressions, decipher her quite whispers, and read her lips.  We match these observations up with the time of day to get a pretty good idea of what she needs, wants, or would enjoy.

Thankfully, Laura loves breakfast time and always appreciates the chocolate chip pancakes.  Usually after the 1 hour required to feed her I stand her for 20 minutes to alleviate the pressure on her backside.

Past weekends we've gone out to movies or lunches; this past weekend we mixed in small events like reading her college textbook on "Educational Psychology", reading to her the latest Jody Picoult book, sitting together and looking out the back windows at the birds. Since the temperatures were in the low 50's on Sunday, we all went to church together and picked up lunch at Panera afterwards.

At a couple points, she was excessively uncomfortable so we would take an afternoon nap.  Another time, we took advantage of a 20 minute bike ride (image top left) on her mobile programmable pedal machine that can be rolled up to her chair.

Allow us a moment to pat ourselves on the back for a job well done. 8 months ago we started the process of planning a complete re-build of a bathroom to meet Laura's needs, including design, demolition (previously shared on this blog), and contractors.

Most challenging: working with insurance to acquire a functional shower chair for Laura.  This last component actually took the longest - the full 8 months from requisition to approval to receipt. 

Persistence, sprinkled with daily doses of patience, were absolute necessities so all the pieces of this puzzle fall into place. And looking into the inner workings: We received quotes ranging upwards to 35K  and we are happy to say our final price tag was 11K with all the bells and whistles.

Alas, we have a fully functional, totally waterproof, roll-in bathroom, shower with no lip, overhead lights, fan, heater, new electric and plenty of workspace.

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.

You know it's spring when....

There's no better way to spend a sunny spring day then at Sherwood Gardens in Guilford, Maryland.  To bask in their 10,000 tulips.  For the past 20 years this has been an annual event for the girls.  Here's hoping that all can enjoy a little bit of sunshine after the past cold and snowy winter.



I know I tend to minimize the cold as evidenced by wearing a coat less then 5 times this winter. Nonetheless I predict that spring like weather is 3 weeks away. And this past weekend was a welcome precursor.

On Saturday Darlene, Laura, and I took advantage of the 60 degree temperature by going to the Zoo.  This is always a favorite of Laura's and it does all of us good in so many ways: the fresh air, change of scenery, exercise and interaction with others.  It's so good for Laura that we became members and plan on visiting a number of times over the next year.  So, besides the class she is taking at the local university, add another check mark to the list of "new" activities that Laura is now involved in.

Some very exciting news to share with all:

Laura has shared that she misses Towson University, which she attended as a freshman. And then began the downward spiral until her eventual diagnosis in spring of 2011. 

So over the past few weeks Darlene and I have worked with Towson to get her re-admitted.  We are all so very pleased to say that yesterday was Laura's second class.  And we are very blessed that her sister Emily jumped at the chance to be Laura's personal driver, note taker and text book reader.This is another component that helps Laura in so many ways, namely social interaction with kids her own age, more time with her sister, engaging her mind, and added depth to her purpose in life. 


 

We usually start getting Laura ready for bed by 8:00 in the evening.  I move Laura into the chair glide, take her to her bedroom on the second floor, get her dressed and ready for bed, place her in her bed, give the medications, and brush her teeth.  Darlene comes in later and gives her the 9:30 medicine and tube feeding.  Usually I'm asleep by the time Darlene is finished.

We do make a pretty good team by sharing these responsibilities. We have found it's all about taking turns - one person taking their turn in assuming the responsibilities while giving the other a turn to take a break.  Sometimes the three of us do things together like taking Laura to the gym.  Total time required to make this enjoyable for Laura:  3 hours (getting ready for the trip, driving, locker room, and so on).

Laura usually gives a "thumbs up" sign to either convey a "yes", or "I'm happy".  When she combines this with a smile we know that she is ecstatically happy, as is the case when we get Laura in the hot tub after she floats in the therapy pool for 45 minutes.

Other times Darlene really stretches her own time and energy to make Laura's day a little brighter.  A couple weeks ago Darlene found out about a unique opportunity that she knew would highlight Laura's day and give her an experience that would carry her through for a  few days.  In this case it was a daytime community function where Ray Rice of the Baltimore Ravens made an appearance. Thank you Ravens organization for supporting your players and their community involvement; thank you Ray for making Laura's day a little more enjoyable.

 

 

 

First Hand Revelations

I have always been aware of the tremendous energy and incredible care which Darlene provides to our daughter.  Sometimes I feel guilty, and sometimes I actually feel [selfishly] relieved, that I get to go to work which provides me with about 60 hours a week of being removed from the day to days tasks and challenges of caring for Laura.

A couple weeks ago Darlene was called out of town for a [extended] family emergency and I found myself at home for 4 days with Laura. Saying it's a lot of work is a huge understatement and merely scraps the surface of the commitment necessary. 

Between the feedings, tending to personal care and hygiene issues, staying engaged with Laura so she didn't get bored, and standing her every hour to aid in blood flow, relieve the pressure on her bottom, etc...I was exhausted by the time 10 pm rolled around.

2 of the days we walked to the neighborhood sandwich shop a little more than 1/2 mile away.  Other days I found other engaging things to do such as water flowers, read to her, and talk about the Baltimore Ravens - her favorite football team.

One lesson I learned through this whole experience was the amazing level of care that Darlene provides to our daughter. And for that I and all others who see or hear are fortunate to have a real example of unselfish love and commitment.

Today marks the 2 year anniversary of Emily donating her precious bone marrow that saved Laura's life from some of the potential significant effects of this disease.

All's been going well.  Laura has caregivers stay with her 3 days a week which allows Darlene to work two days a week and spend one day with friends, for shopping, and personal well being.  The images below reflect some of what we've been involved in.

Laura has a need to stand every hour, to relieve pressure from endless sitting.  When her brother Tim visits, he usually has enough time to hold her for 5 or 10 minutes.

Laura's sister, Emily joined us last month for a weekend at the beach, compliments of my brother Mark and his wife Amy.

The last image is of Laura sailing and handling the joystick/rudder. It's taken us some time to find some of the community resources available and we just learned about the accessible sailing program held by the Baltimore / Downtown Sailing Group. (http://www.downtownsailing.org/accessible).  Experiences like this often result in Laura verbally expressing "Thank you".  Unspoken, but deep within Laura's core we can feel that she really wants to say  "Thanks Mom and Dad for spending time with me and letting me experience as much as possible".  And moments like that give us the added strength to continue on the road we are on, with our full strength and energy.