How we stay calm while traveling!!....

Here's a post I just helped write for Wonderbaby website:

http://www.wonderbaby.org/articles/traveling-with-a-medically-complex-child

Piloting The Journey - for 2013 CHARGE Syndrome Conference

In preparation for the 2013 CHARGE Syndrome Conference, I'm posting one of my poster session topics to this website.  These are slides created for the topic "Piloting The Journey".  These slides helped me adjust my self perception and work towards key goals for my life and children.  Hopefully you'll find them useful as well:
Google Document / Powerpoint Presentation version:
https://docs.google.com/file/d/0B64Ogfb0stchWHg4cHFnSWlTcm8/edit?usp=sharing
PDF Document version:

https://docs.google.com/file/d/0B64Ogfb0stchaHdONUNjblJlX2c/edit?usp=sharing

See Article on Wonderbaby - Stay Organized

Amber Bobnar, creator of Wonderbaby, asked me to write a blog post about how I created an organization scheme for Alexis' medical records.
Here it is:
http://www.wonderbaby.org/articles/stay-organized

It's short, straightforward and even includes links to the documents that I use.  Feel free to comment on this post or on Wonderbaby page.  Please email me if you want Alexis' file, I'm happy to share it!

Catherine

Respite House

Respite in the Woods - Mountain Top Town House for Respite or Relaxing

We purchased this condo in 2004, two years before Alexis was born.  We skied every day each weekend the year before I was pregnant with Alexis.  Then lots changed - we still go up, but we don't go up as often as we'd like.  We'd like for people to rent and use our condo.  We get a lot of peace and quiet from being up there.  It's surrounded by mountains and convenient to lots of activities in the White Mountains.

https://www.airbnb.com/rooms/791325

Let me know if you have any comments.  I'm suffering from one of those "I do too much" colds, so I'm not inspired to write a bunch tonight.
Catherine

Where has time gone? Doors are opening....

Some people will know that I've been busy.  I work full time, I parent, I manage Alexis' PCA staff, and I try to maintain a sense of sanity. I think I walk a fine line, but so far it works.

What's been happening in the past 16 months:
- Along with many family, friends and colleagues, raised $7500 for Perkins (for their Marathon Team who ran Boston's Brutal 95-degree day) - many thanks to Stephanie for having a fantastic run that day!
- Jessica (age 5) had her attempted ASD repair in Cath lab in Nov 2011 and then her successful ASD repair via Open Heart Surgery in Apr 2012
- Changed jobs from working in Philips Healthcare Finance to working in a combined role between Philips Lighting and Philips Healthcare to launch "LightAide" a product for children with visual impairments.  Contact me if you're curious about this.
- Brainstormed additional ways to support other families with technology and advice from seasoned parents, thanks to Holly for partnering with me along in this effort.
- Attended several conferences for work, including a large sales meeting - where I was recognized for my work on "LightAide" and then TEDMED where the prototype of the LightAide was demonstrated.  I was honored to meet Michael Graves, who has very progressive ideas about design and healthcare.  It was an honor to meet him and appreciate his story.  Learn more by watching here:  http://blog.tedmed.com/?p=579
Another fantastic person I met was Loreen Arbus who is a talented trailblazer in many areas, but most especially providing a voice for people with disabilities.  She accomplishes so much, reading about her makes you feel like she must manufacture extra hours in a day: http://www.shemadeit.org/meet/biography.aspx?m=109 and http://tedxwomen.org/speakers/loreen-arbus/

From the TEDMED experiences, I observed great ideas for products, for software, for communicating between teams of people and for making medicine better than it is practiced today.  However, as I flew home from Washington DC, I had to write my "TEDMED" talk.  I was compelled to write what I felt was missing from TEDMED stage, the perspective of the patient and the caregiver.  I had to earnestly start sharing my experiences so that other families can benefit.

On the airplane, I wrote the outline for: http://childrenshospitalblog.org/our-patients-stories-a-is-for-alexis/
I shared it with several friends and then sent it to a Doctor at Boston Children's Hospital.  She put me in contact with their Thriving Blog team.  Then between August and November, 4000 people read the blog post and at one point the Facebook post had 10,000 likes.  It's clear the message was important.

So, where does all of this taking me. . . . to a bold frontier where I can help more patients and families.  I hope to influence medicine to be about caregiving for everyone and not just "problem solving".

Enter another synergy.  From a family listserv, I received the request to share stories about patient perspective from the Arnold P Gold Foundation (http://humanism-in-medicine.org/).   I am honored they have decided to use our experience as a way to publicize more about their organization and the important work they are doing.

(from their letters today)

Dear Bob,   “In college I had three majors, and eventually went on to earn a PhD and MBA. But my biggest life lessons came from my MOM degree. When I was pregnant I found out I was having twins. Baby A and Baby B were growing fine until week 29, when suddenly I didn’t feel well and went to the hospital. At that point, the doctors told me that they couldn’t find Baby B’s heartbeat…”   So wrote Catherine Rose replying to my recent email request for your stories, in your own words. The link below will take you to the full account she sent. One excerpt that follows, eloquently captures the purpose of my last email and the work of the Gold Foundation to promote patient-centered care. We can amplify the national dialog between patients and healthcare providers – as well as the dialog and insights patients share with one another. When you support the Foundation, that’s what your gift helps to accomplish.   Please, before you read further, take this moment to make your contribution - or add to one you've made, if you can. Our programs reach every graduating medical student in the US, their teachers and thousands of practicing physicians. With your support added, so will words like these from Catherine Rose:  "As a parent of a sick child, I’m asking medical professionals to think about how their actions impact those they treat, outside of tests and prescriptions. To do that, here are a few things to things to keep in mind: Always acknowledge, appreciate and respect the family. Please understand why we are so anxious to know a diagnosis. We appreciate your desire to be thorough and “solve” our child’s problem, but that solution is often just the beginning for us. We’re anxious to know how our lives will change and to find ways to balance that change with parenting techniques that will make our children’s lives better. We need to be partners in the care of our kids. You see them for a few hours every year; we keep them alive for the other 8,755 hours. We know that part of being a team means getting bad news. However, you have the power to layer those conversations with as much hope and understanding as possible. Please do your best to exercise that power." You can read Catherine’s full account here as it was published this past August in the Pediatric Health Blog of Boston Children’s Hospital.  If you have a story I should tell, please share it by reply email. And if you didn’t do so above, I hope you see now the value of your gift.   Our good health – and our nation’s – depends on both.               Richard I. Levin, M.D. President and CEO

619 Palisade Avenue | Englewood Cliffs, NJ 07632 | (201) 567-7999 | www.humanism-in-medicine.org

https://app.e2ma.net/app/view:CampaignPublic/id:1400483.12979254927/rid:cf1406161565d19ad5b57473ae40ede7

I realize this is more about the journey and less about the "Caring Calm" as the Blog promises, but stay tuned for new and different posts - hopefully there will be more information to follow.
Catherine

Caring for Yourself... Knowing your Limits

You've realized by now that I'm not posting often to this blog.  When I set it up, I used it as a chance to post some materials for a presentation for Federation of Children with Special Needs. 
I also used the same presentation materials for the 10th Annual CHARGE Syndrome Conference. 
I organized both talks around how Alexis changed my life and how to maintain my sanity I needed to get a lot more organized.
So I hope that I can share some of those techniques with you all with this blog.  Please feel free to review previous materials posted - I've gotten great feedback on the "Quick View" and on the "Medical Patient Summary." 
             Please feel free to download onto your computer, edit them as you want.
             Please feel free to print them, write on them.
The point is to use this as a starting point for your own organization program.  What works for you, may not work for me - we are all unique in that way.  But know yourself, know your limits.

I also want to share a small thing about the 10th Annual CHARGE Syndrome Conference that I attended - I didn't attend all of the sessions.  The conference occurs every 2 years - during my first conference in 2009, I attended every session - I got woefully overloaded with information, anxiety and concern.  Thankfully there were many uplifting sessions to help balance.  But I found myself exhausted from the Conference.  This conference, I knew myself better and cared for myself more.
When I was getting "anxious, concerned or overloaded" - I took a break.  I figured I wasn't going to be able to absorb the information in the session in that "state of mind".  So I took a break.  Every so often, we all need to take a break.
Do yourself some good, take a break, care for yourself and know your limits.
Enjoy reading more about how I got and get myself organized for Alexis' care. 
Please write me email at cat_rose at comcast.net if you want more information.
Catherine

Create Calm for Chaotic Times: Quick View

A picture is worth 1,000 words....
Then why not use pictures to explain the patient's medical needs??
Useful for:       
  ER Visits
  New Doctors
  New Caregivers

It is Quick, Intuitive, Visual.

RED:  Critical info

YELLOW:  Medical background

GREEN:  Tips on Patient Interaction.
Includes Height/Weight, Surgery List and Contact information

This is the example that I use for Alexis.

Here is the link to download examples for you.  As I grow this website, I'll provide how-to documentation on how to fill it out. 

Try to start small and slow.  Pick up steam, confidence and CALM. 

For Babies and Toddlers:

Download the .pdf version of the file: http://bit.ly/eCiqxn

Download the .pptx version of the file: http://bit.ly/dX1VIG

For Child:

Download the .pdf version of the file: http://bit.ly/hwGFwW

Download the .pptx version of the file: http://bit.ly/hUATkO

For Adult Female:

Download the .pdf version of the file: http://bit.ly/etIsaJ

Download the .pptx version of the file: http://bit.ly/gBwtJf 

For Adult Male:

Download the .pdf version of the file: http://bit.ly/ghAGGX

Download the .pptx version of the file: http://bit.ly/e73cBG

Create Calm from Medical History and Appointments: Patient Summary

·        Create your own document to keep in 1 place

·        Keep it in your language, your understanding

·        Include: Doctor, Phone number, email

·        Past and Future appointments

·        Summary of last appointment (approximately 1 paragraph)

This is the example that I use for Alexis.

Here is the link to download examples for you.  As I grow this website, I'll provide how-to documentation on how to fill it out.  Try to start small and slow.  Pick up steam, confidence and CALM. 

Download the .pdf version of the file: http://bit.ly/ggtrfj

Download the .doc version of the file:  http://bit.ly/hBEXXm 

Creating Calm - What works for me!

Create Calm for yourself

·         Our journey is long.

·         Know who you are.

·         Be at peace with your best.

·         Know that we all struggle, in different ways. 

·         Reflect, take time and love yourself and your family.

Create an Outstanding Team of Service Providers / Doctors

·         You are the manager / leader.

·         Define the common purpose for a team.

Examples:  Keep your child alive.  Avoid certain treatment.  Achieve certain treatment.

·         Define performance goals.

Examples: No hospitalization rule.  Quality of life.  Growing and meeting expectations.

Create Calm from Papers

·         Power of One

·         Keep them in 1 place (bin, room, file cabinet)

·         Review, Purge if possible 1 per year

·         Try to keep it contained in 1 place 

·         Get them from the hospital (be diligent about requesting speedier service)

·         Scan them! Create pdf files

·         Keep on your computer or external drive.

·         Email to doctors, therapists, teachers!

Helping each other....

The Genesis of this blog is to help guide people who have encountered the same challenges I have.
Have you ever? 

    Not understood a doctor?

    Not remembered to schedule a follow-up appointment?

    Wished for an easier way to communicate your loved one’s medical history?

    Wanted a fast method to share urgent information in the ER?

    Hope to create CALM from the CHAOS of CARING for a loved one?

Hopefully, we can be on this journey together. 

Who am I?  And more importantly, why should you read about my story?

My name is Catherine.  My daughter Alexis was born 5 years ago, but her traumatic story starts even before she was born.  Alexis was a twin.  Her sister Kaitlyn died in utero at 29 weeks.  I was ordered to strict bedrest and endured another 8 weeks of pregnancy carrying live Alexis and deceased Kaitlyn.  Alexis was born via c-section at 37 weeks, with 19 different doctors and nurses assuring that Alexis and I made it out alive.  Even though Alexis was full term, she was only 4 pounds.  We lived in the NICU for 72 days, trying to piece together all of her defects.  By her first birthday (which ironically we spent in the hospital), we had identified the following anomalies – right side choanal atresia, cleft of soft palate, bilateral severe profound hearing loss, right side small right eye, low vision, heart defects (ASD and PPS murmur), fusions of the cervical spine, microcephaly, clenched hands, abnormal brain spikes, kidney problems (pseudohypoaldosteronism type II), and obstructive sleep apnea.

She is now 5 and remains undiagnosed genetically, a medical mystery, a scientific misfit.

So that’s how we got to where we are today.

She is seen actively by 18 pediatric specialists.  We have created a medical team that works with us, supports us and listens to us, since we are the primary caregivers for our daughter.  We consult with them.  They recommend treatments based on their experience.  We recommend treatments based on our observations. 

In this journey, I have created some simplifying solutions that I think help our family maintain calm and peace while caring for Alexis.  I hope you will find them useful as well.