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.