We are hopeful in the near future for relief from Laurel's many treatments and surgeries.  Our family and Laurel have felt the weight of what it is like to live with a chronic medical condition.  About two years ago we knew it was time to move forward to this phase.  I am including a link with helpful coping tips but have also summarized them below.  http://www.med.umich.edu/yourchild/topics/chronic.htm

The article talks about chronic health conditions.  They define them as health problems that last over three months and affect normal activities... and they may require extensive medical care. These people are more likely to experience frequent doctor visits and some of the treatments may be scary or painful. Often families change daily routines to help the child.

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Helpful coping tips are explained
* Parents should stay involved and share appropriate information according to their child's developmental stage concerning treatment.
* Learn as much as you can about the condition and contact your doctor with concerns.  Keep a list of questions that come up so you can ask them.  This is how you obtain the best care.
* The child should have choices; some treatments are necessary and others are open for discussion.
* It is important to stay hopeful and flexible about the condition.
* Support the child's friendships and activities with peers and caring adults they can trust.
* Teach coping skills such as communication and organization.
* Enjoy fun activities, some of the normal routines of life and listen to your child.
* Parents and the family also need to take care of themselves. Let your support network know what you need and spend time with them.

• Make time to laugh!   I added this one.  We were out window shopping and feeling down from time to time, when found these masks.  Putting them on really made me laugh.  She picked her's first.  
  

This is a heartfelt song rewrite.

During treatment for Ectodermal Dysplasia Laurel has put her brave face on,

Out in public she has held her chin up,

What a pretty heart she has,

We would say it is never too late to reach or care for each other,

In the pathway will be future celebrations,

And God has been by our side through every heartbeat.

Our Favorite Things:  

We are excited about this next post!

Chewing difficulties can impair eating.  Removable dentures and appliances only restore about 25% of normal biting force and this quality diminishes over time. Both the patient who goes through oral surgeries to improve their chewing function and ones with diminished function will appreciate having a Blendtech appliance for their soft and liquid diet.  It makes all the difference!

The NFED  says “Thin, sparse and fine hair is part of having Ectodermal Dysplasia. Although there are no treatments that can change the structure of the hair.  Care is directed toward preventing damage to the hair."  The next product that we were just introduced to has had some positive results. With several brands available you may find you prefer one brand over another.  

For thick mucous, which is another symptom of Ectodermal Dysplasia, in the nose we recommend XClear Nasal Spray with Xylitol that we used many times with another child.  

February is National Ectodermal Dysplasia Awareness Month

Involving the parents in their child's treatment helps the children to get the best treatment. There are variations of  Ectodermal Dysplasia from child to child and several health care professionals involved in their care.  Many providers or parents give up or get discouraged about making health better for these children because it is too difficult and expensive.

There are challenges in the journey, such as more appointments than can be counted and trying to coordinate them.  The number increases during their high school senior year and when they want to go away to college or serve a mission.  There is no doubt it is difficult to obtain the high cost medical coverage and sufficient dental coverage.  For the parents, lifelines are great communication, trust and recommendations of doctors/specialists so we can make important treatment decisions for our children.

Parents like it when the health care team joins us in the happiness we find in the journey.  Our greatest gift is to have doctors thoughtfully treat our children.  Laurel has been greatly blessed by many!  We look for the goodness.    

Joe Tucker

Dr. Giannini 

This book by Raina Telgemeier was a gift from a dear friend Margaret (not her mom) to cheer Laurel up.  It follows Raina, a school girl, through a "long and frustrating journey" of braces, surgery, fake teeth and where she can finally smile.  Although Raina is not missing as many teeth as our Ectodermal Dysplasia children, there are many similar experiences and the humor brings some needed joy!  Thanks to all our kind and thoughtful friends, and especially our grandparents, who want the very best for Laurel!

We must continue looking at the sparkle in our journey.  I am not going to say our journey is always easy.  Laurel and our family have put plans on hold for hope.   Laurel especially has been strong and beautiful in her journey.   It is wonderful to watch her and maintain some normalcy while she transitions to health through the dedication of those who assist us and treat her.  Our family feels overwhelmed by the kindness of each person who has helped us in this journey!  I will say it is a blessed journey to see her health starting to be restored.  There have been times when we have faced forward in the right direction and are still looking for the brighter light.  When that brighter light slowly appears, we must know where it comes from.  Then go back to that light as a source of strength.  For me it often has been an answer to searching. 

 I feel fortunate to have attended the Health Care  Interprofessional Approach to the Management of Ectodermal Dysplasias, at UIC College of Dentistry.  This was my second time attending one of Dr. Stanford's educational presentations.  He knows the latest about treatments for Ectodermal Dysplasias.  Thanks Dr. Stanford!   In a conservation some time, I would love to tell you how a miracle happened that allow me to attend the conference.   I want to share this definition that I looked up and was the focus of the conference.  I have gone back to it a few times.  

“Interprofessionalism” is about two or more health professions working together to provide better patient care.  It’s a new vision for health professionals.  The Institute of Medicine says, “All health professionals should be educated to deliver patient-centered care as members of an interdisciplinary team, emphasizing evidence-based practice, quality improvement approaches, and informatics.”  Many healthcare professionals are excited about the possibilities created by collaborating more closely.  Patients will also benefit from interprofessionalism, which promises better coordinated and more effective care as well as potential reductions in costs and mistakes.

Teeth to finish a sparkling smile! 

gofundme.com/yf2yryck

Please use the above link for Laurel's story and donate towards her new permanent teeth. She is hoping to get them soon!!