Saturday, October 27, 2012

Day 14: My Heroes Have Changed


31 Letters to the New Mom of a Child with Spina Bifida
Day 14: My Heroes Have Changed

Dear Momma,

When I was younger I had all kinds of super heroes I looked up to; Wonder Woman, The Hulk, the entire A-Team.  As I got older I realized that the real heroes in my life were people that were closest to me.  In fact, Garth Brooks came out with a song a few years ago called “Standing Outside the Fire”.  Everytime I heard that song I thought of one of my sisters, she was never afraid to take a chance, try something new or just be herself. 

Day 13: Getting in a Rhythm at Home


31 Letters to the New Mom of a Child with Spina Bifida
Day 13: Getting in a Rhythm at Home

Dear Momma,

When you first come home with your new baby, things will seem chaotic.  It ‘s just like bringing home any baby, there will be nighttime feedings, diapers to change and regular doctor visits.  Now add to that other concerns, specialist appointments, insurance paperwork and if you have other children their schedules, dinner to make, toilets to clean and clothes to wash. 

Day 12: Taking Care of You


31 Letters to the New Mom of a Child with Spina Bifida
Day 12: Taking Care of You: 5th Post in the series-Being your Child’s Advocate
Dear Momma,

I can’t stress this enough, YOU MUST TAKE CARE OF YOU!!!  When your child is born, it will be very easy to get so wrapped up in the care of your child that you forget to take care of you.  You must remember, if you get sick, tired or down it will be very difficult to care for your child. 

Day 11: 5 Reasons to Find a New Doctor


31 Letters to the New Mom of a Child with Spina Bifida

Day 11: 5 Reasons to Find a New Doctor:  4th Post in the series-Being your Child’s Advocate
Dear Momma,

In the last post I wrote about not being afraid to press for results,  if your child’s physician, therapist or equipment vendor is not meeting your child’s needs then you may need to find a new one.  I wasted so much time with doctors and therapists that weren’t “cutting it” because I was so worried that I would hurt their feelings or have to deal with an uncomfortable confrontation. 

Day 10: Listen to your Instincts and Press for Results


31 Letters to the New Mom of a Child with Spina Bifida
Day 10: Listen to your Instincts and Press for Results:  3rd Post in the series-Being your Child’s Advocate

Dear Momma,

When we brought Jaycie home from the hospital in November, I was terrified.  I worried that we wouldn’t know what to do if her shunt malfunctioned.  For us it wasn’t long before we were faced with that situation.  The week after Christmas, I noticed she was more sleepy than usual and wasn’t really herself.  I also noticed that her tubing from her shunt appeared to be more noticeable and looked like a question mark under her skin on the back of her head.  I

Friday, October 19, 2012

Day 9: Knowing the Process of Referrals and Authorization- Second of 5 Posts on Being Your Child’s Advocate


31 Letters to the New Mom of a Child with Spina Bifida

Day 9: Knowing the Process of Referrals and Authorization- Second of 5 Posts on Being Your Child’s Advocate
This day 9 in my 31 day blogging challenge on my daughter's Spina Bifida diagnosis.  I hope the information in these posts is helpful to someone.
Dear Momma,
As your child’s advocate, you must understand the process for medical referrals and authorization.  Every state and insurance company will be different in some aspects so the best thing you can do is find out how it all will work for your child.  Trust me, driving 4 ½ hours with a baby to have a CT scan done and finding out when you get there that the insurance will not cover it is no fun.  Save yourself the aggravation and keep reading.   Below are 5 things you can do to ensure your child is receiving the proper care at appropriate times:

1.       Contact your insurance agent, find out what medical procedures need to have prior authorization and which procedures, equipment and appointments do not.  Let them know what procedures your child might need over the next year and find out the procedures for requesting insurance payment of them.  Record all this info and place in your child’s medical binder.

2.       Ask your child’s Primary Physician, how the referral process works and who is in charge of authorizations and referrals in their office. GET ON A FIRST NAME BASIS with the person in charge of that process and make sure you have their contact info in the medical binder.

3.       Follow-up with everyone until the procedure has been completed or the equipment has been received.  Be persistent, follow-up with your child’s primary physician, the medical specialist involved (neurosurgeon, physical therapist, etc…), the insurance company, the equipment vendor and the authorization specialist in your child’s physician’s office.

4.       Don’t back down, if there is a specialist, doctor or agent that is not completing their paperwork in a timely manner…stay on them-be a “squeaky wheel” until they get with the program.  If they aren’t getting any better about it, find someone else (supervisor or new doctor).  Your child’s health and well-being are more important than loyalty to someone that is not doing their job!

5.       Rinse and Repeat.  Every medical procedure will require attention before you ever get to the doctor’s office and insurance policies get updated or changed  so be prepared to repeat steps 1-4 frequently.

With Love,

Sherry

P.S. Don’t forget to have all records from any appointment, procedure or evaluation sent directly to your home address or ask for copies before you leave the office.

Day 8: Asking questions- First of 5 Posts on Being Your Child’s Advocate


31 Letters to the New Mom of a Child with Spina Bifida

Day 8: Asking questions- First of 5 Posts on Being Your Child’s Advocate
Today is day 8 in my 31 day blogging challenge about my daughter's Spina Bifida Diagnosis.  The next few posts will be a series of 5 posts on being your child's advocate. 
Dear Momma,
After Jaycie was born, she had to lie on her belly until she had her back closure surgery (surgery was within 24 hours of her birth.).  After the surgery she had to continue to lie on her belly for several days until her incisions had started to heal.  During that time she developed a horrible rash on her bottom.  It was awful-looking.  Red and at times it would even bleed.  As her Mom, I was mortified that she had it to start with so I started to ask questions.  I knew the nurses in the NICU were using ointment when we were not there but what I couldn’t understand is why it was a different type every time we had a nurse shift change.   One nurse would use vaseline, one would use a typical zinc-based ointment and one used something I had never heard of.  The other thing was they were leaving her diaper on her when we weren’t there.  So I started to ask the nurse questions.  “Why are they changing her creams?”  “Why aren’t they letting her bottom air dry?” When I started to ask those questions that wonderful nurse gave me answers and she told me something that I have held onto ever since.  She said, “You are the Mom, what you say should be put into the nurse’s notes.  What would you like for us to do?”  So I told her that I wanted the urologist to recommend a cream for the rash and we will all use only that cream.  I also told her to put into the notes that when Jaycie is in her bed, that the diaper should be placed under her, but not over her bottom.  She needed to stay as dry as possible until we could get it all cleared up.  In less than 2 days the rash was gone and I was empowered to know that as her Mother I could make decisions regarding her care.  I want you to know that you have every right to ask questions and make suggestions about her care.  This is the first of 5 posts about being your child’s advocate.  Today, I want you to be empowered to ask questions.  Ask the seemingly small questions along with the huge questions.    

With Love,

Sherry
P.S.  I you have any information or stories of your own "empowerment" please share it with us.

Tuesday, October 16, 2012

Day 7: Organizing the Medical Records and Information


31 letters to the new mom of a child with Spina Bifida
Day 7:  Organizing the Medical Records and Information

Dear Momma,

Organization is a key element in any household; however, when there is a family member that requires extra medical attention organization is a necessity.  Right after Jaycie was born, the hospital gave us a huge 3-ring binder that zipped closed.  They said it was for keeping up with all of her medical appointments and records.  I thanked the nurse coordinator for bringing it in and I put it in our belongings to take home.  I thought “I’ll get to this when we get home, in a few weeks.”  I wasn’t thinking about the fact that my time and energy would be “zapped” after we returned home.

Monday, October 15, 2012

Day 6: Photos of my Jaycie

31 letters to the New Mom of a Child with Spina Bifida

Day 6:  Photos of my Jaycie

Dear Momma,

Here are a few photos of my baby girl in the hospital and now that she is older.

One of the first times I held her, after her back closure surgery.  Look at all that hair!

Thursday, October 11, 2012

Day 5: Laughter is the Best Medicine

31 Letters to the new Mom of a child with Spina Bifida
Day 5:  Laughter is the Best Medicine

Dear Momma,

Throughout the process of Jaycie's diagnosis, her birth and bringing her home; our family found some wonderful comfort in laughter.  I wanted to share the videos below to let you know it is okay to laugh again. 

With Love,

Sherry




Wednesday, October 10, 2012

Day 4: The Process

31 Letters to the new mom of a child with Spina Bifida
Day 4: The Process
Dear Momma,

Whether you found out while you were pregnant or didn’t know until your little one was born, you will still need to understand and face the process that is “grieving”.  When my husband and I first found out about Jaycie’s Spina Bifida diagnosis, I was numb. 

Friday, October 5, 2012

31 Letters to the New Mom of a Child with Spina Bifida Day 3: Information and Resources

Day 3:  Information and Resources
Our Jaycie, on vacation, she had just
eaten some green candy. :)

Momma,

The best way to learn is to find someone that has travelled the road you are facing.  If you have any questions or comments please contact me or comment below. 

Thursday, October 4, 2012

31 Letters to the New Mom of a Child with Spina Bifida, Day 2: Making Your Press Statement to Friends and Family


Day 2:  Making your Press Statement to Family and Friends

Dear Momma,
Since finding out that your baby will be born with Spina Bifida, you have probably been bombarded with questions from friends and family members and you are still trying to comprehend the information yourself.  First let me say, it is okay to say, “I don’t want to discuss this right now.”  I basically went into hiding after we found out about our little Jaycie.  I was depressed, grieving and did not feel prepared to answer their questions.  Plus, some people do not have a lot of sense and they have a tendency to ask stupid, insensitive questions. 

Wednesday, October 3, 2012

31 Letters to the New Mom of a child with Spina Bifida Day 1: Getting the News


Day 1:  Getting the News

Dear Momma,

I remember the day that I received the call from the doctor’s office.  It was a voicemail to be exact and the nurse said, “There were some concerns with your blood work and we are going to refer you to another clinic for further evaluation.  Please call the office on Monday morning to schedule an appointment to speak to the doctor.”  

Tuesday, October 2, 2012

Plans for 31 day Blogging Challenge


What is the 31 day Blogging Challenge?  The 31 day challenge is a challenge for bloggers to choose a specific topic and write a post for each day in the month of October. 

Monday, October 1, 2012

The Enchilada Bullet


Quick, kiss the cook and maybe we can order pizza!

I am what you might call a “creative cook”, my husband says it is experimental. J

Where There is No Vision...the Children Misbehave?


 
 
Our princess, hard to believe she would
ever misbehave, right?
Successful corporations have them, winning teams use them and when created and communicated properly they can change the course of a business in a short amount of time.  What am I talking about? 

Friday, September 21, 2012

Holding Kids Accountable with Their Food: Using a Snack Basket

 


When my oldest son was about 4 years old, he would snack all day long. He would eat breakfast and 10 minutes later come to me begging for a snack.

Thursday, September 20, 2012

7 ways to use baskets

Baskets I found for 25 cents a piece
at a local thrift store!
I love the thrift store! I can usually find something to repurpose or re-use at a fraction of the retail cost. Last week, my son reminded me about the snack basket he and his brother used to have and I decided to go out and find some baskets to repurpose and organize with.

Wednesday, September 19, 2012

Great is Thy Faithfulness

This was originally posted on the WV Christian Women's Network blog.


Yet there is one ray of hope:  his compassion never ends.  It is only the Lord’s mercies that have kept us from complete destruction.  Great is His faithfulness; His loving kindness begins afresh each day.  My soul claims the Lord as my inheritance; therefore I will hope in Him.
Lamentations 3: 21-24

 After a very busy weekend with family, it was Sunday morning and I had overslept!