Sheridan’s Story – 2yrs.11 mon.

   Sheridan’s Story ~ ~ ~

   Written by her mother, Beth.

 

 

Where to start?!

First I will start by Praising GOD for His great mercy.

He blessed our family so much..

Our story starts in November of 2005.

Our daughter Sheridan had a ear infection for the first time in her young life. She was 25 months.

The Dr put her on amoxicillan, 7 days later we went in make sure the ear was cleared up. It was in her other ear, another round of antibiotics.  This continued on through November and December.

Sheridan… playing in the cabinet before she got so sick.

In November after the second round of antibiotics she started to walk funny.

I mentioned it to the Doctors but they didn’t see anything wrong.

At the end of December we gave her the shot for ear infections that is supposed to cure them.

On January 9th of 2006 she crawled out of bed and collapsed.

She would not walk so we took her in and they could not find anything wrong.  They said bring her back in two days if she is not any better.  On Wednesday we went back.  She was not better.

Sheridan with her new baby brother Sha’ul… who reminds us so much of her.

They sent us to Seattle Children’s Hospital for a bone scan.

The scan showed a spot in her right knee.

They decided it was osteomylitis, even though she had not had fever, any open wound or other things to indicate a bone infection.  She was put on high dose cefizalon antibiotic.

We were there for 5 weeks.  In those 5 weeks her eyes started to droop.

We mentioned this to the Doctors but they didn’t think it was anything.

This entire time we were giving Sheridan nutritional supplements.

(We believe this entire process would not have taken as long if we would not have fed her body nutritionally.  We did what we knew to do.)

Sheridan was given a Green Hound Dog at the hospital.

She named him Banjo.

Before we were discharged they decided she had Chronic Recurrent Multifocal Osteomylitis….

She was put on Naprison, an NSAID.  It is the same as Ibuprofen just a prescription.

They found more of the same spots after she was on the high dose of IV antibiotics.

Spots on her ribs, shoulder blades and back hip bones.

We went home on February 17th and her eyes continued to get worse.

Glo Sticks provided a lot of fun to Sheridan and her sister, Cheyenne after we brought her home from the hospital for the last time.

In March she started having constant bloody noses, it was like a runny nose, just bloody.

She also had a cough the rest of our family never got.

She didn’t feel good this entire time.

On in to April she quit eating. She only weighed 18 lbs 5 ozs.

We were concerned and wanted to put a feeding tube in but the Doctor told us they wouldn’t do this until she lost some weight.  Also in April we saw an ophthalmologist and he thought it was blocked oil glands in her eyes.  He said it  would go away on it’s own.  We saw him again when it didn’t and he told us he didn’t know what it was.

Sheridan loved popcorn…

A precious memory is her eating popcorn with Grandpa Brunk.

One day we were eating dinner.

She put something in her mouth, screamed, and spit it back out.

At the end of April she has tubes put in her ears.

Although by that time she had been on so many antibiotics she wasn’t having ear infections anymore.

On May 17th she was walking across our yard and fell on a rock.

It fractured her leg.  If her bones had been what they should have been that would not have happened.  She never walked again…

In May we also saw an ophthalmologist in Seattle.

He looked at her and said this is what I think it is: Stevens- Johnsons Syndrome.

I had never heard of it and asked a lot of questions.

He told me that he wanted another Doctor to look at her that same day.

The other Doctor confirmed the diagnoses.

When she lost 2 lbs. we took matters into our own hands.

One of the Doctors from Children’s had been in contact with us so we called her back.

In June we went in and placed a NG tube.

After the feeding tube was placed she screamed all weekend.

We decided to take her back over to Children’s and find out why…

Later we found out why.  (See Good Grief and You comment below.)

On June 28th she had a breathing spell where she quit breathing completely .

We called 9-1-1 and were taken to the hospital here in our town.

They thought she had a seizure because she bit her tongue and her jaw was clenched.  At Children’s they decided her body had just shut down and restarted, much like a computer does.

We were there for 6 weeks.

In that time they did a lot of testing.

And every time they gave her antibiotics.

We kept telling them that it caused her to flare up but they wouldn’t listen to us.

Finally, the last 2 times they did procedures they didn’t give her anything and she did so much better.  They did a skin biopsy at one point to check for degenerative bone disease.

That biopsy showed that she had cicatricial mucous membrane pemphigoid.

This is a sub title under SJS, one that they have specifically found.

Cicatricial-scarring: mucous membranes-eyes, nose, mouth, lungs, GI tract: pemphigoid- a group of autoimmune blistering diseases.

Her eyes had at one point grown together, the top lids to the lower lids.

We had stints put in her nose in Aug. so she could breath through the stints.

When they did that they looked at her airway.

They told us we needed to do some kind of treatment to stop it from closing off and ending her life.

We decided not to do anything.

She had been through so much in her young life that we did not want to prolong it and the treatments they were suggesting were in Doctor speak OFF LABEL.  Meaning they didn’t know what the long-term side effects would be and the FDA did not approve it for the use they were suggesting.

We brought her home on Aug. 19th against the Doctors wishes.

Two weeks later to the day she died.

We saw the Doctor later and ask if she thought the treatment would of worked since she left us so quickly and she said no!!  That reassured us that we had done the right thing.

She was 2 years and 11 months when she died.

That is Sheridan’s story and ultimately ours as her parents.

We loved her dearly and miss her everyday.

Thank you for reading this and I hope that it helps others.

 

I should say, too, that the degenerative bone test came back negative two weeks after she died.

We sincerely believe it was all connected to a drug reaction.

Written by Sheridan’s Mother, Beth.

A favorite scripture verse:  John 9:1-3
And as Jesus passed by, he saw a man which was born blind from his birth.  2And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind?  3  Jesus answered, Neither hath this man sinned, nor his parents:  but that the works of God should be manifest in him.

Thoughts from the funeral service were taken from IIKings 4:8-31
This is the story of the Shulamite women who was blessed with a son after the prophet realized they had no children.  The son died.  The Shulamite woman hasted to the prophet of God.
When he saw her coming he sent his servant to ask if all was well.

She replied… It is well.

Throughout the days of Sheridan’s illness and death others testified of the peace that surrounded them.  Their burdens were lifted by those who loved and cared for them.

They experienced many emotions they had never experienced before.
They experienced God in a way they never had before.
They went through Grief Recovery Sessions which really helped them to grieve… to understand what grief is and why some things people say and do are not helpful to someone who has had this experience!

 

Sheridan’s legacy continues in the lives of those who loved her.
The testimonies continue to come from those whose lives she touched in her very special way.
Her Mother is writing a book called “Sheridan’s Story”.

As soon as it is available we will let you know here at GoodGriefandYou.com

Also, if you’d like to read more you can go to the Caringbridge site @wrayjournal.com
You will be asked to register and sign in.  You can read all the family posts there.

 

Good Grief and You comment: 

I talked to Beth about why Sheridan cried every time she was fed.
Beth explained they didn’t know what was happening then.

Afterward they did more study and pieced some things together
to satisfy their minds as to what was going on.

What they believe happened is this all started when Sheridan had
a reaction to the antibiotics she was given for her ear infection.

During some of the testing they found out that Sheridan had Turner Syndrome,
a chromosome disorder that affects the reproductive system.

Turner Syndrome can cause sensitivity to antibiotics.

When antibiotics were repeatedly given to Sheridan,
her body responded by attacking itself.

The areas that were the most affected were her mucous
membranes and her bones.

Her nasal passages closed off as a result of the mucous membranes being
irritated and raw.  The scarring caused her nose/airways to close up.

The same thing was happening in her stomach and bowels, though the
parents did not know this either.  Nor did the doctors discover this.

Every time Sheridan was fed it was like putting food onto an open wound.
That was why she cried so when she ate anything… it really did hurt!

Mother’s are so intuitive… they seem to know what’s wrong before
any doctor or test confirms what they already know in their hearts.

Listen to what you already know you know…
Even when others question!
With love and compassion,
~Susan Holsinger
Certified Grief Recovery Specialist; Good Grief and You

PS.  Please feel free to share your thoughts and leave your comments below for the Mother to read and respond to.  She wanted to share her story with the vision and hope that it might inspire and encourage you.  To let you know you are not alone and there is help available.  Sharing helps give grief a voice so our loved ones are not forgotten!

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