Thankfully Angry

Does that even make sense?  Thankfully angry?  This mix of emotions has me confused too...But it's the best way I can describe how I feel.

I am THANKFUL that we aren't dealing with worse...Even though what we have, is pretty bad.  I know that things-could-always-be-worse.

But I am angry that we are dealing with a monster that has no weak spot.  No vulnerabilities.  I am tired of hearing "Nothing can be done"....I am tired of continually feeling helpless.

Our appointment obviously didn't go well.  New Xrays of Bailey's back showed worsening of the degenerative disk disease and also showed many stress fractures.  We were asked over and over, if Bailey has had any trauma to her back...Which she hasn't....So this makes ANY explanation impossible.

In 2 weeks, Bailey will have a MRI of her back, to hopefully get a better look....

This Thanksgiving we have so much to be THANKFUL for....It's these things that we will focus on as we wait for answers....and maybe some treatment.

THRIVE ON!

More PT....More PAIN!

We were told 5 weeks ago, when we started PT, that there was nothing the therapist could do, to help Bailey.  And she was right.  So not only do we have to meet with the Neurosurgeon, to address a growing Acoustic Neuroma....We now have to go back to Orthopedics to see what...if anything can be done for Bailey's back issues.  Click HERE if you would like to read more about these issues.

We tried.  We gave PT a fair shot...

Still Thriving 

It Starts....Physical Therapy

We went into Bailey's physical therapy appointment excited.  Hopeful even.  But as Bailey's history unrolled itself in the chart....Those good feelings quickly deflated.  

Do you know what's worse than a doctor telling you that 

"there's nothing that can be done to help your child?"

NOTHING.

Nothing is worse than hearing that.

Bailey has Neurofibromatosis.  2 inoperable brain tumors. 

A year and a half on chemo...AND Degenerative Disk Disease.

While SOME people with DDD benefit....even IMPROVE with intensive physical therapy, this is not the case for our 16 yr old daughter.  It seems Bailey has a more complicated case of DDD, than first thought....And our therapist tells us that no amount of PT will help Bailey.

But...There ARE some good things that came out of yesterdays appointment.  Bailey has a couple rotated disks, that CAN be improved with PT...And the therapist offered "as much PT as Bailey can handle" to help increase core strength-Which MAY help with the pain Bailey experiences.

So...while it sucks that nothing (right now) can be done for the DDD...We ARE hopeful for the potential answers that may come in the next few months.  We don't give up, and we continue to THRIVE.  

Even when  things don't go entirely our way.

Seriously?!

THRIVING WITH DEGENERATIVE DISK DISEASE

We were asked several times if Bailey had been in some kind of accident....Has she experienced any trauma to her back....If there could be ANY explanation for the condition the imaging showed.  There MUST be SOME explanation....Right?!  One would hope....

The doctor explained to me, that the imaging showed a severe form of 'degenerative disk disease'...and that if he had never met my 16 yr old daughter....He would have thought he was looking at an image of a 70+ yr old woman.  *nice--eh?  I think I've heard this from another Dr-->  Blog about the findings in MY MRI

So what is DDD?

The first thing I read, when I began researching this was that as a person ages, their body obviously begins to break down.   Spinal discs are soft discs that separate the interlocking bones (vertebrae) that make up the spine. The discs act as shock absorbers for the spine, allowing it to flex, bend, and twist. Degenerative disc disease can take place throughout the spine, but it most often occurs in the discs in the lower back (lumbar region) and the neck (cervical region).  Bailey's pain is in her lower back.

Web MD lists the following as to WHY DDD occurs-

Loss of fluid in your discs. This reduces the ability of the discs to act as shock absorbers and makes them less flexible. Loss of fluid also makes the disc thinner and narrows the distance between the vertebrae.

Tiny tears or cracks in the outer layer (annulus or capsule) of the disc. The jellylike material inside the disc (nucleus) may be forced out through the tears or cracks in the capsule, which causes the disc to bulge, break open (rupture), or break into fragments.

OK...REALLY.....I want an ENGLISH reason for WHY my 16 yr old daughter has a "Severe" case of DDD....

As I searched more....

Those with DDD, are typically very active, sport playing individuals who are older and have lived a full life of 'doing stuff'.  This does NOT describe Bailey at all.

This promted Bailey's doctor told us that Bailey's case is very rare.  *wow - if only I had a dollar every time we have heard the word "rare", when telling us about a new diagnosis.*

Sometimes-- there isn't a "WHY".  Sometimes, things just are what they are.

So what do we do?  

We Thrive Anyway.  And continue to spread a message of hope.  We don't let another diagnosis stop us from living.