Mommy's point of view from Chronically Ill Child...

So, I wanted to update a little bit.   Yesterday was a visit to Shriner's Hospital for the Body cast that they are making for her. 
Yes, we went with the hard cast for now to see how it does.  We still may go with the Spine Cor brace.  I'd rather have Alexis in that so she is more movable and comfortable!  And I don't want her muscles to Atrophy!  And being in a hard brace is difficult to move the way you normally do.  
I am sure this summer will be NO FUN being in a HARD Plastic brace!

So, yesterday was quite the event.  Alexis ended up vomiting.  We were at my Good Friend's house.  And so happy to see her.  Then Alexis started getting sick :(
Now, if this was just a normal kid, no worries.  But since Alexis just had surgery on her brain, and they cut open the Dura....that is another story!

We put in a call to the Neuro.  And about an hour or 2 later, they said, it should be ok.  But they have some things they can do to help her.


I chose to wait since she seemed to be ok.   Shortly after that call.  Alexis was back vomiting again.  
I got ahold of some of the mom's who were able to guide me and tell me their thoughts!  
So, I made the decision to bring her into the Sacred Heart Children's ER. 

We got there and there must have been 20-30 people ahead of us.  I thought, Oh great!  This will be a long time to wait.  
But they had me sign a sheet stating the nature of the visit.   And then another form.  As I was filling out the 2nd form, they read the 1st and that quick, they said, we need to get this little girl back right now. 


I could hear them talking in the back ground and mentioning a shunt!  I Was a little scared.  


I was the only one there with Alexis.  Yet I had to keep my cool for her!  


They said they wanted to do a CT (cat scan) of her head.  To make sure there was no blood on her brain!


Now, Alexis was terrified of the MRI.  And we had to put her to sleep for that.  She was so scared to do the CT!
But she did great.  It was fast.  


No blood on the brain!  WHEW!!!!!!   They think that the bump on the head was the cause of all this.  But who knows. 


She stayed home today.  And as she was doing her math fractions, she was grabbing her head.  She said, Mommy my head is hurting!


OH MY!!!!!!!!   
What else....there is no manual out there on how to help your child who is chronically sick!   I don't know what to do and how to help her.
And I sure as heck don't want to ask just anyone for help!  Meaning the Dr.'s here.  They don't know about this disease.  And they don't know how to help. 

There is No Neuro in Pullman....and it is a drive up to Spokane for the help!


I AM EXHAUSTED!  Being a mommy is a lot of work.   And I've been doing my best to give Alexis the ABSOLUTE BEST CARE!
When it comes to the brain, and spine, I don't take chances.   I KNOW kids are fast healers and resilient.  But my Kid isn't just any kid.   Trust me, I've been researching this info trying to do the right thing.
It's Not as simple as ya'll might think.  So please, bear with me.  I'm doing my best.  :)


I think I hit my breaking point last night.  I am totally and completely worn out.  I wish I had several friends who live out of town closer to me ~!
Mommy's need support, too!