Port Surgery and First day of Chemo

Blessings Come Through Raindrops

Today was harder than yesterday.  I think the reality was hard to avoid, when we actually got into our room, and had the IV fluids hooked up.

Bailey has done amazing with this whole process, and I am filled with so much pride.

On the way to the hospital this morning, we heard this amazing song by Laura Story called Blessings....

I am guilty of praising God during the good times, and when things are going along smoothly....But when things go wrong, and I struggle, I get angry.  I have asked God, why He just won't take the pain away.  Why does my daughter have to endure the complications of Neurofibromatosis?  Is He even listening to me, when I am on my knees, crying out to Him?

But what I am learning, especially while going through this, is that God blesses you, even through your tears.  I have seen so much good come from this scary time.  The love and support that our friends and family have shown is has been amazing!

Remember, the rains of life, will eventually bring flowers.

Chemo Port Surgery

Bailey's port surgery is over, and we are ready to begin the 52 week journey of chemotherapy.

The waiting before the surgery was the worst part...but the surgery itself took just under an hour.

Bailey chose strawberry scented anesthesia to go to sleep with, but woke up feeling nauseous and had a headache.

She is such a strong girl and I couldn't be more proud of her!  She even let me take pictures and video of today...to post  so that other families can see what this is like.

We go home today, and come back tomorrow morning and have the first chemo treatment.

Thanks so much for all the prayers and well wishes!  Our family truly appreciates it.

Sensory Integration Disorder and Neurofibromatosis

Sometimes I just feel like my life is just a process of rearranging furniture, in a house that's too small.  Nothing ever feels right, and I am constantly tripping over things that just don't fit right.

Anyone who has a child with Sensory Processing (Integration) Disorder knows that there are good days, and bad days...REALLY bad days.

I want so much to connect with my daughter, who is taking in the world at lightening speed.  Does she know I love her?  Or am I just another annoying noise to her?

When Rachel was a baby, I was told by doctors, she had colic.  When the remedies for this, didn't seem to be working, I was told that it was my breast milk, and that I needed to stop nursing.  Nothing seemed to fit, nothing was "fixing" the problems.

As Rachel grew, the SPD grew as well.  We didn't know it back then, even if we did, I'm not sure what we would have done differently.

Rachel is now 8 and finally got the diagnosis of Sensory Integration Disorder after being seen by an Occupational Therapist and  participating in many MANY tests, and filling out many MANY surveys.

But like with Neurofibromatosis....There were no clear answers.....No easy fix for this diagnosis.

I feel so helpless most of the time, because we never know what will set Rachel off.  Is the TV too loud?  Is someone sitting too close?  Breathing too loud?  Are the tags in her shirt bothering her?  Shoes too light?  Or like this morning....Did the egg yolk pop and run into the white parts?

These things often throw Rachel into "melt-down" mode...where reasoning is NOT an option.  I find it hard to not respond to this in a negative way, but ignoring it doesn't seem to do anything either.  Where is the balance with children who have this?

I have no answers....I am learning as I go.  Just like with Neurofibromatosis...I am left in a world of unpredictability, uncertainty and fear.  Fear that my child will choose to hurt herself, while she is in a fit of overwhelming rage....and that nothing I can do going to help her.

Is there something else going on with her?  Something more I can do?

She is receiving extra help at school from occupational therapists, the school psychologist, and her teachers....ALL who report Rachel is an "Angel" at school (with of course the difficulties in learning and large motor  skills) Who participates and is always willing to do what is asked of her.

Rachel also sees a therapist, who is also reporting Rachel as being "sweet and easy going".....Man if these people only could see, the switch that happens.  It's fast and furious and often comes without warning.

I have tried to video this explosive change...but this only gets Rachel more upset.

So we continue the dance around the egg shells.  We tell her how much we love her....and try hard to make things as easy as possible for her.



The Following are Signs of Sensory Integration Disorder

•        Over sensitivity to touch, movement, sights, or sounds

•        Under reactivity to touch, movement, sights, or sounds

•        Specific learning difficulties /delays in academic achievement  

•        Difficulty in making transitions from one situation to another

•        Tendency to be easily distracted / Limited attention control

•        Activity level that is unusually high or unusually low

•        Social and/or emotional problems

•        Difficulty learning new movements

•        Delays in speech, language, or motor skills

•         Physical clumsiness or apparent carelessness

•        Impulsive, lacking in self-control      

•        Inability to unwind or calm self

•        Poor self concept / body awareness

Get Ready...Get Set...Go!

Bailey put a countdown to chemotherapy on her blog, which I found both cute and sad.  She has shown so much strength during this and I am so proud of her.

She keeps saying how she is happy just to be doing something.  I know how she feels.  My own problems caused by Neurofibromatosis, have gone untreated my entire life.  WATCH-WAIT-WATCH-WAIT

Doctors under-educated, or simply not wanting to take the risk in my complicated issues.  Doing something feels good....it feels like we aren't helpless and just waiting for something worse to happen.

Even though Chemotherapy is scary and unpredictable...It does not compare to the fear and unpredictability of NF.

We have such wonderful support from family and friends...and I am so grateful to all of you!  Please follow Bailey's journey, as she blogs about NF, from a child's view.

BAILEY'S BLOG