A Day of Free Thought

Ashlynn is visiting family today and not by my choice. I am struggling to deal with this grief I have for her without seeing her beautiful face. I miss the chirp she makes after begging to cuddle and snuggling into my side.

Today My Questions Are

Will Ashlynn honestly be diagnosed with NF1?
Did my Bubba possibly have NF1?
After finding 2 more Café spots.. Will I suddenly find more?
How will the chemotherapy or radiation affect her?
Why is this happening to my little ray of sunshine?
Will Ashlynn be behind in school?

I feel as though I struggle to find answers to these questions. Reading a website or a pamphlet and then going back thru and rereading it. I want to scream and throw whatever I am reading because it is not giving me the answers that I want. At times in the day I can feel happiness and joy, but at other times I struggle not to break down, I over think the situation and stress myself out.
A mother's love is honestly the strongest emotion in the world, I believe this with all my heart. To consider the fact that my baby will have to go into a battle head on. Knowing she will come out painfully and slow. Is truly today's biggest struggle.

 

My goal to deal with today's thoughts...

A. Go for a late night walk.
B. Talk to my husband about it.
C. Call a family member and catch up on their life (in hopes to keep my mind off mine).

 

 

While I have a lot of fear in my heart and mind. I am also very optimistic. Ashlynn's tumor doesn't mean she has cancer. Ashlynn is a very happy girl and is otherwise extremely healthy. I am truly blessed to be this little girl's Momma. Her strength throughout the developmental delay, and our rough pregnancy shows that she really is capable of anything that is put in her way.

 

A few very good sites to get information on NF1 are...

http://www.genome.gov/14514225

http://www.childrenshospital.org/az/Site1085/mainpageS1085P0.html

 

 

The Beginning

Ashlynn Kay a beautiful, sunny, optimistic, bossy, stubborn, ray of sunshine, brunette, cute, short, adorable, baby doll faced, girl. The child who created the Mom I am today. What started as a fear in pregnancy is now a fear as a child. While pregnant I feared for her an the type of mother I would be. I worried about the world I was brining her into, and the future for both of us. After realizing that these things were all in my control, I have a greater fear...
Her Health

In December of 2012 just shy of Ashlynn's 2nd birthday we started noticing a slight turn in her left eye. In March of 2013 she was diagnosed with amblyopia which basically describes the slight turn. The ophthalmologist prescribed patching for 2 hours daily until July. After patching for a few weeks the family started noticing how large, swelled up, and red Ashlynn's eye was getting on occasion. At times her eye would turn and stay "stuck" in the bottom lower corner of her eye. She would complain of pain and rub her eye for long periods of time. At times her eye would look so large that it appeared to not fit in her head.

In June of 2013 I took her back to the ophthalmologist who found what she then called a mass behind her eye. We were sent to a nearby children's hospital for a sedated MRI and CT scan.

Today we know

A. Ashlynn has 2 tumors, one on her optic nerve and one on her brain.
The tumor on her brain shows no signs of growth or danger. The tumor on her optic nerve shows signs of swelling, possible brain damage and blindness.
B. The tumor will be removed via chemotherapy or radiation.
C. Ashlynn is blind in her left eye.
D. Ashlynn was originally 6 months delayed at 1 year in age. She is now only 3 months delayed at the age of 31 months.
E. Ashlynn has 4 café au lait spots. One on her collar bone, one on her left hand side, one on her lower back, and one on the shoulder.
F. We will be going to the University of Michigan for genetics testing and Michigan State University for a Neuro-ophthalmologist.
G. Possible diagnosis is Neurofibromatosis Type 1. She has 4 of the most common symptoms at this time.



“Do not be afraid, for I am with you. Do not gaze about, for I am your God. I will fortify you. I will really help you. I will really keep fast hold of you with my right hand of righteousness.” (Isaiah 41:10)