Posted on August 18, 2017
Update on Rosie & more…
I’ve gotten used to little sleep over the years. Awake most nights on and off, praying, thinking, worrying or trying not to worry. Giving it to God since he’s up anyway, praying some more, often wondering how we are going to make it. College expenses are ahead of us next year. And of course the medical bills are always a steady reminder that life with NF, a chronic illness, reoccurring cancer/tumors, and hydrocephalus will never end. I’m always thinking about the next possible shunt malfunction and pray it’s years away.
We saw ophthalmology this week and Rosie’s vision seemed for the most part stable. There are always small changes to her color vision, depth perception and field of vision, which is to be expected with the optic nerve atrophy. They ordered another test and took pictures of the optic nerves in her eyes again. Her vision is stable, but the deterioration is apparent; she no longer wears glasses because they cannot help her see better anymore. Since it’s not a lens thing, it can’t be corrected. Her optic nerve is slowly dying off, and once it’s gone, it’s not coming back. No dramatic changes are a positive right now.
She is scheduled for another vision test and exam in 8 weeks, unless something changes sooner. Right around the same time she will have another MRI and see Dr. Jason, her neuro-oncologist, and Dr. DiPatri, her neurosurgeon. He keeps tabs on her shunt. Fingers crossed this year will go a bit smoother than last.
Rosie had neuro-psych testing over the summer and the results were good and bad. She is struggling with depression, which I see daily and it makes me sad. So we are going to try going back to talk therapy for a while. She also needs to start to heal the feelings of abandonment she has from the absence of her father. Her appointments will be with a special neuro-psychologist again this time, like when she was little; it was such a huge help to her. Having a special psychotherapist who understands brain tumor kids and the affects of chemo on the brain over a long period of time is key.
She is also struggling with her ADHD (non-hyper type) and is unable to focus, which really affects her reading. Her IQ is well above average, but she is still struggling to gain focus and understanding in many areas. She works way below her potential in a group or classroom setting, so she is going to go on a trial period of ADHD drugs to see if it might be helpful to her. They really want to get her ready for high school and figure this all out now instead of later.
I always say God will provide, and He continues to show-up every time I turn around. Let go and let God!! So many Angels out there on this earth, feeling so blessed!! Thank you to everyone who has been praying for us, who has blessed us with unceasing prayer, a donation, a gift card, a helping hand. It’s not easy being Mom, Dad, Caregiver, only source of income and everything else.
Thank you to all those who have made generous donations on the YouCaring site; thank you to Jokes4Miles and The BTB Foundation for setting it up. It’s been such a huge blessing, you have no idea; it means the world to us to have your support.Thank you for helping to provide for a roof over our heads. Thank you for helping us so we can in turn continue to do what we do and serve others through education, awareness and philanthropy, funding a cure for all pediatric cancers.
Feeling so very blessed!!!