Welcome Friends!
Susanna H.
Ohio
Birth Date - November 30, 2005
Main Diagnosis - NeuroFibromatosis Type 1
THEME: Mary's Moos
Biography
Susanna is our sixth of eight children. She was born Nov. 30, 2005. She started developing cafe au lait spots when she was just a couple of months old. When she was 4 months old, she had her first visit to the NeuroFibromatosis Clinic at Cincinnati Children's Hospital. At that time we learned that she most likely had NF. She received her actual diagnosis on Feb. 16, 2007, once she'd developed a secondary sign. On July 5, 2007 she had an MRI for suspected tumors. It showed two tumors. The smaller one was on the optic nerve to her right eye. (God fully healed that one 3 years later!) The larger one is a plexiform neurofibroma. It extended from under her tongue up through her whole right cheek from below her right eye to her ear. It is woven through the blood vessels, nerves, and flesh. She had a second MRI in October, 2007. It showed that the large plexi was now pushing against her ear canal and limiting her hearing and also growing into her neck. It also showed that
she had developed at least two new plexiform neurofibromas in her neck, also on the right side. In November, 2007 her nephrologist confirmed that she developed hypertension and started her on medicine for it. God healed that after a year of her needing to be on medication for it. She had a facial CTScan in December, 2007. It showed that the large plexi in her face is rearranging her jawbone, but has not entered into it. It also showed that the tumor has further compressed her ear canal, thus further limiting hearing on that side. It was about this same time that she experienced horrendous TMJ pain where she needed strong narcotics for them. Praise God, He took that pain from her after months of enduring it. She also ended up needing a tonsilectomy as the tumor was shoving her right tonsil so far into her throat that it was making it extremely difficult to swallow any solid foods. The surgery really helped.
Since then, she has had a lot more MRI's. The big plexiform neurofibroma has not been changing much and recently not at all. Even better, as her head has grown, it is no longer affecting her hearing. The two little ones are unchanged since we first discovered them. Her MRI in October of 2011 showed a new tumor. This one is located on her brain stem. It is called a low grade tectal plate glioma. Her MRI in August of 2012 showed that the tumor on her brain stem had grown, but that there was reduced blood flow to it. Her April MRI showed that the tectal plate glioma had not grown any, but that same visit found two new tumors. These are bone tumors and she has one above each knee in her femurs. They cause her intermittent pain. Thank you to everyone praying for her.
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Squares donated by "Operation Teddy Bear"
"THANK YOU"
Susanna absolutely LOVES her new quilt. Thank you so very much for it!!!!!!!!!!!!!!! And I love how it is washable so she can really use it without me worrying she's messing it up. Lord bless you!
