We have known Ian had neurofibromatosis since birth, as it runs in the family. In Ian’s case, it has affected him through developmental delay in speech and sleeping problems.
In June 2013, he had drastically regressed in motor skills, balance, cognitive reasoning, chewing, swallowing and speech. An MRI on June 17th showed large optic gliomas along the whole optic pathway, which is related to his neurofibromatosis. In addition, he has tumors (astrocytomas) on his mid-brain and brian stem.
Since starting chemo and anti-nausea meeds (for his silent seizures), he is gaining back the milestones he had lost. Praise God!
However, his vision has been affected by the gliomas. It’s been a long road as two doctors since September 2012 told us his vision was fine. He currently has lost about 80% of his vision. He’s seeing through “peep holes” with no peripheral or upper/lower vision. We are teaching him cane travel, Braille letters and other ways to cope with his visual impairment. Another complication from the optic glioma is the how close in proximity it is to the pituitary gland. This has caused a hormonal disruption that’s sent him into puberty at age 4. Ian now has a hormone implant just under his skin to stop any further puberty progression.
We are traveling every other week to Omaha or Kearney for chemo. We also are seeing several specialists in St. Louis about every three months. We’ve been so blessed with support! Our community raised money for an AWD SUV that was purchased in November, which was a huge blessing for all the winter driving we had to do.
Life has become very busy with being gone so much. When we are home, Ian has physical therapy, occupational therapy and speech several times a week. Since vision resources are limited for his age in our area, we are also homeschooling Ian for preschool.
We are learning what we need to so we can train him to function as a visually impaired child. All of this leaves me (Melissa) little time to give to my custom quilt business. As a result, keeping up on bills has become a challenge and our greatest need.
Jason’s job has been wonderful with schedule and leave of absence. He is able to travel most weeks to chemo on his off days.
We are hanging on to faith, friends and family.
Any help you could give would be greatly appreciated!