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| Matt, Ben and Henry Haag - With Cousin Cody Banc. |
Kristen ran the Basalt half marathon in july and raised money for the Children's Tumor Foundation in Henry's behalf.
After six months of trips back and forth to denver and re-casting his leg, we were told that the graft was rejected and his surgery was unsuccessful.
Henry's surgical procedure ( Pseudo Othrosis ) took place at Children's Hospital in Denver. The surgery consisted of cutting the right fibula in half and adding a cadaver graft as well as inserting a titanium rod in the fibula itself. The casting was scheduled for a six months.
The MRI in May showed us a few things. Henry had an optic glioma on his left optical nerve. This is a tumor that can cause blindness. It also revealed that his growth plate on his right fibula had stopped growing. This was the main reason for him not being able to walk and we told that we needed to do surgery to correct this bone deformity. Bone deformity's are very common with kids that have NF.
Right before Henry's second birthday he still could not walk on his own. We made an appointment with our pediatrician and during the examination we were made aware of some small spots on his stomach and back. They are called cafe au lait spots. The doctor told us that these spots were typical with children that have Neurofibromatosis (NF). We made an appointment at St. Mary's hospital in Grand Junction for an MRI. The MRI confirmed that Henry indeed had NF.
Henry was an easy delivery but we had to stay in the Hospital for a few days after birth. He had some breathing problems, but nothing serious. We were excited to get him home.
We were ready. Grandparents were on alert. We painted the room baby blue...it was go time if you cant tell.
