On February 22, 2013 Kaleb underwent his third surgery for his Chiari Malformation. An MRI showed that Kaleb’s brain went further into his spinal column and he needed a posterior fossa decompression. Kaleb’s surgery was a success, the only issue we had with him was Kaleb’s veins were still no good from his last 2 surgeries. They had to bring back the ultrasound equipment to look for deeper veins. In the end everything went great. Kaleb’s symptoms improved in about 3 to 4 weeks and he was back to his old self sleeping 12 hours and was just a wonderful baby.
On April 8th 2013 Kaleb received his second D.O.C. Band and his symptoms started to come back about 2 weeks after wearing his Band. Soon after we started to notice Kaleb’s head shape getting worse and as the days turned to weeks we slowly started to see his head shape returning to his Lambdoid Craniosynostosis shape. We decided to take his D.O.C. Band off per doctor’s orders and his symptoms started to improve. We decided as parents to do some research ourselves since things were not adding up and Kaleb’s head shape continued to get worse. We decided to fly out to Dallas Texas to see a Dr. Fearon who specializes in Craniosynostosis and we heard that he was the BEST doctor to see for Kaleb’s circumstances.
We arrived in Dallas on July 25, 2013 and Dr. Fearon confirmed what we as parents had an instinct feeling about Kaleb’s condition. Dr. Fearon told us that Kaleb’s skull was NOT properly corrected and was still growing as if he has Lambdoid Craniosynostosis. He told us that since his skull was never fixed correctly that could’ve contributed to making his Chiari Malformation worse. He feels that his Chiari could be contributing to his symptoms but his symptoms are also coming from inter-cranial pressure. We needed to have a sleep study test done on Kaleb to see if his Chiari was posing as an immediate danger to his life for it could make Kaleb stop breathing. Kaleb’s sleep study test came back good so he would not need brain surgery as of this time. But he would need another cranial vault reconstructive surgery to correct his skull the right way to allow for his brain to grow properly without any pressure being put on it. If it wasn’t for Dr. Fearon we would’ve never known this outcome for Kaleb and he would over time start to have so much pressure it would cause irreversible brain damage.
Proud Mommy of a Cranio, Chiari and VSD Baby!!!
"God only gave you this life because he knew you were strong enough to live it"
"People are like stained glass windows. They all sparkle and shine when the sun is out. It is when the darkness sets in that HEROES are revealed, as their mesmerizing courage shines through from the light within" - Elizabeth Kubler-Ross
LOVE for Dallas!!!!
Our niece Haley next to Kaleb's heart on the wall at school