Our strong little fighter, Alani!

Alani slept wrong back in July around the middle of the month and her top vertebrae slipped off of each other. Well, we thought she just slept wrong and had a stiff neck.. by August she still was having pain so I took her to her primary dr on Aug 5 and she said to try stretching it at home. Didn’t help so I took her back and by September an X-ray was ordered and came back normal. She was diagnosed with torticollis so we started physical therapy. We did physical therapy for 3-4 months and then in Feb her PT said it should be improved by now and ordered a MRI. We went for the MRI Feb 28th. We found out she had two dislocated vertebrae. We were admitted to the hospital and she was now diagnosed with Grisel Syndrome. They did surgery on March 2nd but it was unsuccessful and they weren’t able to realign the vertebrae. Since they were like that for so long the vertebrae fused together in the wrong position. They closed her back up and transferred us to Phoenix Children’s Hospital. The Neurosurgeon there suggested wearing the neck brace for 2 weeks and we went home March 6th. On March 12th we went for a post surgery follow up with the first neurosurgeon and they did another CT which showed that it looked the exact same. March 15th, they called and said Alani would be admitted March 21 to have what they call a Cervical Traction. She’ll have 6 pins placed in her head along with a halo for head support. They’ll gradually add weight to help hopefully place enough pressure to realign the vertebrae. She’ll be heavily medicated and shouldn’t feel anything.. they told us to be prepared for a week stay but could correct in as soon as 3 days.. today is day 8 of our second hospital stay and a repeat CT was done and shown no improvement. Tomorrow we will be transported to Primary Children’s in Utah. She will need a second surgery. They will have to now go in and drill away pieces of her vertabrae to get her unlocked and aligned. She will then undergo a C1-C2 fusion to make sure this doesn’t reoccur. It’ll be a lot of follow up appointments and PT after the surgery is finished. 

Living away from home and missing work has hit us hard financially. With the sudden travel so far away we need help being there for our daughter. We are a very family oriented and never spend time away from each other. We’re doing the best we can but this was really unexpected. Thank you for taking the time to read our story. Please keep our beautiful princess in your prayers ❤️