Haven's ROHHAD Update 2-12

Today was a long day. We headed down to Baltimore for our first visit with the Orthopedic Surgeon that will be watching Haven's bones as she starts to grow. We've also had many severe back pains that seriously just paralyze Haven and she falls to the floor in a ball grunting.

If you remember I took her in on Dec. 5th for a CT Scan of her back to check for fractures. We were clear on that. Then a few weeks later it happened again when she was playing.

I took some photos of her xrays today from the computer screen. Sorry they are from my phone so they are not too clear. But I did detail them so you can see what is what.

This is an xray of the front view - sorry I didn't get pictures of the side view. Haven really wanted them too. This xray shows you the Port, tumor on her back, curve in the spine, and original location of the neuroblastoma tumor. You can really see how big the tumor on her back is from this xray.

A normal spine of a child at her age is 45 degree angle. Haven is currently at a 51 degree angle.

I realized that most people probably don't know what I mean about a port. She has a port in her chest which is essentially like a little rubber stopper. It is sewn in under her chest with about a 3 inch scar.

To access Haven's port they use a 1 inch needle each time that goes in to her chest at the port. Then there are little butterfly wings that clamp the needle down on to the chest to stay in for the day for medicine and IV fluid. The port has a line it in that goes through her artery up in her to her neck. She has a small incision in her neck to pull the line through. You can feel the line but you can't see it.

From today's meeting we now know the status of Haven's spine. We also learned that her bones are very brittle and as of now still a bit spongy. They are starting to squish together as the discs between vertebrate get smaller. This is causing her the pain. He did not see any fractures but with the shape of her spine and the weight he said she could easily have a fracture at any time.

He mentioned the possibility of Haven having Brittle Bone Disease due to the long term use of chemotherapy, high levels of steroids for over a year, and now more chemotherapy. She has not been allowed to have any vitamins for over a year and we removed milk from her diet due to high sodium levels. She has been drinking milk for over a month now.

Tuesday, February 17th, Haven will have a bone density scan to check her for Osteoporosis. Her Endocrinologist will handle it from that point unless surgery is needed.

Wednesday, February 18th, Haven will see Dr. Price (original surgeon that removed most of her Neuroblastoma Tumor) in regards to the tumor on her back. He will examine her and discuss surgery to remove it. 90% of the time these tumors are not cancerous (we're told) but they will remove it and have it tested.

We have another sleep study planned for this weekend in Mt. Washington Pediatric Hospital. This will be Haven's 3rd study. They will be videoing her the entire night this time.

Ultrasound is February 24th

Eye Surgery is March 26 - along with Blood Gas testing

As everything unfolds or we get more news I will keep everyone updated.

We hope all of you have a great Valentine's weekend. Haven has received many Valentine cards from around the world. Thank you to MACS site for all your help with all our children.