Building a team

The neurosurgeon is working on collaborating with the most experienced team from around the nation to handle each aspect of Haley's one-of-a-kind condition. So far we have possibles of a doctor in Iowa and Pittsburgh. We are still not sure of the total number of doctors needed to perform the surgery, but the O.R. will be crowded for sure. Haley's doctor has set aside Saturday the 29th to make contacts and do more research and we should hear some type of update on Monday. Our intention is to eliminate the possibility of the halo, but the hardware is not available for someone as small as Haley. I will let everyone know as soon as we hear something.

The Cassidy's

We are home

Well, it is 9:20pm and we just walked in the door. Haley loves her collar...NOT! She actually wore it all the way home and still has it on. Based on the doctor's recommendation she will have in home teaching this year. Her neck is too delicate and the bone is causing too much pressure on her brain stem to be in any situation where she could fall or have her wheelchair jerked suddenly. As soon as we hear anything from the doctors, we will post it here.

Love,

The Cassidy's

New Hope

OK, OK, I can't continue to see the title of the last post. No new information medically, but definitely have our focus on positive things. Her case is being studied heavily which should give us greater confidence that all bases will be covered before surgery. Thank you to everyone for all of the support. God will bring Haley through this, but first He wants us to take our eyes off of doctors and techniques and then He will remind us that He has never lost control of the situation.

Bad news

I try to be the eternal optimist...bad news. Something the neurosurgeon has never faced. He has heard of it, but never in kids. I have not googled anything yet. I am literally posting what I heard and about to research before he stops in again in the morning. The posterior longitudinal ligament has thickened due to over-extension and begun to calcify. This is a progressive problem that was not on previous scans. She will be discharged with a collar pending surgery in a week or two. The calcification can strangle the brain stem or the arteries that supply blood to the brain. He needs to confer with orthopedic surgeons to gather more opinion and case studies to better plan and prepare for a surgery. This would involve posterior fusion of the skull and spine through the typical opening for the decompression. The other portion of the procedure is anterior fusion. This is the big one. Transoral odontoidectomy is where they have to go through the mouth to reach the front portion of the spine to fuse. After this procedure Haley would have to be in a halo for at least 3 months to ensure the fusion holds. Completely overwhelmed...done typing.

Still Waiting

Hola todos,

We are still waiting for the doc to get out of surgery to come and talk to us. Haley is on the schedule for 11:00AM which allows us time tomorrow to discuss things as well. It is 8:15PM and we are told he will still be by tonight. I know everyone is anxiously waiting for me to post an update and I would love to have some new information. Oh wait...I do...today was Philly Cheesesteak day! Haley is excited to have Michelle and Tiffany down here. You would never know by her attitude that tomorrow is surgery day.
She is singing and dancing and playing with her sister. I am extremely happy to have my family together. I have missed Tiffany a ton and she can't stop talking about school. I guess I will wait until we get some feedback before my next post.

Out of testing

Haley woke up very quickly after testing which is wonderful. Michelle and I can't help but be a little stressed after past experiences. We will not be able to coordinate all of the doctors until tomorrow morning to discuss the plans for surgery. As information becomes available to me, I will share on the blog. It amazes me to watch Haley interact with all of the doctors, nurses, and techs. People stop by from other pods just to meet her. She has so much going on in her scans, but we see the poise and grace that she shows. I wish I had an ounce of her courage and optimism...truly amazing. Talk to you soon.

Surgery Wednesday

Haley is still in testing and the Dr. already came to talk to us about scheduling surgery for Wednesday. She has considerable scar tissue which is cutting off the flow of CSF (cerebral spinal fluid) and needs decompression like last year. In addition, they found a piece of bone that is poking her brain stem and needs to be removed. If the bone is removed, it could cause instability and require fusion of her skull base to her cervical spine. Yes, this would cause her mobility to be limited and we are certainly not in favor of that unless it is completely necessary. A lot of things for us to ponder and pray about and her testing isn't even over. Please pray for wisdom that we make the proper choices for her care. I will post more information when the testing is complete.

In testing now...

Good morning,

Haley went in for her testing at about 8:00AM and should be out in about 4 hours. This is just the time of waiting so please pray that it goes quick. I will post as soon as she wakes up.

Pete

Night before big tests

It is nearly 9:00PM Sunday and Haley will not be allowed to eat or drink after midnight. This is when it becomes very real. We are praying that the tests do not show a need for surgery and she can get back to school quickly. I have tried to keep Haley and I busy by cruising around the hospital. We took a trip outside today to look at the fountains and the train. She was so excited to get some fresh air. I had another motive...to wear her out pushing her wheelchair so she will sleep good tonight. I was very impressed to see her climb all of the ramps we encountered without my help. By the way, the Starbucks in the Med. Center is closed on Sunday! No mocha for you Mr. Cassidy!!! A couple of hours ago I got a disturbing call from Michelle. When we received our tax return, I bought us tickets to The Color Purple on Broadway...it was tonight...we weren't there...last performance. It was my special gift to Michelle for our anniversary and we were both very excited about a great night for the two of us. Michelle was crushed that we will not get to experience the show. Obviously we have some very stressful things weighing over us, but could have definitely used the escape since Haley has just been waiting all weekend. I am going to try to get plenty of sleep tonight so I will be wrapping it up here. Please continue to pray and we hope to see everyone soon.

Love,

The Cassidy's

The 2009 Adventure

Hello everyone. Haley had been complaining of headaches and on Thursday August 20th she grabbed the back of her neck with both hands and cried, "it hurts mommy...it hurts!" with tears streaming down her face. I called the neurosurgeon and got a return call in three minutes telling us to take her to the ER at Hermann in the medical center. The plans for a Friday MRI fell through, but have confirmed for Monday a round of testing matching that of last year. She will receive an MRI, EEG, and SSEP to give the doctors a better picture of what might be wrong. As always, we have taken every facet of this endeavor and given it over to God. If the Bible was wrong about worry I would be 17 feet tall. With my basketball career well out of reach, I am thankful for the peace God gives our family through these trials. He has also greatly blessed us with wonderful family, friends, and a lovingly involved prayer centered church. As I sit here 8 minutes into Saturday, I am watching Haley sleep with a tiny grin on her face and thinking of Michelle and Tiffany. We have always tried to make sure Tiffany does not have to make compromises that would lead her to blame Haley. Michelle took Tiffany to meet her teacher Friday night and will get up early Saturday to start fixing her hair for cheer leading pictures. We were initially a bit disappointed about the delay in testing, but now realize God had a better plan...surprise! (He always does.) Michelle would not have had the peace to spend quality time with Tiffany if the testing took place on Friday. I am very grateful that I don't always get what I think is best. Well, I suppose I will try to get some sleep. (Where was all of this energy when I was driving over 3,000 miles earlier this month? lol) I will post again when some new info comes available.

Love to all,

The Cassidy's