Halo Cruiser

Hello,

I thought I would put the link to Haley's video on here to make it easier for people to find. http://www.youtube.com/watch?v=btAMyJHymCs http://www.youtube.com/watch?v=btAMyJHymCs This was filmed 2 days after surgery...what an amazing recovery!

Home sweet home!

Haley slept in her own bed last night...and so did we. I felt like Dorothy as I put my head on the pillow. "There's no place like home, there's no place like home." Haley is actually crawling today and doing quite well with her newly acquired apparatus. We have some amazing friends and family and we would not be where we are without your encouragement. Thank you and we hope to see everyone soon.

Step in the right direction

Haley had her drain removed from her incision site at 6:00 this morning. The dressing on her hip where the bone was harvested from looks good. These are positive things that still point to us leaving today. I will update again soon.

Going home Tuesday

The docs just came in and confirmed we are going home tomorrow!!! Ummm...is there anything else to say? That says it all, thank God. We will let everyone know what time when we find out.

Still a ham

Haley is truly showing how well she is recovering. Amy, Dr. Baumgartner's PA, came in this morning to remove the dressing from her surgery site. Haley was mocking every word Amy said in a sarcastic voice and then laughing. She just can't help being funny. Everytime we scoot a chair she says, "who tooted?...daddy...mommy...was that you?" It's funny how the focus of our concern is also our comic relief. I was working on sign language with her yesterday and she said, "Daddy, when is Ms. Kelly coming?" I think she is ready to get back to her regular schedule. When Tiffany brought the purse she made, there was a toy cell phone in it. Haley picked it up and said, "hello...hi Dionne, I'm good how are you?...OK, love you too bye." So her imagination, attitude, and humor have all returned. I will post again when we hear more from the doctors.

Tiffany's visit

Grandma and Pawpaw brought Tiffany down to visit and we had a pretty tough time getting her back in the car to go home. It is hard for a 7-year old to comprehend why she cannot stay with mom, dad and sister. My mom found out she is a natural at sewing. She had assistance on making a purse for herself, then made one on her own for Haley. Tiffany was so excited to come to the hospital and surprise her sister with a gift she had made. It was great to have the family together, but Tiffany was a wreck when she left here. Grandma called to let me know they made it home and she was OK, but it still breaks my heart to see her upset. Please pray that time goes quickly and school keeps her days busy. Grandparents spoiling her is a given...LOL. We haven't heard any speculation from the doctors. (Weekends are not their strongsuit) We are guessing that if the course continues, we will be home before the end of the week. I will leave you with this: Burger, fries and drink for 2....$13.00, Parking per day...$15.00....No car fires...PRICELESS!

Wheeling

Haley decided it was time to get in her wheelchair and cruise the hallways. We are still in awe at the speedy recovery. She pushed herself into the play room where a bunch of kids were playing. As she scooted up to the craft table, she saw a young boy with a soft collar on. She said, "what happened to you?" He just stared back and said nothing. I can imagine by his expression he was thinking...no, what happened to YOU? Haley is incredibly tough and I believe she truly understands that her halo is there to help her get better. Thank you again for all of the prayers and encouragement.

Moving time!!!

Howdy,

It is 6:00PM Saturday and we are moving out of ICU to a regular room on the 10th floor. We are in room 1014 and thankful for the quick recovery thus far. Haley is eating and drinking like nothing ever happened. Demanding her specific shows on T.V. seems to be something Haley has not lost her touch on. We are so excited to see the progress and hope that this will prove to be "overpacking" based on our expectations. If we were getting on a plane with what we brought, there would be a $1,000 surcharge for luggage. I bet God is chuckling at our lack of faith and excess of clothes. I choose to say it was the Boy Scout motto...be prepared! Please share a blog response as it is a great time for us in the evening to read them all. Thank you so much for all of the support and prayers and I will post when we get another update on her status.

About to rest

Well, what an amazing day! If anyone has ever had a completely necessary day that you completely dreaded...this was ours. Haley was so happy as she was led back to the O.R. and we were left standing with the one last doubt if we were doing the right thing. At that point, there was no turning back. All of the research, discussion, and prayer for the last month is played back in our minds in seconds. The mood in the waiting room ebbed and flowed from tears to silence to laughter. We are so thankful for everyone who shared in this experience with us. The phone calls were too numerous to count and much needed reassurance. Those who came down to the hospital showed up at perfect times. The wait at first seemed as though it would never end, but suddenly we found ourselves being called back to see Haley in recovery. Michelle was walking swiftly and I found myself lagging behind. I began to question myself...would I be overwhelmed by what I saw? Would I be strong enough to show Haley everything would be alright? We entered recovery and turned the corner only to prove Michelle right...all I saw was Haley's beautiful face. What a great woman I have in my life! Haley said, "I want juice." As we were pouring juice for her, she grunted a couple of times. I thought perhaps she was in pain and asked what was the matter. She said, "I stuck daddy, I stuck." I didn't realize that she was trying to lift her head and the halo had her completely immobilized. She has been a bit groggy most of the evening and we won't know the extent of her feelings for the halo until at least tomorrow. It is after midnight and I am totally spent. I wil be posting tomorrow with any further updates.

Thank you to everyone,

Love The Cassidy's

Surgery is done

The surgeons are done and everything has gone as they expected. We are still waiting to go back and see her. Dr. Marco said they are putting the last few stitches in to close. They needed to use a bone building protein due to the small amount of bone they had to work with at the base of her skull. We are very anxious for her to wake up. Please continue to pray that she tolerates the removal of the breathing tube. Michelle and I have already reserved a room at the Ronald McDonald House on the 7th floor. I will fully update when we settle in upstairs.

Haley was just wheeled back

Hello everyone,

Haley was finally taken back to the O.R. at about 10:45am and surgery will begin in about an hour. She was in good spirits and smiling all the way...typical Haley! Not much to report, but much to be praying for and I will post as soon as I receive an update.

Haley's dream

Hello,

Thursday morning Haley woke up and I asked her if she slept good...she said yes. I asked her if she had good dreams and her eyes lit up. She said, "I dreamed about God." This is what she told me. "I saw God and He was in the light. He gave me a hug. He kissed me on the cheek and I kissed Him on the cheek. He said I am the Lord."

Haley has never shared a more vivid dream since the time she told me she was playing basketball and running. It truly is awesome to be in her presence. I just had to share this with everyone.

Pete

Surgery date

Hello,

We have been told that 100% Haley's surgery will be on October 2. Wouldn't you know that the doctors would schedule it to where she would probably still be in the 9th...her birthday. Please be praying for her as we approach the day. Michelle is laying down right now with a massive headache. As she put it, "it all just became real when we got the date." We value your prayers and will let you know any details as they come available.

The Cassidy's

Surgery plans...no date yet

Well, we spoke with the neurosurgeon and the orthopedic surgeon and everyone is on the same page with the plan for surgery. The date is still up in the air, but will be within a week or two based on clearing one whole day in the O.R. for both docs. They will be performing the posterior occipital fusion of the rear base of the skull to the spine. Unfortunately they are unable to avoid the halo. It may seem trivial for us to be worried about asthetics after the surgery, but it is much more than that. Haley will wake up from anesthesia and not understand what or why the hardware is mounted to her head and shoulders. In adults they drill 4 screws into the skull for stability. In children, which have thinner skulls, they use 6-8 screws. They are placed about even with the top of the ear (eyebrow height) and are made of graphite. We will be responsible for daily care of the screw sites with peroxide and antibiotic ointment. Forgive me but I am fearful of Haley's level of understanding when she wakes up. We can ask her now if she is ready to have surgery and she will wave her hand at us and say, "come on guys, let's get in the car for the doctor...yay...woo-hoo!" The graft for the fusion will consist of either bone harvested from her pelvis, rib, surrounding skull or artificial. The doc said the "gold standard" is pelvic bone with an almost 100% success rate. Please pray for all of the facets of this procedure. The orthopedic surgeon said they have seen zero cases like her, but have performed multiple surgeries in the past that they had seen zero of before and all have had a good outcome. The moment we are given a date for the surgery it will be posted on the blog. Thank you to everyone for your continued prayers for our family.
We love you,

The Cassidy's

Vague news

Hello,

I promised to post when I received any information. The doctor has found a willing orthopedist and has a plan, but we need to schedule an appointment to discuss the plan. I will let everyone know when the plan is revealed to us.

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