First Post & Keegans Diagnosis

Well I thought I would start a blog to keep family and close friends updated on Keegan as many have asked to be put on the update list. With everything coming up so quickly, I figured this is a great way for people to be updated.

I took Keegan into Urgent Care on April 17, 2010 because he had been grabbing his ears. I figured I should take him in since we would be flying to Arizona the following Thursday to celebrate his FIRST Birthday (which was a success by the way). His ears looked fine but the pediatrician who saw him was concerned about his head shape. She felt his head and noticed a ridge running from the front of his head to the back. She strongly encouraged me to call our pediatrician first thing Monday morning and ask about getting a CT scan performed. This was NOT the news I was prepared to hear, nor the news I wanted to hear by myself. PJ was down in Tucson for work and was watching Ashleys softball game vs U of A when I called with the news. I was in tears and was pretty choked up.

In the back of my head I knew he had it, yet had never heard of it. I knew he had a long shaped head and the ridge indicated that she was correct. I never worried about him because he is such a smarty pants and I just figured every kid is different. It was a long 3 days until I could get in to see Dr. White (our ped). When she saw Keegan she confirmed my thoughts and referred us to Phoenix Children's Hospital. I called PJ at his parents house with the news. At 1am he got in the car from Tucson and drove to his parents house so he could be around family when he heard the news. I am pretty sure he knew what was going to be said as well. He got an appointment scheduled with Dr. Adelson (the chief of neurosurgery in Arizona) and a CT scan scheduled on Keegan's birthday. It was not the birthday gift we wanted to be giving Keegan but we knew it had to be done.

Keegan did AWESOME with the CT scan. We got there and he played with a few kids in the waiting room. During the scan, he was a little unsure at one point when he was all bundled up. He looked at me with a quivering lip and I thought I was going to lose it. Instead I grabbed one of the many "cool" toys they had to distract the kids and he brightened up. It went by really fast and he even got a neat beanie baby toy to take home with him. We sat in waiting room after until they had burned us a copy of the CT scan. With CT scan in hand, we left the hospital full of emotions, hoping for the best but prepared to hear what may be.

Knowing the results were on a disk in our hand, we promised we would wait until the medical professionals read the results to us. We pushed it behind and focused on throwing Keegan and AMAZING first birthday party. We had such a great turnout with amazing family and close friends to celebrate. Keegan devoured is cake and hammed it up for everyone watching.

The weekend ended and we were faced with our appointment with Dr. Adelson on Monday. PJ's mom tagged along to help with Keegan and make sure we didn't miss any important questions once we heard the news. The nurse practitioner came in and showed us the CT results. We knew instantly that his sagittal suture had fused together. She explained the diagnosis and treatment with us before Dr. Adelson came in. I thought this was different that she broke the news but it helped us focus on asking questions when Dr. Adelson came in.

He explained that although there is no definitive data saying it can cause brain delays, it is linked to some as well as jaw problems since his head is only allowed to grow in one direction. Some link pressure in the brain to this condition as well. He let us know that the surgery is highly recommended and NOT for cosmetic purposes. Keegan's metopic suture (along his forehead) is also closed but the doctor was not concerned as this closes earlier anyways and the sagittal suture surgery should correct it

I have done some research online and see that this condition is apparent in every 1 out 2000 babies and 3 times more likely in boys than girls for his premature closure of the sagittal suture. However, as with anything there are so many different things on the web for his condition.

Phoenix Childrens Hospital has specialists for each surgery, and since Dr. Adelson is fairly new (around a year), Keegan's surgery would be done by Dr. Shafron. I have read great things about Dr. Shafron and am fully confident he will be great for Keegan. The cranio-facial plastic surgeon will be Dr. Joganic from Barrows Neurological Institute at St. Josephs (he is also retired Air Force and did work at Wilford Hall). We are thankful that we are able to travel to Arizona where top-notch surgeons will be able to correct this.

Keegan's surgey is scheduled May 21, 2010. Keegan and I leave on Sunday to fly to Arizona and PJ and his dad will be driving the car with Cooper on Monday. Thursday we will be going to the hospital for labwork at 9am and an ICU tour. Then in the afternoon we will meet with Dr. Shafron and Dr. Joganic individually to discuss surgery plans.

PJ and I have both had some emotional times dealing with it all but we know God has a plan for everything. We thank the Lord that this was caught early, before it became a problem. It has been a very difficult time for us and I have found some comfort in becoming a member of a web site called craniokids.org where mothers and fathers share their experiences with cranio surgeries.

I hope to keep this updated throughout to keep you all informed every step of the way. We are BLESSED to have such wonderful family and friends to help us through this tough time. Feel free to ask any questions you may have.

I apologize for the LONG post but this is not even half of everything going on in our minds right now =)

Love to all!

Tara