Jake's Head Surgery

Tomorrow is the big day and we start very early in the morning. Jake spent some time in his favorite jumping toy before downing his last bottle and falling fast asleep. We are anxious and nervous but know that the sooner this day comes and goes the sooner we can put it behind us.

Our boy Jake has taught us so much about ourselves, deeply impacting our perspective on life. Jake is such a fighter and he has already faced so much from his syndrome to severe reflux to hand surgery. None of this has stopped him from being a happy go lucky baby with a big gummy smile. Yesterday the boys took their first bath together and Jake was so happy to splash around with his brother and giggled in delight. He is our sweet baby boy and we are sad for what he must face. We know this will only help him moving forward but its hard as a parent when you know you can't spare your child the pain he must face. I'm not sure how we are comprehending what we are asked to do tomorrow. We will face 8 hours of nervous anticipation once we hand over Jake to the surgeons knowing they are operating on his skull and brain. Then stuck in a waiting room praying for the moment he is returned once again to us.

We take this step forward as family minute by minute relying on our love for our boy to get us through. Tomorrow as you go about your Friday, take a pause at any point and just think good thoughts for Jake so that our little fighter has all the ammo he needs to get through this very delicate surgery.

We will try to update the blog tomorrow night so everyone knows it went ok.
With Love,
Lance and Sam

Jake Update

Well some good news today leading into the surgery on Friday. Jake's hands have healed so well that he no longer needs to wear his splints. That makes the Jakester very happy.

Also here's a cute photo of Jake and Luke as they celebrated 8 months!

Jake's Head Surgery

For starters, we want to thank everyone who graciously donated blood on Jake's behalf or attempted to do so. We did find out today he is B+ which means he can receive B+, B-, O+, and O-. Any blood types donated that he doesn't need or isn't the right type will be donated to people in need so thank you all. The blood bank commented on how many people have come for Jake so again thank you for making him a mini-celebrity at the blood-bank.

We had Jake's pre-op appt today with his surgeon and reviewed the course of action. It is very extensive and watching the Dr. draw diagrams for us of what they are doing is very frightening. We know though that it is all for the better and serves two parts. one to unfuse the sutures on the side of his skull that are fused and two to cosmetically restructure the skull to resemble a more normal one which includes reducing the height of his head and establishing bone growth in the front of his head where currently he doesn't have. They will shave a headband like patch of his hair from ear to ear which will serve as their entry point for all of the skull redesign. Next Friday February 1st is the surgery. We have to report to Cedar's Sinai at 5:15 am for a 7:15 surgery time. They have allocated 8 hours for the surgery. He will need to stay at the hospital for 5-7 days depending on his recovery. And his head for the first few months will look more square than normal partly due to overcorrection so his brain has extra room to grow and partly because it takes time till everything assimilates into proper position.

We are nervous for our lil boy but the Dr. does perform these surgeries all the time and we have a lot of faith in Dr. Urata. He will be doing the primary surgery with assist from the neurosurgeon Dr. Danielpour in the areas that affect the brain. This is tough for any parent to go through with their child but we know that this surgery helps Jake tremendously in the long run. I guess we just wish that it didn't all happen so close together as he is just hitting his groove now that he recovered from the hand surgery. We will update everyone more next week but it can't hurt for everyone to start thinking about Jake and sending him positive vibes.

Blood Donation

The Dr.'s have recommended that we stockpile blood in advance of Jake's cranial surgery on February 1st. We welcome anyone in LA who wants to donate blood to do so. Any non-matching blood types or excess will be donated from Jake to other children in need.
If you wish to donate, please contact the Cedar's Sinai Blood Bank at 310-423-5346 and press zero and tell them you would like to donate blood for Jake Reiss and make an appt.
We appreciate your support and thank anyone who is able to make a donation that will help Jake or anyone else in need.