No News!

So, we know tons of you are waiting to hear about a date for Dallas...so are we!! Things are held up a bit right now with insurance and as soon as that is straightened out we will hear something. When we know, you'll know! Until then, check out this cutie!! He now weighs in at 9 lbs., 8 1/2 oz. How about that!

The Pictures Say It All

Silas and Pooh June 25th 2007

Silas and Pooh October 24th 2007

An Incredible Journey!

To play the video without pauses, please press play, then the pause botton and then wait until the white bar to the right of the play button fills in to grey before playing video. Enjoy!

Final Decisions

We wanted to write and give you all an update following our second meeting with the Pediatric Neurosurgeon in Buffalo yesterday. As you know, we were given two completely different diagnoses from the surgeon in Buffalo and the one in Rochester. However, the Buffalo Dr. had not yet seen the most definitive test of Sy's brain. So, our prayer was that yesterday he would change his diagnosis based on the evidence made clear (even to us) in the Head CT and we would have final confirmation and could move forward with the procedure. That, however, was not the case.

The doctor in Rochester diagnoses Silas as having the suture in the top of his head (Sagittal suture) as being open and the two in the back (Lambdoid Sutures) as being closed. The doctor in Buffalo yesterday said the the CT confirmed his earlier diagnosis in that he felt the Sagittal suture was closed and the two lambdoids were open. Clearly these are completely contradictory and require two different courses of action.

The doctor in Buffalo, Dr. Rozzelle, trained under a Craniofacial surgeon by the name of Dr. Fearon, who is currently the best in the world. Dr. Rozzelle said that it is highly unlikely that the Rochester doctor's diagnosis was accurate, as the lambdoid sutures rarely, if ever close and that Rochester was suggesting a procedure much more invasive than that which Silas would ever need. We decided in the end to go with the Buffalo doctor and chose the less invasive, endoscopic surgery on his recommendation. Although not completely at peace, we felt it was "the lesser of three evils".

Fast forward 2 hours. We got a phone call from Dr. Fearon, the Craniofacial Surgeon in Dallas. We had overnighted Sy's test results and a ton of pictures to him. Who knew we would be blessed with the opportunity to speak with him directly regarding Silas and his care? He explained that the surgery recommended to us in Rochester had first been used by a Polish doctor in 1965 and since had been abandoned. The surgery recommended to us in Buffalo in a side by side comparison to major reconstructive surgery had worse long term outcomes and resulted in more deaths. He also disagreed with both diagnoses and wanted to offer his own, third opinion. Just what we were hoping for!

Dr. Fearon, who sees more cases of craniosynestosis than anyone in the world, believes that Silas has Mercedes Benz craniosynestosis (it looks like the Mercedes Benz emblem).

The straight line in the picture is like the suture in the top of the head. It connects to two sutures in the back of the head that make an upside down V. Again, rarely if ever do all three of these fuse shut. There has, to this point, been one study published on this medical condition that included the three known patients with the same diagnosis. Next month, Dr. Fearon will publish a report detailing the 10 patients that he has now seen. That makes Silas lucky number 14 reported in the world. We always knew our son was one in a million. Last night we found out he is actually 1 in 473 Million!

So, where do we go from here? Dallas, actually. Silas will need to have open vault reconstructive surgery, whereby Dr. Fearon will split his skull, remove the bones, reform each of the bones in his skull and then reinsert them into his head. There are obvious risks. However, in the doctor's own words..."I am fixated on safety. Most doctors you see are pretty average. I like to think I have pretty good judgement. I know I have the most experience." To date he has performed 780 surgeries and has only lost one patient who had numerous other very significant medical issues. Out of all of Dallas he will only allow 5 neurosurgeons and 3 anaesthesiologists to work with him, feeling that more experience equals fewer mistakes. Following the surgery Silas will be monitored closely for years, as he has a 66 percent chance of developing a chiari malformation (the back of his brain pushing into the base of the skull causing a cork effect in the top of the spinal cord). However, long term, the patients have developed well both physically and developmentally.

Our prayer now is that our insurance company will approve this (although we have made our decision regardless), that we will know for sure the best time to go ahead with the surgery, that the surgery goes smoothly and that Silas does not develop Chiari, requiring a second surgery.

The blessing in all of this is that J.L. and I can say for sure that we are at peace. We know that God has worked all things together to bring our family to this point. We have been blessed in that we found this in time. We have found a wonderful doctor who cares about our son, who said that he will treat him not as just another case, but as if he were caring for his own child, and who also happens to be the best in the world. Although a long and difficult road ahead, we have the data to support there being a positive outcome in the end. We have family, friends and people we have never even met who have upheld us in prayer each and every day. And we have the assurance that God is with us even in the valley.

Isn't it amazing what God puts into your life at the most opportune moments. We just read the following and now know it fully and completely as truth:

"The name Lord...is anything but empty of meaning. It specifies immediacy, a presence: the verb "to be," which in Mosaic context is a "being present." ... Do you see the beauty here? It's unbelievable. The defining attribute, the identity of God, is "present rescuer." His name holds for us the very promise of presence. It is who He is. He is here. He is in the middle of the stuff we are in the middle of...This is a name that sticks. This is a name that defines. This is a name that in its very utterance births life. Our God is present. He comes to set things right. In His very name is rescue. This is who He is. There is not a moment in human history that has eluded His gaze. There is not a second in your life that He was not around. He is unavoidable. He is inescapable. He is inevitable and undeniable. He is."

Praise Habit: David Crowder

Silas Update!

So, many of you have been praying for Silas and the big decisions we need to make regarding his upcoming surgery. We wanted to let everyone know about what's been going on lately. Oh, and we'll try really hard not to use big, confusing medical phrases... Here Goes!

Last month we met with a Pediatric Neurosurgeon to follow up on some preemie issues. We thought nothing of it, considering we had been to a whole series of different specialists and Silas was clearing hurdle after hurdle. Needless to say we ere floored when the Doctor said that a couple of the bones in his head had fused together, leaving no room for the brain to grow appropriately. He said we had one of two options...
1. He would cut two small incisions into the top of Sy's head and remove the closed bone. Then Silas would be fitted for a series of reshaping helmets that he would wear for between three and five months of time. This would ensure that when the bone regrew, it would form correctly.
2. He would open Sy's head from ear to ear, take out the bones in his head, reshape them and then put the bones back in.

Each have their risks and benefits and we were completely unsure of which to choose. So, we decided to get a second opinion today at the Golisano Children's Hospital in Rochester to see which of the two surgeries this new doctor recommended.

We were shocked once again when this doctor came in and said that he did not believe that the bone in Sy's head was closed. He thinks that we are dealing with a whole separate set of issues. He believes that another couple of bones are fused in a different section of his head, that his brain is under pressure causing a thinning of the bone, and that the only option is to perform a craniotomy. This would mean opening his head from ear to ear and removing the entire top and back of his skull. This would hopefully regrow within a couple of months.

Hmmm....we have no idea now. But we will meet with the first doctor again on Monday and know that God will make it clear to us which is the best option for our little guy. Our decision needs to be made soon, as the surgery has to take place within the next two weeks. Please keep praying for wisdom as we seek His will. We really appreciate it!! We'll keep you all up to date as soon as we know something for sure!

Bills Games!

Each Sunday, Silas dons a football outfit and his sweet Bills booties and cheers his favorite team on to victory...okay, he gives it his best shot anyway! Here's a shot of J.L., Silas, and Grandpop on the Game Opener. Although our record is 1-3, there's still a whole lot of the season left to go! J.L. will be at the Stadium in a couple days for the Monday night game against Dallas! GO BILLS!!

Pumpkin Patch!

On Monday, Nana, Papa, Auntie Christina, Mommy and Daddy took Silas to the Pumpkin Farm. As you can see from the pictures, he enjoyed it immensely!! So, maybe he never opened his eyes, but we're sure he was happy on the inside! We took advantage of the sleeping time and took his picture on about every single pumpkin in the patch!

We like to call these pictures, "Where's Silas?" Due to the camouflaging nature of his outfit, you may have to look carefully to find him!

Sundays

As Mentioned previously, this October has been in the 80's!! It's been so nice that we took Silas to church and then had a family photo shoot in our backyard. Here is one of our favorite shots!

Church is fun. Silas hasn't really mastered pooping like a gentleman. So, each week when his face turns a little red or he starts moving and grunting, one of us makes a rapid exit before the explosions begin! Good times!

Birthdays

September 25th was J.L.'s 28th birthday. The morning started off with a gift from Silas. He really pulled off a good surprise by "making" matching Mustang shirts for him and Daddy! Now all they need is the Mustang to ride around in! After a surprise babysitting visit from Auntie Christina, lunch at Red Robins, and a party at Mom and Dad Wards, J.L. opened a Real Man's Grill. It's been fun to use for a couple of reasons...1) We've had been an October with temps in the mid 80's and 2) Our son is no longer attached to flammable gases!

No O2

September 24th was a really good day! Silas had an appointment with the lung center at Children's Hospital. He still can't hold his head up well enough to drive so we took him. While recent visits to specialists have not been too much fun... this was a good one. After some basic testing and questions, the pulmonologist gave us the "OK" to take Silas off his Oxygen during the day. We were thrilled! We walked out of the hospital carrying our baby for the first time "wire free" ... no monitor, no leads, no oxygen, no tank. Actually all that stuff was in the car seat that J.L. got to carry. But for Heidi things were significantly lighter. Now we only plug him in at night!