Home Again!

Oh what a week we have had!! On Tuesday we checked out of our hotel and left Dallas behind. After a long day of travel, we were ready to be at home! Silas did remarkably well on both flights and has surprised us here at home too. He is healing well, the swelling is diminishing each and every day, and he did not take any steps back developmentally…except for the milestone of needing sleep. He hates the nighttime and lets us know it. But, other than that he is back to his happy, smiling self! We love that everything is behind us and that we are carefree as we prepare to celebrate this special time of the year.

And speaking of this time of year…we could not have been more surprised to come home to our friends having helped us get in the Christmas mood. On Tuesday morning, three of Heidi’s girlfriends went out to a Christmas tree farm to cut down the tree that we had tagged prior to leaving for Dallas. The funny thing was, we ran out of time to tag a tree and never knew that we would need to tell anyone that small piece of info. So, needless to say, they spent a good deal of time searching through the 1500 pines to find the one that did not exist. (We would like to pause at this time to extend our most sincere apologies to the person whose tagged tree our friends decided they would write “Miller” on and tell us was the tree we previously picked out. It is most certainly a beautiful find.) Our friends and church also stockpiled our freezer with many meals to help us over the course of the next few weeks, a decision that, as we run around like crazy people, will keep us from one continuous cereal buffet.

Yesterday we celebrated the fact that it had been one full year since we found out that Silas would be joining our family. We never could have imagined all the blessings that we have experienced since his birth. Each day we are truly amazed and grateful for all that he means to us and pray that his little life would impact many, many others as well. At this time of year we know that his life and ours as well hold true meaning because of another baby whose birth and life continue to change the world. We pray that the JOY that only Jesus Christ can bring will fill your hearts and lives this holiday season and always!

Love,
J.L., Heidi and Silas

Shrinking Head, Growing Teeth!

Hello from our Dallas-Hotel-Livin'-Selves! We wanted to update everyone on just how well Silas is doing. He was discharged from the hospital Friday afternoon with very specific instructions....shampoo his hair. That's it. No bandages, no pain meds unless absolutely necessary, nothing. Just good ole' Johnson and Johnson. Due to his underdeveloped lungs and the breathing spell in the hospital, he is receiving some asthma medication 6 times a day. Other than that, he is just hanging out with Mommy and Daddy, Nana and Papa waiting for his head to return to normal. Although that will take about four months time, we can visibly see a difference already. By the end of next week, 70% of the swelling should have disappeared.

Now, along with the whole brain surgery thing, Silas decided to pull off another major milestone...his first two teeth! We guess he took that "All I want for Christmas is my two front teeth" thing literally!!





Overall, Sy's recovery has been amazing. He is such a little trooper and has come through this remarkably well. It truly has been a testament to the faithfulness of our Lord and Savior. He is the same yesterday, today, and forever...His mercies new every morning. For that we are forever grateful!

We will be traveling home on Tuesday. Regardless of what the pulmonologist says, Sy's lungs are more than well developed. Our biggest prayer right now is that he chooses not to make use of them on our flights.

We cannot begin to describe the absolute joy and relief that we are experiencing now that this is all behind us! Again, thank you all for your continued prayers!

With Much Love,

J.L., Heidi and Silas

The Other Side

WE WROTE THIS YESTERDAY AND DID NOT HAVE TIME TO POST IT, SO THE TIMING IS OFF BY A DAY...SORRY FOR THE CONFUSION!!

We are writing to let you know that all is well here in Dallas! Silas came through surgery remarkably well yesterday and we are thrilled to be on the other side of things! He went into surgery yesterday morning at 7:39 am (precisely!) and was expected to be in the Operating Room for 5 hours. After the first hour, Silas had been sedated and all of his lines were in. After 3 hours and 20 minutes we called into the Operating Room for an update and it was the doctor who answered, with Silas screaming in the background. It was our favorite Silas scream yet!!!

Silas was transferred to the Pediatric Intensive Care Unit around noon yesterday and we were able to hear details from the surgery team at that time. Overall, the surgery went faster and better than expected. Silas did lose a great deal of blood and required a transfusion post-op. However, the doctor expected Silas to recover without any complications...apparently he was not properly informed of Sy's track record!

As you can see from the pictures, Silas looks a lot like Charlie Brown (or Rocky's opponent)! He is swollen and bruised. His eyes are swollen shut and his head is the size of a volleyball. His body looks like that of a football player with a complete lack of neck, is pasty white from blood loss, and he is too exhausted and sore to make much more than a sad moan. However, we know that the road will be long, but we are well on our way.

At this point, Silas is still in the Intensive Care Unit and will be at least through the night due to some trouble he had this morning. Although his heart rate and breathing dropped off quite low for a good couple of minutes, he has not had any episodes since. The doctors cannot find any physiological problem that would have caused this to happen...just a hiccup along the road to recovery.

The prayer now is that Sy's fever will start to turn the other direction and that he does not develop any infection, pneumonia or any additional respiratory issues, that he stays out of significant amounts of pain, that his numbers will come up at the completion of his second transfusion, and that his swelling begins to diminish as of tomorrow.

UPDATE: It is now tomorrow morning!! Silas is doing really well. He has gotten his appetite back somewhat and is not nearly as black and blue as he was yesterday. We are expected to be moved to a regular pediatric floor as soon as a bed opens up. Things are definitely headed in the right direction!! Now we just have to get him back off the oxygen that he just came off of at home!! All in good time!

Mostly we are writing to let you know how encouraged we are. We feel as though a big ole' weight that has been hanging around since June has been lifted off of our shoulders. We are truly blessed to have Silas on the road to recovery, to have had the support of so many of you, to have had our family here throughout this time and to have been upheld in so many of your prayers. We know that because of your faith, we have been able to remain faithful and that has made all of the difference. God has shone His face through the faces of so many of you and the three of us have been blessed because of it. We know that Silas is resting and recovering in the palm of God's hand and that is a pretty cool place to be!

We will keep you all updated as things progress!

With Much Love,

J.L., Heidi and Silas!

Prayer Wheel

We wanted to pass along a Prayer Wheel that a group of ladies from our church made. It covers the entire time that we will be in Dallas, with specific prayer requests for times throughout the days we will be away. The biggest prayer right now is that the weather holds up for our flights out. There is supposed to be a major ice/rain/sleet/typical Buffalo December day happening right as we are flying out. We could swap our flights out for a mere $1200.00, which we felt was reasonable :-)!!! However, we know that God has and is continuing to work all things together in His perfect timing. Everything else has come together so well and we know that this will all work out, too. And, as a bonus, Silas will get to try out his ultra sweet snow suit!

As always, we appreciate all of the prayers and support that we have received along this journey. We could not have made it through this time without each of you upholding us in prayer. We seek your continued intercession come Tuesday morning, as we dread the moments apart from Silas. However, we are confident that God's peace will sustain us throughout that time.

We hope to post an update Tuesday evening while standing on the other side of the surgery. Although recovery will be daunting, we will be thrilled to have that piece behind us!!

PRAYERS FOR SILAS
HEIDI AND J.L.

Dear Friends of Silas:
Below is a prayer wheel to help the Millers as they embark on their journey. Although they are traveling into the unknown which can be daunting, scary and nerve-wracking, Heidi and J.L. have the peace and comfort of knowing God and trusting in Him. Please support them by praying during the following time frames. Dallas may be far, but not far enough to escape the power of prayer. Together our Church community can bring comfort to Heidi and J.L., Silas and
their family during this period of their lives.

The Days before departure for Dallas
Silas to be healthy. Complete peace for Heidi and J.L.
Strength to get through all pre-testing.
December 2

TRAVEL: Flight departs@ 4pm
Safe and smooth travel without delays to Dallas. There are Pre-op appointments that are scheduled to begin 9 hours after landing in Dallas. Silas needs to feel well and stay
content during flight. Pray for a good nights rest before a busy next day.
December 3

PRE-OP
Strength to make it through 10 hours of back to back appointments and testing. Traveling mercies as they navigate in and around Dallas to various hospitals and offices. Pray for
Silas during his in-depth Cat Scan which requires fasting and sedation. Peaceful rest
for Heidi and J.L. and family.
December 4

SURGERY
6am Prayers for: Silas during his fasting. Safe trip to the hospital.
7:30 Strength for Heidi and J.L. as they hand over Silas to operating
room staff.
8:00 Pray for the Peace that only God can give to surround the family for
the 5 hours that Silas is in the operating room
Pray that the surgery goes safely and smoothly
Pray for the Doctor. Pray for wisdom as he operates
12:30 Pray for Silas in the recovery room
Pray for Heidi and J.L. to have inner courage as they see Silas in the
recovery room knowing they can not hold or comfort him
2:00 Pray for Silas in the Pediatric Intensive Care Unit. Pray that he will
be free from infection and any post-op complications.
December 5,6

Pediatric Intensive Care Unit
Pray for Silas’ quick recovery in the PICU. Pray for a quick return to his normal eating,
smiling and snuggling self. Pray that Silas will have limited discomfort and swelling
December 7 – 10
Pray that Silas is healthy and well enough to be discharged. Pray for Heidi and J.L. as
they transition into full time care for Silas at their hotel room. Pray for good rest,
continued recovery without complications.
December 11

TRAVEL
Arrive home @ 7 pm
No delays or cancellations with the flight. Pray for Silas’ comfort during travel.
Pray for them to be surrounded by healthy people on the airplane.
December 12 -
Pray for Silas to be feeling well as they celebrate their first family Christmas.
Pray for Silas to stay free of illness as he continues to recover.
Pray for Silas and family as every 6 months the doctors check his progress. He will
undergo hospitalization locally and will need sedation.

Blessings!

J.L., Heidi and Silas

A LOT of Thanksgiving!

This year, more than any other, our family has so very much for which to be thankful. As we celebrate this Holiday and look back over the past year, God has been raining down blessings too numerous to even count! It isn't often that one is able to so immediately see what could have been "Valley Experiences" as "Mountaintop Moments". We know that God has lead us on a path surrounded by people who have made that possible. Thanks to each one of you who has allowed God to use your life to touch ours. Whether through a note of encouragement, unending prayers for Silas, a delivered meal, or financial support for our trip, you have lifted our spirits and have allowed us to just appreciate the journey on which we have been called.

Weekend of Visitors!

It just so happened that a whole bunch of really important people, all of whom had been wanting to visit Silas for a while now, decided to come together for a weekend to remember!! We had a blast seeing a couple of Sy's favorite nurses from his days in the Neonatal Intensive Care Unit. After three months at home and a quadrupling of his size, it was good to be able to see the ones who took such good care of him during such a critical time. As we celebrate this Thanksgiving week, we continue to be grateful to have had them watching over him then and for their friendship now (and mostly for the amazing Mexican that they brought us... of the food variety).
Visitors #2 and 3 were Sy's Grandmommy and Aunt Sarah. Grandmommy came for an overnight visit and got in lots of lovin'. Sarah happened to be in Buffalo for a school sporting event and was able to come see Silas for the first time since his second week in the NICU. She even got to hold him for the very first time!

The weekend topped off with Auntie Christina and Uncle Rick coming in from Maine! We had a ton of fun together and with Nana and Papa, too! Silas was mesmerized by the Sunday Night Bills game (someone had to be!) and loved trying to find Daddy and Uncle Rick in the Nose Bleed section...what can one expect from scalper tickets????

Oh, and the big event for us was, of course, the weekly weigh in. 10 lbs 8 oz last Monday, 11 lbs. 2 oz. one week later! Nice work, Silas!

Shots and Bloody Knuckles

While the title of this post may lead you to believe that Silas has begun his training to become a cage fighter, fortunately, we have convinced him to wait until at least his first birthday.


The shots were of the medical kind and they came today. One was a medicine to help protect him from RSV, a respiratory virus that shows up during the winter months. Although in most kids and adults RSV only causes the annoyance of a nasty cold, in preemies it can be life threatening. The other shot was a medicine to prepare his blood for surgery. The doctor in Dallas has found this medicine has helped to reduce the need for transfusions and surgery complications.

The bloody knuckles are actually ours! In an effort to keep germs away we have been washing our hands religiously! It is suprising how often during a day one comes in contact with potential germs when paying such close attention. The dry cracks in our once normal hands simply laugh at the meaningless application of lotion. But the pain of cracked skin is well worth it, as Silas must stay healthy as we prepare for surgery!

God's goodness over the past few weeks has absolutely blown us away! Whether through the orchestrating of details, the support of friends and family, or the answering of prayers, we continually stand amazed and in praise! Our plans for surgery have come together nicely and at this point we just have some last minute travel details to pull together and a TON of paperwork. Who knew one surgery could accrue a pile of paperwork equal to Silas' weight....which, by the way, is 10 lbs. 8 oz.!! That is exactly quadruple his lowest hospital weight!!!!!!!

While we know that God holds the future, that His plan is perfect and that His love for Silas is greater than even ours, we are still anxiously awaiting the day when this is all behind us. But until then, we are going to keep ourselves busy by decorating for Christmas, picking out our tree together and making loads of Christmas cookies! Our plan is to return from Dallas with nothing to do but to enjoy the two greatest gifts in our lives: the birth of Jesus Christ and our own little miracle!


Thank you all for your prayers as they mean more to us than we could ever articulate!

To Friends of Silas -- From Friends of Silas

Greetings friends and family of J.L., Heidi and Silas Miller,

We hope you have had the opportunity to absorb the beauty of this fall season. It is amazing how God’s creation, a colorful tree, a brisk day, a season, causes us to move. We remind ourselves each fall to stop and look up from our lives to see the beauty of the foliage. It is God’s desire, and for His glory, that we stop and allow ourselves to be moved by and engaged in His creation.

It is within this context that we are writing to all of you. More magnificent than the creation of the earth is the birth of a child. We all are moved by and want to engage in the life of a newborn baby. We are asking that you join us in moving in the life of a precious creation, the life of baby Silas Park Miller.

Silas has been diagnosed with a rare cranial condition known as Mercedes Craniosynestosis, a fusion of three plates in his skull. This premature closure of bone inhibits the brain from growing in the appropriate manner. To date there have only been thirteen reported cases of this condition in the world. Silas will need to undergo major vault reconstructive surgery in early December. This will entail opening his skull, removing the fused plates, reshaping the skull bones and placing them back into his head. J.L., Heidi, and Silas will be traveling to Dallas so that the procedure can be done by a Craniofacial surgeon who has treated 10 of the thirteen patients with this malformation. Following the surgery and for many years after, he will be monitored closely to ensure that everything is forming and developing appropriately.

We are asking that you allow yourselves to be moved by Silas and, in doing, so be engaged through the Holy Spirit to act, first by praying, second by your offerings and third by praying some more! The financial need is immense. The timing is critical. The hope is that all donations would be sent by Thanksgiving, as the Miller’s will be leaving early December for Silas’s surgery. Donations should be made payable to “Baker Memorial UMC” and sent directly to:
Baker Memorial U.M.C.
345 Main St. East Aurora, NY 14052
*with a notation of “Silas” included on the memo line.

We all know the opportunity to see the passing of the fall season presents itself year after year. Likewise, the opportunities to help our brothers and sisters in Christ are presented to us often. We ask that you do not wait for another opportunity to act, but stop and look up at the opportunity that is presenting itself to you today.
“Do not withhold good from those who deserve it, when it is in your power to act.” Proverbs 3:27

With hearts engaged,
Friends of Silas~
If you have any question please direct them to Karla Prychodko @ 652-3014, Jody Zacaroli @ 655-5059 or Katie Felton@ 353-0442, several of the many friends of Silas.

Surgery Date

Hey Everybody!

Many of you knew and had been praying for us as of Friday when our insurance company denied our request for surgery in Dallas. However, clearly God has been working overtime answering all of the prayers for Silas!! As of Monday, the insurance has come through!!! And on top of that, we were given free round trip airline tickets from a generous friend at church. The blessings keep on pouring in!

Silas is getting all ready with pre-op workups, prescriptions, bloodwork and doctor's appointments. His busy schedule is beginning to put a cramp in our style. However, it has become clear to us through all this what exactly he will be needing for his first Christmas; a palm pilot and Personal Assistant.

We will be headed to Dallas on Sunday, December 2nd. On Monday we will be meeting the Neurosurgeon, a Craniofacial surgeon, a Genetist, and completing all the rest of the necessary pre-op.

It seems as though all of the pieces are really coming together perfectly. We are anxious to get Silas through this next step in the journey and to have him home and well by Christmas! There could not be a gift more precious.

Thank you all for your prayers and support. We see the blessings in this each moment of each day. The love that has been showered upon us by God and His people gives us all the encouragement we need.

New Tricks

To Play without pauses, please press the play button and then pause immediately until the white bar to the right of the play button fills in to grey. Then press play and enjoy!

Oh and if you were born prior to man walking on the moon... make sure your volume is up too. We have had to handle a varitey of technical questions from the builder/boomer generation as they enter the wonderful world of blogging.

Fall Walk and Update

A wise friend of ours told us to enjoy every second that we have together as a family before Silas has his surgery. We absolutely have!! We love having Silas home and are making the most of each day! Here are some pictures of a walk we took in this awesome Fall weather to show Sy the colored leaves!

By way of an update, Silas had his four month appointment yesterday. Although only two months corrected age, the pediatrician said that he passed every four month developmental test. He really showed off by smiling, "talking", tracking horizontally and vertically, doing a push-up and almost rolling right off the exam table! Silas now weighs in at 10 lbs, 1 oz. and is 22.3" long, which puts him right under the 0 percentile for both height and weight! But, he's making a curve of his own and is narrowing the gap! The Pediatrician kept saying she was "very impressed"! So are we!!!

Happy Halloween!

Silas said "Howdy" to his first Halloween by dressing up like a cowboy! Although a little suspicious at first, he loved every second of it! He played the part well, with hat, lasso and all!! He visited a bunch of friends houses and ended the night by hanging out with Nana and Papa. Although he didn't receive any candy, he did get a lot of laughs! We think this is a look that could stick!

NO MO O

Silas passed his first big test!! This past weekend he came home on a monitor that recorded his oxygen saturation. We hooked him up and let him go the whole weekend without any supplemental oxygen. On Monday we found out that he did great and passed with flying colors!!! So... he is officially off the O2 and breathing on his own!

We are more than happy to say goodbye to these pesky machines and wires...

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!

Floor of the Canyon

It is Saturday and we now know for certain that our precious baby boy will definitely need to have brain surgery to correct a bone in his head that has fused too early. We are broken once again...wondering how much more his little body will have to endure. Sometimes we want to say that we have been faithful enough. But we know that there is no limit to the amount of faithfulness that God requires of us. So we will trust Him to guide us through the months that lie ahead.

On the day that we met with the Neurosurgeon and heard the news, we read the following in our devotions...

"We always assume that the desert is not where we belong. Perhaps it was too subtle, but if we would have paid attention we might have felt His hand with delicate softness take ours, and our fingers slowly interlock, and then the gentle pull away from green grass and the mountain springs. We might have seen that we did not wander here alone...What would it be like to know without question that God is as present on the floor of the canyon as He is on the crest of the hill? To have this confident hope buried deep in our bones. To know no other than our Savior and feel the soul scream , "This is enough! I need no more than You! You are a feast! You are a cool spring! You are deliverance! You are a balm for all wounds! Your near presence is everything! It is breath! It is life!"
David Crowder "Praise Habit: Finding God in Sunsets and Sushi"

Creator

Psalm 19

1-2 God's glory is on tour in the skies,
God-craft on exhibit across the horizon.
Madame Day holds classes every
morning, Professor Night
lectures each evening.

3-4 Their words aren't heard,
their voices aren't recorded,
But their silence fills the earth:
unspoken truth is spoken everywhere.

4-5 God makes a huge dome
for the sun—a superdome!
The morning sun's a new husband
leaping from his honeymoon bed,
The daybreaking sun an athlete
racing to the tape.

6 That's how God's Word vaults across the skies
from sunrise to sunset,
Melting ice, scorching deserts,
warming hearts to faith.

7-9 The revelation of God is whole
and pulls our lives together.
The signposts of God are clear
and point out the right road.
The life-maps of God are right,
showing the way to joy.
The directions of God are plain
and easy on the eyes.
God's reputation is twenty-four-carat gold,
with a lifetime guarantee.
The decisions of God are accurate
down to the nth degree.

10 God's Word is better than a diamond,
better than a diamond set between emeralds.
You'll like it better than strawberries in spring,
better than red, ripe strawberries.

11-14 There's more: God's Word warns us of danger
and directs us to hidden treasure.
Otherwise how will we find our way?
Or know when we play the fool?
Clean the slate, God, so we can start the day fresh!
Keep me from stupid sins,
from thinking I can take over your work;
Then I can start this day sun-washed,
scrubbed clean of the grime of sin.
These are the words in my mouth;
these are what I chew on and pray.
Accept them when I place them
on the morning altar,
O God, my Altar-Rock,
God, Priest-of-My-Altar.

The Sunrise on the Morning J.L. was born....

The Sunrise on the day Silas came home from the hospital...

Girlfriends and Buddies

My, oh my...Silas is becoming quite the socialite!! In just three short weeks at home, he has already found himself a best friend and a new girlfriend (one who presently overpowers him in the weight department, but he'll get there!)

Sy's best friend Ry lives in Ithaca, but came for a visit this week. They get along great...mostly because Silas never opened his eyes the entire time they were together. It made it easy for them to agree on most issues that way. It would be much more productive to have conversations if Silas' friends came over at 2 in the morning when he is guaranteed to be wide awake.!

Ryan and Silas are only 6 1/2 weeks apart, but Silas has some definite catching up to do! Ryan presently weighs in at 3 times Silas' weight. His mommy and Sy's had babies on the extreme ends of the spectrum...Ryan at 11 lbs and Sy at 3. One day, they'll be right on track with each other and we're sure will have just as much fun as their parents currently do together!
Check out their sweet matching outfits!

Junie is Silas' newest girlfriend (having already left one at the Neonatal Intensive Care Unit). 11 weeks old and two girlfriends under his belt. What can we say...he is a chick-magnet! June was just born a week ago, but the two have gotten together a few times already. Check em' out catching some Z's on the couch. Clearly we were boring them to death

A Life Worth Celebrating

“Memories are a way of holding onto the things you love, the things you are, the things you never want to lose.”

Our Grandma left an amazing legacy! Here are just a few of the memories we will hold in our hearts until we one day see her again…

Grandma,

We cherish each moment and are blessed to have had 30 years of life with you! Thank you for slumber parties, Christmas stories, “surprise” summer outings, and Happy Birthday phone calls; for airplane trips at 89 and showing us that cardboard boxes and duct tape really do double as travel luggage; for handfuls of chocolate and yellow sweaters, wooden-handled eating utensils, and curling irons best left in the bathtub; for loving a flower enough to wallpaper your Dining Room with it to keeping the roses until well past their prime!

You have taught us that God’s timing and our timing are not always the same, but that God’s is always perfect; that tea parties are best with hot chocolate, an orange is too much for one person, and a whole sandwich is meant to be shared.

We now know that red cars are a danger, a car horn is a terrible thing to waste, and waving while driving takes precedence over watching the road. Thank you for showing us that seat belts are not nearly as effective without a clothes pin, a car is not in park until the gear shift is hit three times, televisions are not off until they are unplugged and the light switched to “off”, and that one should never leave home until the stovetop burners have each been tapped.

Because of you we know that Jesus comes first no matter what, that just because others do something doesn’t make it right, and that it all boils down to “the principal of the matter.” We know that the Bible is not a one-time read, that one should never look at someone until their face is on, that the number to the White House is indeed accessible, and that Britannica is a four letter word.

Through you we have learned that family means everything, that growing old can be beautiful, and that life with Christ is a life worth living.

Most important, we know that this good-bye is temporary. One day you and Papa will wave us into Glory and we will be together again.

With All Our Love,

Christina and Heidi

Footprints and Parades

This last week Silas finally got to meet his Auntie Christina and Uncle Rick! It's pretty safe to say that he's fallen in love (I think they have a little bit too!). We filled the week with the basics: eating, sleeping, crying, and pooping. But enough about Rick and Christina. Silas, on the other hand filled the week with many new adventures. Silas had his first outing taking in the annual Toy Fest parade. He attempted to make a mold of his hands and feet in cement, a stunt much harder than it seems from the instructions on the outside of the box. We all joined him on his first stroll around the block which looked more like a celebrity touring with an entourage. We celebrated his official due date and Rick's 30th on the same day. While all of these things seem to make for a pretty full week, there were two other important moments we will never forget. This week Silas was able to say "hello" to his Great-Grandparents Nanny and Poppie for the very first time and "goodbye" to his Great-Grandma Ward who went home to live with Jesus.

Hmmm...

We've discovered something interesting about our son. Most kids suck their thumbs. Ours sucks his pointer finger. We're not sure why, but we are very amused by it.

Photo Shoot!

We don't know how professional photographers do it! Today we tried to have an at-home photo shoot with Silas. It is very difficult to do between all the sleeping, crying, pooping, and throwing up that he is doing! But, we gave it our best shot (literally!). Hope you enjoy the picture as much as we enjoyed taking them!

Here are a couple of our favorites. You can find the rest of them at:

http://picasaweb.google.com/jlandheidi