Wednesday, May 28, 2014

One Month Out

He did it. We did it. Sylas had his surgery one month ago today. And he is doing so well!

He spent one week on the surgical floor before moving to the rehab floor where he and I have made our home ever since. He is getting 5-6 therapy sessions every weekday, stretching and stengthening muscles he has never used before. Yesterday he stood for the first time since the surgery and he had straight legs, a talk back and heels on the floor. So good! In a few minutes I'm off to join him in physical therapy as he tries to take his very first post op steps!

Thank you all for your love, prayers and encouragement during this time. 

P.s. Here's a little video Ryan put together to keep himself busy during the 8 hour surgery.


Monday, April 28, 2014

Superhero in Surgery

Sylas is in surgery now. 

We made it to Oakland last night but with all of the cancellations it didn't feel real until he was wheeled into the operating room this afternoon.




Then I cried.

He is so brave and seeing as it's National Super Hero Day, I think it's a great day for surgery.





Friday, April 25, 2014

No Surgery Today

We are in limbo.

About an hour into our drive to Oakland yesterday, we got a call that we were once again being rescheduled.

Of course we are so thankful that our son isn't the one in need of emergency surgery. So SO thankful. But we are emotionally exhausted.

And still waiting for a new date. 

Thank you for your continued love and prayers.

Thursday, April 24, 2014

To Sylas the Day Before

This is it, son. 

After some re-scheduling and crazy messing with mommy's emotions, tomorrow is the day.

The day that has the potential to change the way you move forever. To give you more freedom and less pain, with hopes to keep you walking your whole life.

 It's going to be tough, but you conquer tough.

More than anything, I want you to know that the you at this very moment is so very perfect. You have come so far. The way that you walk and climb onto chairs and into the car is a miracle. You, who the doctors told us would never do those things, are amazing.

Making the decision for this surgery has not been easy. Your dad and I have been thinking, praying and talking with doctors about it for more than two years. We have been told over and over again that this could really help you move more freely. You are a great candidate. You are at the exact right age and it absolutely could not be done after the age of 18.

So we are the decision makers. 

I try to put myself in your shoes and when I do that I know that absolutely this is something I would have wanted my parents to have done fore me. 

So we are doing it for you. 

And you are going to rock this thing.



A couple of weeks ago we went out hiking together as a family. Do you remember finding all those treasures and Auggie wanting to jump into the water?

When we were out, we took some video of you. We want to remember how you walk right now. It's so beautiful and such a miracle.

When I try to imagine you after this is all over and you are moving differently, I get so weepy. You know me, crying about everything. It's just that when I look at you I can't help it. When you walk, you inspire. When you talk, you challenge.

And sometimes I can't believe you are still here. That you lived.

That I get to mother you into a grown man.

I'm so proud of you.







*A big thank you to Frances England for allowing us to use her beautiful music.

Monday, April 21, 2014

Postponed

Thank you for all the love and support so many of you have shown our family as we prepare for this big step in Sylas' life. 

We got a call today from the surgeon's office that they have an emergency surgery they have to perform on Wednesday. Because of this Sy's surgery will now be on Friday at noon PST. I will continue to keep you updated. 


Friday, April 11, 2014

Sunday, April 6, 2014

Do You Want to Build a Snowman?

It was 60 degrees yesterday.

And we had yet to play in the snow this season. 

I know many of my midwest and east coast friends are ready to murder snow, so this is unfathomable, but mostly we've just looked at it from a distance.

Nothing like a short drive up a mountain on a warm day in April to end up here.



For this.




Auggie's first time sledding. 


I think he liked it!



Also, a lot of this happened.




Then we built a snowman. He was promptly named Olaf. Can you believe the originality?






The kids hard a hard time saying goodbye to Olaf.

Farewell, sweet friend. Farewell.





Wednesday, March 26, 2014

It's Almost Here

Sometimes my chest hurts and I start to panic when I think about the surgery being less than a month away. 

6-8 weeks without Ryan.

6-8 weeks without Ivy.



6-8 weeks without Auggie.



Of course I will see them. They will come to the hospital to visit and we will have some togetherness but then they will leave, and I will not be with them.

How will we do this? 

And then I remember that 6-8 weeks in your whole life is not that long. 

And it will be worth it.

For this guy, I would do anything.


Monday, February 17, 2014

Presidents Day at Lake Tahoe

We enjoyed our day off together as a family.



And I feel so blessed to live less than an hour from one of the most beautiful fresh water lakes in all the world. 

Every time I am there I feel like I am on vacation...even if it's just for 30 minutes. 




Ryan and I took the kids on a scavenger hunt at the beach. They found soft things, prickly things, green things, brown things and beautiful things.





But mostly they tried to run away from the waves.



Or into them!



The fun ended when Sylas decided to take a swim.

 So then we went for hot chocolate.


Sunday, January 26, 2014

Selective Dorsal Rhizotomy

On April 23, Sylas will be wheeled into a sterile room and will encounter something that could change his life forever. 

He will be undergoing a surgery called a selective dorsal rhizotomy. Feel free to click on the link for more info, but in short, an incision will be made near the base of his spine and the nerves that control his sensory function will be tested. After multiple tests, the nerves that are not working properly will be severed.

It will be intense. We are told an 8-10 hour procedure and 6-8 weeks inpatient therapy.

And it's 4 hours away, in Oakland.

Last October, we went to Oakland for a series of tests and it was determined that Sylas is somewhere between a really good and a great candidate for this surgery. One surgeon told us that he would be surprised if we didn't see dramatic results for our boy. 





Exciting.

So scary.

Really exciting.

We have been talking, thinking, praying about this procedure for more than 2 years, and now it's on the horizon. We can see it. 

I've been making plans and preparations like a woman about to go into labor. 

I'm nesting.

My mom's plane ticket was booked last weekend which makes it feel more real. She has graciously offered to stay with Ivy and August during the surgery and after while Ryan works and I stay in Oakland. She will stay for the first month and I'm still working out the details for subsequent weeks. 

This is really happening. 

And I'm not sure how to feel.

Saturday, January 18, 2014

Dust

Dust has gathered. Not just in corners or under beds, but layers and layers of a thick puff that hides words and thoughts and emotions. 

It needs a good dusting.

Unsure of what this space had become, I haven't known how to do this dusting before. Why am I writing? Do I have direction? What is the purpose? 

I think I know now. At least what it will be for a time. 

We are on the cusp of something big for Sylas. It will require so much time, energy and strength from our entire family. I'm anxious and excited wondering how we will do this.

My soul will need a place to spill out it's words. To share with those we love and with those who love us. 

Some time back, my blog designer from 2011 stopped hosting my template pictures. It was old anyway, so now it's black and white. 

No fluff, just words. 

I know that dusting it off might be uncomfortable, with watery eyes and itchy skin.

But if I only try I might discover something I never knew was there.