Silas Eating

We aren't sure if Silas is having a seizure or not at the beginning of the video.  Right at the beginning  is the episode in question. There is another episode around 1:05.  He stares into space and clenches and then snaps right out of it.  This has been going on  for a couple weeks.  I have gotten a couple other videos of him doing the same thing as well.  He does this 10-20 times per day and we mostly notice it when he is playing or eating.

Happy Birthday, Silas!

Today is Silas' first birthday!
 I cannot believe he is already a year old!!! As much drama as we've had this year, I thought surely this year would drag by.  Not so.  It has flown by.

The first time we laid our eyes on baby Silas.  Who wouldn't fall in love immediately?!

Isabella meeting Silas for the first time.

Silas' first Christmas.  He was 11 days old.

It's hard to believe that a year ago today, we were going about our daily business--school, dentist appointments, etc.  Little did we know that 20 miles away a little boy was born that day and it would still be another week before we even knew he existed.  He spent his first week in the NICU because of breathing difficulties, and we brought him home straight from the NICU. It was a whirlwind once we found out about him, and brought him home just one day later.

Christmas 2011

Silas' first month was full of all kinds of concerns.  He was obviously having difficulty breathing.  He sounded like a barking seal when he breathed, and he was having noticeable apnea at night.  He couldn't keep any food down and wasn't gaining any weight.  We were going for weekly weight checks and ultrasounds and tests trying to figure out what was wrong.

 Everything came to a halt, though, when I took him in to the pediatrician for another weight check and to discuss the results of his ultrasound.  He was gray and his oxygen level was at 50%.  They called an ambulance to take him to the hospital and that was followed by 8 days in the hospital and his first operation on his airway.  His airway was almost 100% blocked because of severe laryngomalacia.  That was when we discovered he had previously undiscovered congenital heart defect and significant pulmonary hypertension.  He spent his first month birthday in the hospital.

At the ER

His second ambulance ride--going to Children's hospital.

After his first surgery, in the PICU.

His next few months were full of specialist appointments--trying to figure out a course of action for his heart and airway defects.  He was on oxygen full time until he was 3 months old and wore oxygen whenever he slept until he was 7 months old.

Silas makes even oxygen look cute! :)

On oxygen

About 1 month old, on oxygen

Silas had his first sleep study done when he was 5 months old and it was discovered that he had extremely severe obstructive sleep apnea and even with wearing oxygen, his O2 levels were dropping very low while he slept. Afterall, that oxygen does no good if you won't breathe!  It was determined that he needed another surgery on his airways. So on his 5 month birthday, he was wheeled into the OR once again.  Miraculously, he only needed one night in the ICU after that surgery and was doing so well the next day that they discharged him!

Not feeling so well after his 2nd surgery

Sleep study--not much fun!

Another sleep study when he was 7 months old determined that he was much better off sleeping on his belly because his poor muscle tone was allowing his tongue to fall back into his throat and cut off his air supply.  On his belly, his tongue falls out of his mouth and he can breathe freely.  That change, combined with the dramatic improvement to his breathing from his surgeries, allowed us to finally get rid of the oxygen tanks in August.  Yay! We were so excited.  (But I will say, having a child on home oxygen is definitely a pain, but it is quite doable once you get used to it.)

Happy and healthy, around 5 or 6 months old

Getting an EKG done--he gets one every few months

We have also discovered that his ASD continues to close on its own.  So what was once considered to be a significant heart defect is now being classified by his cardiologist as a mild defect.  We praise the Lord for healing his little heart without surgical intervention!!  With a healing heart, adequate oxygen levels, proper nourishment (we discovered that he is severely allergic to milk and soy), fixed airways, and good sleep, he is now thriving.  His second 6 months have been a night and day difference from his first sickly 6 months.

Silas is now a happy and alert baby.  He loves to watch people--to the point of craning his neck to follow you.  He has struggled with eating off of a spoon because of tongue thrust, but he is a champ at eating finger foods.  He is learning to drink out of a sippy cup.

Silas is crawling and pulling up on objects (as long as there is something he can easily grab onto.)  I don't think he is anywhere near walking yet, but that is okay with me.  He's already a mess just crawling.

He is doing sign language and adds a new sign or two each week.  And his new game is to play "put it in, take it out."

Holding his own bottle

Standing up to play with toys

We are so thrilled at how well Silas is doing right now.  We think back to his first 6 months and we also think about all the other babies with Down syndrome who really struggle even for their very lives because of a lot more severe defects.  So we don't take anything for granted.  We pray that he will continue to thrive in life and stay healthy.

Beautiful little boy with an amazing personality!

Christmas 2012

So, this first birthday is so meaningful to us! We have been so blessed to be chosen to be Silas' parents.  I always wanted a child with Down syndrome, and God gave Silas to us.  He is such a gift and we are thankful every day--for the trials and the triumphs.  And I must say that I am so thankful to Silas' wonderful birth family for allowing us to be his parents.  Happy birthday to our little miracle!

For fun, here's a month by month run down of Silas' development and growth:

One month old

Two months old

Three months old

Four months old

Five months old

Six months old

Seven months old, apparently starting his underwear modeling career

Eight months old

Nine months old

Ten months old

Eleven months old

Not quite his birthday, but close!  He is about 18.5 pounds now and wears size 9-12 month clothing. He is currently cutting three teeth, which puts the total number of teeth at 7.

Silas is Official!

On August 8th, we went to court and finalized Silas' adoption.  He's now official!

This past month

I have a ton of pictures from this past month, and they are pretty random.  So I thought I'd just post them all here and explain each one in the captions.  Warning...there are lots of pics, and they are mostly random, so hold on for the ride!

We picked out a yellow fleshed watermelon at the farmer's market.  It was yummy!

I got my new ring.  For those of you who don't know my ring allergy story, I hadn't been able to wear original wedding/engagement ring for several years.  I have a bad nickle allergy, and we had sent my white gold ring off to be rhodium coated, but they nickle coated it instead.  It made my finger blister.  So, I finally got a new one.  Thankfully the jewelry store let me trade my other one in towards the new one. I went in a completely different direction from my previous ring and got a solitaire.  Love it!

Joshua giving rides to his cousin Jeremiah.  All the boy cousins were riding around on each other.

I have been wanting to start a little side business on etsy for a while.  I wasn't sure what I wanted to sell though.  I think I found just the thing.  I was "hired" to make paper flowers for my sister in law's wedding.  I really enjoyed it, and they turned out well.  So I think I may go into business making paper flower wedding bouquets.  There is a demand for them.

At Curtis' sister's wedding.

Bella was so happy to "princess dance" with her daddy.

Silas got passed around.  He loved the attention from everyone!  He cried for a couple of days when we got home because he wasn't happy that I wasn't holding him non stop.

Another ride on a cousin.

Micah asked Meredith to dance.

Let me tell you, Bella was a dancing machine!!

More cousin love!

And even more cousin love!!

Liliana dancing with Curtis' uncle Robert.

Dancing

Remember, I promised a random post! :)  This is my squeaky clean shower door.  I followed a simple recipe for soap scum cleaner that I found on pinterest.  The door is so clean, and I didn't have to scrub at all!  Equal parts hot vinegar and blue original dawn dish soap.  Spray it on.  Leave it for a couple of hours or overnight, and wipe off.  Magic in a bottle.

Happy, smiley baby! (This was before his first tooth started coming through.)

The kids watching the giant hornet that landed on the window.  It was neat to watch it up close without getting hurt.

"Silas, can I read to you?"

Looks like Silas loves books!

The kids decorating pillow cases with fabric markers.  Abe drew everyone in his family, plus a sweet little girl from church. :)

Liliana didn't want me to take a picture of her work. :)

Bella drew Momma and Daddy holding hands on her pillowcase.

Josh's pillow case cracked me up and amazed me at the same time.  He drew Jesus on the cross with a person sticking a spear into his side.  He said it was to remind him that Jesus died for his sins every time he laid down.  I hope that will be a good reminder for him every time he's sitting on his bed when he's in trouble. :)

The first day of the new school year and new grades.  Liliana (4th grade), Micah (3rd), Malachi (2nd), Josh (1st), Bella (Kindergarten) and Abe (pre-K).

Liliana knitting her first lace shawl.

Bubble bath fun!  After they took their bath, I reached in to unplug the drain, and the water was so dirty that I couldn't even see my hand in the bottom of the tub.  Ewwww....

This is the Star Trek TNG tea towel I cross stitched for a wedding present.  Curtis' family is obsessed with appreciates Star Trek, and my appreciation for the show has grown as well.  There.  I said it.  I like Star Trek. I may have to make a few more of these.