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Life has been difficult, emotional, filled with stress and amazing.

So many have followed this blog and continued to check in on what is happening.  To each of you, we are thankful.  As life has changed, I have neglected to update here in quite some time.  Please join me on facebook for continued life stories, experiences and updates.

Many blessings to you and each of yours!

Hello!

I can’t believe that it has been so long since I last posted. I actually had made it a goal to post twice a month, but the last month has been a bit crazy. Rob and I found a house in Pine Bluffs and an offer was made. We are now busily working on packing up all the belongings we have to move them over.

Simon is 15 months old now, actual and two weeks shy of 1 year, adjusted.  It has been a long but incredible journey with him.  Last winter we were hunkered in with no germs to come and go.  Keeping Simon well was a simple task and much more challenging now.

Simon is babbling and talking up a storm, when he feels the need.  He’s also beginning to sign a few words.  He is cruising along furniture and walls.  In short, he is doing everything that he should at 1.  Go baby boy!

We are battling a bug of sorts currently.  He has been up and down through this, but we are pushing forward.  I can’t wait to move and take him 1000 feet lower in elevation.  Hopefully the change will help his lungs tremendously.  I know the lack of wind is enough to leave me elated!

So as we begin our journey to a new home and a new life, I bid you farewell for now.

Until next time!

Amazement each day

I’m left in amazement as I think back to where we were one year ago as Simon struggled to survive each day.  We didn’t know if we would even be where we are today. Simon is almost 14 months old, actual age and quickly approaching one year, adjusted.  He’s definitely mobile, more so than I’d like and his personality is really beginning to shine through.

Aside from crawling so much (offering rug burns on his knees regularly), Simon is also pulling himself up along furniture, in his bed and along the gates that finally had to be installed.  Simon is able to tackle the stairs, though I still cringe at the thought!  Simon’s vocabulary is coming along nicely too.  He is up to NINE words now and babbles even more.

Simon has even had some pretty amazing successes in eating solid foods.  Of course he’ll chow down on an Oreo, but also enjoys toast, macaroni and cheese and some pureed foods as well.  The thickness of his bottles is slowly decreasing too.  Another couple of months and he might transition into a toddler diet.  Time will surely tell!

While Simon is thriving and spending most days off oxygen, though still dependent while sleeping, I can’t help but think about another little girl who struggles each day, for different reasons.  Darby is about twelve weeks old and had two surgeries last week due to Biliary Atresia.

Cells within the liver secrete a liquid called bile, which is made up of cholesterol, bile salts and waste products, including bilirubin. A network of tubular structures and tiny ducts form the biliary system to drain bile from the liver to the small intestine where it aids in the digestive process. Biliary atresia is the closure or disappearance of the biliary system.

For everyone who has followed Simon’s journey, looking back at the photographs taken shortly after he was born is a reminder of how fragile life is.  The following picture of Darby is no different.

NotSoAverageMama.com

NotSoAverageMama.com

As I scan over the picture, I know what each tube and line represents.  I also know the struggle that this family is going through at this moment.  They, too, live an hour and a half away and have other children to support.  The emotional roller coaster is difficult enough without factoring in the needs of your family as a whole.

stitchblade has posted and set up a donation button for Darby on her blog, Not So Average Mama.

God heals because that is His pattern for revealing His nature through His Son. With compassion, Jesus chose to touch the festering sores of the leper (Matthew 8:3). He showed mercy as He touched the crusted lids of blinded eyes (Matthew 9:29). In receiving healing from God, we must earnestly desire to touch Him as well. “People brought all their sick to him and begged him to let the sick just touch the edge of his cloak, and all who touched him were healed” (Matthew 14:35–36).

We know just how powerful prayer is in bringing one child from death to thriving.  Join us in prayer for Darby!

Relaxation

It’s been a long week between colds, ear infections and Simon back on oxygen.  As our long weekend has progressed, today has become a day devoted to good food and much relaxation.

I put Simon to bed last night on his Tucker Sling.  He’s been sleeping on his back to help with some of the congestion issues, but since they started to clear up a bit last night following a miserable nose bleed, I put him on his stomach.  Throughout the night I woke to check his oxygen saturation levels and was pleased to see that at 1/32 L he was maintaining 95%!  Where his saturation levels sit at night is a good indicator of where he’ll be the next day and if he’ll be able to spend time off oxygen.

This morning he got up, took a bottle and quickly went back to sleep for his morning nap.  When he woke, we put him in his high chair and filled the tray with various foods and let him play and eat all at the same time.  He kept pulling at his oxygen, so I took it off and let him have fun.  I grabbed his pulse ox and checked on him while he was without his cannula and found him sitting between 92 and 95%.

When Simon was ready to come out and play, he seemed to thoroughly enjoy being free to meander around without any limitations.  When he began screaming “NI NI” I made him a bottle and tucked him in – with oxygen.  He doesn’t maintain his saturation levels well enough to go without while sleeping yet, but today was definitely a great day for freedom.

The rest of us are playing.  Jaden is running around with friends outside, Rob is playing music and I’ve been playing with words.  What a fabulous way to round off this Labor Day Weekend!

September Is Here

I can’t believe how quickly this year has flown.  Rob and Jaden have ventured back to school, leaving a bit more time on my hands to write.  I’ve been busily contributing to Writers Round About as well as creating my own site and I’m working on a few different articles for parenting magazines.

Simon has been fighting a bit of a cold and has been back on oxygen for about a week or so.  I have a feeling that’s how our winter will go; off and on.

All in all, we’ve been a busy bunch.

This afternoon I got the call I’ve been waiting on for a few weeks.  Simon’s glasses were finished!  I headed out just before five to pick them up.

Yes, I took pictures.

Yes, I’ll share!

But not yet…

Simon is definitely not sure what to think of yet another item on his face.  He’s done everything he can to get the glasses off and since he needs to wear them for at least one hour today, we have put socks on his hands until it’s time to take the spectacles off.  The poor bug isn’t sure what to think, but it’s pretty amazing to watch him look at toys in a completely different light.

Hide and Seek?

Simon has found a new interest in crawling between the couch and love seat.  He likes to hide behind the table and if possible – play with papa’s guitar that Dad has borrowed.

And one more since he’s so darn adorable without oxygen!

I must confess…

I never thought we’d see this day for a long time to come.

It started last night.  I put Simon to bed and as he began to drift off to sleep, I put on his pulse oximeter.  On 1/8 L, he had an oxygen saturation of 97%.  I dropped him down to 1/16 L and waited.  After twenty minutes, Simon was still around 96%.  Again, I dropped him, this time to 1/32L.

Twenty minutes passed and Simon was still in the mid-90′s, fluctuating between 94 and 95%.  By morning he was maintaining well and as he took a short nap this morning, I checked his saturations again:  94%.

As of this moment in time, Simon is running around WITHOUT oxygen!  I know that he’ll be back on it shortly, but for now, he’s free.  Free from hoses, limitations in distance and free from pastic irritating the inside of his nose.

I can’t express how amazing it is watching Simon go without added support, even if temporarily!

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