Every Step of the Way...17 Days Until the Race

Milestones

After Joshua led the nation of Israel across the Jordan River, God commanded one man from each tribe to take one stone from the Jordan and pile them up where they stayed that night.  Joshua 4:6-7 says, "that this may be a sign among you.  When your children ask in time to come, 'What do those stones mean to you?' then you shall tell them that the waters of the Jordan were cut off before the ark of the covenant of the Lord. When it passed over the Jordan the waters of the Jordan were cut off.  So these stones shall be to the people of Israel a memorial forever."

In the same way, God has taught me to take the time to "remember all the times He's told us loud and clear - I am with you and I'm for you!"...to remember His promises.  During the times of doubt and darkness, we can look back and remember the times He has carried us through.  Even looking back to those dark days in the PICU, I forgot how bad it was - how many times we almost lost him.

Music has always been really important to me.  Some of you may not know, but I play the piano; I began taking lessons at the age of 12 and continued through most of high school and a bit of college.  I played for our church growing up, and after I quit teaching elementary school after Conor was born, I taught piano lessons until we learned of Toby's diagnosis.  God has always spoken to me through music, and for each mountain I've encountered throughout my life, God has given me verses from the Bible and a song or two to encourage my heart and carry me through.  Stephen Curtis Chapman has always been one of my favorite; I've been listening to him since junior high school.  In fact, before the days of songlyrics.com and the Internet, I used to sit and play the songs over and over to write the lyrics down (if I didn't have the cassette jacket). His latest CD just came out this week and already the first song is speaking loads into my heart, especially right now as I blog about the milestones and God's grace and faithfulness.  Here are the words.  I don't think it's on youtube right now - but I would highly encourage to buy this song or the whole CD from itunes.

Glorious Unfolding
Lay your head down tonight
Take a rest from the fight,
Don't try to figure it out;
Just listen to what I'm whispering to your heart

(The first verse especially speaks to me because I'm always trying to figure things out with Toby)

'Cuz I know this is not anything like you thought (this is certainly true)
The story of your life was gonna be...
And it feels like the end has started closing on you.
But it's just not true.
There's so much of this story that's still yet to unfold

Chorus:
And this is going to be a glorious unfolding!
Just you wait and see, and you will be amazed.
You just got to believe, the story is so far from over
So, on hold on to every promise God has made to us
And watch this Glorious Unfolding!

God's plan from the start for this world and your heart
Has been to show His glory and His grace
Forever revealing the depth and the beauty of His unfailing love
And the story has only begun!

Chorus:
And this is going to be a glorious unfolding!
Just you wait and see, and you will be amazed.
You just got to believe, the story is so far from over
So, on hold on to every promise God has made to us (this is what it means to remember)
And watch this Glorious Unfolding!

We were made to run the fields of forever
Singing songs to our Savior and King
So let us remember this life we're living is just the beginning of the beginning!

Of this glorious unfolding
We will watch and see, and we will be amazed!
We just keep on belieivng the story is so far from over.
And hold on to every promise God has made to us
We'll see the glorious unfolding!

As I was listening to this in the van today shedding many tears, I knew God wanted me to share this with you - I also realized that God has already given us just a small glimpse of His glorious unfolding.  We have been able to remember His promises and see His glory unfolding through Toby's life already - even this side of heaven...to see purpose in suffering.  I am so grateful for that.

Today I will talk about a few of Toby's milestones.
His first several years were full of doctor's appointments, therapy, bladder infections, G/J tube replacements in Interventional Radiology, sleep studies, CT scans, bladder testing, ventilator checks, blood gases, urine cultures, x-rays, an EKG, loads of antibiotics and blood tests!!  He also had a lot of digestive and belly distension issues.  This is something that would be an overwhelming problem for 6+ years until he got his cecostomy (this past July 2013).  He had barium swallow studies, upper GI scopes, and even a rectal biopsy testing for Hirschsprung's disease.

When Toby was around 6-7 months old, he finally began to smile - and he hasn't stopped since.  His smile completely lights up a room.  One of my nicknames for him has been "Sunshine" because even on our darkest days, all I have to do it look at his smile and it makes the clouds go away - truly...just look at these pictures:

This was one of his very first smiles!

He loved to fall back on pillows; even  now he loves to go fast and be twirled around; he loves roller coasters.

I can't help but laugh out loud at these pictures.

At first, it felt like Toby was always behind.  He didn't like therapy very much...well you can tell by these photos what he thought about it at first:

Oh my goodness, just look at that face!

Learning to sit up on his own.

 He often had his pacifier in his mouth because he cried all through therapy!

Starting to like therapy; this was before those ZipZac chairs - Help Me Grow therapists brought this out to help him get used to wheeling himself around.

One thing that really bothered me was that he couldn't eat by mouth.  Eating is more than just, well, eating...it can be a social event too.  After being around other mommies of kids with special needs that were similar to Toby's, we began to learn different things.  We heard about Cincinatti Children's Hospital amazing Aerodigestive Team. It's a team of doctors made up of ENT, Pulmonary, GI (Gastro intestinal), plus nurse practitioners, speech and occupational therapists, nurses, etc. that collaborate together to help kids with complex airway and digestive issues.  Toby definitely fit the bill on that one.  So, we made plans to go down there.

At 15 months of age, Toby had a huge list of testing down at Cincy Children's.  It included a FEES test, Upper GI (checking reflux), x-rays, a Bronchoscopy, and an overnight Impedence Probe to look at reflux also.  The biggest findings were Toby had a lot of airway issues - trachealmalacia, bronchialmalacia - basically a floppy airway.  They also said he had a short trachea, but the best news of all was that Toby was SAFELY SWALLOWING by mouth and could start eating.  We started with just tastes of baby food, and then it led to eating a teaspoon, tablespoon, etc.

On the left was the photo I took after three days in Cincy.  In the middle are his feeding tubes.  The white one is the feeding tube going into his small intestine with formula.  The green one was coming from his stomach, and it meant he had safely swallowed the green bananas.  They colored them green so we would know if he was aspirating or not because we would suction green out of his trach.  On the right was a few weeks later - trying it out at home.  Those are also green bananas!  Maybe that's why his favorite color is green!

This is what Toby thought of the therapist feeding him, but he gradually progressed to the far right...then this:

Feeding himself for the first time.

Today - eating pancakes!

Another thing they thought they found in Cincinnati was a bowel malrotation, where basically the intestine is twisted around and can possibly cause a bowel obstruction or even death.  They suggested he needed surgery to fix it.  After a lot of back and forth between Cincy and Columbus, we decided to come back to NCH and talk to our own surgeon about it.  She wasn't so sure he had the malrotation.  She and the radiologist here in Columbus, both thought that it just appeared that way on tests because of the way the J-tube was going into the small intestine. We decided to go ahead with an exploratory surgery anyway, and in the mean time Dr. C (who is now retired) decided to do a nissin, so we could treat Toby's reflux and possibly get rid of needing the J-tube altogether.  In surgery they in fact found that he had NO malrotation, BUT one positive that came out of this was Toby could now have food into his stomach instead of his small intestine.  This meant less time hooked up to the feeding pump - he eventually graduated to just at night, eating baby food during the day, and about 3 years ago got rid of the pump altogether when he began to eat enough pureed food by mouth all the time.

Nissin Surgery; oh my sweet boy.

This was when Garrett said that "they cracked Toby open."

Toby still has a ways to go with his eating; he's still eating mostly a pureed diet, but every day he gets better and better.  He has finally stopped asking for his two favorite baby food jars - Beechnut Ham, Pineapple, Apples, and Rice and Cinnamon Raisin Granola.  We are so thankful that we can look back and see God's glorious grace unfolding in Toby's life - the beauty from the ashes.