How Do You Eat an Elephant?

(Warning - some photos that might make you squeamish - and a longer post today, but please don't give up on us and read it until the end!)

The race is in four days.  Tonight I did a 4-mile run, and it's the best I've felt running in several weeks.  I think my body is just tired, and our long runs on Saturdays, haven't been the best. I have lowered my expectations this year on my time - past years I've been able to run it under 2 hours, but I'm not expecting that this year - just to finish and still be healthy and whole at the end.  A song that a friend recently shared with me by Mandisa has just been added to my iPod running list.  It's called Overcomer.  I still can't listen to the entire song without getting choked up.

Just a few of the words:

You're an overcomer
Stay in the fight ‘til the final round
You're not going under
‘Cause God is holding you right now
You might be down for a moment
Feeling like it's hopeless
That's when He reminds You
That you're an overcomer
You're an overcomer

Everybody's been down
Hit the bottom, hit the ground
Oh, you're not alone
Just take a breath, don't forget
Hang on to His promises
He wants You to know

The same Man, the Great I am
The one who overcame death
Is living inside of You
So just hold tight, fix your eyes
On the one who holds your life
There's nothing He can't do
He's telling You 

What hit me as I listen to this is that we are all "overcomers" or can be through Jesus.  We can overcome the greatest obstacles with strength from God.  I thought about Toby and how much he has over come. I think of myself as an overcomer - over coming despair, faithlessness, bitterness; I'm a fighter and I want to win this fight against the Spina Bifida that threatens to keep us down!  Then, I thought about so many that I know who have lost loved ones to death.  Have they overcome?  Can we be overcomers in death?  Don't miss this....

The answer is yes.

Because Jesus is the Great I am, and He overcame death when He died and rose again - even death can be overcome.  It comes when any person puts their personal faith in Jesus - His death, burial, and resurrection - a surrender of our lives to Him and He comes to live inside of us.  (see the last verse of Mandia's song). That even when death claims our life, we can still ovecome because to know Jesus is to have eternal life withHim in heaven.  There is NOTHING He can't do because He has overcome even sin, hell and death.

When Bruce and I were dating and I was overwhelmed in my finals and studying as I finished up college, he shared this quote with me:

"How do you eat an elephant?"

"One bite at a time!"

In many ways that is how we have to approach this journey of life - one step at a time, one day at a time walking in faith.  We don't know the end result, we don't know the outcome, but we can walk through it by faith, holding the hand of the one who holds us!

In dealing with Toby's scoliosis or curvature of the spine, we have learned to take things one step at a time. Just when I think there's an end in sight, another curve ball is thrown our way.  Scoliosis is very common in kids with Spina Bifida.  When there's damage to nerves that also means nerve signals aren't being sent to the muscles, which makes them weak and atrophied.  This is also true of the muscles around the spinal cord that keeps it straight.

About every 6 months, Toby meets with a team of doctors in something we call Myelo Clinic, which is short for Myelomeningocele clinic or the Spina Bifida clinic.  This is a day where we see all the doctors, nurse practitioners and therapists related to the main conditions Spina Bifida causes.  It's typically made up of neurosurgery, orthopedic surgery, urology, physical medicine, and a developmental pediatrician that specializes in kids with SB.  We also see physical and occupational therapists, a neuropsychologist, and typically the main guy that does walking braces and another that does wheelchairs/adjustments is also there. It can be a VERY long day to say the least.

In March of 2010, Toby had an x-ray of his back at clinic, and it showed that his spine was beginning to curve.  I can't remember exactly what he curve was, but it was slight - less than 20 degrees, I believe.  By the fall, it had progressed to 41 degrees, and the doctors began to get concerned.  I was concerned too because his little ribs on his right side began to stick out; I noticed it most when he was sitting independently on the floor or in his bed.

One of the main reasons kids' scoliosis can worsen so quickly is because of something called a tethered spinal cord.  As soon as neurosurgery heard about Toby's scoliosis, we were scheduling appointments and MRI's to see if this was the case with Toby.  Almost all kids with SB have a tethered spinal cord.  This is where the lowest part of the cord is tethered or stuck to scar tissue from that initial back closure surgery as a newborn.  It can require surgery to untether or release it from the surrounding scar tissue if a patient is having symptoms.  Some of the main symptoms are pain, a change in a person's walking ability or gait, scoliosis, and a change in bladder or bowel function.  Toby's main symptom was scoliosis.  At first, Toby's neurosurgeon wanted to explore the function of Toby's shunt because all of that can be related.  November 9th of 2010, Toby had an MRI under anesthesia that did show some issues with his shunt and so he had surgery.  

 

Unfortunately, the catheter in the brain wasn't draining the excess cerebral spinal fluid well enough, and Toby wasn't acting right at all (see photo on right).  The doctors ordered a quick MRI to check the ventricles in his brain to see how large they were.  The very next day the nurse practitioner broke the news that he needed to go back into surgery to move the catheter.

After the shunt surgery, the doctors wanted to follow up with another MRI that next spring to see how things were going and if he would need his spinal cord released.  In my opinion, there seems to be two major common surgeries in kids with Spina Bifida that are the most feared: spinal cord detethering and Chiari II decompression surgery.  It's understandable, in both surgery is performed in very sensitive areas - the spine with all of the nerve fibers and the second is taking out skull bone to make room for the brain stem.  After another MRI under anesthesia in March of 2011 and much discussion with the neurosurgeon, we decided to wait on the detethering surgery.  Hindsight is always 20/20 and looking back I have often asked myself if I should have pushed more to have the surgery done.  Did we make the decision to not untether because of fear?  Would Toby have needed the rods in his back at such a young age?  I honestly think the answer is "yes".  We should have done that surgery then. I don't know if it would have stopped the need for rods, but I think it would have slowed down the progression of his scoliosis because his spine would have been free to grow with his body, but instead it was tethered and as he grew it curved.  I certainly don't walk around in despair, but I also wish that maybe we wouldn't have feared that surgery so much and taken a different path.

At first, the orthopedic surgeon decided to try back bracing to slow down the scoliosis progression.  As you can tell, Toby hated it.  It also was the cause of his autonomic issues, where he would turn red on half his body (see last post). 

After we figured out this back brace wasn't going to work.  Next on the list was a night-time back-bending brace.

This "THING" as I'll call it was constantly causing issues, rubbing and redness.  It sort of looks like a medieval torture device.  We had to have it adjusted so many times I lost count.  However, it did work for awhile.

Then, Toby began to get some pretty severe redness and chafing from the brace even with adjustments, and I knew something wasn't right.  Last September at a routine Myelo Clinic appointment the bomb was dropped.  Toby's scoliosis was past 50 degrees and it was time for VEPTR surgery.  VEPTR stands for Vertical Expandable Prosthetic Titanium Rib.  These are two titanium rods that are attached in two pieces if you will - from rib to rib and rib to hip.  Every six months an extension or growth surgery has to be done to make them longer so they will grow with the child.

Before the rods could be placed, a spinal cord detethering needed to be done. The thinking behind this is when you straighten the back - if the cord is still attached in the lower part of the back, the scoliosis will worsen instead of getting better - especially with each extension surgery.  When Toby had his done, he also had his shunt checked just in case.  This was October 23, 2012.

Around three weeks later, on November 12th he had his first VEPTR insertion.  Right before this surgery, he got really sick.  It was the worst respiratory sickness he had had in a very long time.  He was needing oxygen and more time on his ventilator.  He had RSV.  It was crazy, but they allowed him to go through surgery because he needed to have it so desperately.  The anesthesiologist was one of the best NCH has.  Toby has had him for several surgeries, and he reassured me that he would be okay -they would take good care of him.

Before and after - look how straight and tall he is.

Then, just a few weeks later our world came crashing down.  We went to Michigan to visit family for Thanksgiving, and I noticed that there was some bleeding under his dressings from surgery.  It didn't look good, but we waited it out through the weekend, and Monday morning headed in to see the orthopedic surgeon.  The rods were causing a wound from the inside out and would need to be removed.   So, on Nov. 28th he had his 3rd surgery in just over a month, and this time they also had to place a wound vacuum.  He was also on three different antibiotics for six weeks because of infection.  (WARNING - these photos are not for the squeamish)

The above photo is the progression of the healing of his wound.  Now, you can't even really see the scar.
Unfortunately, things weren't over yet.  Just a few weeks after this, I noticed Toby had a huge lump on his left shoulder.  At first I thought his shoulder had popped out of place, and later realized that his rod had popped off his rib cage.  We think the left side just had too much pressure on it because the right lower piece that goes from rib to hip had been removed.  On December 11th, he had his fourth surgery in about 6 weeks - this time all the rods were taken out and the plan was to try again the next spring.

Those six months were pretty rough for Toby.  His stomach, intestines, lungs, etc. were so compressed from his almost 70 degree curve at this point that nothing was functioning as it should.  In early April 2013, Toby was admitted for borderline pneumonia.  He wouldn't be able to have rod surgery if his lungs were collapsed.  His digestive system also wasn't working properly, and even with nightly enemas, he was so constipated that everything was pushing up on his lungs.  Finally, on April 23rd Toby had his VEPTR re-insertion surgery.

It's always amazing to me to see the progression from right after surgery to discharge date and then several weeks later.  Then, just recently in late August we learned that the lower rods on his left side were indeed migrating through his hip bone, and he needed another unplanned surgery.  On September 6th, he had his 5th related VEPTR surgery in a year (not counting the spinal cord detethering, port surgery in June, and cecostomy in July of 2013).

This is an x-ray photo of what the rods look like on the inside.  It's amazing to me how straight his back is, and so far things are doing alright.  We head back next week to see what the doctor thinks.  Everyone is always asking how things are going, and the fact  is the rods can break, pop off, or cause issues at any moment.  Just because he is 6 weeks post-op or even 6 months doesn't mean he can't have issues.  It's always a game of waiting for the other shoe to drop.

I hope you can see why I posted about THE Overcomer.  Toby certainly has overcome so many obstacles in his life, and I know he will face many many more.  What I really want to convey through this post today is that I can say with all certainty that God is holding us, just as the song says.  I can truthfully attest that He is holding me through every one of these surgeries, recoveries, post-op appointments, and bad news.  He has been the rock that I stand on, the light in the darkness, the mercy and grace that I need to face every challenge. He holds my life and my boy in His hands, and I know that His plans for us are better than anything I could come up with on my own and one day He will get the victory over all of this when I see Toby running in heaven.

Every Step of the way...7 Days

I can't believe it's one more week until the race; again if you feel led to give to Nationwide Children's on behalf of Toby - you can click here.  I also know we skipped a few days this past week, so this little series on Toby, may extend beyond race day.  In my mind, that's okay, because Spina Bifida Awareness month goes all through October.

At the same time as Toby began to learn to talk, he was also weaning from his ventilator.  It started as just 20-30 minutes at a time, and slowly moved to an hour, then two.  I can remember the first few times we held him without the ventilator tubing hooked up - it felt like he was free for the very first time.

These are photos of my dad (top right) holding Toby for the first time off the ventilator.  The other are of Toby playing airplane through the house.  He loved to play that game.  

He finally has graduated to only needing the ventilator, when really sick or sleeping.  This has been a great blessing because it gives him more freedom, but there are times I really wish we could be rid of the ventilator and the trach completely.  We've had nursing care in our home since March of 2007 - that's 5 1/2 years of 8-9 hour day shifts and 8 hour night shifts.  Sometimes, we really want our home back to ourselves.  In the fall of 2011, he had a sleep study to see if he could make it through a night without vent. support.  They tried for awhile, but his oxygen dropped into the 50% range, and he had times where he didn't breathe for 30 seconds.

As you can tell from these photos, he HATES sleep studies.  It is not fun having all of those probes glued to your head. 

His pulmonologist and the sleep study doctor continually remind me that he needs the good sleep at night to grow and get the energy he needs during the day. Even at the age of almost 7, and with his frequency of recent surgeries, he still needs a nap several afternoons a week.  He's just so tired - it requires so much energy for him to be active and do "normal" kid things.  He's actually due to have another sleep study in November because he hasn't had one in awhile.  We'll see what happens.

In all this push for some normalcy for Toby, and I realize sometimes I push too hard, we have times we are reminded how medically fragile he is.  In the fall of 2011, Toby was complaining of stomach pain while he was sitting on the potty for his bowel program.  He also retched a few times, but can't vomit because he has a nissen fundoplication.  Some doctors say technically he can vomit, but he never has since he had the surgery for it.  When we went to put him to bed his heart rate was over 170 beats per minute, and his legs were jerking up.  When Toby complains of pain, you know he's in pain because 1) he has a really high pain tolerance and 2) he has reduced feeling from his waist down because of paralysis from his Spina Bifida.  That night we had the nurse watch him closely and held back his fluids.  The next morning, he looked awful.  He was pale, eyes were sunken, and his arms were really cold.  He began to have an episode that we call the Harlequin sign.  This wasn't the first time, but basically it's where you turn red on half your body and your autonomic system is going crazy.

It's a little difficult to tell in these photos, but if you look closely you can see one arm of Toby's is bright red and the other half is normal color.  This is the Harlequin sign - and happens when Toby's body is in distress.

A few minutes later he said, "Mom, I want to go to the hospital." When our day nurse arrived at 7:30 a.m. she realized he had no bowel sounds and his capillary refill was around 6 seconds - his right arm was turning purple...very purple.  We called the squad, and they rushed him to NCH.

As the morning progressed Toby's right arm began to look more purple - in fact I remember thinking it looked dead.  A few minutes later a nurse came in and I mentioned to her that I was really very worried about him - she walked out and in a matter of minutes they had moved him out of triage into Critical Care. Then, things got really sticky - they couldn't get temperature readings from the under-the-arm thermometers and his blood pressure readings were 80's/40's.  They FINALLY got an IV in, took cultures, labs, and gave him fluids.  Then they did the typical Limited MRI to check if his shunt was functioning and an x-ray series of his shunt tubing to see if it was disconnected anywhere down the line from his brain into his abdominal cavity. They realized looking at the x-rays of his stomach that there was a lot of air and stagnating liquid in his intestines, so they put in a consult to Pediatric Surgery, and ordered a belly CT scan with contrast.

Around 6:45 p.m. that evening, Toby ended up in surgery for a bowel obstruction.  I remember the surgeon saying that she thought he may have scar tissue in his belly from prior stomach surgeries that could be adhering to his small intestines and twisting it off.  If surgery lasted longer than 2 hours, we would know that he lost intestines and they would have to re-section them; less than that, then they were able to save everything.  I sat in the surgery waiting room with Erika (Bruce was home with the kids) - waiting and waiting and waiting.  While you are waiting a screen tells you by a code where your child is in surgery.  After a few hours, I hadn't heard anything and began to get really nervous.  I called up to the pulmonary floor where they already had a room waiting for us and they told me the PACU (Post Anesthesia Care Unit) nurses were looking for me, but couldn't find me.  Usually, the surgeon will also come out afterwards and let you know how surgery went.  A little while later his code disappeared from the screen.  I ended up calling back up to the floor again begging someone to call down to the PACU and find out where he had gone.  Finally, I learned they had taken him straight to the Pediatric Intensive Care Unit, and was doing okay.  Finally, the surgeon came in briefly to talk to me, and I headed upstairs.  It was a very long night, and unfortunately our nursing care that night was one of the worst we had experienced at NCH.  As soon as I walked into the room, one nurse looked at me and said, "You need to go back downstairs and get a permanent parent badge."  (I still had a temporary sticker on from being in the emergency department all day).  Now, this was something I already knew about - in fact - I had just walked past security to get up to the floor.  They had stopped me, but I asked if I could go up to see Toby because I was so frantic not knowing how he was. They were fine with me returning later that evening.  Needless to say I was pretty furious and upset.  On top of all of that, Toby was asking for a drink literally every 5 seconds because he was so dehydrated.  The nurses were ignoring me and him - trying to figure out his pain pump.  When I finally had a moment to go back downstairs to patient admitting to get my permanent parent badge, I called Bruce and sobbed.

Toby was miserable - poor baby...

He had an NG (nasal - gastric) feeding tube to help drain air from his belly and fluids, and they had replaced his normal small Mic-Key button for a larger tube - again to get all the air out of his intestines.  In a nut shell, all of his bodily fluids had gone straight to his intestines, and he was bloated and dehydrated.  It was heart breaking to hear him asking for something to drink - literally every five seconds.  We were able to dip those pink spongy teeth cleaners in water and moisten his mouth.  He couldn't have anything to eat or drink until they made sure his intestines were awake from surgery.  Finally after a few days in the ICU - Toby began to feel better and he was released two days before Thanksgiving.

A few weeks ago, I had someone ask me what has been the greatest life lessons we've learned through our experiences with Toby.  The biggest lesson has been dependence and trust in God.  Second to that, though, is thankfulness.  I have learned that in any circumstance we are in - there's ALWAYS to be thankful for, and honestly even in the darkest of moments it has changed my perspective.  In this situation, I was so thankful for a nurse that knew to listen for bowel sounds, a great group of EMS guys that know Toby, and the fact that his surgery was done just in time - any later and he would have lost intestines.  I often go back to this verse:

I Thessalonians 5:18 "In everything give thanks, for this is God's will for you in Christ Jesus."

It doesn't say to give thanks for what you are going through, but "IN" it - and it's God's will for us to give thanks.  I will say it's an exercise of discipline to do this in any type of situation, but I guarantee every time, I've found a huge list of things to be thankful for, especially the comfort, grace, and mercy of my FATHER walking with us in this journey.

Every Step of the Way...12 Days

This week my posts are not going to be as consistent because we have family visiting from out of town.

If I had to choose between Toby being healed enough to walk or talk, I would choose the latter any day. When any person gets a trach, they lose the ability to talk with their mouth.  The trach bypasses the throat/vocal cords in breathing through the mouth and nose so the vocal cords aren't vibrating to produce sound.  When I made that realization, it was pretty devastating.  There were days when we had to rely on the ventilator alarms or pulse oximeter to let us know when he was upset because the high pressure alarm would go off or his heart rate would be so high from crying that alarm would go off.  Watching your child cry with no sound coming out broke this mama's heart every time.

After Toby began to be able to hold his head up and sit up with some support, we began to teach him sign language.  I just "happened" to come across the Signing Time DVD's at the library, and we were hooked. Rachel Coleman's personal story is one that many mothers of special kids can relate to - I personally connected with her not only because of her daughter Leah, who was born deaf, but also her daughter Lucy, who has Spina Bifida and Cerebral Palsy.  The first video we watched was "My Favorite Things", and at the end of the video there's a song called "Shine". I remember sitting in front of the television with tears running down my face.

Sometimes I see you stuck
For such a long time 
A daily nothing new
Pretend I don’t mind
With lists of things you’ll never do 
Until somehow you do 
And you do — you do — you shine

The days and months and years, 
they run together
Is it just one day? Or is this forever?
You’ve taught me in your lifetime
More than I’d learned in mine 
And you do, you do, you shine

Shine Shine Shine Shine Shine
Shine your light on me
Shine Shine Shine Shine Shine
everyone will see
Shine Shine Shine Shine Shine 
I’m so glad you are mine
And you’ll shine in your own time

Well, maybe I’m too close to see you clearly
Or is it now my role to simply believe?
You’re just one of those mysteries
That may never be solved in time
But you do — you do — you shine

And Sammy will do what Sammy will do when Sammy is ready to do it 
And Trevor will do what Trevor will do when Trevor is ready to do it 
And Lucy will do what Lucy will do when Lucy is ready to do it
And they’ll do it in their own time

This song made me realize that Toby would "shine" in his own way and in his own time.  He was going to pave his own path, and God's plan for Toby was just that - just for Toby. In some ways it took the pressure off.  It didn't matter if he was developing as quickly as his siblings or meeting that list of requirements on the developmental milestone list you get from your pediatrician's office.  Toby is uniquely "Toby" just as Conor, Garrett, and Caris are uniquely themselves, and God's plan for their lives is individual to each of them.  I've also learned that for our family - our main goal is to SHINE the love of Christ to others - so they can know His hope, His love, His plan for their lives, and God was and is doing that through Toby.

So between 20-22 months of age, Toby began to make noise around his trach.  He had a bit of an air leak, which means some air would go over his vocal cords, and he began to babble. We were constantly getting the camera out to take video, and as you can see her - this is what Toby thought of us trying to get him to talk!

Slowly, slowly we began to hear some words.  He said  "baby" and "mama" around 26-27 months - so he was well over two before he really began to "talk".

I remember the first time we had to tell him to "be quiet!"  I never imagined that we would tell him that. I also want to take a moment to thank his speech therapist.  He began working with Miss Jen when he was around 2 1/2 years old; I remember specifically asking our ENT Nurse Practitioner if there was a speech therapist that knew how to work with kids with trachs in teaching them how to talk.  Enter: Miss Jen. She has been working with Toby for almost 5 years now, and he has come so far under her therapy. Another reason he's done so well is his ability to wear a passy-muir valve.  This is a special device that can be used in ventilator tubing or directly on the trach.  It forces the person to move that air up through their mouth and nose.  When he used it in his ventilator tubing, he didn't do very well.  The high pressure from ventilator breaths was too much for him to handle, but once he began to wean from the ventilator, he tolerated the valve really well.

Toby's Grandpa Holt loves to sing and play the piano.  He would come over even and he and Toby would practice singing - even before Toby had the breath support to sing a full sentence.  Now, Toby can sing an entire song, and has the breath support to do so.  His one vocal cord still doesn't move exactly like it should, which causes his singing to be off key at times, but it doesn't matter.  "Make a joyful noise unto the LORD!"
The first time we heard Toby sing "Jesus Loves Me" with Grandpa - there wasn't a dry eye in our house. Enjoy this video also (I wasn't able to put it in the blog - so here's the link to youtube).

Every Step of the Way...14 Days Until the Race

Some of you may be wondering if Toby will ever walk, so today will answer that question.  Our hope and prayer from the very beginning was that Toby would learn to walk.  A lot of his movement (rolling, sitting, crawling) was really delayed not just from the paralysis in his legs, but also from restriction of being connected to the ventilator tubing.

We began using these pedi-wraps to straighten his knees and give him stability in his legs.  You can see here, he's hooked up to his ventilator, but still practicing his standing.  After this we had to advocate very hard with the physical medicine doctor to write him a prescription for braces.  It took several months to convince her to give Toby a chance, instead of deciding for him that he would never walk.  His first set of braces were HKAFO's (Hip, Knee, Ankle, and Foot Orthotics).

Toby seemed to be making some progress, but he really has little knee or foot movement, so all of it comes from his hips.  We realized pretty early on, that he would either need a really strong upper body to do a swing through gait or reciprocating gait by using his hip flexion to move one leg and then swing the other leg. He also has a significant leg length discrepancy where one leg is longer than the other, so he's also had to have his shoes adjusted.

Then, he outgrew his first set of braces, and we moved and switched therapists.  This time they decided to try HKAFO braces where the knees were completely stiff and couldn't bend.  It seems great in theory because it gave him so much stability, but they weren't practical at all.  For instance, he can't ever wear them outside of therapy or in practice walking because the knees were always bent:

The process of getting casted for braces can appear medieval in some ways, but it's painless, and doesn't take very long!

Toby's also had a mobile stander that we purchased used to help him put weight on his legs.  He loves it when we get him into it, but with these recent back surgeries, he hasn't had an opportunity to use it as much:

In the past year, with his severe scoliosis, and the titanium rods holding his spine in place, we are realizing that most likely Toby isn't ever going to walk independently (outside of therapy).  I'm learning to accept that he's going to be a full time wheelchair user, but I have to be honest it's really a struggle.  He's lost a lot of function even in being an independent mover - sitting up on his own, going from lying to sitting.  The permanence of it has been very difficult to accept.  We don't even know how many wheelchair sports he'll be able to play because one wrong move and those rods can break.  I'm learning to truly take this one day at a time.  We do not want to put Toby in a box, and an amazing invention or alternative treatment for scoliosis could come out next year that could change his life.  He may decide at the age of 9, when he understands how his body functions that he wants to try walking again, and we'll let him. For now, I cling to the promise that God's plans/ways are not my own - and He has a perfect plan for Toby's life - even if that means he's in a wheelchair all the time.

Every Step of the Way...16 Days Until the Race

Toby began to really grow and change; he was finally hitting some milestones, and he began to get ornery.  A ventilator has auditory alarms, so if it becomes disconnected or has too much or not enough air pressure you will know it. I can't even remember how old he was, but he learned around 16 months or so how to cause too much air to come through his ventilator tubing to set the alarms off so we would come running and see what was the matter.  He also would untie the ties that held his ventilator on to his trach so we would see what would happen.

Some of his favorite play things were his suction tubing, suction catheters, and ventilator tubing, etc. I love these above photos because he was sneaking into his suction bag to see how much he could unload out of it.

His favorite play things!

We also learned fairly early on that Toby had a really fun sense of humor.  He would laugh a lot, and even now he says a lot of really witty things that just crack everyone up in the family.

In this picture, Toby hid his pacifier inside of his onesie, and you can tell by the middle photo that he thinks it's very funny.

At first when Toby came home from the hospital on a ventilator full time, I had little hope that he would ever be able to walk or handle a manual wheelchair.  With all of that equipment - where in the world would you put it on a manual chair?  Our first chair was an Otto Bock Kimba.  It was a medical stroller that had a ventilator tray underneath; a place for the HUGE car battery we needed to give the ventilator power (before lithium ion batteries for ventilators),  oxygen tank holder, etc.  It was great, but it was very heavy.  I do remember being so excited when we graduated from the double stroller - with Toby in back and ventilator in front to the Kimba.

Here's the Kimba; and oh my goodness those cheeks:

Around the age of 22 months we began to talk to Help Me Grow, who did therapy in our home through the county about a manual wheelchair.  They worked it out with Columbus Medical to outfit a manual chair with a ventilator tray on the back.  Some doctors, etc. had told us that it couldn't be done; but the guys there work (and are still) working miracles.  Today, a new friend's son has this chair - it's actually been passed on to two kids we know in the area with Spina Bifida - both of them have trachs.

Now, that ventilator weighs about 17-18 pounds.  It's heavy, so at first it took him awhile to be able to move that chair very well, but he did it.  When Toby was a little over 3, and we had to give the chair back to Help Me Grow (they graduate out at the age of 3 and are then serviced through the counties' board of developmental disabilities); we began to look at other chairs for Toby.  At the time, I will admit that I didn't do enough research, and just accepted what they told me insurance will cover.  Toby was just coming off of his ventilator for short periods during the day time, so they did outfit this chair so it would also support a ventilator. We had to plan for the "what-ifs" at the time, and unfortunately it made the chair extremely heavy.
This is also the chair he has now, although it's been modified recently to make it lighter.  We are hoping in a few years he can get an even lighter, sportier chair.  Stay tuned, tomorrow we're going to share about walking and talking!

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.

Every Step of the Way...18 Days Until the Race

It's hard to believe that the race is 18 days away.  This will be my third half-marathon, and Bruce's first. After 13 years of marriage, he's finally running with me again.  Every year I finish and think I'll take a break next year and give my body a rest.  About one week after every race, I am ready to do it all over again.  I run because it is a great way to release stress - pumping out those miles under the rush of adrenaline. It's a time to pray and regroup.  Last, but not least I run for Toby - because he can't.

Some of you may not know, but I actually have the opportunity to share our story quite frequently during the year.  I belong to a group at Nationwide Children's called Family as Faculty.  We are parents sharing our stories to hospital employees about what Family Centered Care looks like.  Our three main goals are to show: kids are kids all the time even when they are sick; kids are a part of families with interests and lives outside of the hospital; and the BEST care of kids comes through a collaborative effort between patients, families and their caregivers.  At the end of our presentations we open it up for questions.  We tell our audiences that here is the one chance they have to ask us any questions, to get the family's perspective.  This last time, I spoke to a group of nursing students, and it was a really great group.  I had tons of questions - some of them were pretty difficult.  One question recently (and I get this one a lot) is how do Toby's siblings handle everything.  Today's blog will answer that question - through a lot of photos!

I would like to think that they do really well - at least it seems like it from the inside.  Our kids were very blessed to be around Evan so much that when Toby came home with all of his equipment, they were sort of "used to it."  It wasn't a big surprise to them.

This is a set of my favorite pictures of Conor and Toby together.  I think Toby was trying to get his glasses!

One part of my personality, whether a blessing or curse, is needing justice and fairness in my life and the lives of those around me.  I try to keep things equal for the kids.  I know that at times this is dangerous and very impractical, so God is teaching me that everything in life isn't fair (obviously - we are living that out), but also that we need to teach/correct/instruct/rebuke our kids based on their personalities and learning styles.  I'm learning (focus on learning) to show my love to them according to their love language.  I'm also learning how to home school according to their learning needs.  HOWEVER, one advantage to this, is we try very hard not to allow Toby's hospital stays to interfere too much with their own events - like sports or birthday parties, etc.  We try to allow them to have their own interests/lives outside of Toby.  In a gentle way, we also point out to them the many things they can be grateful for.  They have experienced many fun and exciting events because of Toby.  They have had opportunities beyond anything most kids experience at their ages - Blue Jackets games, Crew games, events with A Kid Again, being on the television show - Tanked, etc.  So, even though some days can be really tough as Toby's sibling, some days are really fun too!

Each of the kids has a unique relationship with Toby.   Conor is his protector and a bit bossy, which lately has been a good thing.  He's been the one sibling who can motivate Toby to eat his solid food at every meal. He's good at thinking of ways Toby can participate (he's also good at this with his friend Evan).  When he first came home, he loved holding Toby - would read to him, and wanted to always be with him.

When Toby came home, Garrett was so little, so he didn't care too much about holding him, but that later changed.  He is our empathetic, bleeding heart. One time when Toby had surgery, and they came to visit he said, "They crack Toby open" and  "It's not fair."  He wanted Toby to come home from the hospital, and he was 3 1/2.  One time, Toby was crying during a trach tie change (those white ties that keep his trach in his neck), and he thought we were hurting him.  He said, "The nurse made me mad!"  He's also my kid that runs from the room with a queasy stomach if too many secretions come flying out of Toby's trach.  He's also the one that I think the instability of those first few months really affected him the most.  He turned 2 when Toby was in the hospital, and I think emotionally it caused too much instability.  I really have to work hard to communicate with him all that is happening when Toby goes in the hospital, so he doesn't fear the unknown.
Just a few months ago, I had to sit down and explain what Spina Bifida is, why Toby has a trach, a feeding tube, and a ventilator.  I just assumed he knew, but he was too small to remember when Toby came home with all that equipment.  I have to remember NOT to assume anything when it comes to Garrett - he has to talk things out.

Caris is Toby's playmate.  She is pretty mature for her age, and Toby is immature in some ways, so it makes it a perfect fit for them to play together.  She likes to pretend, and I can see how developmentally she has really helped him a long.  Sometimes, I laugh and cry when I'm quizzing Toby on letters, shapes or colors and she knows them before Toby!

When Toby saw Caris at birth, it was love at first sight.  We were so nervous about it because prior to this Toby was afraid of babies and toddlers...but his little sister was a completely different story.

Toby used to HATE having pictures taken with his siblings.  He would cry and cry.  I also laugh looking at the middle photo because Toby looks as if he's ready to rip out his g-tube!

Last summer, I attended the National Spina Bifida Conference, and sat in on a sibling panel.  It was amazing to hear these teenagers' stories.  They opened the panel up for questions, and you could tell that each of these brothers and sisters were so thankful for their sibling with Spina Bifida.  It had taught them so much - most of all to give to others and how to be unselfish.  Hearing their perspective caused the tears to flow; it was a very emotional session, but also helpful to hear their perspective, and I pray that when my kids are grown, they will also be thankful for each other - and for Toby, and what God has taught them through him in their lives.

Every Step of the Way...19 Days

Here is the link to give to the Nationwide Children's Columbus Marathon and Half-Marathon.

October is Spina Bifida Awareness Month.  It's one reason why I started the count down to share our journey.  A way to honor God for His faithfulness, to highlight how Nationwide Children's Hospital has been a home base for his care, and to educate others about Spina Bifida.  It's not a hopeless diagnosis - it can be full of valleys and rough spots, but we are changed for the better because it has touched our lives.

Finally, after spending almost 4 weeks on the step-down floor.  Toby was ready to come home.  Basically, we had a crash course in nursing and respiratory therapy in a few short weeks.  One of our favorite floor nurses and respiratory therapists came with us - Rita and Johnny.  They taught us everything we know. Johnny has since retired, but Rita still works at NCH, and I am always guaranteed a wonderful supportive hug when I see her.  We love her, and she loves Toby.  Toby came home in his own personal chariot - ambulance transport!

Oh my goodness, we were scared to death bringing Toby home.  We were beginning a new normal that not only included all of his medical equipment: ventilator, oxygen, suction machines, feeding pump, nebulizer, concentrator, and ambu bags, it also included all the supplies that go with those items.  Another part of this  was adjusting to having strangers in our home: private duty nurses, physical, occupational and speech therapy, respiratory therapists, nursing supervisors, case workers from the county, and the list goes on and on.  They were there to help us care of him, but the chaos and lack of privacy really got to me at times.

Just a little picture of our home set up.

Our second night home, sleeping on Daddy.

The first nurse Toby had during day-shifts was truly sent from God.  She had experience with respiratory issues from her children being premature, and that really helped with Toby.  God truly used her to keep him out of the hospital that first year.  He was sick many times with urinary tract infections, respiratory infections, but not once was he hospitalized for any type of respiratory illness.  Somehow, we always managed to take care of it at home.  She was proactive with breathing treatments, calling pulmonary for a steroid if his lungs sounded diminished, and just a few short weeks after he came home.  She started putting him on his tummy within a few weeks of being released from the hospital, so he could strengthen his head, neck, shoulder, and tummy muscles.  He hated it!

Within just a few days of Toby being home, he got sick.  Bruce and I were also living on very little sleep as we didn't have much night nursing at first.  It took some time for us to get into a routine, but the boys loved their little brother right away. One day when Toby's alarms were going off Conor said, "It's okay, Mom, the nurse will get it!"

A passage of scripture that I have clung to over and over, and I know I've shared it before on this blog, but it begs repeating is Psalm 40:1-3

"I waited patiently for the LORD; And He inclined to me and heard my cry.  He drew me up out of the pit of destruction, out of the miry clay, And He set my feet upon a rock making my footsteps firm.  He put a new song in my mouth, a song of praise to our God; Many will see and fear and will trust in the LORD."

There have been many times that we have had to wait patiently to see how God was working.  While Toby was in the PICU, we were in a pit of destruction - the miry clay...sinking in sadness and despair, wondering if Toby would make it to his next breath.  He has drawn us up out of that pit many times - setting our feet upon the rock, and giving us a new song.  This song is different than before - changed - because we are different, we have changed.  I'm so thankful we have that new song to praise God for his faithfulness.  I always say - every morning God's grace and mercy pours out on my heart, so I can face a new day and take those firm steps of faith, that no matter what will come - He will be with us - every step of the way.