The day our house burnt down

Events happen, all the time, big and small, that alter the direction of your life.  I've had many of these events come to light, but I gather there are so many more hidden in the shadows that I will never be made privy of.  We all do.  I've been able to piece together so much of my journey so far - But one story I haven't shared, as just recently I've come to the enlightenment of why.  Why am I here. Not here in existence - Rather - here, sitting on my couch, gazing at the lake outside our new home.  

The day I was admitted to the hospital, getting induced into a 30 hour labor with my tiny son Toby, our house was burning to the ground.  Not the house we lived in at the time, the house we are in now. As a fire was brewing in my womb, my son fighting to stay in because I gather he was all too comfortable in my nice, warm, cushiony midsection - the dwelling I've become so comfortable in was literally burning to pieces.  In my head I image the flames getting stronger as my contractions did.  After a few days, Toby was born, and the house was empty, smoldering alone and black.  There it sat, unoccupied for almost 2 years, until we found it. 

It had been a normal sunny afternoon in November when I had the bright idea to take a Sunday cruise around our dream neighborhood, gawking at houses for sale and wishing one day one of them would be ours.  With 18 month old Toby and 2 month old Lyla in the backseat, Parker and I headed out to look at few homes that were listed for sale, and took the time to drive around the lake, gazing at the boats, and passers by.  We wound around the endless streets until we came upon an empty, unkempt colorful cabin, nestled into a small wooded lot sitting directly on a small lake. The house was blue and red and yellow, seemingly decorated by a 4 year old, and had 2 levels of decking wrapping around the side, overlooking the water. In the front yard - a for sale sign hidden by high grass. 

My fisherman husband pulled in the drive, jumped out of our truck leaving the engine running, and scurried to the side deck, disappearing behind the house for a few minutes.  Jumping back into the front seat and shutting the door, he said "This is it, this is our house! It has a hot tub!".  I laughed, wanting to be in complete agreement, but knowing all too well the house was out of our price range. In all actuality, we didn't have a price range. We weren't even seriously looking.  We had a home, on the west side of Cincinnati, in a quaint part of town that was seeing the effects of the housing market at full blast.  The 4 bedroom capecod I had purchased in 2008 was valued at least $25,000 less than I paid for it, and I didn't think I could get close to the payoff amount. Our hopeful driving around our dream neighborhood was just wishful thinking, wasn't it?

When I couldn't find the house on the internet for sale, I emailed a family friend who worked in real estate, and had helped buy and sell many houses for the family.  The news came back that it had been foreclosed on, and was in the process of being re-listed as a foreclosure instead of a private sell.  The next series of events are just proof that everything happens for a reason. 

I called a mortgage company to see if, by some grace of God we would be qualified for a home loan if we rented out our current home.  That day, we were told we were - Given pre-approval for the amount the house was originally listed for.  That list price?? Dropped by almost $50,000 since it had been originally listed for sale - making what was once a unreachable home into arms reach. I was politely informed they had a special going,  I only needed 5% down instead of the standard 20% - which would have definitely made purchasing unattainable. 

A few days later, we walked through the home, being forewarned that foreclosures were infamous for being a wreck on the inside. We opened the double front doors to an immaculate lower level, comprised of a full kitchen, stone fireplace, one bedroom a full bath and laundry room.  The kitchen with gleaming granite counter tops and brand new appliances.  We filtered through the rest of the house, with its brand new carpet, 2 more wood burning fireplaces, 3 more bedrooms and 3 more bathrooms.  An additional, newly remodeled main floor kitchen with brand new appliances. I couldn't help myself from getting excited.  I had such a warm feeling walking through it- such a sense of where I belonged.  All of this overshadowed by the view - a serene lake scene from every level, picturesque from the great room, with windows all the way to the ceiling. We made an offer, and the bank accepted it within two days.  In just 14 days, we went from not even considering moving to owning our second home. When all was said and done, we paid $154,000 for our dream home, in our dream neighborhood.  I thought we would need at least $100,000 more than that.  

I didn't know the home had caught on fire at first.  I found out while doing research on the auditors website, and noticed a remodel permit was issued for fire damage.  I did some digging online and found a news website that had distributed the story, published the day after Toby was born. Turns out the previous owners didn't make sure a fire pit was completely out when they went to bed, and it caught a shed outside on fire that subsequently fell into the house, burning it almost to the ground.  The couple got out of the home fine, but never returned.  I'm told by neighbors there were issues with insurance and fault. I hope they are well now, wherever they are.  Over the next year, someone was at the house completely remodeling it, although no one ever lived it in.  My guess is someone bought it to flip it and make money, but couldn't do it quickly enough and just gave up.  All that said, they did a fabulous job remodeling - and our inspector said everything had been completely replaced, not just repaired. He saw no signs of fire damage (except for the scorched trees), and was very impressed by the work.  

We moved in January, after finding renters within a week of posting our ad.  Lyla was only 3 months old.  Moving with a 3 month old and an almost 2 year old is as difficult as you would imagine.  But a short while later, we were settled, and our kids had a huge open, freshly carpeted great room to share their toys and smiles in. 

Mom and Dad, now able to get a bed big enough for 4. 

We were quickly greeted by our neighbors, who are a young couple like us with a 3 year old and an 18 month old.  What a nice treat to have children the same age as yours so close by. He is a salesman, she is a pharmacist. They were quick to tell us about the Firefighter/EMT a few houses up the street, also named Toby, and the preacher who lived cady-corner from us. For some reason, this news is reassuring to me, even though it is months before Toby's condition becomes bad. Who doesn't need a pharmacist, firefighter, EMT and man of God all within a stones throw? 

I picked up quickly that a babysitter came to their house everyday, her white SUV always parked in the drive by 8am, as I was packing up my little ones to drive them 30 minutes to their old babysitter.  30 minutes, each way, I drove them because we loved their babysitter - and I didn't want to send my children to a traditional daycare because I didn't want to lose the flexibility an at home provider provided.  My hour commute each morning and afternoon though, quickly taking a toll on my workschedule, and forcing me to reconsider our beloved sitter. 

Then, things got bad with Toby, and my mind forgot about the commute and I just made it work while I worried and stressed about his health.  I had no more room or time to think about anything else, especially when the thought of explaining everything wrong with Toby seemed like an impossible feat to a new nanny.  Even I didn't know what was going on. But, just as my worry almost overtook, God stepped in a gave me the shove I needed in the right direction.  Gabbing in the driveway one warm spring day, I mentioned the drive I take to the babysitter each morning, and our neighbor asked if we were in the market for a new sitter.  Coyly, I said that I was, secretly screaming YES, PLEASE!!  He explained that his daughter was going to be attending preschool in the fall, and they were hoping we would use their babysitter so she wouldn't raise the rates for just watching their one son.  I'm not sure how I contained my happiness, but I calmly asked that we exchange info, and I would get in touch with her to talk soon.  Running back inside, jumping up and down at the thought of no more commuting and my children directly across the street whenever I needed to see them. 

A short time passed and I met the sitter simultaneously taking out the trash cans the same time I was, and an instant connection was made.  A friendly faced widowed woman in her 40's, with 4 children of her own and a teaching background, she began in home childcare when her husband died, because she wanted to spend more time with her children.  She's been sitting for our neighbors ever since their children were born and loves them as much as their parents. Her two daughters, 12 and 13, come over with her in the summer and help her, and also get the added benefits of pool time with baby snuggles.  I arranged a play date and the rest is history. Toby and Lyla can't wait to cross the street to play everyday. Already, she loves them, and can't help but gush over them everytime she drops them off each day.  2pm they come home, and both nap till 4 or 5.  A routine that has become so convenient, I have to pinch myself.   

We were meant to be in this home.  We were meant to meet our babysitter because God knew my son needed extra help, and needed me to be close by.  It's hard for me to imagine that it was God's intent to burn down a home and force the owners out so that I could live here, but I also know from experience that even some things that have the appearance of being negative or heartbreaking always have a silver lining.  Maybe the previous owners were being lead to a new adventure, maybe the comsos knew this wasn't the right place for them.  I don't know, I can't explain it.  But I can say, with 100% certainty, that the Jones' are meant to be in this structure, at this time.  We were meant to find the for sale sign, hidden in weeds, because HE knew the warm, safe walls would harbor a lifetime of love and memories for us.  It would allow me the space and comfort to work from home, gazing out of my window at my tiny son and beautiful daughter, and praise his name for my blessings.  

I am amazed at how lucky we are.  

TWO 

Two pounds, two inches - those are the unofficial stats since we've started our new regime of meds, shots and food.  Can you even believe it?? We don't go back for our formal check up for a whole month, but I'm confident our figures are close to accurate.  My little cherub's face is thinning out, growing more mature with his height.  I am loving what I am seeing.  I had to buy new shoes because he grew out of most of his summer ones, his big toe now seemingly huge!  

The other day while splashing at the pool, Toby made a quick friend dressed in an american flag swimsuit, clad with flag earrings.  They were the same size, and I thought for sure when I asked her mother how old she was, she would say 2.  My boy has grown so much !, I think to myself, for sure he's caught up now.  Nope, she was 1.  A little bubble of optimism popped.  I'm not sure why I thought magically 2 inches was all he needed to be "normal", but obviously he'll need more time to catch up.  I can wait.  We can do this.  

Sorry, I had to share this photo of my bikini babe too!

Toby is still an eating machine.  He's feeling heavier by the minute and when I can get him to stand against his door, i'm putting more and more blue dots higher and higher.  What a precious gift God has given us.  Soon, we will have an appointment with an eye doctor. Children with Toby's condition often have eye problems, and this is our first appointment to make sure everything is alright with his vision.  In a month, we start our follow up rounds again - Genetics, Endocrinology, and GI.  Then it's visits with his Pediatrician and Neurologist.  We'll inevitably have lots of sticks over these visits, so please send a prayer his way for comfort and peace in times in pain and fear.  I will be sure to keep you posted, and thank you so much for following and praying!!

Thanks for Listening, 
Lindsey 

Clean Plate Club

It's been 10 days since I last posted.  The longest stretch I've gone since I've started this journey without writing.  I wish I could tell you its because things have been going SOOOOO well that I haven't had much to say.  And although things are very good right now, this past week has had it's hardships.  While I've been working on getting my routine with my tiny son, I've had to watch a loss so profound for a close friend of mine, and my heart hurts for her and her family.  A loss like this makes you second guess your worry and frustration.  A loss like this makes you thank GOD in such a greater sense than before.  The loss of a tiny child, just has no purpose.  Or does it? 

Without spending this whole blog writing about this angel child (which I could), I want to take a brief moment to share any enlightenment I have gathered from witnessing this experience.  My best friend for over 12 years lost her 2 year old niece to a battle with multiple medical conditions.  I was able to follow her story, along with thousands of others all over the world, through her mothers words via a blog.  While her short life was filled with complications and struggle, documented each step of the way in permanent letters on my screen, each post I read translated into that of an angel - guided by other angels on her journey and path in this realm. She had a way of touching everyone's heart, presented to the world in a bubble of hope and goodwill, and optimism.  We were able to watch her grow and thrive when the odds were against her.  Her life, while momentary, condensed the love and faith and worship a healthy person could not achieve in their long lifetime.  I am grateful for knowing this family and seeing their faith swell.  I am sad for their loss, and the tears that they cry, but I am so happy that this dear child is in the arms of her FATHER.  

You have seen me ask the question before - When is it OK to worry when so much worse is going on around you?  And this is the reason.  As a parent you can't help worry, its human nature to protect our young.  But watching this experience has softened me. It has allowed me to let go, just a bit, of the jaw clenching fear for my son.   God has a will and a way.  Beauty can be found in tragedy, if only for a moment, then shadowed again by the longing to go back to the way it was.  The selfless devotion this family has for their faith and love of one another is inspiring.  And as such, has helped so many individuals soften themselves too.  It has helped us realize we need to squeeze our children a little tighter, a little more often. Such a huge accomplishment for such a tiny angel.  Rest in peace. 

Dr. Harbison would like to speak to you. 

Dr. Harbison is a pediatric endocrinologist who works in New York City.  She is one of the leading doctors working with children with RSS.  If you are part of the communities of children with endocrine disorders and growth problems, like we recently are, you know her name.  You compare her relationship to the growth disorder world to a Michael Jordan of the Basketball world, a Michael Jackson of the Pop world, a Michael Buble' of the cougar crush world.  Yeah, she's a big deal.  So you can imagine my surprise when on a random weekday, a notification popped up in my facebook with a comment I had been tagged in.  Posted to the board of "Life with an RSS/SGA child" by its moderator - "Lindsey Schultz Jones, Dr. Harbison would like to get a message to you.  Please check your other folder."  My fingers quickly moving my cursor and clicking in my messages tab, only to see a message posted with more details. 

"Hi Lindsey,  I feel slightly weird writing you this out-of-the-blue message, but there is another mom on our page who is super experienced with RSS and other stuff -- her 19 year old son was misdiagnosed with CAH when he was an infant and treated for it for a while, before they found Dr Harbison and the correct diagnosis was made.  But as such, she is super familiar with pituitary and other hormone issues.  She and her son are in New York today having an appointment with Dr Harbison, and she asked Dr H a question relating to your son.  So then Dr H asked to see the photos of your son and other info so up comes Facebook....  Dr H has some questions and concerns that are probably already covered by your local doctor, but she wants to make sure.  So she gave her the info and [she ]called me and asked me to message you and give you [her] cell phone number.  It sounds really important so if you can call [her], she can relay Dr Harbison's info to you.'

I couldn't phone her fast enough.  Thoughts racing in my mind.  First, someone across the country read my blog.  MY BLOG.  Whoa.  Second, she knows Toby!  And she's trying to help him!  What a precious gift God has given me! This woman travels to New York specifically for these appointments for her son.  That's how good this doctor is.  I quickly connected with her and she shared with me that she follows our story and could relate to us because of her journey with her son. Her son is now grown, so she has had many years more experience than I have. Toby stuck in her brain, I'm sure the same effect he has on most people who see his smiling face.  

She shared with me clinical information Dr. H wanted me to be aware of.  Different hormones we should be focusing on.  Advice that I needed to bring to our personal endocrinologist.  I am thankful and humbled a complete stranger, unprompted, spent even just a minute of her important appointment asking questions about my son.  To protect him.  God is good. 

Terrible Twos 

I can't tell if Toby is just in the terrible two phase or if his hormone therapy is making him bonkers - or both.  While I'm so grateful this new medicine seems to be doing the trick - prompting 8 am pizza parties, clean plate clubs and creating a non stop cookie monster....

I'm getting a little frazzled by his tantrums.  Ok. Alot Frazzled.  Like I'd rather pluck each one of my hairs off of my head with a tweezers than be around my son when he's throwing a fit. Yes, I see an improvement.  He is heavier - I actually have to work to lift him up.  I haven't weighed him because our scale has a dead battery, but I can tell a huge difference so far. We've started documenting his height on his bedroom door.  Over an inch taller since we started just a month ago.  Things are good.  Well, except for the demon that materializes when he accidentally breaks his cracker taking a bite.  10 minutes of crushing the pieces in the carpet - huge tears, red face, running into his room, slamming the door, SCREAMING, head banging on any surface it can find. Some times, I just have to bear hug him for 3 minutes straight to get him to calm down.  And I can guarantee he doesn't remember why he's mad in the first place.  He's fighting just to fight.  I've read this is a side effect of the hormone therapy- and that it dissipates over time.  Normally, I wouldn't wish time to go faster, butttttttttt - time needs to go faster. Or I'll be bald, alone in my bathroom with a tweezers in my hand. 

It's been these past weeks that have had me come to the realization - God wants me to go on vacation.  Yes, he intently and purposefully needs me to get away from my children for a few days.  We have had our trip booked for months, long before Toby's issues got really bad.  Parker and I thought undoubtedly we'd have to cancel when Toby got his NG placed.  But as you all know, the plan worked in our favor and it was removed.  Thank you God for a doctor that listens.  Thank you God for giving us the strength and courage to stand up for ourselves.  See, he really DOES want us to vacation?!  I am worried about leaving, of course.  But Toby is content for now.  He's in a medication regime that seems to be working at regulating his systems the way they are intended to work.  My 8 month old is, well, perfect.  

Can we really get away for 5 nights, by ourselves, without children outside or inside my womb for the first time in the last 3 years?  God says YES. For now.  We need a break. We are exhausted and emotionally checked out from each other.  This time spent away from our stresses can only be good for us - I say with a question mark as I'm biting off my last fingernail. We have 5 more days until we take off.  Provided we have no more setbacks - our sitters are lined up and my emergency contact and medical information sheets are filled out.  I'm sure I will be a nervous wreck, but I'm hopeful I'll get to the beach with a pina colada, sit in my beach chair with my toes in the sand, and thank GOD for his will and his power.  For showing me just how important faith is.  For allowing me to watch an angel born and placed in HIS arms within 2 short years. For prompting a stranger to advocate for my son.  For encouraging me to continue writing and praying - because I'm just not certain the best has yet to come of this.     

Thank you for listening, 

Lindsey 

V is for Vomit

What a whirlwind the last day has been.  At midnight last night, Toby coughed and triggered a massive emesis in his sound sleep.  Had this had happened at home, surely he would have choked - as he was laying on his back - vomit bubbling out of his mouth like a fountain, all over himself and his bed.  It took him a few minutes to realize what was going on, as we quickly got him onto the floor - still connected to his tubes.  He finished emptying his stomach and we spent the next 30 minutes with the nurse, detaching, cleaning up, switching bedding, reattaching, and rocking him back to sleep.  This incident, while scary and annoying and disgusting, changed our game plan completely.  This may turn out to be a good thing.  

What the Hell are we still doing here??

I'm not surprised our 23 hour admission has turned into a 5 going on 6 day admission.  That's how we do things in the Jones' household.  Go big or go home. Let me give you the run down about how we started, and why we're at where we are today. 

On Thursday, Toby had a NG tube inserted.  This is a small flexible tube that is forced through his nostril, down his throat and into his stomach.  Once in his stomach, they check the placement by using a syringe and shooting a small puff of air through the tube, listening with a stethoscope to hear it from the inside out.  There needed to be a very specific noise from this action, and Parker and I were trained on how to do this and hear the noise we were looking for.

I don't need to give you the details of how this process went.  I'll leave it up to your imagination, but it was as awful as you would expect, producing shortly afterward heaps of bloody vomit all over the place.  I'm told this is normal.  If I have one more person tell me any of this is normal - I might shove a tube down their nose, and ask them how they feel. Now that I'm trained and all. I digress. 

Despite the annoyance, we still were able to have some fun this week with our tube in.

Things didn't happen as smoothly as they wanted.  Shocking *says with a quick tilt of the head, eyebrows up, and sarcastic tone*. We KNEW this wasn't going to work for our boy.  Not only does Toby vomit when he's blissfully and peacefully playing with his cars, minding his own business - he vomits when he cries, when he runs, when he hits his head, when he coughs - you name it - the kid expels it. This is the life we know.  So as you can imagine - making the decision to insert a tube down his throat for an unforeseen length of time - only made us cringe at the thought of what could happen.   And as we forebode, it didn't work. He continued to vomit when he sneezed, when he coughed, when he stood there doing absolutely nothing but smile, or playing with his trains. 

DGE

Leave it to Dr. Lindsey And Dr Parker Jones to diagnose our son's 4th diagnosis.  We've been researching and reading, asking our new friends from our new group all their opinions, and I stumbled across a syndrome called Delayed Gastric Emptying.  This is a symptom of RSS, the genetic disorder he's being tested for, and its the reason I found that it even existed.  

In a nutshell, its a problem with the timely digestion of food and movement through the GI tract.  There are a variety of causes but one of them is damage to the Vagus Nerve.  And class - what can damage the Vagus nerve???  Hypoglycemia!?! - Something we've just recently learned Toby has had his ENTIRE life. 

We read in amazement as we pieced together our new diagnosis for Toby and were sure to explain this to our GI doctor during our clinic appointment on Wednesday.  Much to our surprise - he agreed with us, and we made a plan to investigate it further. The attending we've had since we've been admitted is amazing.  He's a handsome fellow, in his late 40's??, with a sharp and dry sense of humor - just like we like! Each morning, rounds happen.  If you aren't familiar with the medical world - Rounds occur each morning for admitted patients to      1. Give the entire medical team who's working on our son an update about his progress and 2. Use it as a teaching/diagnosis moment for residents still in a learning phase.  

So far, each morning has been and explanation of Toby's last day (Vomit, eat, vomit, eat) and a list of new labs that need to be drawn.  After our incident last night with Toby's vomiting in his sleep, we had a rush of fire we'd never had before.  We were going to intiate some changes. We are done with leaving it up to them - We were going to start calling some shots.  I thought we would be met with resistance, but by some Grace of God - he had Dr. K covering, and he was not only in agreement, he was impressed by us. 

Standing in our doorway, Toby as sweet as pie running around with a little nose hose, as we called it, dangling about from his shirt - Dr. K was given the rundown about our episode last night, and the vomit that ensued all day long.  

Turning to me he asks "Mom, What do you think is happening?"

Now's my chance, I think.  I felt like I was a medical student, stepping up to the podium to give a speech in class. 

"We think Toby has delayed gastric emptying.  I know that this is caused by damage to the Vagus nerve and I know that can happen because of Hypoglycemia - which we learned Toby has had his entire life due to his Human Growth Hormone deficiency.  He exhibits every sign of DGE.  To complicate that - he also has a very sensitive gag reflex.  So we have a variety of vomiting triggers.  Our NG tube is just exacerbating his vomiting issues.  If he's not vomiting because of the DGE one night, he's vomiting because the tube is tickling his throat.  Its not working for us"

I'm watching the 10 strangers, and Dr K, with computer carts nod their heads in understanding and compassion. 

Dr K steps in.  He outlines the basics of what DGE is for the group - who all know but needed the recap.  Everything he said, I already knew.  He acknowledged that we can clinically diagnose Toby with this syndrome.  When you have a clinical diagnosis - its a diagnosis based on signs and symptoms and not one based on a specific test (like bloodwork or an xray for instance). We know that there is a test that can diagnostically diagnose Toby with DGE but they require him to eat 2 whole scrambled eggs.  That is not happening any time soon.  Essentially a substance is put in the eggs which can be detected through scans and when he vomits, we would know exactly which part of his stomach is malfunctioning and take a medicine specific for that issue. After our brief acknowledgement of this disease and tests, he directs his next question to the residents "Given this information - what do you think we should do?" 

A soft spoken gentlemen in blue scrubs speaks up  "I think we should put him on medication for DGE, leave the NG in and hope that it helps with the vomiting". 

Dr K then turns to me (I feel in excitement hoping I'm going to disagree.)  I was soooooo ready to disagree, my own excitement building up that I was finally be ASKED for my thoughts, instead of forcing them.  "Mom - Do you agree?"

"No, I don't"  Dr K getting a big smile on his facing responding - "I love it!  What would you do?" 

Stepping in for the kill shot, I continue the plans Parker and I scripted laying in the dark the night prior.  "We want the NG removed.  Prior to last night, I may have agreed with you (I said directing my eyes to the resident who just gave me his thoughts - him acknowledging my constructive disagreement with a nod).  But I watched while my son vomited sound asleep on his back in bed.  I will not take that chance.  What if I was changing a load of laundry around, what if I was tending to our 8 month old and wasn't watching the monitor?? He would have aspirated on his own vomit.  Aside from that issue, our quality of life will be miserable if for every sneeze or cough, every wiggle of that tube, he throws up."

I am comforted by the looks of agreement in the group, and I continue. 

"We want him started on the DGE medication.  We want to get as many calories in him as we can on our own.  We will hope that the DGE meds and the addition of the Growth hormone, plus our added pressure of getting as many calories as we can in him, will be enough to get his progress moving.  ONLY after we've tried this for a month, will we consider a tube, but we will ONLY do a G-tube , not an NG tube."  I am direct and confident as I am speaking. 

For those of you who do not know much about tubes, and why would you???, I'll explain the difference.  An NG tube is one that goes through the nose and into his stomach.  There is an NJ tube that goes through his nose and into his intestines - its a longer, weighted tube, and it can be used for children that have DGE so the food bpyasses the stomach alltogether and wont get vomited up. For Toby, not only does he have the DGE, but he can't tolerate a tube down his throat (as we can CLEARLY see).  For this reason, I would want to go directly to a G Tube.  A G tube is a tube similar to the one that goes through his nose, but is surgically placed directly into his stomach and comes out of his belly.  We would hook him up nightly, like we would have to do with a nose tube, and like an IV, Pediasure drips all night long into his stomach.  Only with this option, we don't have to worry about his gag reflex because nothing is in his throat.  This is a major surgery that brings along with it is own complications and complexities, and a change in way of life.  Its not to be taken lightly. 

Dr. K likes our ideas, and uses the opportunity as a teaching moment.  Resting on the door to our room, he starts drawing pictures of Toby's insides, and covers the complexities of DGE and how we can use the medication to treat it.  

To make a very long explanation short - we are starting him on 2 medications that help to regulate digestion in certain parts of the stomach. Because we are unable to preform the diagnostic test to isolate the exact part (and mediation) he needs, we chose to put him on both - to cover all of our bases.  The side effect of the meds? - Drowsiness and increased appetite.  Both of which sound amazing to me - as I watch my little man running up and down the halls in his reds slippers, tube flying behind him as he scurries. We could all use a little more nap time, I think as I let out a big yawn. 

10 minutes after Rounding - his tube was out.  A validating moment for all three of us.  His cheek red and irritated after just 3 days with it - my eyes cringing at the thought of how bad it would be to have it in for months at a time. 

We are still here because we have to keep track of everything Toby is inputting and outputting. I am hoping and praying they will let us leave Monday but I'm thinking Tuesday is more realistic. Toby vomited once today - and only because I was injecting his medicine in his mouth - which made him gag and throw up.   I got the OK to mix it in with his pediasure, and our second try was ingested without any issue.  Thank God. 

We are waiting, and praying, for things to settle down so we can go home.  Rumor has it, if we do have to stay through tomorrow - they might let us leave for 4 hours.  We're thinking a quick trip to the splash park might be in order.  Sissy got to come today and spend time with us.  We all needed badly to see her smiling face.  

Please keep praying that things stay on track.  Please keep praying Toby stops vomiting and starts growing.  I am completely touched and elated about the response to Toby's story.  His life has been a blessing to us, an even though its been challenging, these challenges just highlight everything good in the world.  Everything good about our love of life, our love for each other, and our love of GOD.  If you read this from your phone, you can't easily see, but this blog has had almost 14,000 hits.  I can feel the warm prayers from you.  Toby can.  Thank you from the bottom of our hearts. 

And, Thank you for listening. 

Lindsey 

He who believes is Strong; he who doubts is Weak

Thursday Friday Night 11:00pm 

I'm having a hard time recalling what day it is. It feels like just yesterday when we last stayed in a hospital room, in actuality, that stay was weeks ago.  I have just showered and had dinner, after Toby drifted off into sweet dreamland.  For some reason, I chose to get the premade Sushi tonight- Pizza and Coneys, though amazing, get to be a bit much when you have them for every meal.  Keeping the room dark to not wake my little angel, I used his Buzz Lightyear flashlight and rested it on the corner counter, lighting a small path for me to open my soy sauce. Wouldn't you know, as I looked up, this was the sight illuminated. 

I didn't hang my jewelry there, I guess Parker did.  But I sat and ate in the dark, looking at my matching bracelet and necklace lit up and sparkly.  It's a little peculiar that I wore this bracelet to our appointment Wednesday Morning.  

As I waited in worry for our procedure to be over, we walked over to the gift shop to buy puzzles and stickers, and I found it's match- a perfect necklace that could have been confused as its matching set. 

I bought it, and immediately put it on that day.  Now it hangs here, lit up.  Reminding me to have faith.  My Sushi now consumed, my fortune cookie read proudly - "He who believes is Strong; he who doubts is weak".  Thank you God for this precious gift. 

Wednesday 

"We have to rule out a brain tumor" 

I am numb. The words fell out of her mouth like any other phrase she says all day long - "Hello; Goodbye; Has anything changed since the last time you've been here??"  The radiology scheduling coordinator had called to review with us our instructions to prepare Toby for the Brain MRI he was scheduled to have on Wednesday, informing me her protocols and how we should fast him 8 hours before our appointment time.  Outside of the glaringly obvious worry of scanning your child's brain for a tumor - we now had the added worry of fasting him - something someone who has hypoglycemia should not take lightly. 

I had phoned Toby's endocrinologist and we had established a game plan to have Toby sedated via an IV, instead of the standard oral sedation they use on most kids.  This way, we would have access to his veins in the event we needed to push him more sugar, if his levels dipped too low.  They were comfortable with fasting 8 hours, even though I KNEW we would be delayed (because that's how things work in the world) and I KNEW something would go wrong (because we've never had ANYTHING happen just standard for us, that would be way too easy).  If Toby is sedated, we wont be able to see any signs that his sugar is dipping too low, and that worried me.  Regardless - this is a procedure that needed to be done - so I tried my best to squash the angry worry in the pit of my stomach, and move forward with our plan. 

Wednesday morning we dropped Lyla off at the babysitter and headed for Children's.  We had a 9am appointment for a 10 am MRI Scan, followed by a 1230 pm GI visit.  Toby's last bottle was ingested at 10pm the night before, and he hadn't had anything since then.  Unfortunately, he thought vomiting on the way there would be a splendid idea, so I crawled my big butt between the two front seats and cleaned him up, listening to him say "Ewwwww, grosssss" looking awkwardly at his messy blanky. 

As expected, we waited a while in the lobby.

And more in our "prep" room. 

We were going on 13 hours of fasting, and our glucose levels were dropping, when the decision was made from the Radiology team to switch him from oral sedation (Taking a medicine through the mouth and falling asleep) to General Anesthesia.  This means that he needed to be put to sleep by an anesthesiologist and a breathing tube inserted to control his breathing.  Toby would be hooked up to an IV after he was put to sleep, and we would give him glucose through that IV so his levels wouldn't drop any further.  While the image of Toby getting gassed from his last surgery here is an awful one etched in my  mind - I knew it was the safest option.  With his vomiting spells, the last thing we want is for him to be sedated and choke - a breathing tube would help prevent this.  

We were escorted to a small cold room, my son was forced on a mask, and I held him down as he fought his way into an unconscious dream. Only able to hold my tears long enough to walk out the door.  

An hour and a half passed, and we were reunited in the Radiology Recover area, Toby in a wretched mood, as expected. After some time there trying to relax, he was released in our care - his scratchy sore throat letting out moans of pain from the tube that was just removed.  We walked to our next appointment, and waited in GI for our doctor. Toby, just miserable, and wanting to go home. 

I knew our GI doctor wasn't going to be happy.  Toby was 10 days into a vomiting spell, vomiting at least once, if not more, each day.  His glucose levels had been fine, but I knew he wasn't getting enough nutrition when he can't keep it down. My intuition was right; confirmed when his measurements showed he grew 3/4 an inch in two weeks, but not enough weight. The growth hormone injections we give nightly obviously working, but we cannot have him getting taller without gaining weight.  It defeats the purpose. We made a heart wrenching decision to have an NG tube placed - this is the reason for our stay.  I will cover more about what this is, and why we need it soon - but I'm sure your wanting me to tell you the results of his brain scan. 

Thursday 10am 

We are at our endocrine appointment by 10 am on Thursday, having been released to go home Wednesday and return for our admission to get our feeding tube the next day.  Before we went to admitting, we had our earlier scheduled appointment to follow up on Toby's hormone shots and glucose checks, and get our results from the MRI. Our endocrinologist was a very kindly young doctor - he had met with and reviewed Toby's case with the physicians who treated him during our admission there a few weeks ago, and he was eager to meet us and learn more about our darling son. Our GH and Glucose checks were going as splendid as they could, we got the easy stuff over with first.  Next, he asked us to sit down and review the results of the MRI scan - he'd like to show us on the screen the pictures. 

Immediately my heart started racing.  If the scan was fine - he would have just said the MRI scan showed no abnormalities and left it at that.  Why would he need to show me something thats perfect?  Clearly, something is not right.  It wasn't. 

Slide by slide, he explained the parts of my son's brain we were viewing.  If you can picture the profile of Toby's face, and slices vertically down the side, each slice showing deeper into his skull moving towards between his eyes.  This spot, between the eyes, is where the pituitary gland sits, in a small cavern etched out in the bones of your skull.  If you remember, the pituitary gland is what controls the distribution of growth hormone.  They were looking for any explanation as to why it wasn't functioning properly.  As he pointed out spots in the picture, his finger stopped in a black space, and he said "This...This is where the pituitary gland is supposed to be, and as you can see, its empty".  At a loss for words, we let him continue.  Slide by slide we moved deeper through his brain, and a few pictures later, we were looking at a small white speck.  This, as its explained, is the back edge of the pituitary gland.  In a nutshell, Toby's gland was not formed correctly - there is really no front part, there's only a small back section.  This explains WHY he cannot produce an adequate amount of growth hormone.  

Your probably asking now, WHY is it deformed?  Just like I was.  Well, its not a tumor, thank God.  There are no other abnormalities in his brain other than this.  I am told this was something that happened when we was being formed in my womb.  A mutation that happened for an unknown reason. We could spend and exhaustive amount of time/resources/money performing tests to figure out the cause - but it wouldn't change the outcome.  It is what it is, and we already have the treatment in place to level out what his body naturally can't do.  There are other related issues we will have to monitor Toby for now, requiring additional hormone therapy later in life, but from what we can see, everything is treatable. 

Thursday 12pm

We've just left our endocrine appointment, learning our son has an almost absent Pituitary Gland, and are getting admitted to have our NG tube inserted.  We are getting this tube inserted because the first few months being on Growth Hormone are the most important to kick start Toby's growth.  Because he 1. Doesn't eat much and 2. Vomits what he does eat up - we need a way to make sure he gets an adequate amount of calories and nutrition in his system. Unfortunately - we have to go a very dramatic and traumatic route to ensure that happens.  I am terrified.  I know intellectually what this means.  I know that we have to shove a tube down my son's nose, down his throat and into his stomach.  I know he is wide awake when this happens. I know there are no pain meds given.  I know he is going to be terrified and tortured, in pain and agony.  I know I have no other choice, because as much as we try, we cannot get our boy on a healthy path on our own.  I am disheartened and sad.  I am panic stricken.  

Friday 10pm

I am putting my faith in God that he is protecting my son and comforting him while he dreams.  We are not going home.  Toby's vomiting has not stopped, even with his tube.  We can't leave until he hasn't vomited for a whole day.  Its been a while since he hasn't vomitied for a whole day. Please say a prayer with me that he holds it in.  My back hurts, my eyes hurt, we miss our daughter.  We just want to go home with our tails between our legs and get into some sort of routine with our new tubes and equipment.  We will get there, I am sure.  In no time we will be experts, not even noticing this new piece of my son's body.  Please help me get there.  I'll admit it, I'm scared. 

Thank you for listening, 
Lindsey 


.  

I pray for God to make my boy understand

Down a long winding path, in a far, far away corner of the internet, exists a community of families with children just like mine.  I found them with the help of new friends, and this group serves as a sounding board, giving advice and reassurance when you feel like you are doing it wrong.  They help you understand, they console you, they lift you up, they teach you - and best yet, they help you to believe that it is not your fault.  They too have struggled with raising a child that does not grow, and they too have gone through all of the testing, the struggles and the pain. (Insert an uber emotion Lindsey metaphor here)  I feel like I've been on a deserted island and have finally walked far enough to find civilization - each of them landed here like myself, and each of them walking a long, hard journey for something better.  Making everyone there so eager to share their experience and make sure you feel you are not alone. We are all very alike in so many ways - What a precious gift God has given me.  I have needed this help for a long time - even more so in recent times. 

New Friends

Last week, we were graciously invited for a play date with our new friends, Lauren - the woman who originally reached out to me and helped us get to Toby's diagnosis so far - and her family. Lauren's son has RSS - a genetic growth disorder that Toby is currently being tested for. We talked for a few hours while our kids played together, and were immediately finishing each other sentences.  Our boys share almost every symptom together.  Not eating, not growing, HG injections, vomiting, hypoglycemia and glucose checks.  Even if Toby isn't diagnosed with RSS, it's a comforting and powerful feeling to have someone you can talk to who gets it.  As a parent - your job is to care for and nurture your children.  When you have a child that doesn't grow, you feel lousy and incompetent - they depend on you solely to live and thrive - and when they don't you can't help but blame yourself.  I don't have the words to explain the relief it is to know you are not alone, and it is not your fault.  I'm working hard to believe this each day, and Lauren and her family is making that within reach.   

As if new friends and comforting shoulders weren't enough, Lauren's son also relies on Pediasure like Toby, to survive.  Unlike my insurance, her insurance covers it - and sends her so much that they can't keep up with it.  Usually she donates the leftovers to a program which gifts it to other children in need - this time - she gave it to us.  Four cases, which would have cost us HUNDREDS of dollars - just given to us by this angel of a family.  Along with it, other supplies her insurance company covers that will help Toby as well.  Thank God for this precious gift - and hopefully life long friends.  

Mess Ups

Our week had been just OK.  Toby's vomiting has picked back up again - something I thought we might have been past after changing his diet.  We are now on day 6 of our vomit/clean up cycle.  I'm not sure whats worse - the constant cleaning or my lack of sleep.  Toby needs his glucose checked at 830 pm and if its not high enough, again a half hour later.  He's asleep by 930 and now that both kids are sleeping, I clean myself or the house.  It's either one or the other. (So, if you come over and my house is clean, stay a good distance away because its usually a sure bet I haven't showered.)  At 11 pm, once hes been sound asleep for a few hours, I give him his injection.  After spending the next 20 minutes coaxing him back to sleep,  I go to bed and hopefully am asleep by midnight.  

My 2am alarm clock sounds, and I usually hit the snooze a few times before making my dreaded walk into his room, to wake him up with another needle in his finger to check his blood sugar.  Between 5 and 6, he asks for a bottle, and shortly thereafter, my daughter wants one too.  Then they are up at 730, with one more finger stick to get the day going.  I am getting a good 5 hours of intermittent sleep each night, and its taking a toll on my mind, my patience and my intellect.   

 We've been able to struggle through the glucose checks - giving him stickers after each prick.  Now he holds his finger out and shuts his eyes hard because he knows its going to hurt.  He lets out a quick cry and asks if we are "Aw Done?", in a voice that shatters my heart everytime.  I quickly say yes, and the stickers come out, and in short time, he forgets it even happened.  I wish it were that easy for me. 

The injections have been much harder.  After our failed attempts at doing them while he's awake, we've tried a pattern of giving him his shot after he falls asleep.  The first few times, he would wake up crying and confused, and I would rub his hair and give him hugs until he wanted to fall back asleep.  But a few nights ago, I did something horrible. I had picked out his injection spot after checking my calendar, to make sure I wasn't repeating a spot I had just done.  Deciding on his right thigh, I reached into his crib and with one arm held his leg down, pinching his thigh, while the other hand held on to the pen with his medicine, ready to inject.  I guess I wasn't holding him down firm enough, because as I stuck the needle in, he immediately jerked his leg and screamed out in pain.  The needle having just tore a three inch long cut into his leg because of his quick movement, blood dripping out.  I was devastated.  How horrible it has to be to be woken up three times a night to get stuck, but my carelessness just caused a horrible cut on his leg, and it must have hurt like hell.  I got him out of bed and set him on the kitchen counter, taking a wet paper towel trying to stop the blood from oozing out.  He was inconsolable, as you can imagine. Angry cries, kicking and screaming.  I got some antibiotic ointment and a big band aid, and stuck it over his wound, then sat in his rocking chair in his dark bedroom, and let him cry on my shoulder.  I couldn't stop myself from sobbing.  I felt horrible. Here is my adorable tiny boy who depends on me to save him from the doctors and nurses, poking and stabbing, being his soft comforting arms that rescue him from his torture - and here I was, now the perpetrator.  I cried because I knew he didn't understand.  And it will be a long time until he will.  

We both sat in the dark, rocking and crying, and in a moment he stopped, lifted his head and looked at my face, lit by the soft light filtered in through the door to the hallway.  I could tell he was thoroughly confused by the sight of my tears, and it dawned on me that he had never seen me cry. The look of confusion in his eyes, I cried even more.  I just want him to understand that I have to do this to keep him safe, I just want him to understand that I don't want to.  And as if he was reading my thoughts, he shook his head saying the word NO - telling me not to cry.  Tears now falling from his eyes again, but I truly believe for a different reason.  He was crying for me now, not him.  I can't explain why I know this, I just do.  He laid his head back down on my shoulder, wrapped his tiny arms around me, and hugged me.  We stayed like this until he asked to be put back in bed.  Every time I think about this night, tears well up in my eyes.  I can't write about it or talk about it without feeling an enormous amount of guilt and pain.  I know its a culmination of all of the stress we've been under, the waiting and the frustration, and the lack of sleep.   

The past few nights have been better, no cuts to speak of, but I'm more nervous now when I walk in that it will happen again.  I hate that I have to do something every night I'll always be nervous about.  Butterflies fluttering around, I wish they would go away.  I know this is all very new, and I know that we will work out a routine in time.  It may be a year from now when he can fully understand the reasons why, and I have to be patient and thankful until that happens. I can't lose sight of the fact that our boy is getting treatment he needs to stay healthy, even if it means I have to be a bad guy for a few years until he's old enough to get it. I pray every night that God gives me the strength to continue, I pray for God to make my boy understand.  If you are praying for us, please pray that God's comforting arms embrace Toby in his times of fear, as his mother who was once the person to shield him from that pain, is now the one who is inflicting it.  And please pray for my sanity given the above, that I can forgive myself one day for causing my son so many tears.  

Thank you for listening, 
Lindsey