Learning to parent a healthy child

This summer, my husband and I were at a concert in the park, listening to my oh so talented brother-in-law perform on stage, and chatting with our friends - when a complete stranger-to-me walked up to my side. Making small talk while the rhythm echoed in the background, I soon learned that he's known my husband for a long time, and has hung out with him on a few occasions. His point for approaching, he made clear, was to let me know now much he loved this blog. How he couldn't wait to click the link when he saw another post, and how captured he had been with Toby's story.  I smile ear to ear because I love when this happens, when another person I don't know makes it a point to offer their support and love to my tiny boy; Toby who now has another fan rooting in his corner.  I couldn't have fathomed that after 7 months and almost 21,000 views later, this all worked.  This journey that I've struggled with documenting and living, it all had a point and a purpose.  And now I'm walking a tightrope - bridging the gap from living with a sick child to a healthy one.  I'm not sure how long it will take me to get to the other side, or worse, if I'll fall. 

When a year goes by in 5 months.....

You know the sayings - "Time Flys", "They just grow up too fast", "They won't be little for long"?  We'll the first few years of my son's life, I had no concept of what that meant. By the time his second birthday rolled around, I swear it felt like I should have an 8 year old.  I'm guessing the constant sickness, stress and worry, and plain confusion made those theories inapplicable to our lives.  We were weathered, to say the least.  Then the time came when we finally received a diagnosis, a correct one, that had proven treatment and a time-tested plan.  The cherry on top - new doctors and nurses, who continue to amaze us everyday with their knowledge and heartfelt worry and encouragement for my son. 

So we started this treatment, and it was rocky at first, but then slowly, we fell into a routine.  And my tiny son started growing.  For the first time in a year, we saw a change.  A change that is so powerfully overwhelming and beautiful.  The sense of relief you didn't know you needed.  The pounding of worry in your heart you had grown accustoming to feeling every minute, disippating enough to make you realize how harsh that pounding actually grew to. You weren't even aware how all consuming it was because it was a feeling that you had gotten so used to, you thought it was normal.  Even more than his height, his health.  The vomiting-every-day, sad, bloodshot, puppy dog blue eyes -  watering every night while he looks at me confused and scared.  Gone.  Pale, see-through skin - soft and cold, now colorful and vibrant. Lifeless, limp limbs trying to struggle through the day because they aren't being fueled with enough sugar - Now working, moving, pulling and pushing like a normal 2 year old.  It's like we've been huddled into Wonka's elevator, pushed the normal button, and shot right out through the sickness into the way real life is supposed to be.

What's not caught up though, is me.  Parents can't say enough how fast their children grow, and now I'm trying to understand that saying at WARP SPEED.  My baby has grown to a boy in 5 months.  Its a concept so foreign to me, my mind can't wrap itself around it.  It sounds funny, like I'm conveying this is bad, but I think things that are wonderfully amazing can still cause confusion.  It's this confusion I'm working through.

In addition to our nightly injections at home, we've been going monthly to our Endocrinologist at Children's for a hormone cocktail, injected via a huge needle in his tiny bottom, and its been doing amazing things for him.  During our last trip, we were in the elevator pushing buttons and being loud, when an employee there asked Toby how old he was.  We say 2, and as I'm getting ready to go through my standard speech about why he's so small, she just continues to gab with him, asking him about numbers and colors and shapes. 

Her unemotional response to his age, in that moment, was such a powerful thing. The first time I've said his age and haven't received a look of horror, or a laugh, or a sad pitiful frown.  Water stings my eyes. Relief. What a wonderful moment in time, a feeling I want to freeze and thaw out on bad days. 

 

April - The visit that lead to our diagnosis

 

May - Month 1

June - Month 2

July - Month 3

August - Month 4

 

September - Month 5

 



October - Month 6



 

 

And now clothes shopping.  From our 9 month wardrobe that's been in hanging in his closet since he was born, to brand new size 18 month clothes.  Slowly, stocking up on 24 month sizes, trying on those pants and seeing just a few more inches will bring him up to that size completely.  What once would have been six inches of extra fabric, now reduced to 2, and on a few pairs, 1 inch.

Toby with his friends Sophia (19 months, same size/weight) and Abel (2 yrs 10 months - 4 months older than Toby) 

Someone recently told me it looks like Toby has been stretched, that some magic miracle medicine has had him grow like the beanstalk.  I can't help but agree. 

April

October

So it can be said, Toby now looks the part, but it's my fault he's not acting it.  I don't think I did anything wrong, or abnormal.  I think it's a simple fact of life with a child who is ill - he's having a hard time accepting the change that comes with rules and regulations - something pretty much foreign to him his whole life. 

A model parent would watch what their children eats, monitor TV time, take away binkies, potty train, and be strict and firm when the time is needed.  I have not been any of those.  When my son wanted to eat, I would give him whatever he wanted, whenever he wanted it.  Cookies in bed - sure honey, how many?  Ice cream for breakfast - yes Toby, what flavor?  What show do you want to watch while you eat?  Let me hold you while your sick, Let me give you your binkie and blanky while were at the doctor, in the hospital, lifeless at home.  You've all had these normal moments with your children, and I'm sure you've let things slide a time or two as a reward, but for my son, his entire life has always been whatever he's wanted, whenever he's wanted it.  Because I couldn't bear to see him in anymore pain than what his body put him through, and because it stopped his soft, tiny eyes from stinging with tears when he didn't feel well. 

Now though, I'm transitioning my parenting to one of a healthy child.  And my poor sweet boy, well, he just doesn't understand.  How confusing it must be, in just 5 short months, to go from getting everything, to slowly being told no.  Time outs - yes, we have those now.  Blanky and binky time, thats just for bedtime.  And no, we can't eat ice cream everyday.  His fits of rage at this new dictator of a mother, I understand.  If I were him, I'm sure I'd be angry too.  So I'm trying my best to remain level headed, and go down this road with self assurance and fearlessness - because for so long, I couldn't imagine a life with him where my thoughts and actions could remain steadfast and strong. Wish me luck as I conquer this terrible two - I hope it will wrap up as quickly as it started.  He may not understand it now, but maybe one day he'll thank me for being such a monstrosity of a mother that I treated him like he was healthy.  And maybe on that same day, I'll finally be able to accept the saying, "Time Flys" with no confusion and fear.

Thank you for Listening,
Lindsey

NO MORE CHILDREN

Dear Toby and Lyla, 

I need you to know something very important - You are the reason I won't be having more children. Your nonstop, constant, ever-present need to have me hold you, feed you, clean you and medicate you. You are all consuming.  You give me wrinkles, and grey hairs.  You're expensive! And you cry and whine, and scream when the other one is trying to sleep - for that matter - when I'm trying to sleep! You make me want to go to bed early and sleep in late. You climb in the fireplace, and pull down the curtain rods.  You take FOREVER to climb up the stairs in front of me when my arms are loaded.  You ask to get the mail and then throw it in the street.  You choke on itty bitty tiny pieces of food making me forget all logic of how and when to apply the Heimlich maneuver.  I CANT dress you without you sitting still, and I get so pissed off. 

And I want so many more of you.  A whole bus load.  I want to have to get a special van that looks like I'm a caterer or contractor, but instead its just because I need enough rows of seats to fit you all. I want 10 more hands to hold, and feet to kiss.  I want to cut up 5 more hot dogs at dinner time, and pop 5 more tiny straws in juice boxes.  I want to smell a handful more of tiny necks right after bath time, while I'm putting you down. 

But I'm not.  Because we have this. 

This perfect mixture of crazy and content.  A little gremlin for each adult to wrangle.  The perfect array of shades of blue and kinds of balls, and hints of pink and flowers.  We have enough bedrooms, and bathrooms, and budget.  We have the right number of seats in our car, and spots in our king size bed.  We are exactly what we were meant to be - unequivocally unavoidable, Predestined to be together, Perfectly Imperfect.  And I love us.

You are the reason I am not having anymore children, because I have decided to give myself only to you.  When you need my hands, there will be one for each of you - ALWAYS. 

Love, 
Mom 

Lets face it - I'm getting the itch 

If you haven't deducted by the letter above, you should probably assume that the act of getting rid of every baby item in my home has caused me to have a mental breakdown of sorts.  Lyla turns one in a few short days.  She hasn't been able to fit in her baby swing in MONTHS, but for some reason I kept it tucked away.  You know, just in case.  Well, we're cleaning house, and everything's going. I'm feeling a crazy mixture of relief and sadness all at once.  A feeling that EVERY mother has gone through but none can articulate the words to make it make sense.  The bipolar thoughts, crashing against one another; they're so difficult to make sense of.  How do I know I'm done?  What if I'm making a mistake? What if there should be 1 (2, 3, 4) more?  Give me a sign, that I'm done, Please?! 

The world is built for a family of four, my husband affirms.  We have a boy and a girl, what more could we need?  I nod, and reflect, and honestly, whole heartedly agree - and as I do, a wave of sadness rushes over me.  When they don't need me, who will? 

So this feeling, I'm gathering, will NEVER go away.  This feeling of needing to nurture.  To mother.  To protect.  Not just my growing children, but a baby.  I have to accept the fact that it will never go away, and I have to content myself with the fact that even if I had 10 more children, I would still want another one.  Unmistakable now is the love of a grandmother. They get to repeat these feelings, and, give the child back at the end of the day!  It must be the best of both worlds! 

I know that most of the time, I make no sense whatsoever.  I write one thing one day, and the opposite the other.  But what boring kind of life would I have if I felt the same thing everyday? There have to be bad days so I can appreciate the good days.  There have to be sick days so we can give thanks for the healthy ones.  I have to WANT more children so that I can appreciate the two I have.  Embracing negative thoughts, echoing into positive. Thankfulness for the gifts we have been given.  This is fundamentally what I have to adopt, in order to sail through the rest of my life with the dignity and passion my children deserve from their mother.  

Thank you God for these Precious Gifts. 

Thank you for Listening, 
Lindsey 

Time Off

I know what you're wondering and no, I haven't stopped writing - I just needed a break.  So far, writing has been a way for me to vent and relieve stress; but lately trying to think what to say has only added more worry, so I did what any logical person would do - I stopped trying to come up with words.  Its' been the longest I've gone without a post - a whole month, but it's been a really great 30 days, despite a few minor speed bumps.

 Our new Doctor

We had our long awaited visit with our new GI doctor, the one who rounded with us when Toby had his NG tube indicident.  We first met with his Fellow (A fancy term for a doctor who's past their residency but still getting experience pairing with a doctor who has a little more expertise in their preferred field).  Her hair in soft brown waves, glasses, and plainly pretty - she is the kind of woman who doesn't have a TV in her house, because, as she says, she has a park in walking distance.  The kind whose children actually ask for carrot sticks, and legitimately prefer them over cheese puffs.  You know, the mom who we all strive to be but never REALLY get there.  In spite of this, she's not uppity.  Yes she's a Doctor, and yes she actually, probably reads Parent Magazine and follows their advice on a regular basis, but she was as nice as they come. A welcome relief from some of the ancillary staff we've seen so far.  Her tone, when she spoke, was of geniune concern, and I could tell, right from the start, she wanted to help.

Our appointment was one of our regularly scheduled follow ups with GI, but because we were seeing a new doctor for the first time, it lasted about three hours. We were interviewed for what seemed like forever, but at no point was I frustrated or unnerved - I really felt like this new team wanted to leave no stone unturned in the effort to control Toby's motility issues, and keep his quality of life as best it can be.

For the most part, Toby's vomiting has been under control.  He has a hefty amout of help, making sure his systems stay regulated, and his food stays in.  Outside of being completely Gluten Free, this is a one month supply of his nutritional drink.

This is a 3 month supply of his liquid meds

And this is a daily batch.

All of this is at the present time unrelated to his issues with his pitutary gland, which he takes nightly injections for, and has recently started additional hormone therapy once a month with his endocrine doctor - requring another injection to help Toby achieve a proper state of normalness. He is a Trooper, in every sense of the word.

When Dr. K entered our exam room, his loud, over the top personality won Toby and Lyla over immediately.  Remembering them both from our last hospital stay, he smothered them with big hugs and kisses on the cheek, and any fear that Toby had melted slowly away.  What a precious gift God has given us.  Acceptance from a 2 year old - a concept that typcially is considered laughable.

He was very happy with Toby's progress, and cancelled one test we had scheduled to be performed, as there was no need to rock the boat with difficult testing when we were in a very good spot.  A different test was ordered to get a good look at Toby's motility in an effort to make sure there wasn't anything being missed. After a good while catching up and reviewing our next steps, we left happy.  Toby still asks about this doctor by name, wondering when we'll see him again. This makes me smile.

No Daddy, Bubble Guppies

This is how our procedure ended.  In a pile of mush, on the family room floor.

To say it was hard would be an understatment, but it definitely wasn't the most difficult or painful thing Toby's been through.  It was, as best as I can describe, awkward and scary.  This test was to make sure that when food and liquid passes through Toby's digestive tract, it's going through all the right places, at the right speed, and at the right time.  We entered a big room with monitors and machines, and were asked to outfit ourselves with lead aprons.  Toby was still unsure and hesitant, as they brought out IPADs and Thomas, and other toys to distract him. 

We laid him on a large, hard table, as two radiologist and two techs surrounded Toby - Myself and his father standing at his head.  An enormous xray machine was pulled over the top of him and the techs held him down firmly while he tried his best, through tears and screams, to get away.  This was not painful, but trying to explain that to a 2 yo who has been through some tough times is like trying to get through Target without buying 1 thing that isn't on your list - IMPOSSIBLE.  There was no settling him down, so I chose to inject contrast into his mouth instead of trying to continue to bribe him to drink it on his own.  Again, Impossible.  Gagging, choking and thrashing, the techs held him down as I took a syringe and filled his mouth, dose after dose, trying to get him to drink enough of the mixture.  As it was swallowed, the radiologists began taking pictures of Toby's insides, watching the chalky liquid move through his organs. 

And just when I thought Toby had had it, a little squeaky voice chips from the tears - No Daddy, Bubble Guppies - a last ditch effort to get his pops to turn the IPAD from the Lorax to his Nick Jr. Show.  Well, at least he has his priorites right!  30 minutes from when we started this charade, we were done, and after 15 more minutes of waiting to make sure there were no side effects, we were given the green light to leave and walk to our next appointment. 

Toby asked everyone how they were doing, where they were going, and shouted goodbye, soliciting his now normal ohhhs and ahhhs from the hallways as we walked to our next appointment.  Here he played on the firetruck in the waiting room, got called back and stuck in the thigh, and then we all went home to sleep it off.  We get the results at our next visit, but from what I can see from the online results - the test didn't show anything too abnormal we should worry about. 

So, What else is new?

In other news, we have a few new things in our life! 

1. We started with a new babysitter when the last one resigned due to a knee injury.  So far, Toby and Lyla have had lots of fun, and she's just a few streets over.  Not the ideal right across the street - but still great none the less!!  We're looking forward to getting to know her and her kiddos a lot more over the coming months :-).
2. We got new fancy glasses that transition to sunglasses.  Toby has done so well with wearing his specs, I'm astounded.  Our visits trying to fit them, now like a circus in the glasses store with an added set of running feet to keep track of.  But he does so well with them, and looks like a complete stud muffin.  He makes my heart melt.

          3.  And this one, turns 1 this month.  What a loveable little stinker. 

I'm sure you'll see a big long entry about her birthday party and all of our shenanegans, but until then we will continue to be happy and healthy, on the right road to being a typical toddler for good.  Thank you for following.

And Thank you for Listening.
Lindsey

The Birds and the Bees

It happened.  I knew it was going to happen. Any day now... I would think to myself.  I was at our community swimming pool with my two darling little fishies, playing in the baby lagoon and getting some rays - when my daughter took a plunge in the one foot deep liquid and just about had a heart attack.  (Mom now worried during those hours after we leave that she'll drown when we get home. (See: If I don't laugh I'll Cry)) At that very moment, my son began throwing a tantrum because I wasn't taking him to 'ig 'ool (big pool!!!) and both were scrambling to climb up my tanning legs hanging off of the side concrete.  I tried my best to console both - one crying because she feared for her life, the other crying because he wanted to take mine - when a kind faced antique woman asked - "Are they twins?", a glimmer of empathy in her voice.  There it was.  Twins.  

I had always wanted twins.  I mean, when I finally legitimately thought I could bear offspring and not leave them on the roof of my car trying to get out the door, I thought - Wouldn't it be cute and sweet and ideal to have a boy and a girl, both at the same time, so I can get it all over with.  **Cringe**.  Yes, before I even knew how hard it was, I was guessing I would have the feelings I would want to sail through the rough times all at once, and leave them in a shadow of dust by the time my children hit first grade.  Knowing what I know now, the Good Lord knew I would have no way of handling myself with twins, and chose to give me the best alternative.  A terribly tiny son and a gigantic daughter.   

What would I do without these sweet faces?  I can't imagine my life without them. What if they never were? Or never could have been?

The Birds and the Bees

Would the quintessential Birds and Bees conversation be handled differently if you knew your child couldn't have children?  Would you still teach it the same way?  What if they asked to learn about it before junior high - would you let them know they can't have children?  Or would you wait until they're old enough so you could go over the medical reason's why - not just the divine ones.....

This past week Toby had his first check up since being on Growth Hormone Therapy.  Aside from fighting with his systems to combat a nasty ear infection (requiring a repeat injection of antibiotics from his pediatrician), we had our regularly scheduled appointment with the doctor that's taken control of my son's pituitary gland - pumping through his skin a synthetic version of a hormone his body is incapable of producing.  We've talked at length about other issues his absence of anterior pituitary can cause, and he's almost sure that Toby will not be able to produce enough of the male sexual reproductive hormone testosterone when the time comes he'll need to. 

There are indications through all of Toby's hospitalizations and testing that he has not been able to produce a correct amount of testosterone so far.  This is called male hypogonadism.  Like Growth Hormone,it's also produced by his pituitary gland and is very hard to determine at this stage of his life how insufficient he is. Untreated, it can cause delayed puberty, reproductive insufficiency or both.  Because we are concerned at this point, we have decided to trial testosterone injections, to see how Toby's tiny body responds to them.  This means that for 4-6 months, he will get an injection of testosterone monthly so we can evaluate how his body responds.  The goal is that this controlled test will tell us that Toby can receive testosterone as he reaches puberty age, and will respond to it to develop normally into a young man.  Worst case scenario - his body shows no change - and we have yet another road to tackle when he grows that I can't even begin to think about right now. 

I sit and think in the office - softened and confused hearing all of this information - and ask the only question I can think of - "Will he be able to have children?" Following with "I know he's only 2, but I can't help but think about it....."

The doctor's response was warm and polite, and reassuring that I was not crazy and it was a good question....."We won't know if he'll be able to have children until he's older.  There is a chance he will require fertility treatment in order to bear offspring."  He continued to explain to me that after we see how his body reacts to the testosterone, we'll know better how to advance with treatment when he's older.  As a young boy - around 8 or 9, we would most likely be sent to a fertility doctor who can better give us odds and options at that point to harvest Toby's little men and freeze them, in the event he won't be able to produce an adequate enough of reproductive runners when he's a man. 

While the response is encouraging given the circumstances, I am at a loss thinking about how hard it would be to explain to a young boy he can't have children.  I know, please don't remind me.  I'm fully aware of many things.  1. He's 2.  2. They never said he couldn't have children.  3. Even if they eventually say its unlikely he'll have children, they haven't factored in the help that fertility medication can provide. 4. Miracles do exist - I've seen them personally in the form of a sweet baby girl from dear friends of ours.  Who against all odds became pregnant with their daughter after years of heartbreakingly trying to conceive. 

Listen I get it.  But at times I'm just piling this stress onto the rest of the whoa is me mentality I've gotten too comfortable wallowing in, when another thing just piles to the top and I feel like at any moment I'll lose the last corner I can breathe in.  How can I share the glorious, divine, beautiful process of child bearing with my children if one of them won't be able to do it?  Doesn't that completely change the concept of God's work?  What sense will that make to an 8 year old? 

I know I'm asking these questions to soon - and I have no right to torment myself over this dilemma when I should be worrying more about finding Toby new shoes for his fast growing feet and planning a birthday party for my soon to be 1 year old. (Gah!) But in the back of my mind, when I see him walk up to a baby and smile ear to ear, I will always wonder what I'm going to say, and how he's going to respond.  And my heart will break a little bit at the thought I will hurt him again, more than just with my needles, but with my words. 

At least there is good......

Toby's report is in and he's grown over an inch and half and gained over 2 lbs in just 3 short months on Growth Hormone Therapy.  His endocrinologist was more than pleased, and up'd his dose to keep him on target.  Toby now FINALLY back on the growth charts - coming in at a whopping 3% in weight and 0.55% in height.  Hey, when you've been swimming in the dark depths of zeros, seeing any number above that is like being given a gold medal. 

When we plotted his growth, his doctor is estimating Toby to be 5'3, unable to accurately guess how well Growth Hormone will increase this until we see a full year of "catch up growth" and see how his body is responding.  Even so, growth hormone therapy fluctuates so much - so the longer he's on it, the better the chances are he'll far surpass his standard estimation.  My heart swells at the thought of him being "normal" around his peers, and not having to worry about his appearance. Focus on this.   

Toby is HAPPY. Toby is SMART.  Toby can SEE.  Toby is ALIVE. Toby is the cutest thing I've ever seen. (and I have the pleasure of laying my eyes on some pretty cute things through the day.) 

I am so overwhelmed with gratitude that he and my daughter are in my life, and I know that for every trial comes a lesson. I will learn what to say, and how to feel.  And I will support my tiny boy through anything the Lord places in this path.  

"Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think."
     - Christopher Robin to Pooh 

Thank you for Listening, 
Lindsey   

Ear infections are now a matter of life and death

After my flight landed on Friday evening, I made the long stroll through the airport, down the escalator, and on the tram - while my mind was absently thinking random thoughts.  Should I go back and get that Gettin' Lucky in Kentucky T-Shirt I saw?  Why do they make the escalator handle rail move faster than the actual steps?  It's actually REALLY annoying I have to keep lifting my hand up and moving it back a little bit each time.... When I saw it.  My tiny, amazing man, toddling around while his handsome daddy looked on.  He didn't see me at first, and I walked with tunnel vision, anticipating the moment he would see me.  Being away for 5 nights was easy for me (even though I missed the kids terribly, the break was rather nice), but I wasn't sure the affect it would have on him.  Then I heard it - MOOOOMMMMYYY!!!, and again, and again.  The delight, the happiness and love - unmatched.  He was so excited!  What a precious gift God has given me.  My mind, when wandering, has to go back to these moments, because if I constantly think about the negative ones, I will be completely consumed.  

Ear infections = ER

Ok, so maybe I'm being a little melodramatic, but it's the truth.  Ear infections, now, are a matter of life and death for Toby.  Sending us straight to the emergency room with complications his feeble parents can't control.  And I'm having a hard time accepting that for the rest of his tiny childhood, I'll be nervous wreck it will happen. Again. 

On Saturday I attempted the zoo with the kids, husband and my mother.  We lasted a good 2 hours before calling it, and heading home for naps.  I don't know how you people do it, but going out in public places with my two children is an instant headache.  Not to mention I'm immediately pissed at their father, for no apparent reason.  So, we try to avoid these real life situations, and stick to learning from books, and games, and God forbid - Super Why. Maybe in another year we'll try again.  

That day, we had picked up Toby's eyeglasses.  I was eager to get home and try them out, and was shocked when he put them on and didn't immediately chuck them across the room. I had heard from other parents that this was the case, but sure as hell didn't believe them.  They were right.  Finally, he could see, and why would he not want to wear these adorable fashion statements?

The first time he watched TV with them on, it was like a glorious shining down from heaven. Monsters, and he could actually see them. Wow- TV! he exclaimed.  Again, one of those moments I need to remember. 

That night, he woke up in the middle of the night, twice.  Screaming crying, he hadn't had a nightmare like this in a while.  Both times I consoled him and put him back to bed, the later time, changing his fleece jammies because he was burning up.  In hindsight, I'm sure he had a raging fever, and I didn't catch it.  Toby 1, Mom 0. 

Sunday was no better.  Whining all day and all night, I finally got him to drink 2 oz of Pediasure with Tylenol in it before his nap.  That lasted two hours before he was up, and inconsolable.  30 minutes he screamed and kicked. He held his stomach, then his head.  I couldn't touch him or the most devilish noises spewed out of him.  I was worried, and so was Parker.  Hoping they would find something causing his pain and his loss of appetite, I headed to the urgent care Sunday night.  After getting an ear infection diagnosis, we headed home. Too late to hit any pharmacies near us, I made a plan to get his medicine in the morning, and douse him with Advil when we got home.   It didn't work, he threw it up, but he went to bed with a bottle, and I hoped and prayed he'd drink it through the night.  I was mainly concerned with his blood sugar. Not eating meant no added sugar, and your body only stores so much.  I was right to worry, he ran out. 

Monday morning we woke to him screaming, sitting in a pile of his vomit in bed.  Parker, cleaned him up and laid him in bed with me to calm down.  He was pale, sickly and pissed off.  I took his blood and his sugar read 55, far from the 70 he should be at minimum.  He would not drink juice or a bottle, so I squeezed gel icing in his mouth, scurried in the car, and headed off to the children's ER.  Calling his endocrinologist on the way, it was too early for the office to be open, so I spoke to the fellow on call.  Toby was not responding to me in the car, after I repeatedly called out his name.  The doctor was too concerned for me to make the trek downtown, and asked for me to stop off at Good Sam ER which was closer by, on my way.  I agreed, and just as I was pulling in the lot, Toby started vomiting again in the back seat, confused, fussy and incoherent.  I ran inside and they took me back to a room to get his vital signs.  They made a plan to get him some meds to help him feel better, in hopes that would make him want to eat.  Obviously, they had no idea who this child was.  That said,  I was happy with the nursing staff, who quickly gave him a suppository of Tylenol, anti nausea medicine, and an injection of antibiotics to kick-start the battle with his ear infection. 

Not one time did they check his blood sugar - even after hearing his whole history.  

WHY DON'T PEOPLE LISTEN. WHY DON'T THEY BELIEVE OR TRUST ME? 

I was checking it every hour, it had jumped up to 78 after the icing, but fell back down to 60 as we were being discharged from Good Sam.  I packed him back in the car, and headed to Children's ER - my endo having called ahead to let them know we were coming, and how he should be monitored.  Luckily, Toby drank 4 oz of Pediasure on the way there, feeling better from the meds he'd recieved at the first ER, I presume.  This got his sugar back up to a normal level, and thank GOD, it stayed that way for the hours we were monitored there and discharged. 

Why does Toby's body work the way it does?

I've spent a good part of an entry sharing with you what Hypoglycemia is, and how it has a terrible affect on his body, but I'm not sure I've told you a lot about the reason WHY he's hypoglycemic.  So, Here Goes. 

Remember me telling you that where Toby's pituitary gland should be in his MRI, there was empty space?  This is a result of it being deformed - completely missing the front (or anterior) portion.   The pituitary gland is responsible for a whole bunch of really important things***:

Where is the hormone produced?	Hormone(s) Secreted	Hormone Function
Pituitary Gland	GH (growth hormone)	Affects growth and development; stimulates protein production
Pituitary Gland	TSH (thyroid-stimulating hormone)	Stimulates the production and secretion of thyroid hormones
Pituitary Gland	ACTH (adrenocorticotropic hormone)	Controls adrenal production of cortisol which acts as an anti-inflammatory; maintains blood sugar levels and blood pressure. The most likely hormone, if deficient, to place a child in a life threatening situation.
Pituitary Gland	LH (luteinzing hormone) FSH (follicle-stimulating hormone)	Controls reproductive functioning and sexual characteristics
Pituitary Gland	Prolactin	Initiates and maintains milk production in breasts

During Toby's hospital stays, it was concluded that his pituitary gland was producing an adequate supply of TSH and ACTH, however, was not producing enough GH.  As a toddler, he shouldn't be producing a lot of reproductive hormones, and as a male, no prolactin.  He is diagnosed with Isolated Growth Hormone Deficiency.  Every year he will have to have labs drawn to be sure the other levels are functioning normally. If not, it would require additional hormone therapy. 

So what is GHD?

Basically, growth hormone is secreted by the pituitary gland (often referred to as the Master Gland). The pituitary Gland is about the size of a pea! It is in a bony cave like area at the base of the brain.  GH is the key to all cell growth and reproduction. It helps the body maintain a healthy immune system, helps balance other hormones and body functions, helps to maintain muscle tissue (including the heart and lungs), it is essential for the body to be able to use up and get rid of fats instead of storing them, and helps the bones regenerate cells to stay healthy and strong as well as grow. 

The anterior section of the pituitary gland has cells called somatotrophs. These cells make, synthesize and store growth hormone (a protein hormone comprised of about 191 amino acids).  These are what Toby is missing, and why he's not producing GH. 

The real problem with a growth hormone deficient child is not what we can see - Ie. Short Stature or low weight. It is what we cannot see. His height and weight are lowest of priority when treating his deficiency, even though as he matures, this will probably be of most importance to him. 

• Because GH stimulates the pancreas and liver to cooperate with leveling blood sugar, lack of GH slows down this process and causes patients to be hypoglycemic. 
• Untreated Growth hormone deficient children have a higher risk of cardiovascular (heart) problems leading to cardiac death in adulthood.  
• Untreated growth hormone deficient patients as adults, have more fat, less muscle, higher risk of osteoporosis , cannot tolerate exercise well, and cannot metabolize (get rid of) fats causing heart and other problems.  
• The majority of children are identified with growth hormone deficiency around the age of 5 (when first starting school) or early puberty years when the gaps between these kids and their classmates become really noticeable.
• We are so lucky we found this so early, and were able to start treatment as early as medically appropriate. 

If I knew then what I know now.....

From this point on, now knowing what we know, anytime Toby is sick and not eating, he's at risk of another hypoglycemic episode - as his body's natural defense to prevent his from happening doesn't work. He was sick so many times as a baby, so many instances of him bottoming out, and I had no idea.  I can't even begin to explain the gratitude I have to the Lord for watching over my son, protecting him, and preventing the worse possible outcome from happening.  

Yes, I now live a life where I'm constantly worried that even the slightest illness will send us spiraling out of control.  But I'm taking these setbacks in stride, and using them as learning experiences for our future.  I'm focusing on the positive.  My son's exuberant love for me - shouting as mightily as he can when he sees me.  Or the moment when he saw, clearly, for the first time.  These are the things, try as I might, that I will focus on. 

Thank you for following, and 

Thank you for Listening. 
Lindsey  

***Medical information courtesy of the Magic Foundation.  www.magicfoundation.org

An Apology

Two things need to be known.  First, it's that time of the month. I'm sorry, I know this is totally TMI, but I have to make it clear why my normal take no prisoners attitude about parenthood has turned into a pile of weepy, sappy mush.  Second, I'm away from my children on a business trip.  I don't hear their screams, or see them falling and narrowly avoiding sudden death every hour.  I haven't changed dirty diaper after dirty diaper in a few days.  I'm only feeding and bathing myself.  It's important you understand this. 

In my last post, I used the terminology referencing my motherhood as sucky.  And that it was considered servitude.  I'm sorry.  In hindsight, I should have chosen my words more wisely. I'm a jerk.  

While I was at the airport, I witnessed a child leaving their mother.  It was obvious this mother did not want their child to go.  Blatantly. Obvious. I don't know where he was going, or why. Maybe he was going to camp, or on a mission trip, or perhaps with another parent for the summer - but one thing was made clear - there's no feeling that can match a child being taken away from a parent. 

Sometimes, when I blog, I'm torn between being brutally honest with myself and others, and walking a line with being insensitive.  Having a passive audience as a sounding board can be both good and bad at the same time.  If they read it and they don't "like" it, do they not LIKE it? Maybe it's my hormones, maybe it's the absence of my children - but I'm second guessing the terminology I used last post.  I'm sorry to any parents that may have read it who were torn or in complete disagreement, because they don't have the same luxury of being with their child. I mean, really sorry.  Like water wells up in my eyes sorry.  

No amount of worry, or lack of sleep, (or washing or cleaning or money - the list could go on) would EVER make me ungrateful or regretful of having my children in my life.  I'm hopeful you understand that every venting post I write, is just that, venting - and is in no way intended to be taken in its literal form.  I KNOW there are other mothers reading this that completely understand where my words stem from - but I'm also fearful of those mothers and fathers, or grandmothers and grandfathers, or childless adults - who read my entries and long for days or times when they can see children in their lives.  I envision them saying - I long for the days of a baby to wake me up in the middle of night asking for my snuggles.  I yearn to hear the laughs of a child.  I wish I could be back with my kid/s.  

I'm so sorry.  I am beyond blessed.  I am eternally grateful.  I am humbled each day.  I am thankful to God for a reality check, and I am thankful to you for staying close by and following our story - without judgement.  We love you. 

Thank you for listening, 
Lindsey 

Swimming upstream The Denial River

I wish I could start this entry telling you how wonderful things have been going.  That we have seen such a drastic improvement with Toby, and I have nothing to share but positive grateful thoughts.  But alas, I've been in denial, hoping a praying as each day passes that it won't be like the last - and it is.  We're back into our vomiting cycle.  And I'm furious at myself. 

I've learned over the past year of testing, trials, and tribulations to not get my hopes up.  While my key theme is keeping optimistic, having bright cheery thoughts in the face of pain, pushing through my fear with faith and hope - sometimes I think it might be better to be a pessimist. Then you aren't let down when things don't work.  

I'm not sure why I thought this time was it.  We've tried new things before and they haven't worked, and I'm okay because I don't get my hopes up - we crumple that hope in a ball and throw it in the can.  But this time, for some reason, I just KNEW this was it.  I for sure thought this would stop his vomiting and we could move forward into some normalcy with eating and growing.  But, about 10 days ago, Toby vomited while choking on a piece of cereal.  Having shoved too many cocoa balls in his mouth, I smacked his back to dislodge them, and they popped out, along with the rest of the contents of his stomach.  I disregarded this episode as being connected to his issues.  But the next day, he threw up a little again, and the next day, again while eating watermelon.  Each time, I disregarded it as a singular episode, not related to his problems, because I wanted SO bad for this to be over.  I was indeed, swimming upstream and against current, in the Denial River.  

Each day Toby takes 3 different medications multiple times throughout the day to prevent his vomiting. 

A single overnight at grandmas now involves an inventory of supplies and directions to bring along.  

Its been 10 days in a row of vomiting. Wednesday the kids were at the other babysitters house - the original - and I just so happened to still be on that side of town when I remembered I forget to drop her payment off (as my mother was picking them up this week).  I had pulled in the drive and hid the money under her flower pot on the porch, then gave her a ring as I was pulling out of her driveway to let her know.  When she answered, she shared that Toby had just projectile vomited, 4 times.  I turned my car around.  Sometimes you are just meant to be in the right place at the right time. Any other day, I would have been 30 minutes away.  Not today. 

Toby was not happy, pale and splotchy from getting sick.  I checked his sugars and gave him a bath, while the sitter tended to Lyla and the other children.  I phoned his multiple doctors and they all gave me the green light to stay home as long as his sugars stayed in check.  They did the rest of the day, and we chalked this episode up to the madness that is consuming his tiny body.  I hate it. 

Our GI appointment moved up, and more testing scheduled.  God, grant me the serenity. 

On a positive note??  We picked out our frames.  I really wanted to get him either the hipster thick black frames, or the nice grown up rectangle ones - but these were the only ones we could find that fit his face.   I think they make him look like a tiny, sophisticated, smart, heart throb. Like if Bill Gates and Brad Pitt were morphed into one man and went back in a time machine to his toddler years.  Or, I also think he now looks like the kid from Jerry McGuire. Also pretty awesome. 

Did you know the human head weighs 8 lbs?

We're told that he really needs oval lenses because of the type of issues he has - its a good thing he didn't like the rectangle ones to begin with :)

Or the bright red ones for that matter. 

Servitude 

The other day, I was scrolling through my feed, clicking on links and blogs and photos, winding through the net  - and I stumbled my way onto a blog of a sweet new mom explaining why she didn't have time for anyone else in her life.  The photo showing one baby attached to her boob, and a toddler eating cereal off the floor, she continued to invoke humorous empathy by sharing the daily struggles raising two blossoming kiddos can cause. Embedded in her message, the fact that she really did, in all honestly, want to make time for her friends and adult time - but she just couldn't.  It was in no way their fault, and she loved them to bits and pieces, but she just needed a little more time to get past these rough times with her bambinos, and then she would be free to get caught up on much needed grown up time.  

The blog, for me, was just another one of those whoa is me mom blogs (hey I like them, I get them - Hell I've even written a few... but aside from a small laugh or two, she ain't sayin' nothing I haven't already thought myself). But, I was astounded when I read the comments.  Generally speaking, I don't like to keep scrolling to see the comments (I find I get angry and annoyed very easily by these, and frankly my children and husband do that for me enough, so I don't need another avenue to acquire those feelings). Reader after reader posted comments like - "This just sounds like a list of reasons why NOT to have children".  Slamming the blogger - "I sure hope your "friends" are there when you finally make time for them."  The list went on and on. Surely, SOMEone would post an encouraging word or two - SOMEone whose been there and understands.   

When I got pregnant with Lyla and learned my children were going to be 17 months apart, I was ecstatic (after the shock wore off of coarse).  Time and time again, people would say, you're going to love that they're so close in age - it's perfect!  Not once did someone respond honestly.  Not one person, even my own mother or mother in law, who had been through raising children this close in age, really give me the 411.  Let me be the first to say - this SUCKS.  Its hard.  Not like, taking the math section of the SATs hard,  I mean like - trying to run a marathon when you can barely go up a flight of stairs without being winded hard. I realize, though, this too shall pass.  I do understand that one day the positives of having them close in age will most certainly outweigh the almighty negativity that is me scrambling to keep my head above water, keeping them alive and thriving, and on a good day, happy.  

Take away the fact that my son has numerous medical issues, even a perfectly healthy toddler and a perfectly healthy baby would most certainly cause the exhaustion and toil that my children do.  Why is it that, even when we blog to a world of strangers, we have to try and put a positive spin on it.  Why does everything we say have to be happy and cheery?  Can't I just tell a friend - I'm sorry, I would much rather close my eyes than sit at a bar and have a drink with you?  The last time I checked - friendship wasn't measured in how many times one sees each other in a given time period - or for that matter - how often they speak to one another.  And thank God I didn't have any friends respond to my disappearing act that is motherhood in a way that would make me feel guilt for choosing sleep and quiet over an evening with them.  No amount of time or distance will ever splinter a true friendship - and for that - I am grateful to you all.  You know who you are. 

To anyone reading this that makes an assumption my balancing act as new mom is a reason not to have children, let me clear one thing up.  Yes, parenthood is a herculean task.  Yes, I want to strangle my husband for no reason because my kids won't stop crying.  Yes, I no longer have gobs of money to spend on things just for myself. But I do it, because my parents did it.  And I love my parents.  And if my relationship with my children is anything like what I have with them, I will be forever indebted to God for blessing me with such grace.  

This is all worth it if I can help assemble somewhat of a upstanding human being in the end, that will take care of me when I can't take of myself.  I can guarantee you one thing, my husband and I will be much harder to diaper and change as old folks, then they are right now as our children - and for that - I will push through this servitude that is motherhood.  

These smiles make everything worth it. 

Thank you for listening, 

Lindsey