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 

If I don't laugh, I'll cry

The other day, my husband made the statement  - "You know, about every 6 hours one of our children almost dies" - Spoken coyly after Lyla decided to learn how to climb up stairs and immediately fall down them amidst unobservant parents. (Okay, an unobservant Mom, but whose keeping tabs....).  In all actuality, it really got me thinking, and he's absolutely, 100% right. (Put that one in the books). Even if my son was completely healthy, I would still be dealing with the same gnaw at your nerves worry that every parent deals with, because undoubtedly, through our fault or not, they almost seriously injure or disfigure themselves about 5 times a day.  I feel like I have enough to worry about, in all honesty.  But with my kids the age they are, I have so much more to acknowledge - Like, if the produce I'm feeding them has GMOs (And now I have to learn what GMOs are!), and if the sunscreen I'm using is actually bad for them.  Did you know that they produce baby sunscreen that's actually harmful to them?!  And on that note - were you aware that your child can actually drown HOURS after they've left the pool - a new study shows. I mean for shit's sake really? If I don't laugh, I'll cry. 

Spectacles 

noun: Eyeglasses

noun: Something Showy; exhibition

I shouldn't have been surprised to hear that Toby needed glasses.  When it can go wrong with him, it typically does.  We had been referred to ophthalmology after learning about his Growth Hormone Deficiency.  His brain MRI showed no issues with his optic nerve, but his endocrinologist suggested we just take him to check things out - seeing as how its typical for buggers with his condition to have vision problems.  Well, turns out he was right. 

It's never a good sign when 3 minutes into your appointment, they ask if its "nap time". No, it's not, I counter - He just really doesn't like the doctor's office. It's weird how I can be in complete agreement and slightly offended at the same time.  Our appointment began 30 minutes late at 1245, and started off poorly when the nurse made any slight attempt to shuffle things in front of his eyes - lending her to give up without getting much of any feedback.  Toby, like a proud lion, strutted around the room pumped up with the thought that he had won.  He had not. I held him down as they dropped dilating drops in each eye, and you would have though they were gouging each one out with a spoon.  She politely tells me they sting a little. Thanks for the warning. 

I tried to explain to him that we were here to get his eye's examined, and like your typical 2 year old's assessment of that conversation, he started sticking everything in his eyes - like the arm of the chair.....Makes sense. 

After our brief stint in the room - we are escorted to the lobby to wait until the drops are in full effect. You can imagine the pleasantness that was my son, now waiting in the lobby for more good to come.  I could not contain him - he was a demon child.  He screamed, and cried, stomped and rolled.  Drooling madness - He literally rammed himself against the wall, in a room full of people, and I just had to sit there, hold him, and awkwardly laugh, as best I could. With complete strangers, gawking at me.  If I don't laugh, I'll cry. 

My angel....

An hour later, we are called back.  I am both furious and relieved simultaneously. A pleasant, petite doctor in a pencil skirt and dark black braids entered our room. In a thick African accent matching her name, she introduced herself, her resident and nurse, and immediately gushed that Toby had stolen her heart. I am softened a bit.   

Heart breaker with long lashes......

She tried to examine him the nice way first, but after seeing quickly that it wasn't going to work, I gave the go ahead for me to hold and the nurse began washing her hands.  After a few minutes of pinning his arms down and his eyes open, the doctor had all of the information she needed, and my sweaty son was released from his hold and collapsed on my shoulder. 

Following a few minutes of entering data into the computer, graphs of eyes and charts with numbers, they share with me that Toby has astigmatism in both eyes and is farsighted.  If you don't know what this means (I didn't either so don't worry) - Astigmatism means that the eye is not completely round (His are in the shape of footballs) and light can not refract correctly through the lens making seeing more difficult.  Farsightedness means he can see things at a distance, but not close up.  He needs glasses, she says, and he needs to wear them all the time. Even though I am not surprised, I am flustered and let down.  I am sad and sorry, again.  What more does this poor boy have to go through.  If I don't laugh, I"ll cry. 

Damn you and your gorgeous baby blue football shaped eyes!!  

We left the office after 2 hours, and went home to sleep the next few hours away. 

A Bull in a China Shop 

With script in hand, we went to the optometrist's office to get fitted for our glasses yesterday. I think the ladies working inside may have thought this was a hidden camera show.  What is that saying - A bull in a china shop?? - We can safely, alternately use a 2 year old in a glasses shop.  We tried the most recommended pair - a rubbery bendy frame that secured behind his head like goggles.  We couldn't wrap them around his head without a tantrum.  (You see, Toby does NOT like things around his head.  It's a sure bet that item is chucked far across the room). Toby thought the best way to respond was to Tazmainan devil (Yes, I've used it as a verb here as it was the only fitting one I could think of) around the store - slamming cabinet doors, reaching into displays and knocking them down, throwing frames left and right.  My face was flushed with embarrassment and frustration. 

We were somewhat successful with the next pair - a cute, flexible metal set that had small frames bending all the way around his ear.  I couldn't get him to put them on correctly for any period of time - but he had them on crooked for a good few minutes - and that was befitting enough for me.  

We jotted down the correct size of frames he needed, and were told they'd order a few more styles that might suit him, as they didn't have every kind available for us in that store.  We go back in a few days to see the other samples, and make our final choice.  I'm sure the two older women working in the hushed, peaceful shop looked at each other and said - "Not It!!" as we left with our next appointment time scribbled on our reminder card. If I don't laugh, I'll cry. 

Lyla had to try on a few styles herself!!

That day, we decided for the first time since Toby has had his Celiac diagnoses, to take him out with us to eat lunch.  It's been 3 months since he's been to a restaurant.  

We had packed a good assortment for him to nibble on, but I decided to give him a potato chip at the restaurant. Naturally, potato chips are gluten free, but sometimes certain seasoning isn't - or the way they prepare them.  We took our chances, and we paid for it.  A few hours later, he was throwing up.  I feel guilty and letdown.  If I don't laugh, I'll cry. 

Even though we have another hurdle to jump, Toby is still growing and is still your typical, merry 2 year old.  He amazes me each day, with new sentences, and abilities.  His love for his sister, growing each day - as he learns what love brotherly love is, he learns new ways to exhibit it.  Like snuggling and hand holding (in between headbutts and toy stealing).

I've had time to digest the news that he needs to wear glasses all the time, and I've let it sink in and melt.  At first, I'll admit, I was worried for the wrong reasons.  My son is half the size he should be and now, lets add another motive for kids to target their ridicule at.  Why are the things that adults find most endearing about littles the same ones that cause them to be victims of bullies? Why shouldn't I be happy with a diagnosis that he may grow out of? That we found it early and they make something to help him see? .... that it isn't worse!? Why do our minds ALWAYS go to the ugliest places?  As a reminder - that things CAN be worse - and you should be thanking your lucky stars and laughing about it  - because if you're not, you're most certainly going to cry. 

Thank you for listening, 

Lindsey