Remember This Moment

A letter to my future self - as an empty nester.....

Do not open this letter until your last child has moved out of the house.

December 30, 2014

Dear Lindsey,

If you're reading this, it means that your last child has moved out of the house.  The house that burnt down and was rebuilt, just for you and your sweet tiny family.  Grab yourself a glass of wine, and get comfy on your crumbless couch. Hopefully by now, you aren't using the wine rack as toddler shoe storage, and the cubby where it's supposed to fit in your hutch isn't storing diapers and diaper bags.  Remember this set up??

This year, 2014, has brought you so many hardships and joys.  Right now, the younger, albeit hopefully much more overweight and ragged version of yourself, thinks it's a great idea to remind you of everything you've overcome - because even though this year has felt like an eternity, in the big scheme of life, this will just seem like another fleeting moment.  You owe it to yourself, to be reminded.

These past few weeks, you were waiting on test results for a life changing complication for Toby.  He has been through the gamut.  For months now, he's been amazing.  Growing so fast you can't keep clothes on him, or shoes for that matter.  But he started showing symptoms of another hormone deficiency - also controlled by the deformed part of his pituitary, and this one isn't as easily treated as his already know Growth Hormone deficiency. Luckily, you don't need to relive this moment, because for now, this hormone is fine. Many bruises later from strong hands sifling blood, you've seen the results online, and can exhale. You filed this relief in a folder housing a year's worth of worry and pain, tucked it neatly inside the filing cabinet, and locked it shut.

 

 

You may need to relive this again, and again and again - as his condition can never improve, and only get worse.  But, you have learned in the short 7 months since its been discovered how to cope, and how to thrive and how to remain optimistic when the chances of something spiraling downhill are a threat hovering just around the corner.  Remember that feeling.  Close your eyes now, and breathe. 

Remember that day when he was cold and pale.  Unresponsive.  Remember that moment you thought you wouldn't be able to live if you didn't have him.  Wipe your eyes and breathe. 

Remember the tests, the constant needles.  Tubes - In and out, tangling, bleeding, vomit.  The messiness that covered those hospital rooms, mirroring the messiness in your brain, trying to understand what was happening, and better yet - WHY.  Stop, and breathe.

 

 

Remember all those doctors and nurses, who made you feel surrounded.  Not alone.  Remember all your new friends you've made.  Gobs and gobs of new parents just like you, who had been through, or were going through the exact things you were.  Giving advice, reassurance and friendship.  Hopefully by now you've been able to provide comfort and solace for new parents who have babies going through the same stuff - because you've been there, and have survived.

Now, take a big gulp of wine, and pat yourself on the back.  Because if you're reading this, it means you did it.  Right now in 2014, you're thinking - who cares what your son grows up to be, as long as he grows up.  He can love whomever he chooses to love, go to college or go to work, stay at home for as long as he wants, or leave when he's 18.  Many things that parents are wrought with worry about, you take a breathe and exhale.  Because if you are dealing with any of that right now, it means he's here.  And that's ALL that matters.  You wouldn't have known that feeling, unless you were so close to losing him. You are blessed. 

And your daughter, at just 15 months old right now and the size of almost a 2 year old - just amazes you everyday.  Her strength, almost that of a adult! Making keeping track of and containing her all the more exhausting.  Exhaust. Two straight years of it.  You might not be able to remember everything now - it may be fuzzy and you may only want to remember her absolutely adorable smiling dimples, but it was there.  Dont' forget it.

These past few weeks she's been sick.  Started with the flu, and ended with croup (again). Remember those nights where she was up all night crying and coughing.  That switch of annoyance because you've been woken up, changing to concern and the 'there's-nothing-I-wont -do-to-make-you-feel-better' mode of a mother.  Standing in the shower at 5am so she can finally sleep on your shoulder - your back hurting and cold from the warm water (instead of scalding like you like).  But she's sleeping, finally, drooling on your arm as the warm water beats on her back.  Remember this moment. 

The constant standing, and running, and wiping and cleaning.  Diapers and wipes for days and days.  Bottles, sippys, cutting up tiny food and vacuuming until you can't vacuum anymore.  Crumbs in cracks, stains on brand new outfits.  Your bathtub downstairs is a hamper - its literally full of clothes and blankeys and sheets.  Carseats and coats - off and on.  Monitors, humidifiers, medical supplies.  Remember this moment. 

Its been years and years.  You've forgotten this haven't you.  You've forgotten how insanely hard it is to raise children, because you did it.  And like everything that takes hard work, you got through it, and the rewards have paid off exponentially.  Don't let the good blind you from the dedication it took.  Don't be sad they have left.  Don't think - "What will I do now?", "Who will I take care of?" , "When they don't need me who will?".

Your husband. 

Man, what a year.  They say weddings and funerals bring out the worst in families.  Add illness and raising small children.  You've snapped, he's snapped.  You have no other vent for your frustrations, or worry or exhaustion except for each other.  And it shows.  You've learned how to love someone so completely, but at the same time need to be so far away from them.  It's OK.  Take a breathe.  He's right there with you, like he always has been. 

This year, you've truly learned what it means to be a team.  Acting together, for a common goal - to have happy, healthy children.  And lastly, a happy, healthy relationship.  Sometimes team members can be selfish.  You are guilty of wanting a certain outcome so bad, you've closed off your team member and done things the way YOU think they should be done.  And you lose the game.  You're angry, more at yourself, and your teammate is angry, for not working with him.  And at times, he takes the ball and runs with it, in the opposite form you wanted him to go, and he loses the game for you.  And you both pout until the next game day, and you have to again, work together to get it done.  Some games are beautiful - neither one has errors, and the win is by a landslide.  Other days, you barely squeak by with a win. And some days, you just plain lose.  But at the end of the season, you come together because you know you both want the same thing. You both care deeply.  And unlike in sports, you both love each other more than anything. 

I hope by now he's still sitting in his chair, but now he's got control of the remote.  He's not grumpy because he wasn't woken up for a binky or a bottle in the middle of the night.  I haven't elbowed him that it was his turn in many, many years.  He can sit his drink on the end table and baby hands aren't picking it up and running with it, spilling along the way with each pitter patter.  Oh, there's the carpet cleaner again.  And yep, the vacuum.

Despite every argument, every snap and your backhanded comments to him - you couldn't have asked God to place a better man, and father, in your life.  Remember this moment.

If you ask any mother with grown children, what its like to raise them from babies, I gaurantee you'll only hear the postives.  You may hear that there were difficult times, but the statement is always followed by - "It's worth it."  I hope that you are the same way.  I hope that when someone asks you, you only recall the joy and happiness of this moment in time.  But, please, read this and do not completely forget everything your team has accomplished.  The victories and losses over time, molding you into the mother and wife you've always aspired to be.  Don't forget the hardships, because it's those lows and losses that made the wins and the highs so memorable. 

Here's to many more years, with your handsome husband, in cleanliness, in silence, in health, love and peace. 
 
Thank you for listening,

Lindsey

So there really is a such thing as 'Too much of a good thing'

Dealing with Loss

I used to hate kids.  Never really babies, I can't say I ever hated babies, but kids.  You know the ones aged ohhhh 12-25.  The ones who should know better but choose not to. The ones who just misbehave, and act like idiots, with no purpose driven lives.  I would see them at restaurants, or at stores, or at the movies acting ridiculous, and I would mutter to myself like an old fart how ignorant and misbehaved these children were.  Me all 10-15 years their senior. Seriously - I should have just sat myself in a rocker and grumbled the day away in these moments.

These past few years, however, I feel blessed to have been enlightened.  Maybe I haven't actually been enlightened, but I feel so much better about terrible kids now that that I have an abundance of ventures under my belt.  I think for once in my life, I'm going to TRY not to grumble.  I'm going to smile sweetly and say to myself, in time.

Let me explain.

Recently I was driving behind a car, speeding around with reckless abandon, and instantly my mom brain kicked in - thinking to myself how I would rip each of their eyeballs out if they caused an accident and my children were injured.  It was in these atrocious thoughts that I noticed his bumper sticker.  Loud and Proud it said "I love Crack Whores". That's right folks, and the driver was maybe all of 18 years old.  What kind of kid in their right mind puts this on their car?  The same kind that drove the way he did. 

Don't believe me?

I had to catch my thoughts, and I had a while to process them because I was stuck behind him for quite some drive. Immediately I associate this young man with all tweens, teens and 20 somethings who actafool.  (Act a fool. If you didnt' know, you can now use it mushed all together in one word.) You can spot them from a mile away, and if you're like me, you would have tried your best to avoid them at all cost so your blood pressure stayed in check. So what is it that makes them act the way they do?  It surely can't be parenting.  I can guess for some of the cases not having a good example is a root cause; but I too was one of these obnoxious kids at a point in my life (I'm not fronting), and my parents did a great job raising me.  So why do we go through these phases?  Why are all kids assholes at some point in their life?

Because they haven't had the time yet to experience the profound loss, struggle, love or reward as adults have.  To struggle through a pain or endeavour greater than the love you have for yourself, is, in the end a reward.  It's these kids and young adults who haven't yet had to experience such grief and hardship, or for sure they would be thankful each day for what they had, and would be focusing on calm and peace - instead of chaos and mischief.  I don't fault them for not having the life experience to understand they don't have to be assholes.  In fact, I'm glad they haven't.  I just wish that it took something other than pain, to make individuals better people. 

Think about it. Inevitably, it's always pain that turns us into something better.

Maggie

With teary eyes I have to tell you about our dog Maggie.  I had hoped to share more pictures but they are tucked in some far away box, in a freezing cold storage unit, and I didn't have the cahon'es to tackle getting them.  So for now, the most current picture will have to do :)

A little over week ago, I made the difficult decision to lay this sweet girl to rest. 

Last month we noticed her breath getting awfully stinky.  Not the typical I just ate frozen poop because I'm a dog stink - I'm talking about green fumes from the mouth ala Pepe Le Pu'. I knew she was due for her yearly dental cleaning, but I thought I had a few more weeks to put it off.  Fast forward a few more weeks and not only was her breathe more wretched by the day, I noticed a small bump on her lower jaw.  Thinking it was an abscess, I called immediately and had her dental appointment scheduled for the next week. 

The rest happened so fast, its almost a blurr.  After I dropped her off, the vet called and said it wasn't an abscess after all - it was a tumor.  Sitting on both sides of her teeth, through her jaw, she was unable to remove it.  Needing a biopsy to determine the kind of tumor it was, she gave me the news that she wasn't optimistic it was going to be benign, or that we would be able to remove it.  Maggie was started on antibiotics and pain meds.  The smell?  It was her flesh dying.  Ugh. There was nothing we could do about it. 

Just a few days later, the mass had doubled in size.  I received the call back that it was cancerous, and in order to remove it we would have had to remove half of her lower jaw bone.  Additionally, she would need radiation.  After all of that, she had 6-12 months to live.  In just a months time our beloved family dog went from happy and normal, to given a death sentence. 

How quickly things can change.

 

I made an appointment to end her misery, and thought I would spend the next week giving her cuddles, but I didn't work out that way.  I had been giving her as many pain pills as I could,but the meds didn't prevent the damage the tumor was doing to her mouth.  The size of a golf ball now, it was literally oozing, bleeding and bubbling.  I was wiping her mouth, trying to make her comfortable, all while knowing the end was in sight. 

Why was I putting her through this?  I was being selfish. I made a call and that night took her in.  Tears in my eyes driving there, tears in my eyes driving home.   She had been by my side for 11 years.  This 3 week old puppy I rescued from the shelter. I nursed her through not one, but both eyes being removed due to a genetic condition.  She "watched" me marry, and have children, and become a guardian over them. 

What a precious gift God has given me. But my, what a harsh reality that ALL THINGS CAN CHANGE.

Too much growth?

So for real guys.  I'm being honest now.  Did you ever think for one second when we started this journey 6 months ago we would have grown 6 inches and gained 10 lbs?  Because I surely didn't.  I had no concept that kind of growth was even humanly possible.  But it is. And we've done it.  Now happily sitting in the 25th % for height and the 50% for weight - Toby is a shining example of the amazing progress that's been made in health care.  He's been on a regimen of nightly shots, monthly hormone therapy, a special diet, and multiple medications to keep his systems in check.  But, what happens if it's too much of a good thing?  Can he grow too much?

Yes, I learned. He can.

When we started our medical mystery mission, Toby had many tests performed to figure out levels of hormones in his body.  I wont bore you with the specifics, but I'll tell you when it came to growth hormone and IGF1 (the hormone that is stimulated by growth hormone), he was barely producing anything.  Waaaaay off the charts low.  It was made glaringly obvious that he was deficient and that he needed the help of synthetic GH injection, most likely for the rest of his life.

Our treatment, as you can tell, as been tremendous!  At our appointment this week, our Endo was amazed at his response to the medication.  That said, Toby's bloodwork was taken again to make sure we were overdoing it.  Genetically Toby is right where he should be, so we haven't done anything wrong - but there are side effects of having TOO much IGF1. Really bad ones.

In young people, IGF1 stimulates bone growth and development of organs like the heart, liver and kidneys.  But as a child grows into adulthood, too high IGF levels increase opportunity for genetic mutations leading to cancer.  And once a cancer forms, IGF1 will promote its growth just like it does for normal cells. Studies have shown that people who grow tall because of higher than normal levels of IGF1 in childhood have a HIGH risk of developing cancer in adulthood.  Retaining a high level, beginning this young, is even a higher risk.

Add all of this info with the fact that new studies now link Lymphoma with patients with Celiac disease, and we have a variable volcano of horrible possibilities waiting to erupt.

My mind wanders recklessly.  Knowing the same treatment that is helping my son thrive, can also do so much harm, if not monitored properly. We'll lower his dose, and take more labs consistently to make sure we aren't creating a breeding ground for horrible things.  But again, I feel this grumble in the pit of my stomach, just as I was on such a big high.  Toby's levels came back almost DOUBLE what they should have been.  Sending my thoughts to the future.  To the young man I hope he becomes.  And to a son who has to put up with so much more because of treatment options we're giving him today.

Growth Hormone for Toby is NOT an option.  More than the fact that he wont grow, his organs wont develop, or his bones and muscles.  He can't maintain his blood sugar, and the core systems making his body function would be severely malnourished.  This I understand and have accepted.  I am not giving my son growth hormone to make him tall.  I am giving it to him so he can live. Over time, as we are watched and monitored, we will be smooth sailing on a yacht of normalcy.  Levels right in the middle, as we perfect his doses.  But until then, I'll always think about the future, and the bad things that could stem from our learning curves. And fear that I'll replay all that guilt that I've forgotten about all too quickly seeing him grow.  Teeter up. Teeter down.

We want with every fiber of our being for our children to have everything they want.  We want them to feel no pain, to want nothing, to need nothing.  But in real life, this just shields them from the emotion needed to give thanks.  It's a teeter totter.  This raising kids junk.  I don't want Toby to go through pain and confusion - but in time- he will learn how lucky he is to be alive.  To have sight.  To have growth. To be "normal". Things I've learned in the past 2.5 years of being a mother.  Feelings bigger than the love of myself, growing my relationship with God, my husband, and my family. Because the thought of losing my children is so profoundly tragic, I don't think I can live with my life not being thankful and positive I have them. One day yours, mine and every other child going through their asshole phase will have a breakthrough moment that will change them for the good.  All of us observers will just have to patiently wait in our rockers, with open arms, for that moment to happen.  I pray I remain focused on seeing the positive when I want so hard to respond to the negative.  Thank you God for all the gifts you have given me. 

Thank you for listening,
Lindsey

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