Holy Moly

Luck

I've heard it more than once.  "You are SOOOO lucky he is so small, you get to stay in that baby phase so much longer.  They just get too big too fast, you're lucky he's not growing." While the gushy mommy in me whole-heartedly agrees, the intelligent side of me is saying, Everyday its so glaringly obvious that something is not right.   That I'm still waiting to get answers while the whole world grows around him. I've watched the adorable girl at the babysitter, 6 months his junior, start smaller and then surpass him.  Now, I'm watching my own daughter, 17 months his junior, catch right up.  They can share the same clothes now. 

My 6 month old daughter, who is 2 lbs and 2 inches smaller than Toby, 23 months

Lucky that my son stays uniquely adorable, yes, unlucky that along with it brings a shadow of doubt.  Doubt that he will forever be "abnormal".

Immunologists are like Vampires 

I feel like I may have given the healthcare providers we have worked with a bad rap.  I read back my prior blogs and get the sense that I am against them.  I'd like to clarify, I'm not.  I know that even the most educated, experienced, well versed clinician is human.  I acknowledge that there have been instances where I haven't left the room with warm fuzzies, but don't have unrealistic expectations about this whole process.  I know that in order to find 1 thing, they have to rule 10 things out.  I know that their guesses can be incorrect.  I don't hold them accountable for trying and being wrong.  I know they are on our team - and we have one of the BEST hospitals around.  Something we are beyond blessed to say.

You may also notice that I haven't said our clinicians names.  I do that to keep their identities private. I'm not sure they want me name dropping, good or bad, to the whole world. If I were them, I'd prefer it this way - and that's why I'm keeping them confidential. 

Our last appointment was with Hematology/Oncology.  I remember getting the pre appointment paperwork in the mail, trembling as I read through the documents I had to fill out.  Was Toby really sick enough to need to be seen in this clinic?  I knew, from our last chat with GI, that Toby's blood work had come back with different abnormalities this time, showing signs of a deficient immune system. This can be caused by a variety of reasons, stress and fatigue being one of them.  If you remember, Toby had a horrible scare that morning...To say that he was under stress and fatigued is an understatement.  I had hope that perhaps the abnormalities were just a product of the madness of that morning, and it turns out that our Immunologist agreed. 

Dr. B, our Immunologist, is a gentle man in his 50s with a calming tone and wise eyes.  When he first met Toby, he just sat there and looked at him, silently, for what felt like 5 minutes.  Toby, in my lap, just returned the stare, probably confused as heck as to what was going on.  So many doctors just come in, start talking, and start poking.  He didn't.  He just observed, and smiled.  It was as if he was trying to telepathize a message to him - I'm here for you buddy, I'm here to help. The whole process was calming for me as well.  I gather what he was really doing was checking out the physical characteristics of Toby's adorable body, seeing if anything looked peculiar.  As with most genetic conditions, many of them present with certain physical traits as well. We spent 2 hours talking.  About everything starting from Day 1 to present day. I'll do my best to summarize what our thoughts boiled down to. 

Ever since Toby's labs began with irregularities, its been assumed that he's had an auto immune disorder.  All signs have been pointing to one of the many diseases that make up this group of illnesses.  We are trying to figure out if Toby's diminished immune system is a primary factor in his health, causing other issues, OR if its a secondary response to something else going on.  At first glace, Dr B thinking it is secondary, perhaps to the malnutrition and stress he has undergone.  Because Toby hasn't had a huge string of infections in his life, just the every now and then ear infection, he felt that this issues we were seeing with the bloodwork stemmed from something recent and singular - not something that had been with him his whole life.  This is reassuring.  

We talked about the inflammation in this stomach and intestines, and the resulting effects it has on his diet and vomiting issues.  Toby probably doesn't eat a lot because it's painful for him to do so.  He probably vomits frequently because his stomach is upset due to this irritation. This all makes sense.  But WHY is he inflamed?  Dr. B thinks Toby could have genetic predisposition to diseases that cause irritation to the bowels. Because he is so little, he isn't exerting all of the symptoms yet, and those illnesses haven't fallen on the radar yet.  The way he sees it, there is definitely something systemically wrong with Toby, we just have to figure out if its auto immune or genetic, or both.  We talked about a feeding tube, something that has been brought up before.  He thought Toby would do well with one, and was suggesting we explore that avenue to see if Toby would start growing by bypassing mouth feeding and switching to a more manual process initiated by me filling Toby's stomach directly with a syringe.  While this is not off the table yet, it is waiting on results of bloodwork he ordered.  

Speaking of bloodwork... Let me start by showing you how the day progressed.....

Image 1 is us waiting for the Doctor to arrive, eating our cracker for lunch.  Imaging 2 is our break time after 45 minutes of unsuccessful blood draws.  Image 3 is our tired faces, after we were done and ready to head home. 

After Dr. B formulated a game plan he told us we needed to have more blood drawn, something that's all too familiar.  We were going to be doing extensive testing for allergies, immune and genetic disorders.  Trying to find anything that was abnormal, while in the process, ruling out conditions he felt were not very likely, but needing to be checked.  Ok I thought, nothing we haven't done before, right?  WRONG.  Because we were in hem/onc we had the luxury of the staff coming to us, instead of us going to the test referral center.  Luxury, if you can call it that.  We had already been put in an isolation room, as if that weren't foreboding enough, but now we had a special set of folks coming to collect our specimens.   I was getting worried when about 40 mins had passed and no one had come in yet.  Our case management nurse popped her head in, and gently informed us that the amount of blood needing to be drawn from Toby exceeded the amount they were allowed to take from his small frame.  *Gulp*

"They are trying to reorder the labs so that some of them can be shared for different tests, this way we can consolidate the amount of blood we have to draw". 

I faintly nodded my head, thinking about how difficult this next hour of my life would be.  Shortly after, 2 nurses came in with a tub of supplies, masked up, and started to lay out all of the materials necessary.   I was taking pictures and texting my husband, shock face emoticons streaming after every snapshot. 

15 tubes.  15 tubes of blood we had to draw.  15 tubes of blood drained from Toby's tiny little body...would there be any left in there??  I was assured that this was the max amount they could withdraw without Toby needing a blood transfusion.  That it was still safe for them to deplete his system of this much vital fluid.  I shuttered, remembering how Toby's veins blew after 2 tubes last Friday.  And how they had to stick him 3 times to get 4 tubes of blood.  15.  Ok, Here we go. 

We took our usual stance, Toby panicking again, Mom trying not to panic.  We were unsuccessful.  Again.  Twice, once in the arm, and once in the foot, both times hitting the vein, but not producing any blood.  In 45 minutes, we had 1/8th of 1 tube full.  The nurse asked if she should keep trying the IV she inserted, or if she wanted me to stick him again.  

He's going to be miserable either way, so whatever way is quicker, lets do it that way. 

Before he had to be stuck again, the other nurse suggested we call in reinforcements.  The Vascaular Access Team at children's, whose jobs are to place IV's and stick difficult children and babies.  YES.  Lets get them in here.  And while were at it, can one of them just follow us around everywhere we go???  

Waiting for reinforcements 

It took another 30 minutes for them to arrive.  This gave time for Toby's sweaty shirt, hair and neck to dry off.  Products of me restraining him with all of my might for the first two tries.  

The VAC nurses walked into the room. "HOLY MOLY", one of them shouted.  "That's a lot of blood for such a little baby."  Ok, good, so it wasn't just me!?!  And on that note, you do this for a living and your shocked by the amount being taken?!.  Oh brother. 

"Well, Immunologists are like Vampires" snickered the Hem/Onc nurse, trying to make light of the situation.  The three of us just looked at each other with wide eyes, trying to laugh along, but not being able to produce a sound. Toby, sitting on my lap, exhausted, terrified, and confused. This time he was retrained with a blanket, wrapped up like mummy, one of his miniature arms free. The lights were turned off, and a device was placed under his hand that glowed, showing the veins we were searching for.  In a few minutes, he was stuck, and slowly but surely, tube by tube was siphoned from his teeny wrist.  It took about 30 minutes.  Between each tube, stopping to let him rest, as each time she had to jiggle the needle slightly to get it to flow again, causing Toby to shoot off the table in pain. 

It was much harder with him laying down.  This way he could look me in the eyes.  Before I just knew what he was thinking, my face buried in his hair. Now I could see his face.  I had to look away.  It was too hard.  I thought that having my child put to sleep with a gas mask was terrifying, I'll take that any day over watching him get 15 tubes of blood sucked out, all the while I'm pinning him down, wrapped like a mummy, begging me with his eyes and screams to make them stop.  Any. Day. 

You did it, brave little boy

Home

Toby fell asleep, immediately snoring in his carseat.  I drove through the drivethough, as I hadn't had a bite to eat or anything to drink all day, and by now it was almost 4pm.  I drove home in silence, eating my fries and drinking my diet coke - Mentally exhausted from what we just experienced, and wondering how I am possibly going to wait 6 more weeks to get these results.  It takes a while for the genetic testing to come back, he said.  It will take him a long time to analyze everything and come to a conclusion.  So now, we just wait.  

Toby woke up when we pulled in the drive, and wanted to climb the stairs to our main floor (something he's just learned to do) in the worst way.  His little bandaged arms and foot, working mightly to get to the top.  He's so proud of himself when he gets there.  Its heavenly.  His Dad had a suprise for him when we got to the top, a Monsters stuffed animal, Mike, as big as he was, with wounds taped like his own.  

I set his things down, kissed my husband and went to our bedroom to lay down.  I couldn't stay awake.  I just needed to sleep.  I fell asleep immediately and was woken up a few hours later with little baby toes in my face.  What a precious gift God has given me.  I felt guilty that night. Guilty that I had to put my daughter down for bed and hadn't really seen her, or interacted with her all day.  She didn't care though.  She just smiled and laughed, stuck her slobbery hands in my mouth, pulled my hair.  I was still lovable in her eyes.  I pray it always stays that way. Please God, let her always see past my imperfections.  Please let her always know how much I love her, even when I don't have the time or energy to show it.  

Please let Toby always know how much I love him, even when he sees me do things that may confuse him.  Even when I'm letting him be manhandled, poked and prodded - please let him understand its because I couldn't bear to live in this world without him safe and healthy. 

Thank you for listening, 

Lindsey 

It's God Intent that men always do it wrong

When I was pregnant with Lyla, there was a night when I wanted ice cream (well, many nights but I'm referencing this specific one to be exact).  Not just any ice cream, Drumsticks to be exact. You know, the premade cones you find with chocolate and nuts on top, in the freezer section of the grocery store?  Well, my lovely wonderful man went out to get said ice cream, around 10 oclock at night.  In the two minute ride to the store, I texted him additional items he should grab while he's there:  apple pie, cherry pie, and brownies.  You know, the basics.  When he returned, he started to unload the items into the freezer, and low and behold - he couldn't fit them all in.  He took out the individual cones (He got a 12 pack mind you - the wrong size pack, I only needed a 4 pack - does he want me to get fat??) and started to randomly insert them into tiny open holes between bags of vegetables and whole apple and cherry pies.  You can image my dismay upon seeing this, as I yelled incessantly at him for not being able to fit everything in the freezer.  Why on earth would you mess up my freezer, how in the world am I supposed to get anything out now?!! I scream, chocolate and nuts falling from my cone onto the tile floor. 

8 months pregnant with Lyla

God wants men to always do it the wrong way for one simple reason, population control. If men were the exact same way as women, if they did everything right, and were never annoying, we would have a way too many babies. That's it, it's that simple. I'm pretty sure Parker does it wrong because it's Gods Will.  I generally don't prefer to make sweeping generalizations about a gender, or religion, or a political belief.  So instead I'll say, I'm only speaking about MY husband, and if it just so happens that you share these similarities, then so be it. 

I remember when Lyla and Toby began wearing the same size diapers. It was just a few months ago when they both fit properly in a size 3. (I always knew that day would come, I just didn't think it would come when my daughter was four months old.)  I sighed a refreshing sigh of relief...Now my sweet boy wouldn't be stuffed into his sisters diapers by my unobservant husband.  I'm sure Toby's feeling a little more comfortable now too :-). 

On any given day I probably tell Parker he's doing it wrong about five times. If you ask him, I'm sure he'll tell you 10 times. Now, we love each other very much.  I feel like we have a very solid relationship, but children and babies put a strain on even the most unshakable foundation. We are able to, at the end of each night, squash whatever arguments we've been in for the day, kiss each other good night, and go to bed. I only recall one or two times in our entire relationship, where we went to bed mad, and honestly right now I don't remember what we were mad about. When I say that it's God's intent for men to do things wrong, I don't quite mean it the way it sounds. I don't really think men do things wrong all the time, they just don't do it the way we want them to do it. Ok, Ok, I'll admit it - that doesn't necessarily make them wrong, it just makes them different.  In the big scheme of life, we should be celebrating these differences, Because without them the world would be overrun with little ones running around everywhere. Let me elaborate. 

Just imagine a world where my husband......

• Actually woke up every time one of the kids cries erupted on the monitor.  He wouldn't get the swift jab in the side signaling its his turn.  I wouldn't think - When I'm not here, does he actually wake up for the kids, or does he just snore right into lunch time, keeping them stuck in their cribs, legs dangling out the side?
• Knew how to dress my daughter.  When I ask him to get her dressed, he doesn't appear in the doorway with my darling child in red Adidas pants, a light pink t-shirt with hot pink flowers, and purple socks.  I wouldn't think - What are you doing to our little girl?  In what world is this outfit Ok?  He wouldn't respond with the usual - well we aren't going anywhere and this is all clean......
  
• Closed the cabinet doors behind himself after making the kids meals.  I wouldn't sigh heavily, turning the corner into the kitchen, seeing every baby item we own displayed proudly on the shelves. 

• Used only 3 wipes to clean a dirty baby butt.  Instead of his usual 25, what would I do if he only used 3, like me? And on that note...what if he knew not to change a poopy diaper on my white bedroom quilt, or to make sure he has a clean diaper ready to squish under a naked bottom BEFORE he removes the dirty one.  What would the world be like if my kids couldn't pee on everything when he changes them?

• Gave the kids a bath.  Instead of me for once, what if my husband actually enjoyed bathing our kids and helped.  What if he didn't say he couldn't bath our daughter because he wasn't really sure how to clean those parts, or some other excuse for the night. 

• Wanted to go out to dinner with our family of 4.  What if I didn't have to cook for the night and he suggested we all go out to dinner. What if the simple thought of a family meal out didn't make his hair stand on end, cringing at the very thought of managing our children at a public table for an hour and a half. 

• Thanked me for keeping our children's wardrobe plentiful and trendy.  Instead of giving me a look of judgment seeing a new shopping bag, what if he asked what was inside, and complimented me on my great fashion sense.  What if he didn't roll his eyes every time Lyla appeared with a new flower headband?

• Screwed the top of the baby bottle on tight enough to not let it leak, but loose enough so even I can unscrew it.  What if I didn't have to chuck the empty carafe in his direction, signaling I cant get the top off to clean it? 

• Knew how to correctly pack the diaper bag.  What if I never had to redo everything he just threw in there with no rhyme or reason, feeling it acceptable because he fit it all in. 

• Wouldn't allow our 6 month old to be dropped off at the baby sitter with missing socks, two days in a row.  How does he not see she's missing a sock! These thoughts not crossing my mind.

• Turned the baby swing off after getting Lyla out.  What if I didn't have to walk into the room and see a completely empty swing on full blast, lights and music blaring with no child in site.  Every. Time. 

• Made a child friendly playlist on the IPOD, and no more Ganstar rap blasted while it's on shuffle in the car, my fingers scrambling to hit next.  What if I knew my kids weren't going to repeat the words they hear from Tupac at daycare. 

Here's what I can tell you for sure, Parker is always wrong because he's supposed to be wrong. Because its his job to be cool, harmonious and low key, when I'm strung out trying to find a perfect outfit, destroying the babies room while I'm at it.  Its his position in this family to make me feel like the best mom in the world - and he does it, every day.  If we were always in agreement about how, why and when to parent, we would want more children.  A bus load of them!  Because we would agree when one watches the kids and one showers, and both of us wouldn't go days without cleaning ourselves because we've just plain forgotten.  I would have have time to read and sew, and do my nails, and brush my hair.  I would be well rested, because I wouldn't have to wake up every night, and I wouldn't wear my pajamas all day long and brush my teeth for the first time at 12 pm (or 5pm) because my mind isn't quite there yet. He makes our world balanced.  He makes our relationship interesting.  He reminds me that at the end of the day, it shouldn't really matter when he doesn't do it the way I would do it, because I'm a freak.  And I get it. I don't always acknowledge it, But I get it. 

I know there are times when he wants to walk straight out the door. Stop and get an energy drink, and make his way to the poker table at the casino for 10 straight hours of child/wife free time.  But he never leaves.  He's always there with me.  Always putting up with me, and our tiny toddler wanting to be tossed about in his mighty arms.  Always changing the TV to Bubble Guppies, or Toy Story, or Peppa Pig, when he just wants to sit in his chair and watch Fox News and MSNBC simultaneously, grunting to himself about how absurd the world is.  He is my handsome rock.  The one who massages my shoulders when I'm sitting in the doctors office, head down waiting AGAIN.  He's our children's Knight in shining Armour - never doing anything wrong - the strongest man in the world, throwing them about high in the air and catching them, every time! He's the only man that can make my daughter smile a huge gummy grin with just one look, and I hope it stays that way forever. (Well, I hope its not always just gums, but you get the point).  

He is perfectly imperfect.  Just the way a man my husband should be. 

Thank you for listening, 
Lindsey 

Will I ever feel like I'm doing it right?

Right now I am stretched out in bed, at 3pm on Sunday, while both of my children nap.  The sun is shining bright through my window, my husband is sitting in "his" chair in the family room watching basketball, full on frozen pizza.  I'm already in my jammies, and watching Hocus Pocus, which I DVR'd around Halloween time, and am just now finding time to watch.  If you are a 30 something female, you know all too well how comforting this set up is.  

Annnnnnd just like that, this guy wakes up, and now I'm swatting him off the computer keys while he's watching Cars in bed with me. At least I got the first 10 minutes of my movie in. 

Last night, we went out for one of my husband's friends birthdays.  These kinds of nights always seem to present themselves just when you need them.  When you get all too consumed by life with kids, and just need some time to yourselves to be adults again.  I got caught up with a few ladies who I hadn't seen in a bit, and they were quick to divulge they had read my blog, and wanted to share how it touched them.  Some laughed and some cried, but each of them told me to keep writing.  I'm thankful and humbled by these words of encouragement.

 It is difficult to remember it's OK to occasionally remove myself from whats going on with Toby's health and just have fun. After all, he LOVES sleepovers at the grandparent's house, and who are we to squash all that fun. I slept till 9!!  It's amazing what a long, peaceful sleep will do for the mind - without suctioning out the snotty 6 month old and getting interrupted for babas by the 2 year old .  I set off to pick up the kids, and was thrilled to see their smiling faces, Toby running around crazy, in a pile of toys on the floor.  His big, blue, innocent eyes confused - because he wasn't sure if he was happy to see me or if he was sad he was going to have to leave.  We packed up our things, and I hauled Toby out to the car to get him set in his carseat. There on the floor, I spotted something I hadn't seen before. It was a neon green bandaid with bloody gauze - an awful reminder, slapping me back into worrytown for no good reason.  I remember watching Toby from the front seat rip it off in victory after our blood draw on Friday.   I freeze for a moment at the door, recalling the 10 minutes I had to squeeze him tightly on my lap, pin one arm down with one hand, and turn his head while hiding his eyes with my other hand.  I bury my face in his hair and try to remember to tell him everything is going to be fine.  Its a struggle, because he's screaming out crying, big wet tears falling down his face.  While he's squirming, I'm doing EVERYTHING I can to prevent myself from crying.  I have to take my thoughts elsewhere, and I feel guilty for doing so.  I should be talking with him, interacting, but if I bring them back to present moment, I know the waterworks will start.  So I'm usually silent, motivating myself quietly to be patient and steady.  Toby doesn't have good veins, he gets them from me.  They usually have to stick him more than one time, and this time was just like the rest.  Only this time, something broke my heart even more.  As the plebotomist let the teal blue tourniquet loose on his arm, after unsuccessfully finding a good spot, Toby squeaked aloud - "Aw Done?".  I paused and looked up at the lady in pink scrubs, whose wide eyes looked back while she responded, "Did he just say All Done?", a glimmer of empathy in her voice...  

"Yes... He did"

He's had this done so much that he knows when they release the tourniquet they are almost done.  My heart aches that he is so observant.  Back to reality - at least I had had the last 12 hours without worrying.  I'll take these little moments when I can. 

All Done Dad?

Whats Next 

Our Friday meeting was with our GI doctor.  We were greeted like always and escorted back to an exam room.  This time though, we didn't go to a usual exam room.  This time, we were taken to a different kind of room, one with 2 chairs, a coffee table and a couch.  A desktop computer hitched up in the corner, and on the coffee table, a box of tissues.  

I'll walk on my own, thank you very much....

Of coarse, this change in scenery had me sweating.  Why were we in this room? Are they about to give us some awful news?  Oh dear Lord, let this not be happening right now.  Toby on the other hand enjoyed the extra space - more surfaces to maneuver around his hot wheels. 

Thankfully, this meeting did not perpetuate bad news.... His GI doctor just wanted to chat with us in person, to give us a recap of whats going to happen over the next month.  I'll do my best to describe his next steps, as they were described to us. 

This past week, Toby's pathology results had been taken to a panel of doctors who meet every other week at Children's (where he is being followed) to discuss cases that are not straightforward.  Ones that would do best with a group of experts putting their heads together, trying to solve the mystery.   This panel was all in agreement with his doctor, that the first perpetrator we should be investigating is Celiac Disease.  Toby has already been tested twice for this, and both times the results were negative.  I am told there is a more aggressive panel of tests that can check for this disease, and our blood draw on Friday was going to start the process for that.   For those not aware of what Celiac Disease, it's essentially an allergy to gluten, treated mainly by leading a gluten free diet.  This is wheat, barley, grains..etc.  While all of his symptoms are in line with Celiac Disease, there are some oddities about Toby that aren't quite in line.  For instance, Toby isn't growing taller either.  One would think a child who has trouble absorbing nutrients would be underweight, sure, but it wouldn't necessarily effect their height.  He could be of normal height, just skin and bones.  Secondly, he has some other characteristics that are common in genetic disorders - like a sharp curvature of his little finger, small narrow feet, a more normal size head for his age despite the smaller body, and a high pitched voice to name a few. These are all things I have learned from doing research, and info I have received from other parents who have children just like Toby. 

GI is conducting a few more tests outside of Celiac Disease, in preparation for our meeting with Hematology/Oncology next week.  At this meeting, we will be talking with one of the best immunologists around, who will help get to the bottom of Toby's abnormal CD levels in his blood (the blood cells that comprise the immune system).  He will review the results from our labs that were drawn on Friday and order more blood work based on that information.  The week after we meet with Hem/Onc, we have to meet with Genetics.  This group of doctors will run more blood work on Toby to look for genetic conditions that are in line with his symptoms. Like I've said many times, there are so many different diseases that have the same characteristics as what Toby presents, so we are slowly but surely narrowing down the culprits.  After these two specialists, its trips back to GI and his pediatrician.  

Questions and Guilt

We have a lot on our plate over the next 4 weeks, not to mention a BIG birthday for mister T. On April 10th, Toby turns 2.  What a wonderful gift God has given us.  With all of this going on, more guilty thoughts swirl in my mind.  What about my daughter?  I know what your thinking, she's only 6 months old and has no idea what a blog is, or even that Toby is sick. I still feel remorse.  Am I not paying enough attention to her?  Can she tell already my mind is consumed most of the time by her big brother?  Should I start a blog about her - call it something like Sweet Little Chubbs - and post pictures of her chunky, happy smile everyday?  

This is Lyla when she's sick.... Heartbreaking i Know

While I would love to look at a blog like that all the time, in the online world, I'd gather she'd be pretty boring.  All that said, I don't want her to look back at all this in sixteen years and say, where was I? 

How do I balance my time and attention when one child requires so much more of my energy? When his little face fills the gaps in my thoughts with fear, while my sweet, smiling cherub of a daughter sits in the corner, eating her fingers, and drooling on her blanky.  Does this feeling of guilt ever go away?   Will I ever feel like I'm doing it right?  These are open questions to my readers - if you have experience with this, please share with me your thoughts.  Tell me how you do it. 

I've gotten us up to speed - from the last two years to present day.  Now, you'll have to wait with me, as we uncover new discoveries together.  

Until then, I'll just have to keep writing.  

Thank you for Listening, 
Lindsey  

Rollercoasters

I am grateful and shocked by the amount of folks reading this.  I have already been contacted by complete strangers, going through the same things with their children.  They have shared with me their diagnoses, in hopes it might help lead us to some answers for Toby.  One person's suggestion was so similar to what Toby's symptoms are, that I called his doctor and asked to consult with a geneticist.  Ask and you shall receive?  It is possible for this to turn into a literal translation too?  Just 4 days after posting my first blog, could a complete stranger lead us to the resolution we have been awaiting?  What a wonderful gift God has given us.  I'm certainly not getting my hopes up, but its reassuring knowing there are other parents in the world that struggle in the same way my family does.  That they go on, and their children are much older than Toby, and happy.  Additionally, I have received notes, texts, emails.  Although this outreach may seem to be small gestures by you, they are very powerful and restorative to me.  Even if my experiences don't match yours completely, to validate that every parent feels, senses, cares the same way we do; It feels amazing.  So, we thank you, from the bottom of our hearts.  

5 months old - 12 lbs - Newborn Clothes

Toby LOVES his Daddy

17 months - 6 month onsie

While Toby was undergoing his procedure the other week, a good friend that I used to work with at Cincinnati Children's came to sit with Parker and I to keep our thoughts distracted from the negative places they wanted to veer to. We got caught up, as it had been all to long since we had seen each other, and he relayed to me stories about his children, and a surgery that his son had had.  It was just a routine tonsil removal, but in the weeks and days before the day it was supposed to take place, more than one person had shared with him stories about a child they had known of dying while undergoing a routine procedure.  Specifically, the same one his was about to have.  We both were in agreement - Why on Earth would someone mention a story like that to a parent when their child is about to go through a routine surgery?  What good could possibly come from sharing such information?  Do these people have a screw loose somewhere?  

Are they not thinking before the words come out of their mouths? 

I don't want you to be worried but...... These were the words that began the conversation started by Dr. Excellent's scheduler.  She phoned me the day after our GI nurse explained that Toby's blood work showed abnormal, decreased CD levels.  This type of blood cell, its expressed, is part of your immune system.  When you have a diminished immune system, your body isn't able to fight normal illnesses in the way a healthy person's would.  There could be a vast number of explanations for this to be.  Since the start of Toby's abnormalities appeared, all signs have been pointing to an issue with his immune system.  There are over 80 different auto immune disorders, many of them sharing the same signs and symptoms - making a diagnosis even more strenuous.  It had also been expressed to me when the immune system gets confused, the intestines are one of the first places it decides to attack - making the inflammation found there thought-provoking. 

"Toby's Dr has asked for Dr. Excellent's first available appointment"
First cause of Dismay

"I don't want you to be worried, but your appointment is scheduled in the Cancer and Blood Disease Institute"
Second cause of Dismay

I must have not said anything.  I don't recall.  Because she spoke up again, as if she were trying to fill the awkward silence with any words to make it alright.  

"Sometimes people don't know that their appointment is in this clinic when they schedule over the phone; I just wanted you to know so you wouldn't be scared when you got here."

While I truly appreciate her general concern, she must not have children, I immediately thought.  How in the world would she be able to say these two sentences back to back..... I don't want you to worry AND you have an appointment in the Cancer and Blood Disease Institute.  A first available appointment, by request, for a renown doctor.  Surely she wasn't thinking about the words that were coming out of her mouth.  I paused my viscous thoughts to get a grip.  Calm it down, I said to myself, this woman is here to help you. She is on your team.  Your worries are between you and God, not this sweet girl on the phone, doing the best she knows how to prepare you for whats about to come.  She went on to inform me I was being assigned a case manager, to help us with Toby's "issues".  This person, whom we would meet at our appointment, would be our liaison now for our health care related concerns with Toby.  This person will be our go-to resource for questions.  They will help us along this journey.  I hung up the phone, texted my husband to call me, and sobbed.  

Toby 15 months - 3 month swimwear -  I'm 7 months pregnant with Lyla

Why am I getting the sense that something terrible is about to happen?  I feel like I'm going up the first steep hill in a roller coaster.  You know the one.  The biggest one there is.  Your zooming about, enjoying the ride, then you come to a screeching halt and slowly a crank jerks you up, gradually pulling you up to tippy top, yanking you along the way.  I feel like when this visit happens, I'm going to plummet.  I feel that same hollowness in my stomach, the one that presents itself immediately as you topple over the edge.  I feel that all the time.  It doesn't really go away.  Please God, don't let this diagnosis be one that shortens his life.  Please God, keep my son wrapped in your arms.  I beg of you, let this affliction be one that can be treated.  If Toby doesn't grow anymore, for the rest of his life, please let this be OK as long as he gets the chance to live.  

I've asked numerous times, to his pediatrician and to his specialists, is there anything life threatening Toby can be diagnosed with that I should be preparing myself for.  Each time they explain that they feel the answer they are searching for would be treatable.  But each time, there is a pause.  A pause to think.  It is this silence that I think about - even more than the No that they respond with.  Could there be a sliver of doubt?  How would it be possible for me to go on? 

A friend of mine called to share with me how wonderful she thought my story was, how strong she thought I was to be sharing it with the public.  I had updated her with this latest news, and all of the worried thoughts that trailed behind.  In the anxious tone I was conveying, she told me that she herself, and her children had a blood disease that had been passed down in her family.  It was something manageable and not life threatening, but both herself and her children had to be seen in the same type of setting as Toby's appointment was scheduled.  During these visits, she found more strength in God - because as she saw it, she was surrounded by so many people much sicker than herself.  Instead of worrying, she was thankful.  Thankful to God for the people she had been surrounded with, and the enlightenment that she had so much good to focus on.  I find comfort in these words.  

I like to let Toby walk out of our appointments after we're seen. It validates that things are done. He puffs his chest up, and shuffles his tiny feet quickly and deliberately - all too happy to get the hell out of there.  As we passed the front desk, the clerk hangs over the top, and gushes over how cute he is.  She mentions what a good walker he is and asks how old he is.  

"He's almost two", I say
"Wow!  He's SO TINY!"

Yes, yes he is. 

Thank you for Listening, 
Lindsey 

I felt like they weren't listening

Hey Toby, I love you

"Hey Toby, I love you", I say from the front seat as were driving. It's met with a sloppy Raspberry from the back. I wonder if he knows how much I love him. How much he consumes my thoughts every day. Or I wonder if he's just blissfully unaware, lost in innocent playful thoughts. Toby can say just about everything now. If he asks you what something is, and you tell him, you bet the next day, the next week, the next month -  he'll still remember what that word is.  He knows his numbers, his colors and most of his letters. What he can't say yet is I love you. (Maybe, Just Maybe, a Raspberry is his way of saying it!?) I'm waiting anxious to hear those words. I think back to the early days with him, when I thought he hated me. When I thought I was making him miserable. I remember vividly one of his first doctors appointments where he received vaccinations. The weirdest thing happened. As he got stuck and screamed out in pain, I rushed to pick him up and I actually soothed his crying. For one of the first times, I did it.  It's one of the first memories I have where I felt loved by him, where I truly felt like I was doing something that I was meant to be doing. I don't think too many moms out there recall vaccinations as rewarding, but for me, it's one of my best memories. Now that I've had these years with him and know for a fact he loves me and needs me, those trips to the doctor's office no longer have any glimmer of something rewarding.  Especially now.

If he's hungry enough he'll eat...And other falsities 

About six weeks ago, one of Toby's routine blood checks came back with signs of abnormalities.  I received the call from his GI physician, and was asked to schedule an appointment with them as soon as possible.  I remember this was at the end of January, as it was dead smack in the middle of a torrential vomit fest - his worst one yet.  After taking him to the pediatrician AND the urgent care to make sure he wasn't getting dehydrated, I was anxious to get to GI to see if they could provide some help.  Offer some advice. There, his doctor described to me that labs had indicated there was inflammation in his intestines.  He asked if there was any family history of inflammatory diseases, or if Toby had recent bouts of diarrhea - neither of which were true.  His labs, while abnormal, weren't high enough to be considered critical, but were high enough to cause concern.  It had been decided that another endoscopy, this time with a colonoscopy, was in order - to both validate the labs and check out whats going on in there.  A colonoscopy, It's explained to me, is not recommended for a bugger his size - There is not a lot of room to work with, which causes more room for perforation and other awful things.  All this said, the doctor thought it was necessary, and so we again obliged - knowing we would have to carry him down that long, bright hall, and watch him be put to sleep in a room full of strangers. I don't care if your child is being put to sleep for 10 minute ear tubes, or a procedure that lasts hours - ANYTIME you let them leave the safety of your arms into the chilly, crowded operating room - with all of its flashing lights and beeps, you are terrified.  

As for the vomit fest - GI thought perhaps he just had a bug and it would pass.  While I disagreed and though whole heartedly it was part of this madness that had consumed his body, there wasn't really much we could do to prevent it.  Anti-Nausea medicine doesn't work well on children his size, I'm told.  He wasn't dehydrated and he wasn't really in a bad mood, so....We just dealt with it.  The nurse came in and had us sign the surgery wavers, then moved into describing the prep that would be required for his procedures.  We were to cleanse his system 3 days prior to the surgery.  (This involves an absurd amount of Miralax and and equally absurd amount of diapers.)  Second, Toby was not allowed to have anything but clear liquids the day before.  Red Flag alert now.  

Can we at least have the first available morning appointment so that he can be out of his misery quicker? 

"The doctor only does afternoon surgeries, but I'll see what I can do".

How am I supposed to explain to a 22 month old who lives off of a baba that he can't have one for 24 hours?

"Well, he can have chicken broth, Jello, Popsicles, clear liquids - this should keep him full"

My child wont eat any of that stuff.

"If he's hungry enough, he'll eat it". 

Now, I know reading this it sounds cold, but there in person, I didn't feel a chilly tone from them. They really were just speaking from experience.  I'm not trying to defend their responses, I'm merely trying to make it known that I don't feel they were being rude. I feel like they weren't listening.   As it would turn out, they were wrong. 

When God takes things Literally 

When God takes things literally, it throws you off guard. Even the most obedient servant (which I will admit I am not) doesn't expect to get a literal response.  This is what Faith is - belief that is not based on proof.  Well, chalk it up to the Jonses to get a response - at an all too "convenient" time. 

It was the Saturday we were to start Toby's cleanse.  I had been dreading this weekend for 4 weeks now, and was wishing it would go by as quick as possible.  In my quiet thoughts, I would ask God, no, beg him - "Please, Please let my boy feel no pain.  Whatever pain is meant for him, please give it to me times ten.  I can take it, but he is so tiny, and helpless.  What good can come from such a pure, small soul in agony? "   About 10 hours later, God answered.  He gave me what I was petitioning so hard for.  I will spare you most of the gory details, but it involved me emptying my body from all orifices, in agonizing distress, laying on my bathroom floor.   In the heat of the moment, the LAST thing I was thinking about was God.  I thought my insides were exploding.  I considered whether or not I should go to the emergency room - by now it was 3 am, and the very last thing I was going to do was pack my sleeping angels up and cart them to a hospital.  I of coarse couldn't drive myself, I think they frown upon driving while dry heaving. My husband couldn't drive me because he needed to stay home with the kids.  So what does a girl do?  Call her Daddy.  Wake him up at 3 in the morning.  All she has to do is say 10 words - "I'm sick, I need to go to the emergency room", and he throws on some clothes and bolts out the door.  That's my dad, that's how he's been my whole life, and that's one of the many reasons I love him so.  

Toby with my Dad - 7.5 months old - 0-3 month clothes

I was admitted to the hospital and my symptoms got worse before they got better.  I was there for 3 days.  The WHOLE time I should have been tending to my son, I was stuck in a hospital bed for GOD KNOWS WHY.  Wait....maybe God does know why, I asked myself in my desolate hospital room.  That's when the next doctor came into the room.  On the very same day that Toby was scheduled to have his endoscopy and colonoscopy - I was told I was going to have one.  The same exact procedure.  At the same exact time.  (I had already cancelled Toby's surgery.  There's no way my baby is undergoing this without me.  If something were to happen and I wasn't there?  I would NEVER forgive myself.)  I laughed out loud, a response a doctor who routinely tells people they need colonoscopies rarely hears.  I explained to an emotionless face my story, with no response.  Oh well, at least my family and friends will understand the "coincidence". 

The procedure's results were uneventful and didn't provide much of any answers.  But they provided so much more for me emotionally.  Why?  Because I felt no pain.  For over 4 weeks I agonized, wondering if my son would be in pain after this surgery.  Hoping and praying he would wake up happy and smiling.  And now, I knew, from first hand experience - This isn't painful.  In fact - I didn't feel a damn thing!  In fact - I got a great sleep!  In fact - I wouldn't have known I had one unless you showed me the pictures.  What a precious gift God has given me. Peace of mind - something that is rare to come by for me these days.  God has shown me in the only way he could, my son would feel no pain from this procedure.  What a crazy guy he is. And for a second, I thought I was really sick.  Pffffft. 

Only you know your child best....

I had postponed Toby's surgery for 7 days after his original one was scheduled.  With my new found enlightenment about what an actual endoscopy and colonoscopy entailed, I was less nervous than the week prior.   We started Toby's cleanse the Saturday before his Tuesday scheduled surgery.  The cleansing part went better than expected.  He seemed more annoyed than bothered by my frequent interruptions to change his diaper.  On Monday, I woke him up in the middle of the night to sneak him a last chance bottle before he was to be cut off.  It worked, making the first hours of that day not too unbearable.  We decided to keep him as busy as possible, scheduling a trip to meet Grandma at the mall, to run around the play-yard and ride on all of the quarter machines.  There, we tried in vain to get him to eat Slushies.  We were unsuccessful.  

The day, as expected, got progressively worse. I tried the Jello.  He was entertained by the blue gelatinous goo for about 3 seconds before chucking it against the wall.  "You want me to put this in my mouth?", his stare revealed.  We tried ginger ale - with a straw even!  Nada.  I tried to trick him into drinking chicken broth from a Pediasure bottle.  I don't recommend you trying that.  Ever.  

He stomped and marched, rolled and banged on the kitchen cabinets.  The refrigerator had streak marks from his tiny little fingers grasping to get to ANYTHING inside.  My heart was breaking little by little every time I told him I couldn't give him a bite of something, or a drink of his bottle.  I'm so sorry sweet boy.  We gave him water, and more water.  Juice has never been his thing - and it wasn't this day either.  Despite what the doctors said, my child WOULD NOT eat - even if he was hungry. Before bed, we were successful with 4 mini Popsicles.  Finally, he ingested something for the day.  It wasn't much at all, but at least it kept his sticky fingers entertained for 30 minutes.  Bed time came early, surprisingly, and he slept all night long without waking up.  Something he usually doesn't do. 

In the morning, Toby was up asking for a bottle right from the get go.  I thought, power through this, you only have 3 hours until you have to be at the hospital (11am) and 5 hours until his procedure (1pm).  As I told him no, for what felt like the millionth time - he didn't fight me.  He laid his head down on my shoulder, and slept.  I hugged him tight while my husband got himself and Lyla ready to go, then we switched this comfort position with him so I could get ready.  I knew he wasn't acting normal, but I thought it was just because he hadn't had any calories.  I got him dressed and his arms went limp as they fell through the sleeve.  My heart broke even more when he didn't fight it - I had just taken it all out of him.  There's NOTHING worse than knowing your child feels like you have given up on them.  Its the most excruciating pain.   

We packed them up in the car, Toby still sleeping, and dropped Lyla off at our babysitter.  We were at the hospital checking in 15 minutes earlier than we were told.  Thank God for no traffic. Thank God for not needing Gas.  Thank God for valet.  In the same day surgery room, Toby's pale skin looked see through in the bright light.  The nurse explained that she was going to take his vitals and asked if I thought Toby was acting normal.  NO.  He wasn't.  Normal would be him crying, kicking and screaming as we walked through the hospital doors.  This was not Toby.  My son doesn't sleep in my arms while people in scrubs fuss over him.  As she talked, I could see his eyes rolling into the back of his head.  Something was definitely not right.  I gave my husband a worried look, and the nurse ran off to find a kit to check his blood sugar.  By this time, the nurse anesthesiologist had come in and was also clicking away at the computer, asking questions.  As Nurse A stuck his finger - not a peep was uttered from him.  Not even a movement.  A lump formed in my throat.  Something is very wrong.  

"Seventeen" she said aloud to nurse B, who looked up and asked her to repeat herself.  Like she had heard wrong.  "SEVENTEEN" - she said again, enunciating each syllable to make sure she heard correctly.  Thank GOD I didn't know what it should have been, because I would have gone into panic mode.  I was told, very promptly, to get Toby on the bed and get him undressed.  Scared and shaking, I did as I was told, as my husband looked on from the corner of the room.  4, 5, 6, 7....I stopped counting as scrubs and white coats flooded into our room. Toby, was not there.  His eyes were rolled into the back of his head.  He was breathing but he was not conscious.  Two different nurses, and 1 doctor each took the limbs that were left looking for a vein to start an IV.  I was squeezing his hand with all of my might, rubbing his head, and whispering in his ear that everything was going to be fine.  I kept glancing back at Parker, who had the same cold look as I did.  What was going on.  Why was this happening.  I remember asking the nurse what his blood sugar should be, and she didn't answer me.  The feeling of dread grew even more.  I looked up to the doorway and there was nurse c, holding what appeared to be a "crash kit".  She whispered quietly so I wouldn't hear...but I did..."Was his sugar really 17?", and the stone cold wide eyes from nurse D confirmed it.  

As Toby's tiny foot was stuck and an IV inserted, he didn't flinch.  He made no movement.  No squeal of pain.  That frightened stare he usually gave me before getting our routine blood draws...what I wouldn't give to see that right now.  To see some sign that he was there.  The doctor pushed in a syringe full of Glucose, and very slowly, I saw him again in his eyes.  The blue shown a little brighter, and I could tell he was looking back at me.  He still wasn't crying, or saying anything, but he was there. Back again.  I looked over again to my husband with a look that said, things are getting better, and for a brief moment the hopes that he was going to OK overshadowed the terror that had just ensued. They rechecked his blood sugar - 136.  Much Much Better.  

Over the next 2 hours, Toby slept on my chest.  Curled in a tiny ball, covered in a hospital sheet. I may have caused marks on him by how hard I was squeezing him.  An IV line hung from his limp foot, and every now and again, nurse a would check it and program something else in.  We were visited by the GI staff who told me as long as Toby remained stable, we would still go ahead with the procedure.  As it was explained to me by the many nurses - They see this all too often, with little ones who have to fast.  Little ones who are too young to bribe.  Little ones with feeding difficulties like our son.   In the future, if we have to do this again, Toby should be admitted the night before to be monitored.  Ummm, I'm pretty sure whether you agree or not, If he has to do this again, I'm camping out in the hospital lobby. 

In the darkness of the room, nurse a conversated with me and explained to me that she had heard my questions, but chose not to answer me.  She was too busy focusing on my son, and she didn't want me to know the answer.  I appreciate that more than she knows. 80 is a low sugar level.  At 60 they begin to worry.  At 40, immediate intervention is required.  17 is unheard of.  17 is very critical.  Thank God I didn't know this before.  In fact, our nurse in our recovery area said that in the 19 years she had been a nurse, she had NEVER seen a blood sugar that low.  

"Only you know your child best", nurse A continued.  "I'm so glad you said something wasn't right."  I rethink this statement and shutter. 

I may know my child best, yes, but I have no clue what I'M doing!!  What if I just thought he was sleeping normally and didn't say anything.  What could have happened??? He had been like this since the wee hours of the morning and I didn't think anything was wrong.  What would I have done If something terrible happened on the way to the babysitter. I wouldn't have known!  It would have been all my fault!!  I completely understand that saying, and I've heard it from numerous providers, but that puts a lot of pressure on us parents to be alert and on top of things.  Why can't our children have a little sensor on them, like my car when backing up, that beeps when they get too close to running into a theoretical wall?  Wouldn't life be so much easier? 

A few hours passed, Toby's blood sugar, which was being checked every 30 mins, had stabilized.  I told them this would be hard.  I told them he wouldn't eat the things they told me to give him.  I knew this would be nearly impossible.  I felt like they weren't listening.  

Because he already had an IV, the transition to the operating room table was a little easier this time.  Still asleep, I laid him down with his blanky, and he rolled onto his side like he does every night.  How peaceful this angel was. My husband and I were escorted out and we waited for 2 hours until the doctor was finished and met us back in the discussion room. 

Toby's results had shown the inflammation indicated with the labs.  We had a long conversation about his hypoglycemic episode that morning.  We wont let that ever happen again.  Now we know.  Because of all the madness, extra labs were drawn.  My son was stuck in every wrist, hand, ankle, foot, arm.  I stopped counting the bruises, and started taking pictures.  I was told to monitor them to make sure they didn't get worse, or hard.  This was critical and he needed to be rushed to the emergency room if that happened.  He slept in between us that night - something we never allow in our house. And that was alright with me.   

Four days later, I received a call from his GI nurse.  We needed to get the first available appointment with one of the the best Immunologists around.  Our GI doctor had already talked to him personally.  Toby's blood results showed more abnormalities this time.  This doctor was excellent, she said.  He explains things very well, and is very good with the patients.  After all of this hype, I was surprised when I couldn't find him in Immunology's directory on the Children's website - something I've grown accustomed to looking up for each new specialty we see.  

It all made sense when his scheduler called to book our appointment.  I was not at all prepared to hear where Dr. Excellent worked.  Not prepared in the least bit. 

Thank you for listening, 
Lindsey