Thursday, July 3, 2014

Weekend Wrap-Up

Last weekend was about 60% lovely and 40% awful (wrote about that part yesterday...). But the good parts really were great, so I can't complain.

Friday evening we took the dude to the circus for the first time. I gotta tell ya, I was really hesitant on this one. I always swore I would never take my kids to the circus, even if they really wanted to go. "Let somebody else do that," I would say. Why, you ask? ::Confession time:: I'm afraid of clowns. Nightmares about clowns. When I hear "circus," I think this:
Oh. My. God. Do not ever, for any reason, Google "scary clown." This was the tamest, I assure you.

Add to that a little anxiety, which is usually triggered by loud noises and large crowds, among other things, and you have a recipe for disaster. Not sure what came over me, but it was my idea to take Jack to the circus, and I bought the tickets.
I waited until just a few hours before to even tell the dude. As any toddler mom will tell you, put off the toddler's questions for a long as possible. Anyway, I was super excited to tell him by this time, thinking he was going to be ecstatic. Can you guess how it went??
Me: Guess where we're going tonight!!
Jack: Um...I don't know. (looking kind of excited)
Jack: (looking 0.00% excited) oh. Can we just go to the store instead?
Me: But there will be elephants at the circus...
Jack: Oh ok then. Is it kind of like a store? (He likes to shop...)

"Are you excited about the circus?"

"Can you please smile like you're excited so I can take your picture?"
Once we got inside, he was a little overwhelmed but starting to get excited. He even got a pair of official circus binoclars to watch the show (or the people in the smoking section, whatever)!

Note to self(ie): Excited, antsy toddlers make for blurry selfies

So the dude was excited once we got there. He's always been a people-watcher, so that was fun enough for him. Just as the announcement was being made to quickly take your seats before the show starts, the wonderful child for whom I was attempting to face my clown-fears turned  to me and said, "Mom? Let's go home now."
A short moment later, the whole place went dark as the ring master took his place. "Mom?!? Who turned out the lights??" Not sure what the ring master was talking about...I had the giggles. Then the show started and just as we'd hoped, this happened:
The wonderment that can only be seen on the face of a child.

I've got to give props to those circus performers. They managed to hold the attention of my busy 2 year old for the better part of 2 hours! We were hardly even out of the parking lot before he asked to go back to the circus. Made my heart glad!

P.S.-The clowns weren't even scary!! To be honest, they really didn't look like clowns, aside from very minimal make-up. I'm still afraid of clowns, though, and will probably have nightmares for a week after looking up pictures of clowns for this post...

Wednesday, July 2, 2014

Angry Zebra

Yesterday started out great. Then it all went to shit. Here's how...I'll start from the beginning, which was almost week ago.

As I've written about here, the dude began infusion therapy for his immune deficiency this month. All was going well for the first two weeks, except for some hyperactivity. No big deal; I got this. Then came dose #3. After his infusion  last Monday, Jack was a little drowsy, took a nice long nap, and woke up...high. He was yelling like a crazy person and running in circles laughing. It was kind of funny, but definitely worse than the week before. He seemed to be back to normal by the next morning. Thursday morning, he intentionally broke 3 toys within less than two hours. My child has purposefully broken a toy maybe once (?) in his entire life. Things just got worse from there--he wasn't just hyper, he was aggressive. He yelled at me and the hubs, he frequently swung at us; he even tried to push me down when I wouldn't let him have his way. His behavior was back to normal Friday and Saturday morning.

Practicing infusions on his therapy buddies, Iggy & ZeeZee

Saturday afternoon, we left the dude with my mom for an adults-only date night. His behavior while we were gone, as well as all day Sunday and some of Monday, was the stuff toddler-mom nightmares are made of. More screaming, aggression, throwing punches, and just being mean. I called his immunologist--she'd never heard of such a side effect. I talked to several experienced moms in online support groups who said their kids had reacted similarly to this particular drug, although no such effect is listed in the drug insert (or online). We needed a plan.

I decided to take him to the new indoor play area at the mall and meet up with a mom-friend, thereby accomplishing two goals: keeping the dude active and getting a little adult conversation. The morning could not have gone any better, I tell ya! He played so well, alone and with other kids. He shared, he used his manners--I was such a proud momma! We bought new shoes (such a good sale!!), had a mother-son lunch, and even got cookies as a special treat. 
Enjoying a fruit cup while I shopped...

Then we went home, and all hell broke loose. It started with a simple request to check his temperature, and well...
My sweet baby had a complete and utter meltdown. He yelled, he clenched his fists, he threw anything he could lift over his head across the room. He screamed at the top of his lungs until his face was purple. And then this momma called the doctor and had a little "Come to Jesus" meeting with the nurse, and then a very similar meeting with the pharmacist. We cancelled the next shipment and decided to give him a few weeks off before deciding if we will resume treatment with an alternative drug. And then we both sat on the floor and cried. No more Hizentra for this boy.

This post was truly difficult to write. It was hard to relive the meltdowns that broke my mommy heart. Watching your child lose control of his behavior to such an extent is awful; the pitiful, confused look in his eyes tore me to pieces. He didn't understand what was happening, and I felt useless because I had no answers; no solutions. It also gave me a new understanding, a new empathy, for parents and caregivers of children who struggle with these types of meltdowns daily. I chose to post our story because this information was not available to us. Had we known this was a potential side effect of that drug, we likely would have chosen a different one.

Tuesday, July 1, 2014

Jack Jargon {Past conversations, part 2}

Hope you enjoyed the last Jack Jargon post! Adding a few more today. ;)

"Oh momma! I love you again and again and big and big and big!"
April 18, 2014

April 22: (after using the potty)
Jack: I did it!!
Me: Yay! Let's put your undies on, then you can pick a sticker.
Jack: Wellllll, ok. But first lemme do my dance moves!
*Proceeds to do something similar to the cha-cha slide on the rug in just a t-shirt.*

April 23:
(After getting fussed at by the hubs and then being to "upset" to finish his dinner)
Me: Oh Daddy tell him you're not mad at him--you broke his heart!
Dad: Dude, I'm not mad at you. You just need to stop kicking the table and eat your apples.
Jack: But daddy! I has a broke heart!!

April 24:
Jack: Daddy, you are white.
Me: What color is mom?
Jack: Brown!!
Me (couldn't help myself): And what color are you?
Jack: Yellow!!! (and now you know...)

May 15:
Jack (yelling across the house): MOM! What are you doing??
Me: I'm doing some work. (paying bills at the kitchen table)
Jack: Come do your work in here, in my room, so I can yook at you!

May 30:
Jack: Oh momma! I dis yove you!
Me: I love you too! You're my favorite! (Something I've told him since he was born)
Jack: No mom you my favorite!...Mom? What "favorite" means?
Me: It means I love you more than anybody else in the whole world.
Jack (after pausing to think about it): Oh mom I yove you in da widest world. I yove you more den da moon and da snow. 
-several smooches later-
Jack: Ok dat's enough kisses now.

Aaaand now we're all caught up!

Monday, June 30, 2014

Jack Jargon {past conversations, part 1}

Here are a few past gems:

January 19, 2014
Jack: What's next?
The hubs: We're going to Church.
J: I don't know where Church is! Where's my backpack??
Me: It's right here...why do you need that?
J: I don't know where Church is! Backpack,  backpack?! We need the map!

February 9, 2014
Jack: MOM! What you doin' in laundry room?
Me: I'm getting some clothes.
J: Oh ok! See you later, bye!
-brief pause-
J: MOM!! You still in there?
Me: Yes...
J: Ok. How it's goin' in there?

February 11 (Stalling at bedtime edition):
Jack: I have something in my eye. (opens his mouth)
Me: I thought it was your eye?
Jack: (pause, then a gasp) I have TEEF!!
-brief comparison of his "little" teeth to my "big" teeth-
Jack: Lemme see ya big teef! *gasp* Oh mom, they're soooo shiny!!

(This one still makes me laugh out loud when I think about it!)
Feb 14th: Doctor's office edition
Out of the corner of my eye, I see a man walk up behind us as we're waiting to pay.
Jack (loudly): Mom! He's missing one! Yook!
Me: (Silently praying) Please, sweet baby Jesus, don't let it be a leg or an arm that man's missing...(slowly turning around to see it's just a shoe)
Jack (even louder): Hey, you just have one?? Where's your 'nother shoe? You missing one! Where's your shoe?!?
-Thankfully the man just smiled and laughed. Just a few minutes later at the pharmacy, I had to use my best ninja-mom skills to keep the dude from seeing the man who actually was missing both can't make this stuff up!

March 6:
Me: Did you finish your cow pouch? (pudding with a cow on the box)
Jack: Yep. I frew it away.
Me: Where did you throw it?
Jack: In da trash.
Me: Are you fibbing?
Jack: (long pause)...Yep. I'll go get it...

March 30:
Me: Do you like your broccoli?
Jack: No...
Me: Did you even take a bite?
Jack: I can't , Mom! It's dirty!
Me: It's not dirty..look, it has cheese on it.
Jack: Oooohhh! Cheese?!? Ok.
Me: Can you take a bite now?
Jack: No, I don't sink so.

April 14:
Jack: MOM MOM MOM!!!
Me: What?
Jack (panicky): There's something in my mouth!
Me: What is it??
Jack (very calmly): Just my teef.

**Hope you got a chuckle! More to come soon!**


This is a long story, so I'll just jump right in. If you've already heard it, feel free to skip to the next post. :)

In July 2013, Jack starting running a fever with no other symptoms. After running temp everyday for a week, we went to our pediatrician. She assumed it was something viral, and sent us home. Two weeks later, we were back again; still running fever. She gave him a full check-up and still couldn't find a source. After six weeks of still running fever, we starting running labs. SO MUCH LABWORK! I swear if it's possible to detect via blood test, we tested for it. Still nothing. After nine weeks of daily fever, it finally broke and was then recurring about 5 out of 7 days. Finally, on October 30th, we saw a pediatric rheumatologist at Children's Hospital in New Orleans. Jack's pediatrician was trying to rule this out because I have an autoimmune disease that manifests as moderate to severe joint pain, which doesn't show up neatly on labs.

The rheumatologist was very thorough and decided to run more labs. His initial opinion was not rheumatological, but instead related to his immune system. These new tests came back two weeks later; the doc was right. We were referred to an immunologist closer to home. In December, Jack was diagnosed with Specific Antibody Deficiency (of IgG). In my own non-medically-educated words...the immune system has several different types of immunoglobulin, which function as antibodies to fight different types of infections. IgG is the type of immunoglobulin needed to fight off viral and bacterial infections. A healthy immune system has 14 different IgG antibodies; Jack's body was only producing 3, and the amount of those three in his blood was barely traceable. His only physical symptoms were persistent, recurrent fever and little to no appetite, with a history of being resistant to antibiotics If you have no experience in Primary Immune Deficiencies, which we did not, you've probably never heard this expression. In medical school, doctors are typically taught "If you hear hooves, think horses," meaning, look for an obvious source first. Immunologists practice by the idea of thinking zebras instead of horses. Kind of cute, huh? Anyway, patients with P.I.D. call themselves zebras.

The first step of treatment for Jack was a booster shot call Pneumovax, which boots production of 23 different antibodies. He initially had a great response to the shot, but after 6 weeks was going back down. We decided to start immunoglobulin replacement therapy. We opted to have the medicine administered via subcutaneous infusions, which we can do on our own at home, versus IV therapy in a infusion suite at a hospital. Jack started treatment on June 9th, and gets an infusion once a week. We'll be rechecking labwork in another month to see if it's working. If it isn't, we'll be back at square one and will be referred to another specialist. If it is working, we'll continue treatment for up to 6 months, then take him off to "see what happens." From what we've been told, in some cases a few rounds of replacement therapy seems to clear up the condition, and no further treatments are needed. More commonly, the condition is life-long, but thankfully not life-threatening.

For more information about Primary Immune Deficiencies, please visit

Starting Over...

So a year ago, I decided it would be a good idea to start a blog. My reasons were simple: 1) I'm a talker; 2) I've always loved to write and haven't made the time for it in years; and 3) I enjoy reading other people's blogs. It all sounded good, then life got in the way, changes came along, and with them came some major writer's block. Perfect timing right? So I'm starting over, and trying again. The writing juices are flowing and I have more ideas.
One of the main reasons I've always liked writing is that it helps me process things. The truth is I am a counselor. When I'm working, I help my clients process things. When I'm off, I spend my time processing my own stuff. Writing helps me do that. I think blogging could be a fun way to process things, as well as a way to open up to others. I've always been an open book--I can keep others' secrets, but was never good at keeping my own. So, if by blogging I can make you laugh, help you see something about yourself, make you feel less "alone," or learn something new, it's worth my time and effort. But, first and foremost, I am doing this for me.

What I Intend to Write About:
Whatever strikes me! When I work on coming up with blog ideas, I always come back to things I do often enough to write about more than once. I've confessed before that I have an unhealthy relationship with Pinterest, but I don't pin just to pin--I actually do most of the stuff. So, I'm hoping to have a regular series about what pin I'm trying that week.
If we're friends on Facebook, you're familiar with "Jack jargon." If not...I'm lucky enough to be the mother of the funniest kid I've ever met. He's almost 3. I first posted a "Jack jargon" not long after he started talking in complete sentences, and those posts have really taken off since. Whenever I run into a Facebook friend in person, they always comment on how much they love those posts. Several have suggested in recent months I start a blog...imagine that! Needless to say, Jack jargon will have a prominent place here.

Here we go...!!