The tale of Lucia and the brain machine


Once upon a time there was a little girl.  And the word little,there, was quite exactly that.

At 6 months old, her doctor noticed that she wasn't growing at the rate she should be.  So she was recommended to a pediatrician who proceeded with a plethora of tests.  Her mommy didn't enjoy this pediatrician, but that was mostly because there were so. many. tests and it took so. much. time.  But then again, mommy isn't exactly known for her patience.
The little girl did not enjoy these tests and even more so, her mom was a mess. The little girl was tested for Cystic Fibrosis, Dwarfism and many other things.  It wasn't fun for the sweet baby to be poked and prodded over the course of a year.  Did Mommy mention she was starting to get impatient?? 
Finally everything was ruled out and it was down to the last possibility: a growth hormone deficiency.  The test to diagnose this would not prove to be easy, you see, the little girl's veins were so tiny that they could never get a needle in to draw the blood and do the injections.  This was a feat that not even the preemie IV specialist guy could conquer.  The little girl's parents were running short on hope when finally in January of 2013 they were successful getting the IV in and the day of testing was completed.  After 4 trips to the hospital for the treatments.  Yes, Mommy was frustrated.

In February that year, the little girl would start her nightly needles until she is in her teens.  That's a lot of needles.  Ya, like 4000+.  Good thing we have a sharps' container and don't leave them laying around.  Also nice that our pharmacist is the little girl's uncle and we get airmiles for the thousands and thousands of dollars spent monthly on her meds.  Also grateful for health care. Just saying.
The first while was a fight with lots of tears and eventually the little girl got a hang of it and would take them like a champ.  Other family members have been able to give her the nightly injections too. Her current fave is Grandpa.   Her dosage has changed in the past 3 years as she reacts to the drug and grows, grows, grows. Has Mommy mentioned how much she enjoys shopping for a little girl who keeps growing? Along with the nightly needles, the little girl was checkups with her pediatric endocrinologist every 4 months and a bone scan done on her hands every year to make sure her bone age keeps up with her growing...she's behind on this, but that means she will grow for a longer period along with blood work to make sure her other hormones aren't being affected, like the thyroid.
To date, the little girl has had the best case scenario reaction to the drugs and has grown leaps and bounds.  She is no longer in the 0th percentile but the 50th and is, in fact, no longer a little girl.  I know I shouldn't keep comparing her to her cousin, Kinsey, who is 7 weeks older than her, but it is so nice to see them the same size when Lucia spent so many years looking like Kinsey's little sister.  

The brave big girl faced one of the last big tests this week, getting the MRI.  To be honest,  the brave big girl was more excited than her parents.  In fact, the morning of, she was thrilled to see the machine and really really wanted to see pictures of her brain.  She was feeling proud and privileged that she gets to see inside her brain while in a machine. She also thought the machine looked like a laundry machine.  So she put on a brave, but serious face during the talks with the nurses and anesthesiologist and without even looking back, went off to get her treatment done.  Thankfully, the anesthesiologist was a parent of kids' her mommy teaches, so that left everyone feeling at ease.  

waiting and learning before

waiting and playing before

resting and relaxing after

back to her normal self after

When her mom and dad got to see her in recovery, the big girl was groggy and confused but really really wanted her red popsicle.  And that she got.  No punches were thrown this time and she reacted much better to the drugs.  Mommy is very grateful for this.  The big girl remained sleepy until she got home, got cozied up in bed with her mom, eating crackers and drinking water and watching some random show (with creepy fairy pixies that looked like Pokemon) on Netflix and slowly she started to wake up. Meanwhile her mommy wrote down all her memories of the day, dreaming of a glass of red wine.  By the time her brother got home from school, she was jumping on the bed Lucia, not her mommy, ready to tell him tall tales from her adventure with the big brain (washing?) machine.
The End. (1)
Here is Lucia's version of her day.  Not even abridged. This was all she chose to remember:
The Dr. gave me a mask that made me sleep and I got a popsicle when it was done.  It was red. They put the needle in my hand. I didn't even feel it.  Before it, they gave me a stuffie.  It's a Polar Bear.  (  The End (2)

Editor's note

I like to talk tough and put on a strong facade facing hurdles in life, when in reality, I'm usually a bundle of anxious nerves who can easily get sucked down the vortex of scary possibilities if I let my mind go that way.  I have come to realize that that is parenting and the sooner I can get in control of the places my mind wants to go, the better off I am.  I need to remember that this is Lucia's story and I am no help to her if I am a mess.  Funny thing is, talking with Dan while we waited for her during the MRI, we were both worrying about completely different things and we both thought the other's worries were completely far-fetched and not realistic that his worries weren't even on my radar and vice-versa.  Perspective.  In the end we only want what's best for our children and it is hard to see them living trials and tribulations in life, but such is life and if we can teach them that it's okay to be scared, but that you have great people who you can hang a little harder on during these times, then I think everything will be okay.
Do all things with love, n'est-ce pas?

The End (3)


  1. Lucia is definitely part you. She is strong and saw this day as an adventure (I mean really, the MRI as a laundry machine. Sounds like something you would say!). Lucia left all the worrying to her parents which is exactly what you allowed her to do. You did great. She did amazing. And she did get the best color popsicle, so I don't blame her for having that on the highlight reel.

  2. She's amazing and so brave! What an incredible journey she's made.


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