My Tee-niney Molly Doll

*Warning:  this is the kind of lengthy only family can endure;)  Also, the formatting is wonky and the writing doesn't flow--been adding to this post bit by bit over weeks.

Here's our latest chapter in the Molly saga.  I want to share this so family can follow along and so that someday we'll have record of all this to share in a more concrete way when our memories don't suffice;).
At Molly's three-year well visit back in September of 2012 she weighed 27 pounds and measured 2 feet and 9.7 inches.

Molly at 3

And here she is at 3 and a half...

These stats, as I spelled out in this post, put her in less than the 5th percentile for weight and height, down from the 20th at her two-year well visit.  Our doctor asked me to bring her in for a weight/height check in three months to see how things were progressing.  This check was coupled with Jack's 6 month well visit.  I took them both by myself and I must say it was not my favorite day.  Jack checked out well until she started rotating his hips.  My stomach sank and my heart hit the floor when she looked at me and said,  "Okay, I feel a little click."  It was a moment I'd dreaded in the back of my mind since I found out I was pregnant again.  But really, while I'd dreaded it, it wasn't a conscious, worrisome, dwelling-on-it dread...just something I knew could happen and I didn't want it to.  It was in this same visit that I learned Molly had grown almost an inch (she was 2' 10.5") and weighed the same 27 pounds.  Dr. Barr errs on the conservative side (which I appreciate about her) and after asking about our family size history (everyone average or above in height) decided that Molly should have a bone age scan and blood drawn and sent to the lab to make sure everything was copacetic.  She also informed me that Jack's hip click was sooo minor that she wouldn't have even mentioned it if he didn't belong to me with Molly as a sister...BUT she wanted it x-rayed to rule anything out.

Well, we scheduled all these tests to happen at the same time for convenience sake.  Everything was done at CHOA Scottish Rite.  (P.S.  I am continually amazed at how they handle and process children and their families.  They are quick, very efficient, child-friendly and they treat everyone as if their concerns and experiences are important.  I mean, Ryan and I knew that our children were coming in for run-of-the-mill tests for non-life-threatening situations and--while it's all relative and we, of course, are wanting the best for our sweet babies--we try to keep that perspective while among so many children that are dealing with much more drastic life situations. But I love how the staff at Scottish Rite don't treat you like you're one of the "lucky ones" who should feel no anxiety over your child and the battery of tests they're undergoing.  Does this make any sense at all?)  Ryan went with me this time and at registration we decided to divide and conquer so that we could get out of there more quickly.  I took Jack for his x-ray and Ryan took Molly for hers then we met back up for blood work.  We were there for barely over two hours...a Christmas January miracle.

Just before my doctor's office closed on the same day we had a call from the nurse saying that Jack's films had come in and his hips were...PERFECT!  No evidence of a socket problem or any kind of dysplasia.  AMAZING!  THANK YOU GOD!

Here he is all happy about his hips:

Molly's results took a couple more weeks to come in.  We learned from the bone age scan that even though she's 3 and a half her bones are the size of a 2 year old (no duh) and we were told that her lab results would have to be read by and told to us by an endocrinologist.

Now, this post is getting wordy but I'm keeping it detailed for all you family/like-family out there who I haven't been able to fill in as we go...

So, we went to an endocrinologist.  Let's just say if you need a pediatric endocrinologist in the metro-Atlanta area I have some opinions.  The first one we went to was not child-friendly despite the word "pediatric" in front of their practice.  Lame.

" See, look how big I'm growing, Mommy!"

Molly gets to measuring while waiting on her toenails to dry.

I sought out advice from the locals on, where else, Facebook, and was told by three separate families (all from the school where I work and all from different times in my career here) to go to Dr. Van Meter's office.  And I was also visited in person (as a result of my FB post) and told not to go back to the first doctor--she'd had the same strange, uncomfortable feeling about him.  Done and done.  I called Dr. Van Meter's office and  was instantly at ease with the lady on the phone who scheduled me right away and insisted that there was no paperwork to be filled out ahead of time.  To which I replied, "are you sure, cause the last place I had to fill out at least 15 pages of family history"--cut to me texting my mother and father in law and asking what age they were when they started puberty etc.  Haha.  And her response, "Dr. Van Meter wants to find out all of those things face-to-face.  He'll take care of writing it all down for you!".

So, we went to Dr. Van Meter's office.  We weren't even a foot in the door and I was turning to Ryan saying, "I love this place!  We're staying with them!"  Molly loved it too.  Mary (Dr. Van Meter's daughter, we learned) came and took her vitals and Molly liked her a lot! (You can tell because she sticks her tongue in her cheek and tries not to smile or laugh when she really thinks you're funny and she's being shy...it's my favorite face.)  Then Dr. Van Meter came in and spent the next hour and a half (no joke) with us getting to know Molly and asking questions pertinent to her issues.

Measuring Molly--Molly gets measured by Mary, Dr. Van Meter's daughter.  

She totally dug Mary.  Can you tell?

He relieved SO many concerns.  Initially, I was very against "hormones".  It sounds so negative and belongs with words like genetically engineered, GMO's, and all the things that people are freaking out about nowadays (and rightfully so).  So, when told our daughter was small I thought (and said out loud to doctors and stuff) "Right.  She's small. That's how God made her, and that's how she'll be."  After some research and the talk with Dr. Van Meter we understood that this was no cosmetic matter at all and that she truly did need further testing to know how to proceed.

Next on the growth hormone testing agenda was a stimulation test. During this test they give her a drug that stimulates the release of her human growth hormone and then take blood at 30 minute intervals to see how much has been released over a period of 3 hours. We scheduled this test at the beginning of April during spring break and I accompanied her.

On the way to Stim Test #1 with Rapunzel

We got there before Dr. Van Meter's office even opened.  Molly said, "take a picture, Mom!" and I obliged.

The "magic hand" wall that fascinates while we wait.

The floor tile filled with gooshy goo that moves when you walk.  Coolest waiting room ever!

Mary (one of Dr. Van Meter's 4 children who happens to be a nurse at his office) measures Molly with a super accurate measuring device.

They start it early in the morning (since it's a fasting test) so we were there before the doors opened. They usually put a port in so that they can draw blood throughout the test with just one initial "stick". After warning them that her veins were terrible and rarely took to caths and IVs they did their best, tried twice, both veins blew, and they declared that they would have to just do individual blood draws instead of taking it through the port...sad news:(. The drug they gave her made her sleepy so she sat in my lap and they put on a movie for her. Then they took the initial (control) sample and after two sticks already, Molly was not happy about it. Every thirty minutes after that they came in for a sample. A total of EIGHT sticks. It was horrible. THEY were great but it was just so hard to watch her tense up every time the door opened and then plead with me saying things like, "this is NOT my favorite" while they got the next sample.  Half way through they decided to let her pick out of the treasure box each time instead of waiting until the end. This helped.

 Being silly:)

Passing the time

"Take a picture of my bandaid, Mommy"

And she still smiles even after being stuck:(

 We were there for over 6 hours with nothing to eat or drink (from dinner the night before) until it was all over. She sat and devoured her snack lunch in silence--wouldn't even talk to me.

Sleeping Beauty

All done!  Eating her snacks and wearing her treasures (that were definitely EARNED!)

Fast forward to a week and a half later at the results call. They were looking for any level over 10 to show that HGH (human growth hormone) was present. Her levels all came back as less than 1. A little low don't ya think? They did.

We moved on to the next step in the process--stimulation test number 2. They do it all over again except this time the test is longer (4 hours) and the samples are taken at hour intervals instead of every half hour. Ryan took her this time. Same individual sticks but he said she handled it like a champ. Results? Same as before, pretty much. Her highest level came back as 1.1. She was declared "officially human growth hormone deficient".

The next requirement before treatment for HGH deficiency is an MRI. This is to determine if the pituitary gland (where HGH is released) is indeed intact, appropriately formed, and functioning and that there are no brain tumors present. It is assumed that it is but they must confirm this via MRI before they will move on with any treatment. That's where we are today. I'm sitting right now pecking this out on the iPad while we wait for the call that she's done in the donut machine. When we're done here we'll take our little girl to grab something to eat (again with the fasting) and go pick up Jack from Karma's for an afternoon nap. Then we'll take them both back to Karma's while we take the disc of images to Dr. VanMeter for our parent conference this afternoon to discuss treatment.

Taking in a little Dinosaur Train with Rapunzel before her MRI

Waiting patiently for her to wake from sedation (post MRI)

Glad to see us:)

At home and all is well:)

Now, the routine treatment for this deficiency is a daily shot of human growth hormone until she's 15 years old. Our endocrinologist, however, is a part of a recent study that is testing a once-monthly dose of HGH. Super cool! To qualify for the study you must be diagnosed after your 3rd and before your 5th birthday--ding ding ding!--and I'm not sure what else yet. I believe we find out today. If she's accepted she would only get one shot A MONTH instead of daily AND it would ALL be paid for....and this stuff is ex.pen.sive. That's our prayer. That she'll be accepted into the study.

So, that's the short version (no, really!) of what's going on in Molly-land. We're continually amazed at her attitude and way of handling all this ridiculousness. The nurses and doctors just today have complemented her behavior many times and said they wish every patient could be like her...so smart and brave and sweet. I might be a bit proud of that;). After her vein blew with the first IV attempt today (EVERY time I tell ya!) the nurse said she'd bring Molly a surprise for being such a great patient. We're thinking a sticker? She walks in with this honking thing....

I'll update when we know about the study and more on our growing girl!