Finn - GHT 6 month update

Hard to believe we have been doing nightly "flu shots" (growth hormone injections) with our little guy for 6 months!  WOW!  But, the calendar says we have, and it was time for a check-in with our endocrinologist at OU Children's Hospital.  While we were looking forward to the visit and any news about our progress, we also knew we were in for updated tests and test results.  And that process did not go very well last time, so we were a bit anxious about the process this time.  Plus, it's really not ever FUN to take a kid to the hospital.  Even when it is an excellent facility specifically geared towards tiny humans.  It's stressful, and overwhelming, and exhausting. 

Since Finn's appointment was scheduled for late morning, we took the whole day off work.  The nice part about that is that we got to take all the other big kids to school before we left town.  Such a  special treat for all of us!  So, by mid-morning we were OFF to Oklahoma City!

Finn watching a video in his sunglasses

He loves Rudolph

Half way there car selfie!

We got to the hospital right on time, and after a quick restroom break, we signed in an waited our turn too see Dr. George.  Finn was so great when the intake nurse weighed him, measured him (3 times, of course!), and took his blood pressure!  He really is becoming an old pro at all this doctor stuff!  When Dr. George came in, and went over all the numbers with us, and did an exam of Finn.  I love how he always takes him time with us, talks to us in a way we can understand, and really interacts with Finn the whole time.  We never leave with any unanswered questions, and always feel well taken care of.

So here is what we learned this time!  The GREAT news is, Finn responds VERY well to Growth Hormone Treatment.  Since we last saw Dr. George in late August, Finn has grown 1.5 inches!  He is now standing at 40.5" tall!  We are so excited about this growth!  Over the last 15 months as we have worked towards a diagnosis and started treatment, he has grown a total of 5.5 inches!  He started in the 8th percentile, and now is in the 46th percentile.  This is GREAT news and we are so happy for Finn!

But of course, where Finn is concerned, it's not always going to be smooth sailing.  Unfortunately, since his last visit in August, Finn has only gained a few ounces in weight.  From 30.1 lbs to 30.3 lbs.  He is definitely not keeping up in this department.  In August, he was in the 15th percentile for weight.  This visit?  He had dropped off to the 5th percentile.  *sigh*  We attribute some of it to the cold he's been fighting for a couple of weeks.  We know at home he has weighed more, but even when Dr. George plugged in our "home" numbers he was not happy with the results.  We have been seeing a pediatric GI doctor as well, and we see him again the first part of February.  He has been pretty passive in the past, just giving us strategies and diet suggestions to get Finn to eat, but holding back on further testing and such.  If Finn doesn't gain a bunch of weight by this next appointment, we may be looking at further GI testing.

Finn being cute in the exam room

So, our instructions as we left the office were to keep the GI follow up in February, schedule with Dr. George for a 3 month recheck, head to the lab for blood work (YUCK), get Finn's weight up, and (the doozy in my opinion) reduce his growth hormone dose by almost half.  UGH.  I totally get why.  He's WAY too thin and we're not doing him any favors by not allowing his body to catch up a bit.  But it still hurts to turn back on something that's been working so well.  We're also going to keep a home weight log to be able to account for the ebbs and flows a little better between visits.  Next stop, THE (dreaded) LAB!

As we headed out, the nurse put Lidocaine (numbing cream) and Tegaderm tape (clear Band-Aid) on both of Finn's arms.  Again, he was such a trooper during all of this.  The sweet nurse said it was lotion and the tape would hold it in place.  Then she had his squish it so he could feel what it was like.  He loved this!  But, he also thought it rendered him unable to bend his arms!

"Look at my lotion!"

Seriously, we all thought it was so funny to watch him walk down the hall towards the elevator.  I just had to capture this moment with a video.  Here he is walking to the next destination - the lab!



Once we got to the lab, we were again extremely impressed with the way things are done at OU Children's!  It is all so efficient, and family friendly!  Finn was AMAZING!  Once we were in the  phlebotomists room, I told him he was going to sit up on the big chair.  And he did.  The nurse tied the tourniquet on his arm - which he didn't like, but stayed true and strong.  He let her peel the band aids off, no issues!  Now, when she got out the butterfly needle and he saw it, that was the first *flinch* we had seen.  But, he got over it!  The nurse got a good vein in one stick, gathered her 3 vials (!!!) of blood, and just like that, WE WERE DONE!  Finn did such a great job.  She let him pick which wrap he wanted for the stick site.  He chose green dinosaurs!

While we wait for the blood test results (not expecting anything out of the ordinary), we are trying to feed him, and we will keep the home weight log.  We see Dr. Altaf (the GI) in February and go back to Dr. George in May.  Keep praying for positive growth, and for weight gain and fewer eating complications.  We are so excited about how much the growth hormones have improved Finn's quality of life (less illness, less lethargy, more personality, more interactions, HEIGHT), but also want to make sure he is WHOLLY healthy so the eating issues have to be contained.  While for the first time in his 4 years of life he actually feels hunger and asks for food, he is "full" within  just a few bites, and is very hesitant to eat anything that's not Goldfish crackers, Chick-fil-A chicken nuggets, mac & cheese, or Pedia Sure.  We can get some peanut butter, Nutella, and the occasional ice cream treat in there, too, but his diet is very limited!

Thanks for all the prayers and concerns.  Finn is a fighter!  And has a great suoport system.  Including all of you!

Once Tiny, Always… TINY?

Here we are, a couple of weeks past Finn’s 3^rd birthday, and I am reminded of this picture.  Of this season.  A season we thought had basically passed through and moved to the other side of.  All the struggles of prematurity and delayed development… The day of his first birthday party was also the day we participated in our first March of Dimes March for Babies.  Finn’s shirt won the T-shirt design contest (just like this year, too!).  His shirt said, “Once Tiny, Always Strong.”  We loved that shirt.  And as we approached and passed the milestone of his third birthday, we thought we would start being released from some of the specialized physicians we see.  But, this was not the case… 

Let’s turn back the clock 6 months.  We had seen our local pediatrician because we were concerned about Finn’s weight gain and stature. She started us on an appetite stimulant, and referred us to an endocrinologist in the City.  It took 6 weeks to get in with him, and in that 6 weeks the stimulant medication had worked WONDERS on our boy!  He was growing, eating, and  developing at amazing pace.  We did find out something new at this visit, however.  He asked if we knew that our son had been diagnosed with “SGA” after his birth.  I had no idea what that was, so I said no and asked what it meant.  He told us it meant he was “Small for his Gestational Age.” In other words, Finn was smaller than the average 26 week 5 day gestational age baby.  Once Tiny. But, based on that and the other presenting factors, especially the success we had with the recent prescription, the decision was made to stay the course, but to make a 6 month follow up “just on case.”  That appointment was scheduled for October 20.

On October 5, 2014, Sweet Mr. Finn turned 3.  Feisty, Finicky, Fearless Finn.  Funny, Fretful, Fighter Finn. Fabulous, Flirty, Fickle Finn.  We celebrated at his pre-school with cupcakes that week, and had a small gathering at home for his friends and family.  His favorite things are play-doh, Legos, and all things FLAGS – especially American flags!  It snuck up on us, and it took our breath away.  We made it!  “Early Childhood!”  THREE!  And he was doing so well!  At or just barely below all his developmental milestones for his age.  A glimmer of normal…

And as all 3 year olds do, he had a well-child check with his pediatrician the next week.  Where everything checked out well – and the only shot he had to get was for flu prevention.  Except… Except for the pesky little fact that he’s not getting any bigger.  He weighs 26 pounds (9%) and is 35 inches tall (3%). Her exact words were, “he’s not growing as we would expect.”  I guess with parents both over 6 feet tall, an uncle who stood 6’7” and a 7 year old brother pushing 5 feet and 95 pounds, being tiny definitely isn’t “expected.”  She went on to say she thinks this is something beyond just being born prematurely and we probably ought to keep the appointment with the endocrinologist.  Man!  We just knew we were going to leave there and call to cancel that appointment because we were doing so well.  No such luck.

Fortunately for us, we already had that appointment on the books, AND it was just a few days later.  Easy enough to pass the time.  With thoughts and fears and hopes and dreams.  With questions and concerns and prayers and tears. With hope and love and cuddles and kisses.  We are weary.  All of us, from the fight we have been on for these past 3+ years.  And we truly thought we might be on an upswing. Only to be brought back down by the crest of this wave.  A wave we will ride, but not without adversity, I am sure.

Monday, we spent the entire day in Oklahoma City.  After dropping all the big kids and their respective schools in Stillwater, we were off.  First stop – the pulmonologist.  Where, even with this newest round of cough and congestion from allergies that Finn is struggling with, we were given a clean bill of lung health and made a plan to be back after the first of the New Year.  Then, it was lunch at Jason’s Deli (YUM!), a jaunt to the mall to play on the indoor play equipment, then to Mercy Hospital and the OU Children’s Clinic to see Dr. George, our endocrinologist.  The lobby was busy and bustling – very different from the last time we were there.  And the wait seemed intolerable – our baby had already had a long day!  But little did we know what was to come. 

He was very thorough.  The doctor, that is. Very patient. Thoughtful; deliberate with his words.  He seemed to waver back and forth a bit about what our plan of action should be.  He asked lots of questions about the past 6 months, about his prematurity, and about family history of stature.  This was the plan of action we decided on as a team.  Even though his was diagnosed “SGA” and currently below the 10^th percentile for both height (3%) and weight (8%) and he would probably qualify for growth hormone therapies, we are going to give him until age 4 to catch up some more.  Always Tiny?  In the meantime, the physical examination yielded no evidence of hormone deficiencies, but there could always be some underlying factor only detectable by more comprehensive testing.  And there’s no time like the present.  The doctor ordered an X-ray of Finn’s left hand to determine bone age, and 2 and a half PAGES of blood labs – that needed to be collected in 4 different vials. 

The bone age test will determine if his bones indicate the same aging as his chronological birthday.  If his bone age seem to only be 2 years, then he has a lot of growing left to do and he will probably catch up.  If his bone age is 3 (or more), well, then, we probably need to help him catch up.  We went down to radiology – where the wait was long and the room was tiny.  But Finn LOVED the X-ray tech and getting his picture taken with her BIG camera!  Even if it was of his hand!  She was so sweet and kind to him.  And when she was checking to make sure she got a good image, she let Finn and I watch it render on the “pa-cuter” screen.  Finn saw his hand, then saw the images of the bones and he exclaimed, “It looks like Halloween!”

The blood work is testing for many different things – most of them over our heads.  The doctor told us that the 2 “big” tests take 14 days to get back. These tests are looking for anything else that might be causing the growth delays and any hormone deficiencies he may be experiencing.  It was off to the lab we went.  The lab wait was short, and the room more comfortable.  And the lab tech was excellent, too!  Kind, patient, caring, professional.  But getting a good stick on a squirmy, tired, coughing 3 year old proved to be a challenge.   One she could not overcome on her own.  She called in reinforcements (and THIS SONG was playing while she was gone - I knew my brother was watching over us!) in the form of an experienced nurse they called “Grandma Vickie.”  45 minutes, 3 sticks, 2 techs, and 1 teddy bear (his gift for being so brave) later, they got the 4 vials of blood needed.  And we finally got to go home.

The 2 week wait is upon us. I definitely left the clinic and hospital on Monday night feeling better.  Dr. George is in no hurry to push us into (expensive, grueling, time consuming) growth hormone therapies, but he wants to get to the root of the problem with some preliminary testing.  If these tests all come back within normal ranges, they become the “benchmark” for the tests we run next year – when he is four.  I like this plan.  I have every faith that the results will be favorable.  That the next 12 months will yield extraordinary growth for Mr. Finn. We serve a mighty God and we have prayed BOLD prayers over this situation.  We ask you to do the same.  In Jesus name!  Finn may always be tiny, but he will also always be STRONG!

As for the rest of us… Well, life keeps happening at break neck speed!  Emma and Lara both landed roles in the chorus for their middle school production of High School Musical 2 this spring and are constantly at rehearsals.  Lara is LOVING dancing at her new studio and is also helping with choreography on the musical.  Emma is working with a practice volleyball team to improve her skills and looks forward to trying out for the school team next year.  She is excelling at school and loves helping others.  Both girls got straight A’s the first 9 weeks of school – something they both worked very hard for!  Britt and I are both working, working and WORKING.  Working our jobs at OSU keep us in the know and young at heart while working on our weight loss and wellness journey (he’s lost 65 pounds, I’ve lost 45 – and both still counting!) and WORKING our ******** business so soon we can live out our dreams with our family.  In the meantime, Jake just finished up his flag football season tonight with a double header.  SILVER BULLET ended the season UNDEFEATED!  Jake looks forward to playing with this team of amazing boys and coaches again next year.  He is doing GREAT in school – his teacher calls him the Gentle Giant.  I have felt the presence of my own Gentle Giant, Big Oaf to my Little Oaf, my Big Brother, many times over the course of the last few weeks.  None greater than in that lab when I was begging for guidance from above so those ladies could get the blood they needed form my sweet boy and we could get him to stop screaming, coughing and flailing about.  God provided.  He always does.  As I know he will through this season for Finn and our family.  God is good.  Finn is proof.  All the time. Once Tiny. Always Strong.