Wednesday, December 2, 2015

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!

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