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!

Come a Long Way

Last week was a typical roller coaster in the Finn world.  We are enjoying the ride, though.  I have always loved learning, and this is a season of much growth in that area!  We had appointments with 3 of his specialists last week: the audiologist at Hearts for Hearing, the newest addition to his care team – the Pediatric Gastroenterologist at OU Children’s Physicians and the Pediatric Endocrinologist at OU Children’s Physicians.  We were lucky to get the last 2 scheduled back to back, since they were in the same building!

I have to take a moment to remark on OU Children’s.  You know us, we bleed orange!  When Finn was in the Hospital side of OU Children’s a couple of years ago for 8 days with RSV, we made sure to wear a spot of orange every day!  I remember my dad had a rough time coming to the campus to see his grandbaby because of all the crimson and the signage.  But, I have to brag on them.  REMARKABLE.  Best hospital and clinic experiences I have ever had.  I remember feeling that way during that stay, but our new encounters have reinforced this.  We are completely blown away by the level of care, the compassion and the service at this hospital!  Every time we have seen our Endo and this time with the GI each physician has spent 30+ minutes with our family addressing all of our concerns.  It’s so comforting.

On Tuesday, we made our way to Oklahoma City to see Miss Sara at Hearts for Hearing.  She has been seeing Finn since he was 6 months old.  In that time, he has never completely passed all the parts of the hearing test.  He has had lots of Sooner Start interventions, visits with the Ear, Nose, and Throat doctor including 2 sets of ear tubes, and still feel “behind” at the audiologist.  Last visit (4 months ago) was the best visit we had ever had, but he still fell short, and they wanted to hear more words from him.  Last week?  He blew them away!  He was in an excellent mood, did all their tests without any threenager drama, and PASSED THEM ALL with flying colors!  We were so impressed with how well he was doing, but we don’t know what they are looking for.  As we got close to the end of the testing we could tell the audiologist and the speech therapist were exchanging “knowing looks” but we were still surprised when they said we don’t need to come back unless we have problems!  He has graduated from their care!  So very exciting!  We will miss them, but sure are proud of our Miracle for passing this hurdle!

 

 

Then, on Wednesday, we headed down to the main campus of OU Children’s Hospital near downtown Oklahoma City.  We have been seeing our Endocrinologist at his satellite clinic at Mercy Hospital, so this was our first trip to the Physician’s building.  Again, so impressed!  Our first stop was on the 9^th floor with the Gastroenterologist.  He spent plenty of time with us learning about Finn and our family and out history.  He asked a ton of questions, and carefully listened to our answers.  He decided we are in a “wait and see” phase of Finn’s life.  He definitely needs to increase his weight, but he did not seem as concerned about it as we were a few weeks ago.  Finn had gained some weight since that last visit with the Endocrinologist, but he is still very underweight, and not staying on his growth curve.  So, after determining there is nothing medical presenting itself at this time, the plan is to fatten him up.  We got to meet with his nutritionist and she gave us some tips and pointers to get him gaining.  And a list of foods for him to eat.  Basically, anything high calorie and fattening.  All the things Britt and I have been fighting hard to avoid! LOL!  She encouraged us to slather everything Finn eats in butter or oil.  Dip everything in sauces.  And to supplement with calorie dense milk replacements. Our trip to the grocery store this weekend was interesting!  But, is adjusting to the change pretty well.  As a family, we have some bad habits to break (letting him graze is a no no!), but we will work on that after school gets out.  He is definitely eating more, and he loves his new fatty diet! LOL!  Another chore: keeping the 3 bigs out of “Finn’s Snacks!”

After our visit to the 9^th floor, we headed down to the 4^th floor to the Endocrinology clinic.  Today, we weren’t actually seeing the doctor, but his RN who would teach us how to inject the daily growth hormones with Finn.  We were escorted  a conference room where we were educated.  We learned about the drugs, about the process, and what to expect.  Finn had a bit of a meltdown while we were going through all of this, but it was very to him and he had already been a long morning!  We came to the clinic with a backpack full of supplies.  We had a large black backpack, a big blue cooler pack, a box with a special container for the pen, a box of alcohol swabs, a box of  tiny needles, a sharps container, and a box with the pre-filled pen full of hormones.  This came in two shipments late last week.  One box was bigger than Finn!  And we had no idea what to do with any of it!  But, we got excellent training!  She taught us about all the pieces, and we got to practice administering the shots on this special sponge.  Finn loved helping us and counting to seven as we held the pen while the medicine was administered.  The, we went across the hall to all wash our hands, and it was Finn’s turn!  He was having NOTHING of it! LOL!  But, we made it through that first short.    Not going to lie, that next night at home as we did it on our own, we were a bit nervous.  We talked each other through it, and made it work! One down!  We did it!  WHEW

 

Here we are several nights later.  While he doesn’t like it, he is doing OK.  We made ourselves an injection site chart so we can keep rotating the place where we inject him.  We have a system for storage of all our goodies.  And we have a set time and location to do this.  Last night was definitely the worst night.  I don’t know why it seemed to hurt more, but it did.  Overall, we are very proud of him.  He likes to help us get everything prepared, and even through the tears he counts to seven with us!  And after it’s all over, he gets to push the easy button.  We have the first few nights down – and about 4,000 more to go!  If the therapy works, he will have to continue it through puberty.  Seems daunting, but I know it will be worth it.

I also have to mention how GREAT his siblings are being about this!  Every night, it has been a family affair.  We all wash our hands, we all sit together and each person has a role in preparing and administering the shots.  Britt has the hard job – holding the Finnster still! The big kids help get the supplies together, throw away the trash, and put the needle (it has a cover!) in the sharps container and bring over the Easy Button for Finn to push.  They help us encourage Finn and help comfort him, too.  This is a HUGE change for all of us, but we are in it together!

Thank you for your continued prayers and support.  Our insurance has denied the coverage for the injections, but there are several appeals steps to go through.  In the meantime, we will continue the injections, and if the insurance choses to never support this therapy, there are foundations that will help cover the cost.  For now, we are living on faith that they will see how beneficial this therapy is for Finn and acknowledge his diagnosis of SGA and Short Stature.  We ask for prayers of provision for that process, then of course for our family as we continue this journey.

Stretching and Growing

Where have the last 4 months gone?  This family of six has been moving along at break neck speed – as usual.  And while some days it is all a bit of a blur, we wouldn’t have it any other way!  We love it! We are blessed to have the life we live, and each of our children is a gift.  We love being able to do things for them and with them.  We are all learning and growing every day!  The main point of today’s entry is to update Finn’s health status.  But I would be remiss if I didn’t recap the big events in the last few months…

JAKE:  Jake turned 8 at the end of January.  In the chaos, we weren’t able to have his birthday party until a few weeks after the actual day, but he had a GREAT time with his buddies at Stillwater SpaceWalk – an indoor inflatables facility.  He played basketball with Upward (Go Commodores!) in the early part of the year, then we transitioned in spring to SASA baseball (I Ride With the Stampede!).  His baseball team just won the silver bracket of their first tournament of the year last weekend – what a trip!  We head out to another tournament this coming weekend, and have league games every week. He is loving second grade and is an excellent student!  He recently became a patient with our favorite orthodontist! We’ve got a bad habit to break… He can finally ride his 2 wheeled bike! At 8 years old, he stands 5 feet tall and weighs 100 pounds – definitely the biggest of all his friends.  He is our gentle giant.

Lara: Since that last ER visit, we have worked very hard to manage her asthma and allergies.  Her braces have really started to move her teeth and change the look of her face.  We are excited for the next year for her!  She has dance classes 2 nights a week, and truly loves it.  Her studio is awesome, she has great teachers, and wonderful dance friends.  Recital is coming up in a couple of weeks, so she is working extra hard to polish her dances!  We had pictures a couple of weeks ago and can’t wait to see it all up on stage soon!  Lara also spread her wings and tried out for junior high cheerleader.  Even though she didn’t make the team, we are so proud of her for stretching outside her comfort zone!  She is a very good student and she is sad to see middle school coming to an end.  You can find her either dancing through life or reading a book.

Emma: Emma is our studious student.  She has maintained straight A’s all year, and hates to miss school for any reason.  She also tried out for the track team this spring, but missed it by just a bit.  Even while she was sick, she jumped almost 11 feet in the long jump!  She also spent some time with the orthodontist, but we aren’t putting her braces on just yet.  Her newest hobby is rodeo.  Yes, we’ve got a cowgirl on our hands!  She has joined a Junior Ranch Rodeo Association team and is competing in their circuit this year.  She has had 2 events so far and is learning so much each time – even how to fall gracefully.  She loves her horses and everything cowgirl.

Twisters: They will be teenagers in 11 days. Both girls are adapting to their father living in town near us.  They definitely get to see him more, but sometimes it is a challenge to meet everyone’s expectations.  It’s definitely an adjustment!  After struggling with mono in February and March, both girls were in their middle school production of High School Musical Jr 2 in March.  They had a great time, and it was a WONDERFUL show.  It is an experience they won’t ever forget!  Just this past Friday night, we celebrated their 13^th birthday (early since this is such a busy time of year) with a formal dinner and charm school event at their Aunt Paula’s house.  It was an EXCELLENT event and while they learned some etiquette, they made amazing memories.  Be looking for more on that soon… I can't believe they are off to the junior high school soon!

Britt & Betsey: Busy as ever!  Britt recently got a new “office” and new responsibilities at his day job with student health services.  He still does all his original tasks, but now has some new ones, too.  And he no longer has to sit at the front window.  Betsey is still working ¾ time with dining services, doing all things digital.  Getting home at 2:30 in the afternoons sure is good for the soul when meeting all the kids as the come home!  But the best part of both our days is ********!  Not only have the products helped us lose over 130 pounds between us, given us more energy, and helped us feel GREAT, but working the business side has afforded us more financial freedom.  Orthodontists are expensive!  But the best part of our job is helping others!  We are so lucky that we get to help other people get healthy, and improve their finances, too.  Lives are being changed.  Ours, but most importantly our friend’s and family’s lives.  Since January we have earned the Silver leadership level, been invited to attend and were trained at the first ever Leadership U class, and attended Leadership School for the up and coming leaders in the company.  We are looking forward to Success School in August – and earning another pin level before we go!  There are so many people out there still looking for what we have.  We want to share it with them!

And sweet Finn.  He is so cute.  We hear it all the time.  But he is also stubborn, strong willed, defiant, a bit on the aggressive side, and needs anger management lessons.  He is the epitome of a “threenager.”  And while almost all of his “Preemie Problems” have been dealt with, we’re now dealing with a genetic issue – more on that in a bit.  So, over the last 4 months, we’ve seen his pediatrician several times, his lung doctor 3x, his eye doctor, the dentist (still not a fan, but we did better this time and she got to observe his severe under bite), his ENT, and his endocrinologist.  Next week we see the audiologist, his new specialist the gastroenterology doctor, and the endo doctor again.  WHEW!  Over all, he is very healthy.  We are still monitoring the ear tubes he got last year, and due to his ear issues he has still not completely passed the hearing panel yet.  Hopefully this week!  He is talking up a storm and has a huge vocabulary, so we’re not really worried about his hearing but want to keep his ears healthy! 

But his issues lie in his height and weight.  He is still way too tiny for his age, and especially his genetics.  Remember the 5 foot tall 8 year old I mentioned earlier?  His doctor thinks this is not preemie related.  So, after a year of observation from the endocrinologist, he has recommended growth hormones for Finn.  Based on his diagnosis of “Small for Gestational Age” (SGA) at birth – meaning even for a 26 week gestation micro preemie – he was smaller than average, his slow progress over the last 12 months, and his current location on the growth and weight charts, it is time for intervention.  This revelation has been a hard pill to swallow.  While there is no “medical” ramifications of small stature, the social and emotional consequences can take a toll.  And if we can help him avoid some of that, we feel we should.  But, that also brings us to another specialist.  While he grew 2 inches in 6 months, he lost 2 pounds.  The hormone therapy will help his bones and muscles grow, but he needs body fat.  So, the GI will run tests to make sure he is absorbing nutrients properly, and we will meet with a nutritionist as well.  He is a very picky eater, and he is a grazer. He eats small amounts of food – all day long! 

All that to say, we have lots to learn.  And my stubborn boy has lots of obstacles to overcome.  We go to the pediatric gastrointestinal doctor first thing Wednesday morning at OU Children’s Hospital.  This is our first visit with him, and we hope to get some answers and a plan of action from him.  Immediately following that appointment, we go back to his pediatric endocrinologist at OU Children’s to learn how to inject the growth hormone.  Fed Ex delivered it Friday.  So, here we go….. It’s all happening so fast…

Please pray for us.  For Finn – I have to hold him down to inject the meds; it takes 6 seconds to deliver the medication.  That’s a long time for a 3 year old getting a shot.  For Britt and I – it’s never easy to make the decisions, let alone carry out the treatments to get desired results.  For his siblings.  It seems there have been so many time over the last 4 years where the focus was so much on Finn.  I don’t want them to get lost in all this.  And for our business.  This treatment is not cheap.  God gave us this vehicle so we could care for our children.  It is now our job to steward it, and grow it, so we can keep our babies healthy and provided for.  And as always, for discernment.  God’s will be done.

Good News!

Finally!

After WEEKS and weeks of trying to get in touch with our endocrinologist to find out answers about Finn's growth testing- which resulted in missed phone calls, incomplete messages, partial information, worry, questions, patience and endurance - WE HAVE ANSWERS!

Over the past few weeks, We had gotten calls from our endocrinologist, but I either missed the calls completely, was too busy to answer, or knew if I answered all he would be able to hear was the chaos of my full house in the afternoons - and that wouldn't help either of us!  We wanted to know shot Finn, but we couldn't connect!

Today, we made an appointment for Big Brother Jake to see our pediatrician here in town due to a cough and a sore throat - before Mom and Dad leave town for the weekend!  He's OK - might have a sinus infection, but nothing major.  But, as we were finishing up the appointment, our Doctor asked if we had ever gotten news on Finn's tests.  "NO!" we called out in unison.  Then she said that SHE GOT THE FULL REPORT!  *The full report!*  YIPPEE!

I am so happy to report after the testing from October - we have a bit more information.  As you recall, the one big missing piece for us was any information about the bone age test and results.  If his bone age was younger than his chronological age, then we were probably in the clear and just needed to let time take it's course and let him grow.  If the bine age was pretty close to his actual age, then we might want to start being more aggressive.  And if the bone age was older, well, who knows...  We did event want to go there!  We also hadn't gotten much information about the blood tests.  Through the Mercy portal, we were able to SEE the results, but we're not doctors, so we don't know what they mean... But, all of his blood markers were within normal ranges.  Except one, but it was not worrisome.  We knew all of this from the Internet information, and that had been confirmed in phone messages, and again today with our pediatrician.

And his bones?  They are baby bones!  Young, still developing, lots of growing still to do, baby bones! She reported that the findings of his bone age showed they were at 2 years and 4 months!  Chronologically, at the time of the test, he was 3 years and 1 month.  Even if you take off the 3 months of prematurity, that puts him at 2 years 10 months - still significantly ahead of his Bone Age! THIS IS EXCELLENT NEWS!

So, the plan is to stay the course.  Keep the appointment that is now just under 5 months away.  Let him GROW. Let him develop.  Watch him SOAR!

Finn - 2014 School Picture

#FourthKid

If you are around me much and you listen to me tell stories about our Finicky Finn, you'll often hear me sigh and somehow throw in the words "hashtag fourth kid." He is my a-typical child.  My enigma.  My little mystery.  He doesn't do things the way any of his older siblings did - he eats differently, sleeps differently, receives discipline differently.  He is feisty, and fearless, and ferocious.  He is strong, and smart, and steadfast.  And he does it all in his own time and in his own way.  Always has.

We've spent the last few weeks waiting on test results from the X-rays and labs he did with the endocrinologist.  And doing the usual Dream Weaver things - running club, haircuts, dance, sports injuries, rehearsals, basketball evaluations, March for Babies committee meetings, building dreams, WORK!  Earlier last week, we received a call from the endocrinologist.  Unfortunately, we missed the call, and have been playing phone tag ever since.  While we have no official word about results, we feel that since they aren't working too hard to get us on the phone, we must be in the clear and just waiting for our 6 month follow up.  I'll call AGAIN tomorrow... Mixed in with all of that was a visit for Mr. Finn to his audiologist at Hearts for Hearing.  We had cancelled the last appointment for various reasons, so it had been over 6 months since our last visit.  The good news is, he is finally a BIG BOY and can do the tests in a big boy way!  Gives them a better idea of what he really is hearing and how he is reacting.  Honestly, it was pretty cool to watch him do all the tests!  He is so smart!  But, the less than stellar news was that the ear without the tube (which fell out early this year), had definite hearing loss. *sigh*



I left there feeling frustrated,  Here we are again.  In the last 2 months we had seen the ENT, the pediatrician, his ears had been checked at school, and now the audiologist.  The story from each was never quite the same - which is slightly understandable since time was passing and the ear was changing all along.  We heard tubes, no tubes, wait, and act now.  After much discussion, we agreed to go back to the ENT - he is the medical expert in this area.  He will help us formulate a plan of action.

Parenting 4 kids is a challenge.  They are all very different.  Navigating their needs and wants; encouraging their dreams and abilities. Spending quality time in this roller coaster existence.  And add to that one who has need for more medical interventions and attention.  Its overwhelming some days.  A lot of days.  How much is too much?  How much is not enough?  When should I intervene? When should I wait?  The struggle is real.  And I feel for parents who have to make much tougher medical decisions than I do.  I know I have it pretty easy in the grand scheme of things...  But, it's my life and my family that have to deal with this particular situation.  And we see how the stress and strain effects our environment. Yes, I want Finn to hear properly, but he has made such huge strides in 3 months with language!  Is it necessary to put him under - AGAIN?  Plus, last time we talked replacing the tube there was talk of removing the tonsils and adenoids... Will that help his sleep?  And maybe his eating?  All of these nagging questions pulling tag this Momma's heart - all the while I'm trying to stretch it to include the other 3 kids, and my ever-patient husband. Whom I keep looking at with pleading eyes, asking, "What next?"

He's so lucky to have GREAT older siblings in Emma, Jake and Lara!

That appointment with our ENT was today. We covered the entire Finn health history again. Brought our doctor up to speed on the latest developments.  Examined Finn.  And then were presented with solutions.  It was recommended that we replace the missing tube, clean up (and replace if necessary) the existing tube, and to leave the tonsils and adenoids alone - for now. We all agreed this was the best plan of action for our Fighter, Finn.

His surgery is Thursday.  As in, not tomorrow, or the next day, but the next day.  First thing in the morning.  We covet your prayers once again.  He's older now.  And more fretful.  While I am not anxious at all about the procedure, the recovery may be a bit more eventful than the last time.  We truly hope and pray this brings him relief, normal hearing, and a LONG stay away from hospitals, surgeries, and doctor's appointments!  Our sweet boy - always a fighter.  And always doing it his own way. #FourthKid



#FourthKid Finn

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.

Party of Six

How in the world has an entire month gone by without an update from the Dream Weavers?  Oh… Yeah… Six people make for a VERY busy life under one roof!  Let’s see…  Professional development classes for me, dance for Lara, basketball season came to an apex and (an undefeated) close for Jake, various family members went to the dentist, Britt and Betsey started Stillwater March for Babies committee meetings (mark your calendar for Saturday, September 20), Britt started working a night job at the print shop for Eskimo Joe’s Promotional Products Group, we attended an NBA Thunder game as a family, survived snow storms and snow days (which will have to be made up), Emma and Lara went to a middle school dance, various birthday parties and sleepovers for the big kids, signing Emma up for spring volleyball, Alpha Delta Pi meetings and events for me, Finn is two (and all that entails), and yesterday it was 78 degrees outside and tonight baseball practice starts for Jake.  WHEW!  What’d I miss?  LOTS I am sure.  I am so thankful for my fun, busy, crazy family; but it is kind of overwhelming to look back over a month and see all that has happened!

I feel like we are falling into a routine with the new work schedules.  It is still crazy for me to get out the door and be ta work by 7:30, but I am making it every day.  I sure like getting off at 2:00!  Gives me a minute to breathe!  To run errands, be creative and work on Dream Weaver Prints business, and to be there for my kids when they get home from school.  Even if I’m not armed and ready with gourmet snacks and fresh squeezed lemonade, I am THERE!  We do chores, laundry, watch TV, whatever until it’s time to start dinner.  Which is early!  With Britt working nights, he gets home from his day job about 5:15, and needs to leave for his night job at 5:40.  That’s 30 minutes to eat, change, and love on him!  So, we start dinner about 4:00 these days!  Emma and Lara are ESSENTIAL in this process!  They are either helping me prep food, or helping keep Finn out of the kitchen!  We have tried lots of fun recipes and have generally enjoyed working as a family to make sure Daddy has a good dinner before he takes off to work hard for our family.  It may not be what we ever wanted, but we are making the most of it!

As for Finn and what’s up in his unique little preemie world…  We decided a couple of weeks ago that he was not progressing as we wanted him too.  Yes, SoonerStart (early intervention) comes once a month or so to evaluate him, and they think he’s doing “fine,” but there are just so many things we WASN’T doing!  Like, I don’t know… EATING!  We had been told to encourage him, and to introduce new textures, and the list goes on.  Nothing was working.  And he was just too skinny in our opinions.  Add to that, he isolates himself at school and doesn’t participate, won’t talk to his teachers, and has some other peculiar social traits.  We decided it was time to get a professional opinion.  Off to the pediatrician we went!  We left there knowing he has not gained a single ounce in 4 months, but had grown taller, with a prescription for an appetite stimulant, a referral to an endocrinologist, and a referral to an occupational therapist.  And a smile on our faces 3 miles wide knowing we were getting help for our little man who we were tired of watching struggle.

We started the appetite stimulant last Tuesday morning.  He takes it twice a day with food.  So, we give it to him at 7:00am after his “breakfast” Pedia Sure and at 2:30-ish after his “afternoon snack” Pedia Sure.  The drug fact sheet stated that “you might notice an increased appetite after prolonged use.”  If by prolonged use, you mean one dose, then YES!  Yes, it does increase appetite!  He has been eating more food in the past week than he did in the past 6 months combined!  More volume, more variations, better foods (not just Goldfish crackers and pudding), more frequency!  His cute little belly just sticks out all the time now!  We are so happy it is working so well for him!  And the even bigger bonus, it has COMPLETELY changed his attitude and demeanor!  Finn has always been a sweet boy, but he was often grumpy and inconsolable, and hard to get him to participate in anything.  Now, he is happier, more involved and engaged, and sleeping better.  He’s also a bit more ornery, but we’ll take it!  In one short week, he has become a completely different child.  It makes us wonder if he was just hungry all along but didn’t know how to fix it.  Or his blood sugar levels were all over the place due to lack of nutrition…  Poor guy!  We’re just happy to see him doing SO MUCH better!

Today we start another adventure with him.  He has his first evaluation with an Occupational Therapist here in town.  We are hoping to help him learn the skills and confidence to do things more independently.  With Mommy, Daddy, 3 older siblings, and Nana the Wonder Sitter, it’s no wonder he doesn’t want to be self-sufficient!  We hope to just help him learn what he needs to be more in par with his peers.  And of course, a bit selfishly perhaps, we want him to be less clingy and needy.  We know part of that is being 2, but having raised 3 other 2 year olds, and knowing how incredible smart he is (sometime I’ll tell you about his puzzle skills), I know he is capable of so much more!  I just can’t wait to see him thrive! 

The break between updates will not be as long next time.  I hope the Occupational Therapy takes off like the appetite stimulant did, and we see fast results!  We’re still waiting on the referral for the endocrinologist, too.  My prayer is that in 6 months, we will look back on this and know we did the right thing and will be able to see marked improvement in our awesome preemie!  He has always been the kind that needed an extra push!  Always a fighter, our Finicky Finn!