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.

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.

One Way (Finn's Way)

Hard to believe it is March 5 – ALREADY!  And Finn is 17 months old.  WHAT?!?  But, February was a blur.  With him being sick, in the hospital, and a short month, it FLEW by.  So, yes, Finn is 17 months old.  He is standing on his own for 20-30 seconds, babbling up a storm, has 10 teeth (2 molars on the bottom!), eats everything he can (but yet we still have to supplement with PediaSure – he just doesn’t GAIN), and weighed in at 19 pounds 7 ounces – fully clothed with shoes (Tiny Toms! So cute!) – at the doctor yesterday.  He is a SUPER FAST crawler, and is in to EVERYTHING!  If you can’t find it, check the drawers and cabinets he has been opening – Nana found a missing toy that way, and I found a missing remote control!  (These items had been missing several WEEKS when they were finally found.)  He is still a complete joy and such a happy baby!  His shirt today says it ALL!    Even if the sheer number of doctor appointments has been a bit overwhelming these past few weeks! 

Finn - 17 months - MY WAY!

Britt and I were going through old pictures and videos on our phones over the weekend, and we watched a few videos from our time in the NICU at Mercy.  It still seems surreal – to both of us – that THAT was our lives for over 3 months, and that the tiny struggling baby in those films is OUR son.  It doesn’t seem real.  Or that it happened to us.  But, it was our Finn!  As strong and crazy as he is now, he started out so tiny and frail.  God’s work blows us away.  To HIM be the Glory!

In the meantime, Finn had his first evaluation with the pediatric pulmonologist (physician who specializes in treating diseases of the lungs) yesterday.  We were recommended to see one after our stay in the hospital, and this Doctor came HIGHLY recommended.  While we didn’t really learn much from the visit yesterday, we are glad we went.  They did a chest X-ray (I think this was probably the 20^th one he has had in 17 months), a full exam, and tried to do a sweat test.  This is a test where they stimulate muscles, then collect sweat to evaluate the chemical content in it.  Unfortunately after the (long) procedure, Finn didn’t sweat enough to test anything.  Traditionally, this test is used to check for Cystic Fibrosis, but we know Finn doesn’t have this disease.  So, we assume (no one told us) they do this test routinely just to see what the chemical make-up of the child’s sweat is.  I have another preemie mom friend whose son sees this same physician, and she said they did it with her son as well, and he does not have CF.  So, we were told there is residual evidence of the RSV in his lungs, and to come back in 6 weeks for a follow up and to attempt the sweat test again.  And for Finn to drink LOTS of water before he comes!

(CF sidebar: The girls' father does have CF.  He has a rarer mutation that only slightly effected his lungs, but the end result is what caused us to have to do IVF/ICSI to conceive Emma and Lara.  Before we went ahead with fertility treatments, I was tested to see if I was a carrier since he had the disease, and I am not.  (Both parents have to be carriers in order for the offspring to inherit the disease.)  Each girl has a 25% chance of being a carrier.)

TOMORROW, Finn gets his first HAIRCUT!  I’m sure I will cry.  My last baby’s first haircut.  WOW.  (Emma was over 2 before I cut hers (because she was bald before that), Lara was 11 months,  and Jake was 8 MONTHS at his first haircut!  He had SO MUCH hair!)  I can’t wait to share pictures!