Thursday, December 31, 2015

One Word: 2016

As 2015 has only a few short hours until it comes to a crashing close, it's time to reflect on the year that's passed, and dream about the year that starts so very soon.  A new chapter in your book.  365 blank pages to fill in any way you can imagine!  Part of my ritual for the past few years  as the New Year rolls around is to spend some time finding one word to focus on.  One word that will be the theme for my year.  What my goals and dreams are anchored on.  I really enjoy the process of finding my word.  I think about what's happened the past year and what I want to see happen in the next.  I think about areas where I need guidance and focus.  And I earnestly pray for God to lead me to my word.  The one word He wants me to meditate on for the next year.  The word God has just for me to stretch me and test me throughout the year.

For 2014, my word was Brave.  I had just ventured out in a new business and I had to learn to talk to people in a way that made them believe in me.  That was a stretch.  In 2015, my word was Joyful.  I felt led to find the JOY in every minute, and to not sweat the small stuff so much.  I had found myself frustrated and stressed by being a parent and the messiness of it all, instead of loving the fleeting moments that all too soon will leave my house spotless, quiet, and EMPTY.  The verse I focused on last year to accompany this new attitude for me was Romans 12:12 "Be joyful in hope."  I wasn't perfect by any means, but when I asked my husband and kids if I had been more joyful this year, they all agreed I had been.  I feel like I succeeded in focusing on  that one concept and improving my daily outlook.

 
 
That brings us to today.  One the Eve of a new year - 2016.  I have been thinking about my word for a few weeks.  Usually it's just a few days.  As I mentioned in an earlier blog post, the winds of change are blowing HARD at the Weavers house this year, and I wanted to be intentional with my word.  I wanted it to be something I could not only focus on, but lean in to.  Learn, stretch, GROW.  And even lead, teach and inspire!  So, after much prayer, talk with my husband and friends, and thinking long and hard about what this word means to me, I am ready to dive in to 2016 with my focus on being GREATER.
 



I'm not 100% sure what exactly is going to be GREATER.  I know some things in my life will increase.  That's greater.  I want to work hard at being a greater wife, a greater mom, and a greater follower of Christ.  I want my faith to increase.  I am confident 2016 as a year will be greater than 2015.  Our family is on an upward trajectory over the past 4 years and I don't see that slowing down.  But, God's plan for my year might be completely different than mine.  What he wants me to be Greater at may be vastly opposed to what I want to be greater at.  My verse for this year is John 3:30 "He must become greater; I must become less."  I am putting my faith in God for this year.  I can't wait to see what He unfolds before me and my family.

 

If you would like to find your One Word for 2016, I would love to help you!  I can tell you more about how I come to mine each year, I can pray with you, or I can throw words at you until one of them sticks!  LOL  Or, the best way is to just reflect and pray and let God lead you to it.  There is a You Version Bible reading plan designed to help you find your One Word as well.  I have included a link to it here.  Just click, and get started on your journey for 2016.

Tuesday, December 22, 2015

Treat Every Day Like Chirstmas

It's Christmas time.  And right after that the New Year.  That means its time for reflection, new horizons, goals and dreams.  At the Weaver house, the winds of change are blowing pretty hard this season.  And we're looking forward to a NEW 2016 and all the change that it brings.  But today, I am reflecting on days gone by.  Memories of the people and places and things that made me who I am today and remind me of what Christmas means to me.

Take a look at this Christmas Card picture from our family in 2011.


What do you see?  Christmas greetings.  Adorable kids.  Fun photography.  A tiny baby fighting for life. Cute owl graphics.  Snow, ornaments, family names. A sweet card sent out with love and care to share with family and loved ones the blessings of the season.

Do you know what I see?  Something missing.  Each image shows me a memory, and a piece that's missing.  My sweet friend Gabi made this card for us.  She used those same owls on a sign that hung in our home, and then in my temporary hospital home that year to help keep me focused on a healthy baby.  She used them on a website that helped raise funds for our tremendous medical bills.  And she used them here to convey the hope and future of our family.  Lives get busy, and I don't see her as much as I used to.  I miss that... That bottom picture of the feet is missing somethings, too.  Our talented friend Beth took that picture on a HOT July day in Oklahoma just after we discovered we were having our fourth baby, and this was our Big Reveal image to share with everyone.  This was in the days shortly after we had lost my big brother.  (FYI - standing like that and getting that shot was INCREDIBLY difficult and sweaty - Jake was 4 and the girls were 9: wiggly). Beth has moved on to Texas and is raising her own family now.  We miss her.  This image shows the hope we had for the pregnancy - which was dramatically cut short.  I miss the expectation we had for a more normal gestation and infancy. (Don't get me wrong, so blessed by what we got instead, but I mourn the loss of a dream.) I miss being a family of 5.  It was different; Finn changed everything. For the better, of course, but a definite divergence from where we were going. And my brother Brian.  He wasn't here all the fun.  4th niece/nephew. NICU days. All the holidays, birthdays, milestones and moments from the last 4 years and 9 months.  He missed it all.  And I miss him. He should have been here for that picture, and all that came after it.

And up to the top 2 images.  So much missing.  How hard for those 3 little faces to have to deal with a family torn apart by 70 miles, illness, surgeries, stress and separation for a total of 5 months start to finish.  They were SO BLESSED by all kinds of surrogates to stand in our stead as I fought for 2 lives, Britt tried to be in two places and once and all things to several people, and then as Finn started his journey into this world.  But Emma, Lara and Jake were missing things, too.  Normalcy.  Mommy. Daddy. A brother they were only allowed to see through glass and touch with one finger for the longest time. A baby that didn't get to come home for Christmas. They weathered that storm so well.  Built resilience.  Taught them many tough life lessons.  They are stronger for it.  I miss those tiny faces and those effortless smiles.

And my sweet, sweet tiny miracle baby boy Finn.  He brought joy to our world.  And pain, and stress, and lessons, and LOVE.  So much love. From every corner of our universe.  So many people were touched by his presence, prayed for his life, and loved him without even knowing him.  He spent that Christmas in the NICU.  Santa came to see him there.  We had a Christmas lunch in the car consisting of Lunchables and Capri Sun after we had opened presents at home just so we could see him and hold him that day.  He was missing in our home that morning.  And for the entire 3 months he spent in the hospital.  He was missing from that sunny day picture at the top of the card.  And his siblings are missing from this picture of him.  So much separation!  But so much to be thankful for!  

2011 - NICU
2015 - Santa's Workshop


Little Dream Weavers - 2015
Emma (13), Jake (8), Finn (4), Lara (13)


As we get older and the kids get busier, we realize that the pictures of all 4 kids in one place at one time are going to get fewer and further between.  But we always have the memories.  The blessings. The lessons that made us who we are.  Somethings may be missing, but nothing is missed.  Every detail to our story has been written by the best Storyteller there ever was.  We celebrate His birth and what he did for our world this Christmas season, and EVERY Christmas season.  Thank you God, for sending your son, Jesus, to be our Savior.  And thank you for being a better Writer of my story than I could ever imagine.

Merry Christmas






Wednesday, December 16, 2015

Year in Review: 2015 Six Dream Weavers

Merry Christmas and Happy New year from our home to yours!  2015 found the Weavers with seasons of growth and challenge, as well as adventure and celebration!  We watched tweens become teenagers, a little boy become at tween, and a toddler turn into a little boy.  We moved, found new passions, and bought a new (to us) car.  There is never a dull moment with a house as full as ours, and we wouldn’t have it any other way!  We look forward to wrapping up these last few days of 2015 as a family, and diving into new escapades in 2016.  

THE GIRLS

Emma and Lara turned 13 and started the 8th grade in 2015.  They also saw their biological dad remarry (again) and move closer to them that he has been in the last 12 years since our divorce.  All of that brought many changes, adjustments, and fine tuning along the way!   Through all of this, Emma has emerged with a new found love: horses!  She has always been my animal girl – especially puppies and dogs – but her step-mom is a horse girl and introduced Emma to their care and nurture, and also to rodeo.  Emma participated in several JRRA (Junior ranch Rodeo Association) rodeos throughout the year and finished her first season last month at the Finals in Pawhuska.  Along with her regular classes, an advanced Algebra class and an advanced history class, she is also in her first year of Agricultural Education classes and FFA membership at school, and all of this experience and knowledge is helping her learn more about her hoped career path of becoming a veterinarian.  Lara, on the other hand, is our “inside” girl!  She is still dancing every chance she gets.  5 hours of classes on 2 nights each week at Encore! keeps her busy!  She is taking a pointe class, as well as classical ballet, lyrical ballet, and a jazz class.  To accompany her regular class load and her advanced English class, she went out on a limb and tried new things this semester to be more involved at her school.  She tried out for winter guard (competition color guard) in November and was thrilled to be chosen to join the Cadet team!  She is very excited about this new adventure and all the new things she is going to learn about spinning and competition teams.  

THE BOYS

Jake turned 8 at the first of the year, and is currently 5’1” and weighs about 112 pounds.  He is a giant among his peers, but he is our sweet, kind hearted little boy.  He is a sports and video game fanatic!  He played on a competitive baseball team in the spring and summer (Stampede:  first base, third base, pitcher), his first tackle football team this fall (Cowboys: D-line, O-line, Dedicated deep snapper), and is currently honing his basketball skills with his teammates (Haymakers: big guy inside).  If he’s not playing, practicing, or conditioning, he’s watching sports on TV or playing video versions on his game system.  He spouts off stats like they are spelling words and has big dreams.  He is in the 3rd grade and is an excellent reader, a spelling champ, and a math wiz.  He loves lunch, recess, and science (in that order).  His teachers rely on him to be their helper, and we couldn’t be more proud of the friend he is to others.  And then there is our Finicky, Feisty, Fighter boy, Finn!  He too has had quite the year!  Still attending pre-school at the Methodist church and giving everyone a run for their money.  As usual, he has spent a lot of time in doctors’ offices this year.  We have graduated from Hearts for Hearing (he finally passed all his hearing screenings!), and only have to see his pulmonologist as needed instead of routinely.  Plus, his pediatric ophthalmologist doesn’t want to see him till he’s 6!  The ENT has cleared him as well unless he has issues.  But with the highs come some challenges as well.  Early in the year, we were diagnosed by his endocrinologist with Idiopathic (no specific cause) Short Stature (ISS).  He was born with the diagnosis of “Small for Gestational Age” (SGA), then coupling that with the ISS, we were tested for deficiencies and then started Growth Hormone Therapy.  He has been on nightly injections for about 6 months now and we are happy to report approximately 5 inches in growth!  So ecstatic for him!  Not only has he grown taller, but his overall health is better, he is hitting more milestones on time, and his overall outlook and demeanor are better.  His HAIR grew back in from all the bald spots from his twirling habit, and he needs new (bigger ) clothes.  We are still battling eating and weight gain issues, but go back in February to work on those some more with his gastroenterologist.  Apart from his medical things, Finn spent the summer taking private swimming lessons to get over his fear of water.  We came a long way!  We hope it lasts till next summer.  He was also honored to be chosen as a featured preemie on the Mercy NICU wall of Hope and enjoyed being in the spotlight a little it for that fun unveiling event.  We love that his face and story can bring hope and a light to others traveling through their NICU journey.

THE PARENTS

Britt and I are both still working at Oklahoma State University.   He celebrated his 10th year with University Health Services this past fall, and I just marked my 2 year anniversary with University Dining Services.  Being on a thriving and diverse college campus keeps us young and in the know, and we really like it.  We are also enjoying watching our ******** business grow!  He has lost 95 pounds, I have lost 45, and we have grown a thriving business along the way.  It is truly a blessing to help others be healthier, as well as show them how to have freedom from financial debt and time burdens.  We have great visions for 2016 and what it can do for those around us!  We want everyone to have the health and freedoms we are enjoying!  We are loving raising our family, keeping busy, and growing and changing every day.  Our latest BIG change is the used car we recently purchased.  Shortly after we got married (9 years and 11 months ago), we bought our minivan.  It was a year old at the time, a 2005 white Chevrolet Uplander that we affectionately named “Derek” – as in Derek Zoolander (after the Ben Stiller movie of the same name).  At some point in our young marriage, we bought a blue 1996 VW Cabrio from my brother, and named it “Otto” – a nice German name for a nice German Auto (don’tcha think?).  When Finn came along, Otto was sold and we bought a much BIGGER vehicle.  A blue 1997 Ford Expedition that our then 5 year old aptly named “Rip” due to a small tear in the headliner that he noticed as we drive it home.  We just recently traded the van for a timberline green 2009 Nissan Armada.  Naming this behemoth (seating for 8!) has been a challenge, and his name has changed a few times these past weeks.  We have officially branded it “Hiro.”  As in Hiro Armada.  After our favorite animated character from 2015 Hiro Hamada (and Baymax) from the blockbuster movie Big Hero 6!  Fitting, I would say!

Hiro Armada


So, here comes 2016!  We hope to start it with a BANG and never look back.  We have big hopes and even bigger dreams for the coming year.  It is a good time to be one of the Six Dream Weavers, and we can’t wait to see what God has in store for us!

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!

Monday, October 26, 2015

My Town - Stillwater

HoCo 2015 - pomp sample
My son, Jake, is 8 years old.  His football team is 7-0 and hopes to be playoff bound next week.  He made a 103% on his last spelling test.  His biggest concerns are figuring out how to get us to agree to let him wear shorts even when it’s 45 degrees outside and who is bringing the football to recess.  Saturday, October 24, 2015 will be a day etched in his memory for the rest of his life.  He is at the age where he will remember.  He will recall where he was when he heard.  The weather, the time of day, the circumstances.  The emotions, the words, the cries and anguish.  The news reports, the tears of his parents, the stories from friends.  ALL OF IT.  Seared on his young, impressionable memory.  This day, his life, as well as the lives of HUNDREDS of others, has forever been altered.

Jake - age 8. 10.24.15

The first national tragedy of epic proportions that I remember was the Challenger Shuttle launch explosion from January 28, 1986.  I was in 5th grade.  Mrs. White’s class at Wilkinson Elementary School in Sarasota, Florida (this was during the Ricker family’s “4 year vacation” away from Stillwater).  A friend and I had been sent from our classroom at the front of the school, around back to the art room to return some supplies.  It was a BRIGHT, cloudless January morning.  My friend and I took the “long” route – outside – to accomplish this chore, as fifth grade girls will do!  We were talking about the launch on the way back, and looked to the sky to see if we could see anything.  We saw what we thought was the smoke trails from the booster engines.  It wasn’t until we wandered our way back to the classroom that we discovered what had dreadfully happened!  The rest of the day was spent watching news coverage, crying, wondering why.  Our innocence was shattered.  I will never forget.

My family has been a part of Stillwater and Payne Country history since the very start.  My ancestors had the first general store, the first gas station, and an early mayor is among my esteemed relatives.  I was born just a few miles up the highway in Perry, but my parents were Stillwater residents at the time.  I attended Skyline Elementary, Sangre Ridge Elementary, Stillwater Junior High School (where my twins are now) and Stillwater High School.  My 4  children will be 4th generation graduates of C.E. Donart/Stillwater High School.  Aside from a short time in Florida when I was a pre-teen, the 8 years in Dallas after college, and a year in Tulsa, I have spent the majority of my 40+ years living in this town.  Even when my address wasn’t in Stillwater, it was still my HOME and I visited often.   I have been to more Homecoming Walkaround and Sea of Orange Parade events than most of these current college kids have even been alive for!  I’ve been a participant, a coordinator, and a spectator of that parade more times than I can actually remember.  Homecoming is SACRED to my family and the parade was often the one time a year we could all get together and be a family as we all grew up and scattered across the nation.  Stillwater will always be HOME.  This is MY town!   “Where I was born, where I was raised. Where I keep all my yesterdays. Where I ran off 'cos I got mad, An' it came to blows with my old man. Where I came back to settle down, It's where they'll put me in the ground: This is my town.” (Thank you Montgomery Gentry for summing that up for me!  And no, I never came to blows with my old man, but I can recall a few times he would have liked to string me up…)



But for some reason, God has chosen this place I call sacred ground for some true tests of resiliency.  We’ve been here before.  This town has been brought to their knees many times.  Natural disasters.  A school shooting at the Junior High that we leaned was a horrific suicide.  And in the last dozen or so years, the OSU community has been shaken especially hard.  We were stunned by a plane crash in 2001 that killed 10 members of the Men’s Basketball family.  (I personally knew 2 members of that tragedy.)  Then, 10 years later, we were shocked again when 2 coaches and 2 others were killed in a plane crash while on a Women’s Basketball recruiting trip (I knew both of those coaches as well from my days in Athletics).   And now.  This.  Rocked to the core, AGAIN. Our beloved Homecoming parade marred by disaster.  Changed forever.  In a split second.   This unfathomable, inconceivable, horrible event.  I can’t call it an accident, I’m not sure it was.  But I do know what IS NOT an accident.  That it happened here.  In MY TOWN.

God said he would lead us beside StillWater(s).  And here we are.  Pulling together.  Holding each other up.  Praying.  Supporting – financially, physically, and emotionally.  Because that’s what MY TOWN does.  Better than most.  It’s the Oklahoma Standard.  And God showed us He did not forsake us in the midst of this heartbreak.  Even when it hurts, He is with us.  Even when we don’t understand WHY, He shows up in big ways.  He loves our souls, He heals our scars.  And to show that promise, He blanketed our whole state (and those that border us as well) with the most SPECTACULAR orange sunset I have ever seen.  He is BESIDE us.

Orange sky over Stillwater, OK 10.24.15


We knew several of the victims of this crash.  Some who died, some who are still in hospitals in critical condition, some who were treated and released, and some who just needed a bandage.  And a hug.  But most of all, we know STILLWATER.  We know this town from its roots.  And we know, we are ALL #StillwaterStrong.  The coming days, weeks, months will be hard.  My 8 year old will grow up a lot and learn some of life’s toughest lessons in the coming days.  And every year, when we go to the Sea of Orange Parade, we will be reminded.  Even though we won’t really need to be.  Because, we will REMEMBER.  That’s what we do.  In MY TOWN.

Some people call it the middle of nowhere; we call it the CENTER of our Universe.



#StillwaterStrong



Monday, May 11, 2015

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 9th 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 9th floor, we headed down to the 4th 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.

Sunday, May 3, 2015

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 13th 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.

Thursday, January 8, 2015

First ER visit of 2015

It’s already in the books.  Overall, an “A” experience.  We’ve been to the ER several times with a few different kids.  This was by far the best experience.  So thankful for that.  So, why were we there? Let me rewind a bit…

The last time we were in the ER with Lara was about 2.5 years ago – when she had her first real asthma attack.  Since then, we have had rescue inhalers everywhere and all the needed supplies for home breathing treatments on demand.  Yesterday when she woke up, she was struggling to breathe a little bit, so we did a treatment.  When I got home from work last night, she was feverish, coughing, sore throat, headache… very flu like, and it is going around like wildfire here.  We ventured down the street to the Urgent Care place, and promptly got diagnosed with the flu.  Filled the Tamiflu Rx, another breathing treatment, took the first pill and went to bed.

She got up about 6:45 this morning.  Struggling to breathe, unable to talk.  You could hear her lungs rattling, and a wheeze in her throat – very strange sound.  Told her to use the rescue inhaler, and do a breathing treatment.  Gave her the Tamiflu for this morning, and waited.  And watched her deteriorate some more.  It was quite obvious our home remedies were not working. Time for the ER.

Unfortunately, we are still down to one car for a few more days, so we have been carpooling and rearranging things on the fly to get people where they need to go.  I had already called in sick to my boss to stay home with her today, but now I needed the car to get her to the ER, but Britt still needed to go to work and Jake needed a ride to school (we only live 4 blocks from school, but it was 10 degrees outside.  TOO COLD!) Poor Lara had to wait while we all got dressed and ready – took Dad to work, dropped Jake at school, and were checking in to the ER at 7:35 (Nana the Wonder Sitter had Finn and Emma).

We were the only people in the waiting room – that was nice.  I hoped the wait wasn’t long. Soon after we got checked in, a handful of new patients started streaming in the front door.  Luckily, we had beat the rush!  We sat about 10 minutes in the lobby (Lara had to wear a mask because of her flu; she hated it) before getting called back to a room, but the charge nurse who brought us back recognized her severe distress and got a breathing treatment started immediately – so by 7:50 we were getting (more) albuterol and atrovent into her system.  They listened to her lungs and heard lots of cracking and rumbling.  Her oxygen saturations were good – staying at 99 and 100, but her heart rate was very high.  After some assessment questions and intake type stuff, we were seeing how the treatment worked and waiting to see the Doctor.  He came in about 20 minutes later, and he prescribed oral prednisone steroids, continued observation, and more breathing treatments. 

Soon, we got the 2nd breathing treatment – pure albuterol – started about 40 minutes after the first one.  It provided no relief what so ever. It was now about 8:45 am.  Her O2 was still good, heart rate was better but still high (possibly from meds, and stress…)  In fact, I thought this treatment made her worse (so did Lara).  She had this horrible grunting/wheezing sound coming from her throat.  I said it sounded like Darth Vadar was a 20 year smoker!  The doctor came in again and heard that same sound.  He listened to her lungs, and they sounded clear! YAY!  So, the steroids and previous breathing treatments had done their job.  But, he now decided her vocal cords were swollen, and that’s what was causing the noise and the difficult breathing.  New breathing treatment ordered, this time with racemic epinephrine (think Epi pen) to combat the swelling.  In the meantime, Lara was hungry, and shaky and not doing well at all.  It seemed pretty scary that she wasn’t getting any better.

The nurse came in with the new breathing treatment around 9:15.  3-4 minutes in, the noise had stopped! Lara’s color was better. Her eyes were brighter. She didn’t seem to be as distressed anymore!  SHE COULD TALK! This was huge – she hadn’t said a word all morning – just used some very bad sign language.  YIPPEE!  So, soon after the treatment was finished and the doctor assessed her again, we got the all clear.  They finished up our registration information, got our discharge paperwork ready, and we were out the door by 10:00! Kinda wish we could have gotten that one sooner!  But, all’s well that ends well.

After a quick trip through the McDonald’s driver thru (for her - she wanted pancakes), we got her home and back in bed.  Steroids and breathing treatments for the next few days.  And of course, she still had the flu!  So, we’re trying to fight that off as well!  The ER doctor said asthma and the flu DO NOT mix well.  That became painfully obvious to us today.  YUCK! Poor baby!  We know she won’t be back at school until at least Monday! 

That was a pretty scary ordeal.  I know some of you have done it, and I’ve seen it with 2 of my kids now, but it’s a harrowing feeling to look into your child’s face and see the panic and fear in their eyes when they feel like they can’t breathe and they are suffocating.  It was bad when Finn had RSV and was that way, but he’s a baby and his mind can’t really comprehend it all.  Lara, now – that’s totally different.  Scary.

Thank you for all the prayers, calls, texts, Facebook posts, etc.  She is sleeping soundly now.  I am trying to decompress.  And do some dishes.  And laundry. Oh – and I need to start dinner…. A mother’s work is never done…

Wednesday, January 7, 2015

Happy Anniversary - 9 years


NINE years ago today, we stood before God and a handful of family and close friends and said I DO! We were ALL IN and ready to start our lives together. After being a confirmed bachelor for 40 years, God had finally revealed to me my #2. My soul-mate. My BEST friend. My LOVE!
Not only had I been lucky enough to find my beautiful bride, I became instant dad to my 2 incredible 3yo twin daughters. We then added our amazing son, Jake and our MIRACLE son, Finn! Our family was now complete and we have set off on some amazing adventures!!
The past nine years have been full of AWESOME HIGHS and TERRIFYING LOWS. We've said hello and goodbye to special lives. All the while, standing side by side and barreling through it all. Eight months ago found us a one of those low times …. we were both extremely overweight and struggling financially … with no real motivation to do anything about it.
******** found us at that point and we dove in head first …. not expecting any real results but figuring, at that point, we had nothing to lose. To say it was difficult is an understatement …. but no one said it was going to be EASY ….. but boy has it been WORTH IT!! To date we've lost a combined total of 120+ pounds and have more energy than we've had in years!!
So …. here we are today!! Once again we are standing in front of a group of family and friends … this time 90,000+ strong …. Reaffirming that we are ***-**. Our passion for helping others is greater than ever and we love representing this amazing, Christian-based company.
Betsey – you are my rock. I can’t imagine a single day without you. There is no one on this earth that I’d rather be on this journey with! Thanks for putting up with my quirky habits and loving me unconditionally.
Happy Anniversary … I LOVE YOU!!
~Britt