Showing posts with label micro-preemie. Show all posts
Showing posts with label micro-preemie. Show all posts

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.

Wednesday, January 30, 2013

Thankful for Their Light



Early on Monday morning, Britt, Finn and I loaded up Derek (our Uplander) with all the things we would need for a baby for several hours away from home, some breakfast, and our excited selves.  We pointed the van towards I-35 southbound, and once again headed for Edmond.  Seems like we have been doing that trip a lot these days - but we love it and wouldn't trade it for the world!  This time, destination was Edmond North High School and the Huskies Senior Class!  We were going to be speaking to the Class of 2013 about March of Dimes NICU Family Support program being chosen as the BALTO (Bringing a Light To Others) gift recipient this year.  We just LOVE telling our story, and we would not be able to if not for the March of Dimes!  So, of course, we were fired up and willing to do so.

Each morning this week, they are having an assembly with one class form the school in order to let them know what is going on each day of BALTO week, what to expect, and to educate them a little bit about the charity they are raising money for.  Julie Leclercq is the March of Dimes NICU Family Support Specialist at Mercy, where Finn was born.  I was lucky enough to meet her soon after I was put on bed rest in the hospital, and we have grown to be better friends over the last 18 months!  She is truly a bright shining star, and we are so lucky to have her on our side.  She introduced the cause, and then the Weaver Family.

Once we were up on stage, our micro-preemie miracle boy Finn OF COURSE stole the show!  What's that line about not working with dogs or babies?  Anyway - the plan was for me to speak, and for Britt to hold the baby.  So, I told a short version (it can be done!) of our Story with Finn, then I told about what the March of Dimes and NICU Family Support have meant to us.  We were so blessed by the programming put on by Julie and her team.  We made name plates for our babies beds in the NICU, we made hats and blankets.  At Christmas time, we made adorable little onesies, and at that meeting I met another set of parents that I am still very close with today!  They had pizza parties for the siblings and many other activities that helped make our 3month + stay in the hospital a positive experience.  I am grateful we were in a facility that had this service - I know many others who were not and it seems their journey was not as positive as ours was as far as the services and education we received.  Then we let Finn take over - he smiled, and cooed and was generally adorable - as usual!

I truly hope the BALTO candidates meet and exceed their fundraising goals.  I see so much value in the job that is done by the Family Support Specialists!  Right now, Mercy is the only hospital in Oklahoma that has one, and that needs to change!  This money will hopefully help start a position at another Level III or Level IV NICU in the state!  Hmmmm...  Sounds like a job I might need to apply for...


Friday, January 25, 2013

Friday One Liners



  • ·         Oklahoma weather is schizophrenic

  • ·         Whatever I have done to my right foot/ankle is making me limp.  Which messes up my left hip.  I may need to visit the Chiropractor

  • ·         Ree Drummond, Pioneer Woman is my BLOGspiration.  But I don’t cook.  Or ranch.  Or have Basset Hounds.  But whatev’s!  She says to write like you are talking toyour sister.   I don’t have a sister.  But I write like I talk, so I guess I am good there.  Always wanted one (a sister).  Glad my girls have one each.  I had a brother for 36 years… (That was a lot more than one line…)

  • ·         I am a big fan of the internet

  • ·         Micro-preemies keep you on your toes and keep you learning new things.  I still want to learn sign language.  Just for fun – not because I need to…

  • ·         My first son is six years old today.  I am going to have a hard time remembering to say 6 instead of 5.

  • ·         “Scandal” and “College” seem to go hand in hand way too often

  • ·         I’ve got a very understanding boss that lets me do what I need to do when it comes to my family.  So grateful for that.

  • ·         Thankful that I have found a creative outlet.  May put that “learning to sew” thing on the back burner…

  • ·         I’ve added more designs to my ETSY shop  – including CHALKBOARD ART for Valentine’s Day!! Readers – use the code LOVE14 at check out for 14% off your order now through February 14!