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 AdvoCare!  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…