Come a Long Way

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

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

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

 

 

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

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

 

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

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

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

#FourthKid

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

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



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

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

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

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

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



#FourthKid Finn

We can't decide!

The Six Dream Weavers use the word "Adventure" a lot.  We don't like to sit around.  We go out looking for for things to do.  We take the back roads.  We stop and smell the flowers.  Britt and I often don't tell the kids what it is we are going to do, just that it is an adventure! (Including the Weaver Family Road Trip 2013 that is looming VERY near on the horizon!  The kids have no idea!)  Sometimes they love this, other times, they are exasperated..  Their individual personalities play a role in that as well.  All that to say, we love a good adventure!

We've been enjoying our summer full of adventures - nature camp for the 3 big kids, swim parties and trips to the pool, New Student Orientation on a constant loop for Britt, Vacation Bible School, a little surgery for me, and Nana the Wonder Sitter and I went to Dallas for 5 days for the International Grand Convention of our sorority, Alpha Delta Pi. (I went to the one in Arizona 2 years ago shortly after I found out I was pregnant with Finn...)  Finn has gotten sick a couple of times and ended up at the pulmonoligist, but nothing severe.  And, he had a hearing check up with Hearts for Hearing and is still within normal ranges but hearing more robustly from his left hear than his right.  He is now 21 months old - hard to believe he is 3 months shy of his 2nd birthday!

click to see larger

Which brings us to our next Adventure!  If we are creeping up on Finn's birthday, the Stillwater March of Dimes March for Babies MUST be on the horizon!  Mark your calendars and SAVE THE DATE!  September 28, 2013 at Willard Lawn on the OSU Campus.  Britt and I are working hard with the steering committee to make this a wonderful event, and we were blessed to be chosen as the 2013 Ambassador Family for this event.  Britt even chose our 2 mile route around the beautiful Oklahoma State campus - hitting all the highlights and MUST SEE spots!

And of course, no event is complete without a t-shirt.  That's where YOU come in! HELP US DECIDE!  After about a hundred drafts, we have finally settled on a design.  And we are going to use CustomInk.com to print the youth and adult shirts.  (Still looking for a vendor for the onesie for Finn...)  But, the color combinations are ENDLESS!  We need your input!  (Keep in mind that March of Dimes "official color" is purple.)

Here is a graphic of our 8 favorite color combinations.  Please choose your top 2, and leave a comment ON THIS BLOG and I will keep a running tally.  Voting ends on Friday, July 12, 2013 at 4:00pm CST.  I will post the winning color combo on the Early Adventures of Finn Facebook page and here on the blog.  I will then choose a randomly drawn person who choose the most popular color combo, and I have a fun little March for Babies gift for you!  SO EXCITING!

So, here we go!  Here is the picture, and a description!

Click to see larger version!  DETAILS!!!

 Option 1: Carolina blue with purple  Option 2: Teal with yellow
 Option 3: Sky blue with navy           Option 4: Natural tan with coral
 Option 5: Metro blue with lime        Option 6: Yellow with teal
 Option 7: Purple with orange           Option 8: Lime with royal blue

Let the VOTING BEGIN!

What’s in a Name?

Finn and family update first!  Finn did AWESOME after his ear tubes!  We can really tell a difference in what he can hear, and he is trying SO HARD to walk!  He has gotten 2 new teeth this week - brings us up to 8.  But there is no rhyme or reason to the ones coming in now.  They are not symmetric nor in order, so I bet he gets more in the next few weeks.  He had his first evaluation at Hearts for Hearing in Oklahoma City yesterday, and scored in the range for normal for the tests they performed.  We go back in six weeks to do it again once the tubes are “settled” in more.  After a pretty calm weekend of typical activities, we had a bit of a crazy Monday and Tuesday!  OSU campus closed at 12:30 Monday and all day Tuesday due to a “blizzard” – that turned out to be nothing more than a cold rain and about 2 inches of wet snow!  Free time off!  The kids got Tuesday out of school, too, but we had the appointment in OKC, so it was basically a wash.  They went to Nana’s and played in the snow water and mud at her house while we went with Finn.  Tuesday afternoon I put them to work tagging clothes and items for the Adorable Affordables consignment sale!

Earlier today, I was chatting online with a new friend (who made this AMAZING shirt for me!) and I asked her about how she chose her son’s name.  She, in turn, asked me about Finn’s name.  I’m not sure I have ever really told the “long” (I’ll try to keep it short) version of how we came to decide on his AWESOME name, so I thought I should write about it.  And if I am doing his, I can’t leave the BIG Dream Weaver kids out!  It’s kind of heady to think that I am (at least partially) responsible for saddling 4 humans with the monikers they will use for the rest of their lives.  I hope I served them well in this task…

Finn Ricker Weaver: (en utero name: Shocker.  Because we were SHOCKED!) Fourth child.  LAST child.  The story of how we came to decide on his name is not really all that glamorous or exciting.  We had decided along the way early in the pregnancy that we were pretty sure we wanted a 4 letter name for this (genderless at this point) baby.  Emma and Lara were 4 letters, we called Jacob by his 4 letter nickname of Jake, so it stood to reason – 4^th kid, 4 letters.  So, we printed lists off the internet.  Off name databases. Grabbed baby name books off store shelves.  Pulled names from our own minds.  And at MANY lunch dates, we read our lists to each other and marked off HUNDREDS of names as no-go’s.  The girl names that finally remained were Holley (with the “ey” like my name; courtesy of the 4 year old who has just seen Cars 2 and loved Holley Shiftwell), Stella (ending in “a” like Emma and Lara), and Kate (family name on my husband’s side – 4 letters).  Needless to say, we didn’t even need these!  The boy names were Nathan (Nate), Barrett (Rett) and Finn.  All from name books or websites.  The afore mentioned 4 year old was particularly attached to the name Finn.  Again, Cars 2 – Finn McMissle.  Plus, Britt and I are fans of the FOX TV show Glee, and Finn Hudson was a main character, so the name was “known” a bit and not completely off the wall.  (You can see the names in a game from our Gender Reveal Party post!)  The other kids’ names were so traditional; we didn’t want to veer too far off that path.  As for his middle name, we wanted to honor my older brother Brian who had passed in April of 2011.  We didn’t feel comfortable using the name Brian, so we chose to use our last name, Ricker, as Finn’s middle name.  I am so glad we decided to do this.  Makes his name truly unique, and it completely suits him!  Finn Ricker Weaver – Smiley and serious, tough and tenacious!

Here’s a video of 4 year old Jake the night before the gender reveal party – praying for a boy named Finn McMissle, or if it had to be a girl, at least name it Holley Shiftwell!

Jacob Alan Weaver:  (en utero name: Bullet.  Because we are die hard OSU Cowboy fans and that’s our football game day mascot’s name! And a fetus is small. Like a bullet…) I dug deep into the archives to find a post about Jake’s name.  I’ve been in the blogging/journaling business a long time…  Sadly, the post I found wasn’t very exciting!  But, I do know how we chose his name!  We knew from very early on – before we had time to really discuss names, even – that our baby was a boy.  This was Britt’s first child, and as such I gladly left the major part of the naming decision up to him.  He wanted to leave his legacy with a good, strong name.  We talked and decided we wanted to name him Jacob after Britt’s dad.  Since he wasn’t a “junior” we decided to go with a different middle name from his grandfather.  So, we chose Alan, which is Britt’s middle name.  I remember we bought a frame for the ultrasound picture that definitely showed our baby’s gender to give to Britt’s parents, and we wrote “Jacob Alan” on the frame.  His parents – especially his Dad – were elated!  Such a neat memory we get to share with our Jake some day! Jacob Alan Weaver: mischievous and silly, class clown and big tease!

Emma Marie and Lara Elizabeth Horinek:  (en utero names: Jenna and Barbara.  Because I was in Texas, the Senior George Bush was president, and those were the “First” twins!) I had to dig WAAAAAAAAAAAAY back to find any documentation on these names!  I typed my journal on a computer, but it was not online anywhere.  I had printed the entries as I went along, and they are in a binder.  And yes, I knew where the binder was!  Once we knew the babies were both girls, the girls’ father and I decided we would each name one baby.  Seems fair, right?  But, we each had veto power if we thought the chosen name was hideous.  Luckily, that was never an issue.  We had also decided we didn’t want to do the matchy-matchy thing (like Haylee  and Kaylee) or even the same first sound thing (like Madison and Mackenzie).  We did decide to do 4 letters, and end in the same sound.  They were twins after all!  We couldn’t disappoint the people who wanted  ”twin-y” names!  He chose the name Emma Marie.  Emma after a distant grandmother, and Marie was the middle name of his paternal grandmother (who actually died in a tragic car crash on Thanksgiving Day the November I was pregnant!).  I chose Lara Elizabeth.  That was the name my mother had originally chosen for me.  But my brother insisted upon calling me Betsey.  But I always knew I wanted to name my daughter that!  Lara is after my Dad (Larry) and his favorite song from Dr. Zhivago “Lara’s Theme”  and then I stuck with Elizabeth since Betsey is a derivative of Elizabeth. Plus, that way they both girls ended up with "traditional" names.  I also liked the fact that there were no “obvious” nicknames for either name.  I wanted them to be called what we named them.  Their “Twister” nickname came about when they were about 6 months old and a sorority sister of mine told me a story about her brother being in Kindergarten and coming home and telling the family about the “Twisters” in his class.  They later deciphered that he mean “twin sisters!”  And we still call my girls the Twisters 10 years later! Emma Marie: strong and determined, creative and passionate.  Lara Elizabeth: goofy and fun, smart and loving.

So, what’s in a name?  How did you choose the names for your children, or how did your parents choose your name?  Good feelings or bad feelings about it? I think these stories can be fascinating!