The Hero Challenge

I have a favor to ask of you.  A party favor, if you will.

I have been thinking about the twins’ upcoming birthday since before they were born.  Would they have a first birthday?  And could we possibly celebrate it with true joy?

They will.  And we will.

This will not be a party with cake smashes, icing covered cheeks, or awkwardly toddled steps.  They will sloppily drink formula.  They will have kiss covered cheeks.  And they will be awkwardly and limply handed around by loved ones.

And yet we will still celebrate it with true joy.

These boys.

Our boys.

The boys who “can’t”, perhaps “won’t”, and according to some, almost “weren’t”…are my heroes.  They have inspired so many and yet as of today they are capable of little more than love.

So imagine what YOU could do.  Those of us who CAN, WILL, and ARE…how much more can we accomplish?  Especially if we work together?

My request is simple…go be a hero.  It may be a big gesture or a small one.  One that is known, or one that is done in secret.  You can take a meal, pay a bill, lend a hand, or simply provide a shoulder.  Just do something kind.  Something good.   Then tell us about it.  You can comment on this post, or on the facebook link, I will compile the good deeds, and display them in a special way at the birthday party.  A reminder that heroes come in all shapes and sizes.  And anyone who chooses to, can make a difference.

Go be a hero to someone.  If they ask, tell them Landon and Nolan sent you.  I can’t think of a better birthday present.  And I can’t wait to hear from you.

#happybirthdaytwins

#herochallenge

#twoifbyfaith

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Practice Makes Less Painful

As the weekend is ending, I am feeling both exhausted and energized.

Let’s start with Friday… in general it was a very stressful morning.  Our home health interview, paperwork, and initial appointment lasted over 3 hours.  During which I struggled with how to draw a very very very expensive to replace gel medicine without compromising its quality and required temperature.  In the process I unknowingly dulled a needle (rookie mistake…I know), and felt horrible about how Landon’s injection went.  Lucky for Nolan I learned a lesson from that.  Unlucky for Nolan his blood sugar machine needed some tweaking, so he had multiple pokes at varying depths before we had a success.  Despite the torture, Nolan’s blood pressure was so elusive that neither of us could hear it.  I ended up driving in to the facility that afternoon and after 3 nurses tried, they finally thought they heard enough to feel confident about the reading.

I had to move our medical records again.  For the first time in this journey someone essentially admitted we were too much for them.  The doctor I had chosen locally to be our family doctor, including the well baby pediatric care for the boys, received a call from Children’s for our home going instructions and one week check up…and decided we should probably be seen somewhere else after all.  I don’t blame them.  I completely understand in fact.  Sometimes this is too much for me.  But no one has ever admitted it before.  I’ve had family, friends, and coworkers bend over backwards to help.  I’ve had two day cares go out of their way to accommodate us.  I’ve had strangers reach out to help us…and mean it.  But for the first time someone thought it over and said no to the boys.  I know I’m overreacting, and I’m thankful they were honest, but for some reason that also made me sad.  There will be plenty of times in their future where the world says “no”  “too much”  or “not here”.  And I’ll learn to toughen up about it.  But I’ll probably also hate it a little every time too.

We had a quick trip to day care where we discussed how to lower their germ exposure, and thankfully determined Ms D will help with blood pressure checks at lunch time.  Followed by a trip to Walmart to gather miscellaneous supplies to help us get set up properly.  By evening, we were back to feeling somewhat optimistic.

Their meds list is long, and changes every few days as we are tapering off of Trileptal.  But it’s easy enough to do.  The injections are getting easier.  The entire process is getting smoother.  What took an hour Saturday morning was down to about 30 minutes today.  We will have our first run without a nurse observing tomorrow morning, and are back to feeling confident.  Who knows…maybe we’ll even make it to work on time!

In other news, the boys do not seem agitated or irritable yet.  Both are eating well and sleeping well.  And…dare I say it…I think we are seeing fewer spasms.  I don’t know how long it should take to be effective, or if I just happen to have missed seeing them today, but I can only recall one from Landon, (not even a cluster) and none from Nolan.  I have such hope that this will work.  And while the daily routine for the next 6 weeks will in some ways make me feel less like a mom, and more like a nurse, I will always say “yes”, “more” and “here with me” when it comes to my boys.

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Not pictured…ACTH injections

 

Today, instead of prayer requests, I’d like to relay a few things we are thankful for.

1) A very very expensive medicine was available to us, and through private insurance and a donor sponsored copay assistance plan, at a cost of $0.

2) I continue to believe the Children’s Hospital we have chosen is a good place for us.  The neurologists call me directly, talk openly with me, and we are in the process of building a great working relationship.

3) I mentioned we were told to find a different local physician.  Children’s helped me call around and multiple names were thrown out.  But we landed on a Dr who already has one patient with seizures who is treated at Children’s.  They understand the dynamic and the information flow.  A bonus I could not have anticipated.

4) The boys are amazing troopers.

5) Maybe, just maybe, these medicines are starting to work on the dreaded infantile spasms.

6) Strength for today, and bright hope for tomorrow.

Over achievers

The boys and I are home. SURPRISE! We were discharged sooner than anyone had anticipated, including our doctors!

We just arrived home a few minutes ago. I’ll provide more details tomorrow, after some sleep hopefully refreshes my brain. All in all we are off to a good start, and pleased everything has moved quickly.

Home health is coming tomorrow to do some checks and finish my training (injections, blood pressure check, and blood sugar check are now daily).

I also need to pick up a few supplies and new supplements to get set up at home. And of course come up with a system to keep all of this organized.

In the meantime here is a picture of the three of us on our way out. We would like you to know that the camera adds 10 pounds and removes make up.

Thank you for caring about our boys!

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ACTH Begins

We are settling in for a quiet night after a busy day.

The twins and I are at our new children’s hospital.  To catch you up…

We had a GI appointment at 9:00 am this morning, resulting in a 4:00 am alarm time.   This was scheduled at my request and at the recommendation of other physicians.  The boys still eat everything by mouth.  We are thankful for that!  But they are congested often, and during many of their feeds they have coughing, sputtering, or stridor.  They also spit up large amounts frequently, particularly if they are dealing with mucus.  This was a consultation, during which we talked about their history, and agreed further study is needed.  An analysis by their speech therapist, and a video Barium swallow study have been scheduled.

On the neurology side, we are also here to begin ACTH, the steroid based treatment that will hopefully help stop their infantile spasms.  You can read more about it here.  It will be administered daily by muscular injection.  I will be doing the injecting.  Gulp.  But let me back up first to explain how we landed here.

The boys have shown some improvements lately.  We believe Sabril is helping their infantile spasms, by reducing their frequency and duration.  But they are still having multiple per day.  ACTH has a higher success rate, but its side effects are also more frequent, and in some cases can be very hard on little bodies.  High blood pressure, out of balance hormones, irritability, restlessness, fluid retention and excessive weight gain are all possible.  Additionally, the boys will be immune-suppressed during the 6 week treatment and for a while after.  So while this is a highly used option, it is not without risk or cause for hesitation.

That said…it is our logical next step in this journey.  So…we’re taking the step.

 

Landon’s EEG was today, showing improvement in the sense some of the noise was reduced, and the signs of infantile spasms have lessened.  But it is still very abnormal of course.  Nolan’s EEG is tomorrow.   This will help us establish a “pre-ACTH” baseline.

They received their first dose of the new medicine today.  I observed one shot and then gave the other one.

You’ll find a picture below of a very brave Nolan after I administered my first injection.  He was quite the trooper!  And I was pretty proud of myself too!

In addition to the testing mentioned above, we will probably be here another night as they monitor the boys reaction to the new meds, and train me on the injections, as well as checking blood pressure and blood sugar.  Hopefully we will be discharged Friday.

Prayer requests are for ACTH to be effective, without harmful side effects, and that we can keep the boys healthy.  I also pray that as we remove the infantile spasms and reduce the background noise in their brains, two little boys continue to emerge and teach us more about who they are.  Because they are indeed something special, and worth getting to know.

Sweet secrets

Sweet secrets

Mama's first injection!

Mama’s first injection!

Landon relaxing once he found out I would experiment on Nolan first.

Landon relaxing once he found out I would experiment on Nolan first.

 

Oh Brother

The big man was returned to us this weekend!  Due to all of the chaos and being “in between homes”  (does that mean homeless?) K has been with Mipa and Mima since 4th of July.

He has had QUITE the summer!  Farming, slip n slides, motorcycle riding, demolition derby, movies, a play, a self-requested surprise party, and countless other adventures.  Thank you Mipa and Mima for such a great summer!

Needless to say…we have been missing this little guy.   He finally got to see his new house this weekend, and by the close of the weekend, all 5 of us were under the same roof for the first time in far too long.  Here are a few pics that make me smile.

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Run Mama Run!

I would like to give you a phrase, and let you create an image to go with it. The phrase is “hit the ground running”…..

 

Your image is probably someone landing on the ground, feet ready to take action, quickly hitting a sprint.

 

Now let’s work the other way. I’ll give you the image, and we can determine the phrase together.

 

Someone landing on a treadmill that is already moving at top speed. Their feet are NOT ready for action, quickly hitting their face on the ground.

 

What’s that phrase? Perhaps… “Melody the last few days”.   Or more specifically “Friday August 15th”.

 

 

I have landed on ground that is certainly moving faster than I am! So far I’ve avoided a complete face plant, but all signs point to me needing to pick up the pace. Since our last update, a lot has changed.

 

  • We need a more local pediatric option, so we are transitioning away from the planned option (double boarded DR who we met 3 years ago with our first son) to a local family physician who can better assist us with immediate and local needs, local referrals, as well as the typical well baby and sick visits.
  • Rather than driving one hour each way to three therapies each week (quick math tells you I would have wasted 6 hours per week in the car)…we are learning about more local therapy options as well. An evaluation has been scheduled for OT, PT, and Speech. We are hopeful this facility will be equipped to handle our boys, and that we can all grow together as we watch them develop. The lead seems enthusiastic and ready for the challenges we present!
  • We have a home visit scheduled to kick off the early intervention program.
  • I have completed no less than 60 pages of applications regarding establishing new patients, or laying the ground work to apply for the local disability status and early intervention programs.
  • The Children’s hospital and I have been in close contact, and after further review of their file they DO want to do the steroid for the boys. And soon. Lots more to come on this.
    1. THAT has resulted in numerous phone calls with the pharmacy, the schedulers, the admittance group, and the neurologists.
  • The twins started day care, and are doing great. We are very happy with the facility, and especially thankful that their lead teacher has a nursing background.   The whole crew quickly learned that the twins love a good snuggle.  :-)
  • K is BACK! And raring to go! He loves his new house, his room, his swing set, his school, his brothers…he just loves life!
  • We are settled in the new house, barring a few half way finished spots that may not get more attention for a while.   Nonetheless, we are HOME.

 

I’ll update you as I have more information regarding the steroids.

 

Until then…better put on my running shoes!

 

 

11 Months!

L and N are 11 months old! (9.5 months adjusted)

L:

Weight – 20 lbs

Food – When he’s healthy, still five 6 oz bottles per day.   GI appointment coming soon to analyze reflux and his swallowing ability.

Accomplishments – More sounds, better grasping, more alert time.

Likes – Cuddles, hearing voices.

Other – Wearing 12 – 18 month clothes and size 3 diapers. Sleeps through the night most of the time!

N:

Weight – 16 lbs!!

Food – Same as Landon.  Except Nolan is still on the 22 calorie formula.

Accomplishments – Seems more alert, and more aware of his environment.  More sounds.

Likes – Smiling when the camera is away, and giving me the stink eye when it is ready.

Other – Wearing 9 – 12 month clothes and size 3 diapers.   Sleeps great!

Moments I don’t want to forget:

  • Big brother being so excited to see them after a summer apart. 
  • Seeing them in their new special tomato seats, and big brother being so proud to play with them.
  • Crying with our day care teachers as we moved on to a new chapter in our lives.

And now…their 11 month photos!  Holy Smile Fest…

Photo bomb!

Photo bomb!

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L

L

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L

<3

<3

Brothers!

Brothers!

A behind the scenes look...what a beautiful mess!

A behind the scenes look…what a beautiful mess!