Getting Organized

Any kids room, twins or not, has lots of “stuff”.  Clothes they are growing in to, growing out of, and miscellaneous supplies.  That is true for us as well, our “stuff” just looks a little different.  The boys have had a range of supplies and changes as of late.  AND a growth spurt, particularly for Nolan.  AND new therapy items.  Before we knew it, it looked like this:

Yikes!

Yikes!

I swear I can find things.

I swear I can find things.

This is embarrassing.

This is embarrassing.

In preparation for more organization, I bought more stuff!

In preparation for more organization, I bought more stuff!

Believe it or not...this ALL came out of there.

Believe it or not…this ALL came out of there.

Hoard much?

Hoard much?

Ta da!

Ta da!

Much better!

Much better!

Much better!

Much better!

Much better!

Much better!

 

We’ll have new and different gear very soon, but now we have room for it.  And maybe, just maybe, we’ll be able to find it too!

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2014 Hero Challenge

We have a lot to be thankful for right now.  Recoveries, health, memories, helping hands.  It feels like a good time to remind you of why we’re thankful for you, by giving you the results of the hero challenge.

Inspired by the way in which so many have reached out to help us, support us, love us, and pray for us, I wanted to say “thank you” in a far bigger way than I could ever do alone.  So…we asked for your help once again, in paying it forward.  You responded in full force, and made a difference for so many.

Here was the original request…

 

Here is a special video that captures the enthusiasm…

 

And here are SOME, (but no where near all) of the things you did.

 

  • ›  Took a meal to a family that recently had multiples. Complete with Melody’s favorite taco dip.
  • ›  Donated a massage gift card to a mom who has been busy with her family, including a special needs child and a husband who is recovering from multiple surgeries.
  • ›  In honor of Landon and Nolan’s 1st Birthday, Pop & Nan made over 30 pints of peach preserves to be given to other people & challenging them to do something nice for someone else in the name of Landon & Nolan.
  • ›  Took “welcome” items to a new neighbor.
  • ›  Paid for a month worth of day care for a family in need.
  • ›  Delivered snacks and treats to the local police officers, fire department, and EMS crew.
  • ›  Made cupcakes for meals on Wheels for homebound seniors.
  • ›  Paid a band camp fee for a student who could not pay.
  • ›  Ordered T Shirts for some who could not get them.
  • ›  Bought a meal for a family at Culver’s.
  • ›  Fixed a dinner for a family suffering a devastating loss of a loved one
  • ›  Stopped to assist a family who had a piano fall off a trailer.
  • ›  Paid a friend’s admittance to the Women’s Club play.
  • ›  Donated to Somerset Christian School scholarship fund to assist children with tuition.
  • ›  Signed up to be a marrow donor.
  • ›  A grandson of our dear friends, was also a Super Hero, he battled brain stem cancer for 10 months, but yesterday he went to be with Jesus. We have sent a gift from you two Super Heroes in your name to help pay his medical bills. Someday, in heaven you can let him know who you are. You two, as well as he, have made a difference in many lives.
  • ›  I decided to honor the boys by delivering ice cream to The Bank of Romney (Augusta branch) God Bless the whole family!!!
  • ›  Helped an older gentleman, who was admiring Rose, sit on a motorcycle for the first time in years.
  • ›  Bought Speedway gas cards for Hancock Christian Clearing House to distribute to those in need.
  • ›  Surprised a family of 7 by paying for their meal at a restaurant when we were invited to share a birthday event with them.
  • ›  Donated $100 for the School Backpack Program to provide food on weekends for elementary children that would go hungry without this help.
  • ›  Purchased pink light bulbs as we will “Glow to Show” our support for Breast Cancer patient education, research and care.
  • ›  Provided meals to a family with new twins.
  • ›  Donated Books to a local school
  • ›  Helped some friends in need
  • ›  Volunteering for Project Lead the Way at the local high school.
  • ›  Spent extra time with her mother, and talked about some of her favorite memories.
  • ›  Helped with the Angel Choir, the UK hospital, pitched in extra with some family needs.
  • ›  Donated money to the Blanchard Valley Center
  • ›  Made a donation to the Ronald McDonald House (3)
  • ›  Gave away their Garden Vegetables
  • ›  Helped buy supplies for a classroom in Morgantown
  • ›  Took a meal to a friend
  • ›  Sending a birthday in a box for a foster child who keeps getting relocated.
  • ›  Took one of her special needs students to a Rotary Club meeting where they could be the guest of honor.
  • ›  Donated Blood
  •   Ran a Superhero 5K
  • ›  Bought books and toys for a friend who is going to take in a foster child.
  • ›  Helped a friend get caught up on bills
  • ›  Being more understanding and patient in general. Hold doors. Say thank you.
  • ›  Helping Coordinate a search for a marrow match for a terminally ill child.
  • ›  Helped locate a runaway dog
  • ›  Donated food to the weekend nutrition program through their local elementary school.
  • ›  Donated to the local food pantry
  • ›  Took a couple out for a sunset cruise on the lake as a gift
  • ›  Put money on the lunch card of a child who was denied food and couldn’t afford to put more money on.
  • ›  Donated food to the “Nutrition on Weekends” program
  • ›  Paid to help the local band go to Chick Fil A bowl
  • ›  Donated Walmart gift cards to the pregnancy crisis center
  • ›  Donated to Ruff Start Boxer Rescue
  • ›  Donated a free photo session for Landon and Nolan’s first birthday
  • ›  Bought formula for a hungry baby to help a family in need.
  • ›  Gave Justin and Melody a free day/date night while they watch the kids.
  • ›  Donated household items to the Hope House
  • ›  Filled up the Hope House Penny jar
  • ›  Delivered donuts to the local public servants
  • ›  Delivered donuts to the morning shuttle crew
  • ›  Delivered popcorn and cookies to the cleaning crew, evening shuttle crew.

 

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An Unexpected First

Tuesday was a busy day at our Children’s hospital.  Up at 3:30 am, we got off to an early start getting organized and out the door.  Thanks to J for getting the boys changed and in their seats, and thanks to D for accompanying me on the trip for a very useful extra set of hands!

There were two planned appointments: Vision assessments for both boys, and a lingering upper GI appointment for Landon as a pre-surgery check.

Vision was first.  The boys have what is called Cortical Vision Impairment.  Essentially, it is a neurological (brain) rather than ocular (eye) based impairment.  We have a lot to learn about the boys’ CVI and Tuesday was a good start on that path.  They performed a few different tests to check response rates, and various other aspects of the communication from eye to brain.  I was allowed to help their eyes open for the first test, which involved a lot of strobe and blinking lights.  The second test involved simply colored, slow-moving shapes and pictures projected on to a wall in a dark room.  A video camera recorded their eye movements.  And they needed to actively participate.  Not surprisingly, Nolan surprised me.  He needed a few minutes, but eventually started clearly noticing and observing the wall.  I can’t say yet how the DR will assess his vision, or if there is much ability to work with, but I believe Nolan gave them the best test attempt we could have asked for.  Landon found the whole exercise silly, and chose not to participate.  :-)  But hopefully we can infer a thing or two from Nolan’s test.  And we’re already putting together some good therapy ideas.

The Upper GI went well, and they observed what they needed to for Landon’s pre-surgery checkout.  In the meantime, they were able to confirm the proper placement of Landon’s NJ tube as well.  Speaking of which, that bring us to the unplanned detour of the day.

Monday night, Landon’s tube quit working.  The pump would alarm, and did not fix even after replacing the bag and hookup.  We tried manually clearing his tube, but could not budge any liquids in or out.  Since it was already evening time, and he would have to fast for a few hours before his upper GI anyway, we decided to stop attempting feeds, and let the hospital determine what was wrong. Unlike the NG tubes, we can not move or replace Landon’s NJ tube without help from radiology.  I told D the plan Tuesday morning, and she agreed we were fine skipping the small amount of formula, and commented about what she used to do to fix that issue.  So in between Vision and the Upper GI appointment, we visited radiology for an NJ check.  Between waiting to get squeezed in, and a lengthy registration process, we ended up filling up what was supposed to be our relaxing two-hour lunch break.  During that time, the nurse joked about the same home remedy D mentioned.  So after a two-hour wait, that nurse checked in their “supplies” and found one remaining can of the secret ingredient that works great at unplugging tubes.

image  image

It took some pretty strong pushing, but sure enough, the tube cleared up with a little Coke. I’m not sure if that’s a commercial for it or not.  But nonetheless, we now know a quick fix at home.  And sweet Landon had an unexpected first.  His first Coke.

Landon Coke

12 Months! (Ish)

L and N are 12 months old (sort of).  Ok, minor detail.  I had planned to do this on their due date, but that came and went during Landon’s pneumonia.  So here we have the 12th and final installment!

L:

Weight – 21 lbs 3 oz

Food – Landon is currently taking a constant feed via an NJ tube.  His rate is 40 ml per hour, roughly 32 ounces per day.  A G-tube surgery is planned for early December, and once the dust settles, we plan to get back to working on oral feeds.  Even if just for spoon feeding, and a bottle or two per day.

Accomplishments – Coming out of TWO hospital stays!  Landon is very vocal now, making coos, ahhs, and growls throughout the day.  He had a setback in terms of tone, (as would any of us who were sick for 4 out of 6 weeks) but he will get there!

Likes – Hand rubs, being talked to, and lights.

Other – Wearing 18 month clothes (24 month in hand me downs) and size 4 diapers. Sleeps so peacefully and wakes up smiling!

N:

Weight – 21 pounds!!!  (Holy smokes!)

Food – Nolan is still on NG, taking five 6 oz bottles per day.  Like Landon, he will have the G-tube soon, and we will also work on getting back to some oral feeding once he is ready.

Accomplishments – Coming out of a hospital stay, more responsive smiles, more alert time.

Likes – Leg massages, tummy rubs and being talked to. 

Other – Wearing 18 month clothes and size 4 diapers. Sleeps great!

Moments I don’t want to forget:

  • The combined three hospital stays.  They are so tough and continue to amaze us.
  • Watching Landon’s ambulance lights kick on.
  • Introducing them to more family at the reunion.
  • Their first birthday party!
  • Having so many join in the celebration with the hero challenge.

And now…their 12 month photos!

L

L

N

N

 

DSC_0778 DSC_0786 DSC_0799 DSC_0804 DSC_0809 DSC_0810

And let’s not forget how far they’ve come!

DSC_0639 (2)

Putting the CARE in Day Care

We started a new phase in the boys’ lives today. They will be home during the day, under the watchful and loving eye of a Nanny that I’m fairly sure God sent to us. We are very excited about this change for a number of reasons. For selfish reasons, our morning and afternoon routines will be easier. But more importantly, we can work on improving the environment for the boys at home, knowing that will now be the place they spend most of their time.  (More therapy items, positioning, equipment, etc.)   And…appointments like home health and early intervention therapies will be in the comfort of their own home, with no rushing involved. Another obvious benefit, particularly since we’ve spent (a combined) 30 nights in the hospital the last two months, is that we will hopefully avoid a few germs and bugs by removing them from the more public environment of day care before winter hits.

 

If you were going to design someone for us, you would probably want someone who loves babies, but also has a medical background. That would be perfect, right? We thought so too. Welcome to the team Grandma D!  :-)

 

All that said – I wanted to take the time to brag on the day cares we’ve used for the boys. From January to August, they were cared for by a team who knew us well and had helped us raise Karson. They prayed and worried right along with us during the pregnancy. I had meetings ahead of time to figure out what they would be comfortable taking on, knowing we might have feeding tubes, shunts, seizures, or countless other needs. When the time came, we discovered we mostly had babies who needed love. And they provided that in abundance. This crew helped me learn about the boys. Feeding skills came and went and came again. There were endless amounts of spitup and laundry. We all learned a few tricks together, and shared them. We celebrated every time tiny Nolan crossed another pound. It was at that day care Landon had his first infantile spasm, which we caught on video during therapy. Of all the people I had to tell we were moving, I dreaded telling Mrs. Kim the most. And sure enough, we both cried at the thought of it, and even harder when that last day finally came.

 

From August until now they have been with a new team who did not know us ahead of time, but even still welcomed the boys and all their complications with open arms. We’ve had a rough 3 months medically, but they never pushed back, never said no, and always took great care of Landon and Nolan.   We’ve added feeding tubes, had patchy attendance, balanced learning new jobs and establishing new doctors, and have had some illness thrown in. And all along, they’ve provided patient, loving hands.

 

The boys have been blessed with wonderful caretakers from day one. We are so thankful for that and they will forever have our gratitude.  And in some ways, these two will always be their babies.

All Smiles

It’s been a busy week, but a fantastic one.  An “I’ve slept in four states in four nights” kind of week.  BUT, we’re all together now, along with Mima and Nan, and enjoying some quiet, healthy, happy time at home.

Going back a few days:

On Sunday, I met Justin and Karson for a handoff of Nolan.  He spent the night with me near the hospital because he had an early start to the day on Monday.  And because these things never pop up at a good time, I also had to get my oil changed.

As a preface to much of this, both boys will be getting G-tubes.  I’ve mentioned that previously but can’t recall if I said it with certainty.  After this episode with Landon, which we believe was caused by aspiration, it is a certainty, and will happen within the next month.  Monday included an Upper GI for Nolan, as well as a surgery consult.  Landon’s day was full of discharge checklist items, including ordering equipment, training on his new pump (he is on NJ feeds now so he gets a constant feed rather than bottles), and getting the all clear from a long list of Doctors.  We had everything completed, approved, and set in place so we finally pulled away at 5:30.

I spent a couple of days away at training this week as well.  It was wonderful to see some old friends and coworkers.  And while I was gone, Justin, Mima, and Nan kept everything running smoothly.

Landon is doing fantastic.  He is making new sounds, including some of the sweetest softest growls you’ve ever heard.  He and Nolan are right back to business with therapy on Wednesday, and so many smiles each day.  We are thrilled to all be back together, and so proud of Landon’s comeback.  It was very scary for a few days.  In addition to worsening pneumonia, and a blood transfusion, the medical staff had some very serious conversations with us and we were not sure where things were headed.  It’s hard to believe that was only two weeks ago.  And now we’re here:

Brothers!

Brothers!

Nan time

Nan time

Nolan

Nolan

Landon looking so sweet

Landon looking so sweet

Landon: The smirk of a champion.

Landon: The smirk of a champion.

Nolan is so happy to have brother home!

Nolan is so happy to have brother home!