Grief and Love

These past few weeks have been both quiet and chaotic in our household.  We’ve been hustling and bustling around the holidays, we’ve had lazy snow days at home.  We’ve been taking down our Christmas decorations and sprucing the place up to look fresh for the New Year.  We’ve been going through old things and getting rid of what we could – and overall, just enjoying this time we’ve had together as a family.

We also spent a few days in the hospital after Buggy had some unexpected illnesses.  We joke that Ellie knew it was a new year and wanted to make sure we met that deductible on day one.  Little monkey.  Our rush to the ER last Monday was a scary drive, mostly because we’d been shaken to our core recently when a little friend of Ellie's and Kaleb’s passed away.  I don’t want to compare our experiences to theirs at all, but when another little kiddo with medical complexities seems to be so healthy (for her) and then is swept into the arms of Jesus so suddenly, it’s hard not to think about how damn fragile life is.  Not just for kiddos like Victoria and Ellie… but for all of us.  It’s hard to swallow the lump in your throat when you can’t see through your tears of mourning as you’re trying to keep it together.  I waited until after Christmas to let Kaleb know that his sweet friend passed away.  We both sat and cried it out together.  Then he asked me for a blank paper and grabbed his crayons and headed to the table.  He drew a picture of him building a block tower with Victoria and showed me.  I put it on the fridge and let him know I’d give it to her parents.  A few days later, I came out of the bathroom ready to go to her viewing.  Kaleb saw me (not in yoga pants) and asked where I was going.  I told him.  He jumped up saying, “I want to go with you”.  I encouraged him not to.  I told him that it was not a fun thing… it was a very sad time and I didn’t think he wanted to go through that.  I was trying to shield him from the realness of it all.

See, when I had just graduated high school, a close friend of mine died during our class trip.  The days that followed were impossible.  We’d been there… we’d seen things as they transpired.  We got the call from friends who went with the ambulance to the hospital.  We made the calls home and parents cried on the phone with us and booked us emergency flights home.  When we went to his house to talk with his parents, I can’t begin to describe how awful I felt.  How unfair it was that we were home… and he was not.  The guilt in the midst of that grief was unbearable.  I took my own experience and tried to impart a bit of that wisdom on Kaleb.  I told him that he didn’t want to see Victoria this way and that it was better for him to remember all the fun things they’d done together.  Through tears he said, “Mom, she’s my friend.  I’m going with you.”  I called Brandon to get his take on it.  If Kaleb really wanted to go, he could go.  So I sent him upstairs to get some nice clothes on.  He came down with a new button down and asked me to put his tie on him.  He had slacks on and brought down tennis shoes.  We swapped the shoes for dressier shoes and combed his hair.  All the way there, he talked about Victoria and the things they’d done together.  He talked about how funny she was and about all of the things they’d done together in the two years that they were in the same classroom.  I was so proud of him, but still unsure of how he’d react at the funeral home.

In October 2016, my grandma passed away.  This was the first funeral that my kids had gone to that they’d remember.  They mostly played in a back room during the viewing.  They had a TV there to watch and games to play.  Not until the end of the day did they come into the room to be with the rest of the family.  It was then that my boys realized that grandma was in the front of the room, laying in a casket.  Lance stood back and looked over her, then sheepishly came back and sat by me.  Kaleb went up to the casket and stared at her.  He stood there for a long time taking in the whole situation, then came back to me and said, “Mom, isn’t that your grandma that got dead?” in a voice way too loud for comfort.  He went back up to the casket and took another long look, then came back and joined me.  He was pretty awkward.  I was sure this time would be no different.

When we walked into the funeral home, Kaleb immediately noticed the screen in the lobby cycling through pictures of Victoria.  He carried his artwork with him as we went into the viewing.  I went up and hugged her parents and spent some time talking with her momma.  Tears poured down.  Kaleb followed suit and hugged her dad, then handed him his drawing.  He hugged her momma, then took a long look at Victoria and told me how pretty she looked.  She did look pretty.  He went up closer to her casket and showed me all the things he recognized in there – her special backpack that he said held her feeding pump (he knows all about these, he said) – her doll – and other sweet drawings.  Victoria’s mom thanked me for bringing Kaleb and we proceeded to spend the rest of our time looking at the hundreds of photos throughout the room.  Kaleb was excited to look at the pictures and show me how cute Victoria was as a baby and was really excited to see a picture with him and Victoria together.  Overall – he was everything I needed him to be that day and more.  He showed strength and peace through the viewing that was admirable for a five-year-old.  I know that he likely doesn’t understand the whole impact of the situation, and that is okay.  I was afraid to bring him with me… I was afraid that seeing classmates would be too hard on her parents.  I was wrong.  Looking back on my own experience at 18, I was probably wrong then, too.  I’m sure Jason’s parents had a very hard time seeing us come home when their son couldn’t, but I also think that maybe it was helpful to have his friends in their home again.  I guess I don’t know. 

I’ve had far too many friends and family members lose their children.  I’ve thought about this scenario too much.  I know that if one of our children were close to going home to heaven, I’d want the rest of our children there, too.  I don’t want to shield them from the pain of that experience.  While it’s tragic and it’s awful and it’s a pain that never goes away, it’s always seemed like a necessary pain to me.  As most of you already know, I lost a nephew 13 years ago.  The pain of his passing is still so very sharp.  It’s sad and it’s unfair and it’s overwhelming, but it’s real.  And the pain we feel today is a testament to the impact his little life had on our hearts.  When a friend of mine posted this video last week, I had to watch it several times.  If you watch to the very end, you’ll hear her say, “You can trust a human being with grief.  Grief is just love squaring up to its oldest enemy.  And after all these mortal human years, love is up to the challenge.”  In that story and in my own, children have found ways to teach us adults that love is certainly up to the challenge.  Allow grief to well up in you and burn in streams down your face.  Let that love you have square up against death and let it be real – however that manifests for you – because we are capable of handling it.  Our love is great enough.  Take in your day today – and tomorrow – knowing that love sustains us all.  Take some time to be thankful for all of the sweet memories you've made with the loved ones you've lost.  Let grief happen.  Let the scars be known because they are, indeed, signs of love... deep, ridiculously beautiful love.

This link will take you to the powerful video on grief.

12th Day of Christmas: Sweet baby Jesus

Go Jesus, It’s your birthday!  And if we’re ever to be thankful and mindful of just one person… it’s you.  There are scars on this ragged heart of mine… and you know fully what each of those looks like.  Scars from my younger years… scars from my dating years… scars from my married life… and scars from motherhood.  You wept along with me and felt the depths of my pain.  When I was beyond hope and in pain that I couldn’t shoulder myself, you shouldered that burden for me.  Not that I wish immense pain on anyone, but I can tell you that the songs of Sunday school are true and you know this truth when it is all you have left.  When I sang “I have a joy, joy, joy, joy down in my heart” and “I have a peace that passes understanding down in my heart” as a child… I thought we were just being happy and working on our tongue twisters.  As an adult, I know that the source of my joy is Him and I’ve felt those mighty arms wrap around me and truly offer a peace that surpasses all understanding.  A peace that come in a time when peace seems impossible… a peace that covers me like a warm, weighted blanket and only allows me to feel what I can bare. 

When we had the boys and desperately wanted to add to our brood, we prayed and prayed for another baby.  Months of negative pregnancy tests had me down in the dumps. [I know many people have these for years… and I can’t begin to imagine that heartache]  On Christmas day four years ago, I came walking down our hallway with my first positive pregnancy test with Ellie.  Brandon scooped me up in his arms and we cried and celebrated.  Our Christmas miracle!  A few days later, I’d hit the altar at church and surrender this child over to the Almighty.  I knew that only He could control what was happening to this tiny blob of a baby who I already loved so much.  When I’d look back on my journal entry from this week, I saw that the same week where I was overwhelmed with emotion on that altar was the week that this little baby’s heart would beat for the first time.  I’m convinced that God had us waiting for this baby until he knew that we were really ready for all that would come our way.  And that heartbeat… yep, he knew it wouldn’t beat exactly as it should… and brought me to my knees to surrender the situation to Him.  When times seemed uncertain, He’d be there to wrap those mighty arms around me again – as he had through other tough times in my life.  When we were too weak to carry on, the prayer warriors for Team Ellie Bug would allow Jesus to lift that yoke from our shoulders and carry the weight that we couldn’t.

We thank our church family who has supported us and stood in the gap for us through the years.  They've done fund raising for us, they've brought meals, they've prayed and pitched in to help with the boys.  These folks hold us in prayers and visit us in the hospital.  We are forever grateful for them today, too.

Today we celebrate a baby.  A baby that humbled himself and came down to earth to save us all.  He paid an unfathomable price that gave us hope for the future.  He saved us.  On his birthday 2,017 years later, we’re still impacted each and every day by a man who walked this earth for a mere 33 years.  He made all the difference in our world and allows us to live and love and find joy in our busted up lives.  This post is short because this is so simple and powerful.  Jesus saves… and today, we remember and honor His miraculous birth.  As much as we like to make it about the gifts and the food and the egg nog… I hope we each take some time to remember the true meaning of this day and I hope we can all reflect on times in our lives when we felt His presence.  Almighty God, King of Kings, The Great Physician… Jesus our Savior… Merry Christmas!

I am ending this post with the heaviest of hearts and asking for you to lift another family in prayer.  While you are opening gifts with your family, a family near and dear to us will be coping with the loss of their daughter.  Our two littles lost one of their best friends today... parents who have been fighting the good fight for five years are laying their weary heads down this evening knowing that their little girl is in the arms of Jesus.  My heart is completely shattered for them.  Please lift my friends in constant prayer.  I will miss the laughter and sweet hugs of their little girl.  She's touched so many lives and will never be forgotten.  Fly high sweet girl.  We love you.  Jesus... hold her in your arms tonight and blanket her friends and family with your peace.  With broken hearts, we rest in your everlasting love.

10th & 11th Days of Christmas: SHECC & COHSC

Yes, I’m cheating… yes, I’m combining two days into one post.  Shut it… this season is crazy, y’all!  And while these two shout-outs don’t really go together at all, they both have acronyms and that’s good enough for me this morning.  Ha!

SHECC

As I prepared to send my kiddos out earlier this week for their last day of school this year (meaning 2017, silly), I was inclined to make a post about how crazy thankful I am to have the school and staff that we have.  We started sending the boys to Shelby Hills Early Childhood Center (SHECC) before Ellie’s first birthday.  Our thoughts were that they’d be in classrooms with friends of all ability levels and they’d see kids with tubes and nurses and all that jazz and it’d normalize all that they were experiencing at home.  What I didn’t know was that SHECC was an amazing preschool for both typical and non-typical kiddos.  Our boys flourished that first year.  Lance went on to Kindergarten, but Kaleb’s now in his third year at SHECC.  This year, we also enrolled Kaleb in daycare at Wilma Valentine (which shares a campus, by the way).  We were trying to get him used to a full day of school-like activity before he rolled into all day Kindergarten next year.  Again, I had no idea how amazing their daycare program was, either.  A few weeks in, Kaleb came home telling me about a city in Italy that has boats for taxis… and then showed me the leaning tower of Pisa that he made, too.  Ummm… awesome!  He came home dressed like a mariachi band member one day and when learning about China, came home asking to eat with chopsticks (again) and requested that I buy ginger tea for him.  From Egypt to China and Mexico to Italy, he was learning all about places of the world and experiencing a bit of their culture each morning before he went to preschool.  AMAZING!!  For the boys, we have several SHECC staff members who deserve a special shout out:  Laura, Darlene (who had Lance in preschool and are now Kaleb’s teachers), Naomi, Kim, and Stacy (Kaleb’s first year teachers), Emma and April (Kaleb’s 2^nd year teachers), and Kim C., Kim F., Karen, Tonya, Zoe, Hannah, and Janice (the staff of Wilma Valentine).  Y’all are amazing and have poured your love into our sweet boys over the years – thank you!

 

Family picture from the sensitive Santa event at SHECC

This year is Ellie’s first year at SHECC, but other than loading her on a big yellow bus that first day, this has been an incredibly smooth transition (and the bus was only difficult because I wasn’t ready for her to go).  When we started the transition to preschool, Ellie was evaluated by folks she’s been working with for years.  The developmental specialist was someone we met before Ellie was born.  Once she transitioned, she’d still see her PT and OT that she’s so familiar with and had only slight hesitation accepting the rest of her new staff.  When we went to open house (which was only overwhelming for me), Ellie met her teacher (who I’d known for several years) and her para (who spoke fluent sign language with Ellie).  Everything about SHECC feels like home to us.  A venture we took on for ulterior motives turned out to be one of our best parenting decisions we’ve ever made.  Who knew?  

As a shout out to staff for Ellie, she has Ashley (Developmental Specialist), Andrea & Molly (PT folks for Early Intervention)… Andrea is still Ellie’s PT in preschool and Jenna is her PTA, Kendra & Joanna (OT folks)… Kendra was Ellie’s OT during Early Intervention and is still there through school with Joanna, and Alison & Maria… Alison was our Speech Therapist in Early Intervention, Maria is Ellie’s new ST.  This is in addition to her teacher, Hayley, and her para, Beth.  The director of the preschool program, Kathy, is also involved in Ellie’s care, as well as nurse Deb.  I’m sure there are others who work with her during her day that I’m missing here.  When Ellie boards that big bus each day, Tony is there to greet her (and give treats to Tundra as he follows Ellie up the bus steps) and her bus aides Mary H. & Brian.  The transportation director has also helped out many times, too, Mary R.  We’ve also had folks from the other building involved.  Tania and Julie (SSAs) have helped me with my billions of questions and are holding tight to roll into other waivers when Ellie falls off the Home Care Waiver.  Nancy worked with us to transition Ellie into preschool and has answered many questions on the transition beyond preschool for me, too.  We also worked with Diane for our ISFP (Individualized Family Service Plan) before we transitioned to an IEP (Individualized Education Program) and also brought in the Superintendent of our school district.  Whew… if this sounds exhausting… it kind of is at times.  But my goal in listing all of these folks is to give you a little peek again at what it means when I say it really takes a community of people working together to make our sanity possible.  It’s a community of people we never knew existed (I mean, we didn’t know all the pieces that came together to make it work)… but we’re so very thankful to have in place.  Thank you, Shelby Hills, for always exceeding our expectations and being a solid foundation for all of our kiddos.

COHSC

When we came home from Cincinnati with Bug, we were met by a medical supplier (DME – which stands for durable medical equipment, I believe).  We’d already met the respiratory therapist that came to our house that day because the DME had been out a few weeks before to deliver most of our home equipment and do a home inspection.  The two women who came to our house from that company (Ashley and Monica) were wonderful.  They worked out of the local office and they were on hand to answer any questions we had.  The trouble with our first DME, however, came when we’d order supplies or have an issue with a shipment.  The local office didn’t touch orders… orders came from warehouses all over and (in my opinion) were not packed by folks who had any idea what a vent circuit should look like for a child.  We’d get wrong items every month… or miss items that we desperately needed and had no way to get a hold of a person to put in an urgent request.  This was incredibly frustrating.

We had an appointment in the pulm clinic once where the RT asked how our DME was doing and if we needed anything.  I said, “I can’t go home without some trach ties.  Trach ties were the one thing left off of our shipment 16 days ago and with a skin infection, I’m not reusing ties.”  The RT gave me a card for John Reed from Central Ohio Specialty Care and said, “You need to call this guy.  I promise he’ll take good care of you.”  We didn’t go home that day, we were admitted to PICU, so trach ties were supplied.  I made a phone call to John that same day and he said, “We’ll take good care of you.  I’ll have trach ties in your hands before you leave the hospital.”  He showed up the next day with two boxes of ties for me.  He took care of all of the transition and insurance implications of switching DMEs (which isn’t an easy task).  He showed up to deliver all of our new supplies with a familiar RT (Monica… who had worked for our previous DME).  Did I mention that John is one of the owners of the company?  Yep – the owner of the company showed up to help set up our equipment.  He also made several of our deliveries himself when he knew something needed to go out.  Since this time, their company has expanded greatly… and for good reason.  John hasn’t lost that personal touch, though.  When we sent out Thank Yous to our medical team for Ellie’s birthday, John sent a package back to us full of gifts for Ellie’s birthday.  I was humbled to tears!  Kevin, our delivery driver, is always personable, as well.  Mary is another RT that we see from COHSC.  I can’t say enough how wonderful it is to not have to worry about medical supplies.  Seriously!  When I’m low on something – or Ellie’s sick and needs different equipment than normal, it’s no stress at all.  I call Heather or Laura and most times, we have the needed item the next day.  When equipment malfunctions, new equipment is on its way to our house immediately.  When we’re planning a vacation and we’ll need portable equipment, they’re hooking us up with exactly what we need and helping us make contingency plans with the closest children’s hospitals in case something goes wonky and we’re 20 hours away.  COHSC has exceeded our expectations at every turn.  If you know anyone in the Ohio area who needs a DME for pediatric supplies (yes, they only supply pediatric patients… which is amazing), I cannot recommend COHSC enough.  We’ve had nothing but amazing interactions with their entire staff.  It makes me sad that there is such an immense need for pediatric home medical equipment, but I’m endlessly thankful that people like John step up to fill that need with utmost care.

And these two shout-outs wrap up days ten and eleven for me.  Tomorrow (or maybe late tonight), we’re giving a shout out to tomorrow’s birthday boy... because who deserves a shout out more than that guy, right?  Love y’all… hope you’re having a wonderful Christmas weekend.  Hope you’re staying warm and safe and eating all the yummy food you can while hanging out with family and friends.  We had a blasty blast last night and look forward for five more Christmas celebrations to come!

Kaleb and friends dressed as Rudolph last week

Kaleb helping Ellie during their holiday open house

Wilma Valentine leaves us with lots of photos of Kaleb in action during daycare

He loves all the sensory activities they do in daycare

Ellie was not a fan of touching the pumpkin guts in class, but stirring them... she could do that!

Kendra (OT) helping Ellie ride the pony on Fall Fun Day

Ellie walking with her para, Beth, during the costume parade - Kendra is close behind.

I can't handle how cute this craft was for their week studying Italy

Lance getting his face painted at the Shelby County Board of DD's anniversary party

Kaleb getting his face painted by April (one of his teachers from last year)

Ellie boarding the bus on her first day of school

During her first day, her teacher, Hayley, sent me this photo to let me know that Ellie was doing just fine.

Okay - so admittedly, I don't have many pictures of what COHSC helps us with... but here is a snaphot of the equipment we need when Ellie sleeps.

I took this one to text to B that a shipment had arrived... this is one month of supplies for Ellie... and this is when she's healthy and relatively low maintenance.  When she was on the vent, we got a whole lot more than this.

Here is her set-up from when she was on the vent at night... we're creatively hiding a TON of stuff here... but see that little buggy in that crib?

Here's a picture of the cards we sent out to our medical team to celebrate Bug's bday this year.

9th Day of Christmas: Pediatrician, Early Hurdles, & Developmental Peds

Before we had Ellie, we searched around to find a pediatrician or group of pediatricians who were BCMH-approved providers.  The pediatrician we had for our boys (Dr. Smith) was not part of this network at the time, so Ellie’s appointments would be in a different location than the boys’.  No biggie.  We chose a place that seemed great and came highly recommended from people we knew.  Now, I’m sure this practice would have been just fine for our boys… but I struggled with them accommodating Ellie.  First, we had the appointment about her hearing test where I explained everything on the phone and they made an appointment for a week later, only to have the doctor walk in and say, “Oh, she has Down syndrome… I can’t do anything for her ears here… you’ll need to go to Children’s”.  It wasn’t the first time we’d been in the office – we were not new patients – and for us to make another appointment in our already packed schedule or to rearrange work to make it to this appointment only to be told they couldn’t do anything was frustrating, to say the least.  We dealt with the frustration and moved on.  Each time we came in, though, there were always extra people who came in with the doctor to “get experience”.  Now, this happens all the time in the hospital, yes, but I felt like every time we had an appointment in this office, there was a new student that was coming in to check out Ellie.  I don’t normally mind, but when I’m making an appointment to be seen, I’m not as interested in the teaching moment as I am in getting our concerns addressed.  The straw that broke the camel’s back here, though, was when I was certain Ellie had impetigo on her face and neck… creeping closer to her trach stoma each day… and we were in the thick of RSV season with a kid that was already struggling through.  I’d asked if I could come in and go directly to a room (as to not sit in the waiting area and get covered in sneezes).  I’d asked if we could come in early or a bit late to clinic hours.  I’d asked if I could send photos of the spots for the nurse or doctor to evaluate.  I even asked if I could just check in from the parking lot and then come in right when it was our turn.  All of my suggestions were turned down flat.  I either had to sit in their waiting room (which was a hot bed of disgustingness during cold/flu season), or I couldn’t get the simple ointment I needed to control the impetigo and keep it from spreading to her stoma.  I didn’t feel like I was asking too much and I feel like I offered a ton of alternatives that would work for us.  Still turned down.  On this particular day, I had already vented my frustrations to all three of our nurses and they all agreed that it was impetigo and as I dropped the boys off at preschool, the school nurse also looked at my photos and agreed.  That afternoon, I took the boys to their pediatrician and asked if they were able to make a diagnosis based on a photo at all.

Their pediatrician took one look at the photos I had, and wrote me a script for the ointment I needed.  Definitely impetigo.  Why was that so hard?  One of the nurses let me know that it’d be no problem giving us a private waiting space in the back when we checked in for appointments.  This would mean that we’d have a clean place to sit and not worry about Ellie grabbing a toy that another kid just coughed all over.  Sounds like I’m a germophobe, I know… but if you know me, I’m the farthest from one.  I just knew Ellie couldn’t afford to risk getting RSV or other simple colds that her brothers could handle no problem and that while the waiting room was clean and tidy, sitting next to a sick kid was not an option for us.  This doctor had no problem accommodating our needs with Ellie and we made a seamless switch… and we couldn’t be happier.

I’d actually met Dr. Smith when I was a photographer at the hospital.  At that time, I thought she was kind of bossy – but maybe that was just because we shared a space in the nursery to work.  She’s direct and doesn’t add fluff.  When I was working along side her, I wasn’t so sure how I felt about this.  As a mom, I needed this from our pediatrician.  Dr. Smith doesn’t get too excited about things that aren’t a big deal – but she’s thorough and evaluates concerning situations with great detail.  She’s also incredibly personable.  Since she sees all of our kiddos, she’s helped us through wonky situations with each of them – full of compassion and understanding.  We couldn’t ask for a pediatrician better than her.  She’s feisty and fits our family and our ever-changing needs very well.

Rewind again to when Ellie was itty bitty and home as a newborn.  I’ve posted before about her “normal” first two weeks, then about her going into heart failure at 15 days old.  Once Ellie was put on diuretics by cardiology, she lost weight in a hurry.  When she was a month old, she had been on diuretics for about a week and had dipped below her birth weight.  Not cool.  She was very skinny at that point.  That’s when we were admitted to Dayton and worked through different techniques to beef up her calorie intake.  In the end, we came home with our first feeding tube – an NG tube.  With this came some more conversations with Help Me Grow and our BCMH nurse, Jenny, from the Health Department.  The week after, we started getting visits twice a week from a nurse at the Health Department, Deb.  Maybe part of me seeks out adult interaction because I work from home and my interaction is remote, or maybe it’s just socially ingrained in my personality, but when people come into our home… we connect.  I’d known Jenny since I was a little girl.  We went to church together and she had kids right around my age.  When I saw her come through our front door, it was a welcome level of comfort.  When we were in Cincinnati Children’s for four months, Jenny sent us an ecard every single week.  I’m not kidding… she didn’t miss a week the entire time we were there.  She constantly encouraged us and prayed for us.  We’ll never forget her generosity and outreach.  When Deb started coming out to weigh Ellie, she was a stranger… but only for that first visit.  By the second visit a few days later, we had plenty to talk about and the boys squealed with delight that Deb was here again.  Deb checked in with us while we were in Cincinnati.  Deb and Jenny both followed our story on this blog, too.  Earlier this year, when I found out that Deb had been hired at Shelby Hills as the new school nurse, I was elated.  I had so much anxiety swirling around sending Ellie to school without her full-time nursing staff, but I knew this was a step we needed to take.  When I heard that Deb would be just down the hall each day, it put my mind at ease.  Deb knew all about Ellie’s history and we were close.  I knew that Deb wouldn’t hesitate to call or text me when something was odd with Ellie – and that’s exactly what’s happened this year.  It’s a lot easier letting your baby get on that big yellow bus when you know so many people on the other end of her trip and you know how much they already care for her before she steps foot off the bus on her first day.  We are so incredibly thankful that we have these women in our lives!

Finally, we started going to the Down Syndrome Clinic (or Developmental Pediatrics) at Dayton Children’s when Ellie was almost two years old.  I know, I know… we were supposed to start there when Ellie was 4-6 months old.  Well, that didn’t happen.  With all of our other specialists on board, this one just kind of got pushed back until we were in a stable place and were able to get into the clinic.  On our first visit, Dr. Kasten told me that looking at her chart, she would have never expected Ellie to be doing as well as she is.  That’s not the first time we’d heard that!  She couldn’t believe how much Ellie was doing and how quickly she seemed to pick things up.  She said, “She’s going to be walking in three months”.  I didn’t think that was possible, but she was spot on. 

There’s always a level of expected delays, but Dr. Kasten gave us a list of things we could be doing with Ellie that would help minimize the gaps we’d see between her and her peers.  One of the things we were already doing a little, but she highly encouraged was sign language.  We’d already been teaching Ellie some sign language and at two years old, I believe she knew somewhere around 20 words.  Dr. Kasten was impressed, but said, “She seems very social.  Let’s focus heavily on sign language because even when she starts to talk, she might have some trouble articulating what she wants in a way that you can understand.  If you give her a huge signing vocabulary, she’ll be able to communicate so much more and possibly minimize some of the frustration with not being understood.”  Easy enough!  We signed up for a monthly all-access pass with Signing Time TV and Ellie’s vocabulary took off.  By her third birthday, she knew about 120 signs… and that is expanding all the time now.  Ellie is talking now, but signing far more words than she can say.  There are days when she comes home with new words that I need to learn so that I can understand her, too… this is wonderful! 

If you are looking to teach a little one sign language, I HIGHLY recommend Signing Time.  You can buy the DVDs, but we opted for a monthly access plan that gave us digital access to the whole library.  Ellie loves it.  It’s how I get her to focus on something other than the 37 leads being attached to her during a sleep study… or how Melody gets her to stay relatively still so she can do her hair.  Score!  Dr. Kasten is also encouraging when we’re trying new things (like Learning Program) or when she had ideas that are different from mine (like potty training techniques).  Because she sees hundreds of area kids with Down syndrome and her sole focus is on development, we value her opinion and suggestions.  As if visiting her in clinic wasn’t already fun for us, our last two appointments have also had Lisa join in.  Lisa is a genetic counselor, but more importantly (in my opinion), she’s a local mom who has a daughter with Down syndrome, too.  She’s the genetic counselor that I met when I was pregnant with Ellie who gave me the straight talk about kids with Down syndrome being “happy all the time”.  Ha!  Lisa said, “You’ll hear everyone tell you that kids with Down syndrome are always happy.  That’s not true.  They have the full range of emotions that you and I have.  I will say, however, that all the kids with Down syndrome I know do have one thing in common:  they’re all very stubborn.”  This was met with laughter… and over three years later, she could not have been more accurate.  I love reading about her daughter (who is in middle school) and I can’t help but wonder how our stories will be relatable or totally different.  Because, after all, each of our children has their own little personality.  Just as all three of my kids are so different from one another, every kid with Down syndrome is different from the next.  This is one thing that took a while to internalize for me – but this amazing staff of medical professionals helps me understand more and more each day.

Thank you, thank you to all the ladies on this list (this might be my first post where all of our medical team members were women).  Thank you for being my sanity and my support system – thank you for being so real with me.

And for all of you reading along, thank you, too!  We’re now nine posts through these twelve days of Christmas… and since I procrastinated a bit, I’m going to have to post one each day until Christmas Eve.  Let’s do this!  I hope that you are enjoying all the wonderful things this time of year and not making yourself too crazy with the hustle and bustle of it all.

Ellie is all smiles with Lisa and Dr. Kasten

I added this photo because I found it as I was digging through old photos and it was just too cute to leave out. - Oct. 2014

This was shortly after Ellie got the NG Tube and finally started to gain a little weight.

Those bright eyes are adorable!

8th Day of Christmas: Little kids at Christmas

It’s easy to get frazzled by all the things we (as parents) have going on around this time of year, especially when each trip out the door involves bundling up little ones.  We can drive ourselves crazy with sports schedules, our own work, and an ever-growing list of school/church activities that we need to do.  Throw in holiday parties, shopping lists, and that stinkin’ Elf on a Shelf, and it’s no wonder parents are absolutely crazy before we even get to Christmas morning.  Speaking of that elf, I swore we’d never cave and start that tradition.  But two years ago, both of our boys were in preschool and Kaleb’s class had an elf.  Every day on the way to and from preschool, those boys sat in the back of the van and excitedly talked about where the elf might be today… or after school, what kind of silly place he hid.  They lit up.  They were talking so fast that they could barely catch their breath.  I’d be greeted with, “Mom… MOM, guess what Larry did today?” and giggles.  In those car rides, I came to a realization.

This time we have when Christmas is truly magical for our kids is so small.  For our kids, they didn’t really get too excited until they were about three years old.  I’m guessing that we only have maybe one more year of this magic with Lance.  So really, by the time he’s eight (he’ll be seven next month), he’ll be on the other side of this magical age.  Don’t get me wrong… Christmas will always be wonderful… but something about the excitement of little kids at Christmas is unlike anything else I’ve experienced.

I’m keeping this post short because this is so simple… but was a big realization for me.  This time we have when innocent abounds and there is wonder in every drop of life… this magical window of childhood… it’s tiny in the grand scheme of things.  I want to soak it all up.  I want to live it to the fullest.  Does that mean that our elf does elaborate shenanigans each day?  Nope – the most exciting thing he’s done was hide in a stack of toilet paper with a sign that said, “Do you want to build a snowman”.  I’m not saying you have to go over the top here… but if you like to, have at it.  There is a tiny amount of time when they can’t wait to get up on Christmas morning and tear through wrapping paper… there is a tiny amount of time when they’ll stand proud (even without any front teeth) in front of church and belt out all the songs in their Christmas pageant.  There are only a few years when they come home to practice the lines of their Rudolph play and Christmas songs with you.  Kaleb wakes up each morning, climbs into my bed while I hit snooze, then pops up to my alarm to go find Luigi, our elf, before he goes to the bathroom.  Sometimes our elf forgets to move – meh… whatever.  It won’t be long before they think our family gingerbread house construction session is lame.  It won’t be long before they stop making paper ornaments to hang all over the tree… or before they no longer bring home their cotton-haired Santas home from school and beg to hang them on the doors.

This time is small, folks… and if I’ve learned one thing about children these past seven years… it’s that every stage is fleeting.  And while I’m guilty of wishing for the next phase (no more diapers… please) – I have to stop myself and remind myself that they’re only this little for a short time.  While I’m not going to go overboard making every stinkin’ day magical… I can suck it up and do a few little things to keep the magic alive in our household.  I have to say that I enjoy it more than they do – even if I hate the elf.  So this Christmas, spend some time baking cookies, assembling a gingerbread house, driving around to look at lights, making hot cocoa, ice skating, or moving that crazy elf.  I know time is tight… trust me… I know that full well.  But the memories are forever.  I’m not saying overbook yourself… that’s silly, too… but let them be little.  And for the love of it all, share some of your pictures and ideas with me.  I’m always amazed to see the things other people come up with.  Soak it up, folks – either with your own kiddos, or with nieces, nephews, grandchildren, and friends.  Enjoy a little extra innocence and magic this year!

And for any of you who have been following along - tonight is Ellie's capped sleep study.  Please send some happy thoughts and prayers our way.  This is a big deal... and we're hoping for great results.  I don't know when things will change if it goes well, we'll wait and see.  I'm just hoping for a wonderful night of sleep for Bug... I know better than to think that I'll sleep much at all... but it's all worth it.

Kaleb decorating a cookie at their preschool open house

Lance (aka Joseph) at our church program

Kaleb getting a pep talk from Coach Daddy before he went in for his 2nd wrestling match on Sunday

  

Ellie using far too many sprinkles on her cookie

Do you think he's a tiny bit proud of his frame?

Ellie wanted all the sparkles on her frame.

This is as elaborate as we get with Luigi

Annual Christmas caroling to Great Grandpa Schroer and Grandma & Grandpa Schroer

The toothless wonder with Great Grandma Shuster.

He is excited that he can sing "All I want for Christmas is my two front teeth" this year.

Singing for Great Grandma Shuster - Ellie, not so much

Jingle bells with the music at the Pulm Christmas party

Lance was so proud of his sprinkled cookie

Sensitive Santa was a BIG hit!

More Luigi shenanigans

There's a house in Piqua that has a ridiculous amount of lights... we loved it

7th Day of Christmas - Medicaid & BCMH

We’ve always had private health insurance through my employer.  Our family has been covered continuously.  So we’re just like the rest of the privately-covered families out there.  We still pay almost $600 per month in premiums to turn around and pay a $3,000 deductible before any services are covered (to break that down quick, we have to pay out over $10,000 a year before insurance touches us... and yes, we end up paying out all of our deductible & a healthy chunk of our out of pocket each year).  Honestly, I’m very thankful that we have what we have here.  We are fully aware that our insurance plan is pretty good [and we know that families buying insurance through the marketplace are paying far more than $600 a month in premiums].  That’s not to say that insurance hasn’t changed incredibly over the past few years.  There’s no debate there.  When I had Lance our deductible was $500 and our family out of pocket max was $2,500.  Ha - if only!  That was only seven years ago… and we had cheaper premiums to boot.  My purpose here is not to complain about insurance, but instead be eternally grateful for it.  Back in the day when our private insurance was all the coverage we had, I had a very different view of government sponsored insurance plans.  I thought they were only for low income families (not that we’re anywhere near a high income household at all… AT. ALL.) and that they were frequently abused.  I had no idea how diverse they were, though.

Towards the end of December 2014, we were nearing the 30-day mark of being inpatient in Cincy and the financial office for the hospital called me down to meet with an advisor to talk about options.  Uhhh… okay.  Theresa sat me down and explained to me all the ins and outs of medical billing and options we had to handle the massive financial burden that was headed our way.  When we were in the ICU, the average daily charges to our insurance were about $14,000/day.  So if this had been our first hospital stay and Ellie hadn’t had additional tests and surgeries, we’d already be looking at $420,000 hitting our insurance… which is pretty much what happened (but we also had our prenatal care, three other hospital stays, three surgeries, and tons of tests hitting insurance that year, too).  By the time Ellie was four months old, she’d accrued over $1.8 million in medical claims.  Now, if that was back in the days before the Affordable Care Act, she would have already maxed out her lifetime benefits with our private insurance.  LIFETIME benefits - at four months old.  Ouch!  This is when we initially realized how amazing insurance really is.  Yes, we were responsible for our $2,500 deductible that year and we had to cover our $8,000 out of pocket max, but that was chump change compared to her total billed claims. [Since this, our deductible and out of pocket max has increased… but is still a tiny percentage of what we use.]

Fortunately, when you have extensive medical costs like that, and thirty consecutive days in the hospital, you qualify for additional medical coverage.  Starting in 2015, Ellie was eligible for the Medicaid waiver program.  This meant that Medicaid would pick up most of her medical costs that insurance didn’t cover.  Did we still have to pay our deductible?  Absolutely.  Did we still have to cover normal expenses that the rest of our family accrued?  Of course.  But once Ellie was on the waiver, it essentially disregards the income of the family as a condition for eligibility.  Whew!  Once we had this waiver established, we had to also work on getting the Ohio Home Care Waiver secured because Medicaid, on its own, would not cover home nursing.  Now, in the state of Ohio, the hospital is not supposed to discharge a patient with a new trach without the Home Care Waiver in place (this is what we were told, at least).  It does happen, but our discharge planner said that they desperately try not to do that.  Here’s the reason for this:  once you have a trach, you have home care nursing hours… you also have a boatload of monthly medical supplies and hella expensive medical equipment that stays at your house.  Home nursing alone runs about $15,000 per month.  When Ellie came home on a ventilator, we were running about $10,000 per month in medical supplies and another $8,000 a month for medications.  In our case, our medical supplier (DME) is out of network, so our insurance would only cover that at 60%.  Our private insurance doesn’t touch Ellie’s medication, and maxed out at 60 lifetime days in home nursing.  So even with our private insurance running at full blast, we’d have to cover $27,000/month out of pocket just to keep Ellie home and healthy.  Heaven forbid she get sick or need another surgery (or eleven).  These programs are set up to make sure that families like ours are able to function.  We have two working adults in our family, we pay for the best health insurance plan provided by my employer, and we stuff as much money into our Health Savings Account as we’re allowed by the IRS each year to make sure we can pay those medical bills coming in.  No matter what we do, though, there’s no way to afford $27,000 out of pocket each month. 

We also have a third back-up insurance provider:  BCMH.  In Ohio, the program is call Bureau for Children with Medical Handicaps.  Ellie qualified for this with her congenital heart defect diagnosis.  I believe this coverage can cover her up to age 21 as long as she has at least one specialist caring for her annually (cardiology, ENT, neuro, etc.).  We actually had this coverage lined up before she was born.  It didn’t cover any cardiology care prenatally, but it helped cover costs once she arrived.  BCMH is fabulous.  The only hard thing about it was that we had to make sure that any providers treating her were part of the BCMH network.  While this was easy to do for, say, a pediatrician… it was impossible to do in the Emergency Room.  When we were in Cincinnati, it was hit and miss who was a BCMH approved provider, and of course, we had no control over who was ordering tests and who was evaluating Ellie each day.  BCMH still helped a great deal.

Even now, outside of the walls of a hospital and outside the unique qualifications under the Home Care Waiver, these programs are amazing.  When Ellie had RSV last month, we blew through over $16,000 worth of breathing treatments to make sure she trucked through it.  Yes, of course $16,000 at home was cheaper than just two days in the ICU, but still… that’s outrageous. 

We are what you would call a "super user" for insurance companies.  At the end of 2015, my employer sent out a summary of total medical claims paid out by the company in 2014.  I looked at that letter, then looked at our insurance claims for 2014.  I think there are about 3,000 lives covered by our company.  Of the total insurance claims paid out by our company for all 3,000 lives, my four-month-old daughter accounted for just over 18%.  Blah!  I really wanted to send out a company-wide email with a picture of our cute girl and say, "I know our premiums are going up... it's her fault... but look how cute!  Thanks!"  Super user is not a title we want… but we soon realized for every person that abuses the system (and gives government funded insurance programs a bad name), there’s a hard working family like ours that couldn’t own a home, couldn’t work, couldn’t afford to send their children to school or daycare… couldn’t afford to breathe without programs like Medicaid.  Now… do I hope and pray that Ellie will not need these additional layers of insurance some day?  Absolutely.  Do I one day hope that she’s a working adult who can subscribe to her own employer’s insurance plan?  You bet.  But until then… until we no longer have $27,000 a month of uncovered expenses, this is where we’re at.  When you think of those covered by programs like Medicaid, know that without these programs, children and adults with special needs could not get the medical care they desperately need.  For so many families (like ours) who need to travel out of state for certain care, private insurance is sometimes useless and these programs are the only way they can cover these medical expenses. 

Now to tell you about the hundreds of hours I’ve spent on the phone with insurance companies… haha… just kidding… that would be the most boring post in the world.  But know that it’s very much a part of our lives – it’s very much a part of what we do to fight for our child and for the care, medications, surgeries, and supplies she needs to live.  When the debate turns to health care, I have plenty of vested interest, folks.  So for any of you who had no idea these programs existed… or how crucial they are to people with special needs or complex medical needs… now you know.  You’re welcome!

Again, thank you for following along with these posts.  We absolutely could not do this without your love, prayers, and support.  Thank you, Team Ellie Bug!  We love you dearly.

Love,

Parents of a $5 million baby (gasp)

6th Day Of Christmas - Eyes & Ears & Mouth & Nose

Head, Shoulders, Knees & Toes.

How many of you are now singing along?  Ha.  This post will cover most of Ellie’s other specialists: ENT, GI, Optometry, and Audiology.  That’s the best grouping I could do here, folks.

Dr. Elluru – ENT – Dayton Children’s

We first met Dr. Elluru in the PICU the summer after Ellie came home from Boston.  Ellie was sick at the time, and we were in PICU discussing the status of Ellie’s trach.  I told him the background story for why we thought Ellie got a trach (mostly because of cardiac-related pressures that would likely resolve when breathing was made effortless).  We then told him that when we’d followed up with Pulm once home from Cincinnati, we’d asked, “How long do you think she’ll need her trach” and the answer was, “For most kids with Down syndrome who are trached for the reasons she’s trached, we start to wean off the ventilator right around three years old with the goal of decannulation around age five”.  When we were in Boston, there was some hope that getting decannulated would be an easy road – but I gave him the (new to me) diagnosis of subglottic stenosis.  Dr. Elluru said, “First… I’m never going to choose a course of treatment based on a diagnosis.  I’m going to see what she can do and we’ll go from there – all kids are different.”  That was exactly what I needed to hear to know that we’d for sure be establishing our ENT care with him.  I didn’t want Ellie treated a certain way because “kids with Down syndrome tend to do X, Y, and Z”.  Of course, we need to take some of those things into consideration… but she is her own person and so far, nothing she’d done had been textbook… so let’s not treat her like she’s going to fit into a bucket here.  I immediately liked him and his bedside manner is fabulous.

He comes into a room and says, “Hey, momma” and talks to me about life and family and is a friendly man to talk to.  When things didn’t go perfectly in the OR the first time he operated on Ellie, I could see that he was torn up inside about it.  He was in our PICU room afterwards paying very close attention to Ellie.  I put my hand on his shoulder and said, “It’s okay… these things happen”.  He was humbled by that response and still brings it up to this day.  To us… it wasn’t a big deal… but the weight on that man when he came into our room was palpable.  Me freaking out wasn’t going to help matters much.  Ellie would go on to see Dr. Elluru in the OR as many times as she’s seen all of her other surgeons combined.  Of her 14 surgeries, he’s performed seven.  Her tracheal reconstruction (Stage 1) was the longest surgery she’s endured – right at seven hours of operating time on that one.  

Dr. Elluru giving Ellie a pep talk before her first surgery with him.

And Ellie w/ Dr. Elluru last month in clinic.

Dr. Elluru also manages our trips to the sleep lab (which we’ll be going to next week) and all of her scoping procedures.  In our last clinic appointment in November, he said that as long as her next sleep study goes alright (not even amazing), she should be set to get her trach out.  She may still have some suprastomal collapse (a collapsing of her trachea just above the stoma site), and maybe that’ll need another rib graft and reconstruction, but he thinks she can do that without her trach.  This is all very exciting!  We just may need those bandaids soon, y’all.  Trying to not get too excited, though.  After our miserable sleep study in April where I was completely crushed with failure, I’m trying my best to roll with the punches.  I can’t help but be antsy, though.

Here's a cool article about Elluru from when he first came to Dayton Children's.  I remember the staff being super excited to have him.  Click here for the article.

GI – Dr. Williams – Dayton Children’s

So this is the one area where we really don’t have issues, but as long as Ellie has a G Tube, we’ll have GI on board to manage it.  So far, Ellie hasn’t had any real issues with her gut… which is amazing, really.  We know so many other families who have this as their main concern, so with everything else that Ellie has going on, it’s a relief that she can eat and poop and carry on as normal.  Yes, she has a feeding tube, and yes, we still use it some… she’ll have a G Tube as long as she has a trach.  I will tell you – feeding tubes are amazing and super convenient… until they come out… and Ellie is a master at pulling hers out.  We’re able to give meds through the G Tube and we don’t have to worry about her spitting them out – this is especially helpful when we’re giving meds for storming that have a tiny dose and are administered when she’s crazy upset.  We’re also able to give her formula and fluids via G Tube.  If you saw my post earlier about her having RSV, let me tell you that she would have been in terrible shape without a G Tube.  Ellie didn’t eat – not one bite – for seven whole days.  She was barely awake any of the eight days she was sick… and any energy she did have needed to go to breathing.  Her G Tube allowed us access to administer meds and give fluids and formula for those seven days so that she didn’t end up in a worse predicament than she already was.

 

GI also has a dietitian that meets with us each appointment… and some that come see us while we’re inpatient.  Right now, they’re a little concerned that Ellie is so small.  She teeters right around the 2^nd percentile for weight and the 5^th percentile for height… so for a full term kiddo, they don’t get a whole lot smaller than her.  When she dipped down on her growth curve, it was met with some concern over calorie intake and such.  So our oldest and youngest kids are both ones that we try to pump calories into.  Hmmm… that has to be a gene from Brandon… it’s certainly not an issue for me.  Ha!  We’re not terribly concerned with this, though – she does eat and we know that handy dandy tubie will come out… and then she’ll just have to eat more!  And it's probably a good thing that we don't have GI issues because we're now on our third doc.  We really like Dr. Williams, though... so this is fine.

I mean... if you're going to have a G Tube - might as well make it adorable.

Optomology – Dr. Liston – Dayton Children’s/ Dayton Eye Associates

Ellie started seeing her eye doctor, Dr. Liston – in January 2017.  This is another specialist that she sees, but our visits are quite uneventful.  We originally sought him out after a referral from our pediatrician.  Ellie loves to look at books – and puts her face about three inches from the page when she does so.  She also does this with my phone.  We knew she COULD see things further away because she’d sign “Daddy” as Brandon walked through the front door… but we didn’t know how much she was actually seeing.  Dr. Liston dilated her pupils and ran some test in his office before assuring us that Ellie’s eye sight is exactly as it should be.  Yahoo!  Although, there are some pretty cute specs… I’ll keep those in mind if we ever need them.  The most excitement we had in the eye appointment was provided by Kaleb who was grabbing a toy from across the lobby, and asked loudly, “Hey mom, why does that lady have a patch over her eye?  Is she a pirate?”  Oh, Kaleb… you kill me.

For those of you wondering, in our house, we don’t assume that something bad happened to people who have something different (like a patch or a wheelchair).  We say, “Everyone has different eyes, just like everyone has different skin and hair.  My skin isn’t the same as Kaleb’s skin and my eyes aren’t the same as Lance’s.  My tummy looks different than Ellie’s too… and that’s okay.  Normal is boring.”  Okay… so that last sentence might not sound very nice… but it’s our way of appreciating differences… life would be boring if we all looked, acted, and thought alike, right?

Audiology

Ellie’s had several hearing tests, thankfully, they’ve all been normal.  When she was about a month old, we had her at a birthday party.  This party was super loud with lots of kiddos running around and popping balloons periodically.  I noticed that every time a balloon popped, people jumped – kids cried – and the cycle continued.  After a bit, I noticed that Ellie had slept through all of this.  Later, I noticed that even when Ellie was awake, the loud pop of a balloon elicited no reaction at all.  Could she hear?  How in the world would we know if she was hearing at all?  We called her pediatrician at the time and voiced our concerns.  They scheduled us in their office for a hearing test.  I spent a few days seeing if Ellie reacted to any sounds… loud claps… voices… her brothers and their innate loudness.  Nothing.  Part of me went all fearful again.  I was already concerned with her ability to “fit in” once she was school age.  Now I was concerned that not only would these potential friends have to accept her outward differences, they’d also have to know a new language in order to communicate with her.  Getting the cart ahead of the horse here, I know.  But if I’m being honest, all of these fears rushed through me.

We met with her pediatrician who walked into the room to talk with us (we’d been here a few times already) and then said, “oh wait… she has Down syndrome… I can’t do her hearing test here.  We have to refer you to Children’s for that.”  Not impressed.  At a time when we already had 3-5 appointments each week… I did not need a waste of time like this.  This was just one of my many frustrations with her first pediatrician.  Off we went to Children’s a few days later for a hearing test while she slept.  The first round was a no-go… Ellie refused to sleep.  We had two other appointments in Children’s that day, so we went off to another clinic, hoping to get back into Audiology by day’s end.  We managed… and they were happy to report that while Ellie may not have the expected response to noise, her ability to hear looked just fine.  Whew!  On that day, I was thankful that Ellie wouldn’t have to go to school with sign language as her primary means of communication.  Bahaha – how the tide changes. 

She’d go on to have other sedated hearing exams, and each time… pass with flying colors.  Yahoo!  And once trached, we were working to teach Ellie American Sign Language (ASL) on a daily basis.  By age two, she had a vocabulary of 20-30 signs.  By three, she had about 120 signs.  Now… just a few months later… it seems that her sign vocabulary is expanding rapidly.  And you know what?  Those little classmates of hers… yep, they’re learning sign language, too.  They’re not having any issues communicating with her.  Score! 

So on post #6, we’ve covered four more specialty areas for Ellie… we’re almost through our list of medical providers.  And we’re now half way through our Days of Christmas posts to this blog.  Thank you for sticking with me through these.  I hope you’re maybe learning a thing or two… maybe you’ve found something useful to share with someone else… or maybe you’ve just enjoyed the pictures as we go along.  No matter what, I appreciate you following along – and I hope you’re staying warm – it’s blustery in Ohio today.

Ellie prepping for her first sleep study.

Ellie during a sleep study over year ago - when we were trying to wean her off the vent.  

She's now had 7 or 8 sleep studies... and another coming next week.

This was Ellie five days after her major tracheal reconstruction surgery - Summer 2016.