3 years, 2 months, 16 days (and then some)

It has finally happened.  You've been gone longer than you were here.

I miss you every day my beautiful boy.

Mitochondrial Disease Awareness Week 2021

 World Mitochondrial Disease Awareness Week is September 19th - 25th, 2021, which makes today Day 1.

I woke up realizing that I'm wrapped in one of Lennon's old blankets.  He is never far from me.  There has not been a single day where I haven't thought of him. I will always be his mama.  

The grief is no longer a battle, it is more like this blanket.  It is warm, inviting, comforting, and filled with memories of snuggles.  Sundays were always my favorite with Lennon.  We would get up before everyone else in the house and sit together while I drank my coffee.  When he was healthier, we would sit outside and listen to the windchimes.  As he became more fragile, we would sit inside in the rocker or I would just stand beside his bed and rub his feet. A lot of times I'd put on Billy Joel or The Greatest Showman soundtrack.  

His siblings still talk about him all the time.  They imagine what he would be like.  They tell all the fun stories about how ornery and cute he was.  The "remember when" conversations are my favorite.  He was (and is) so loved!

It has been 844 days or 2 years, 3 months, 21 days since he took his last breath in my arms.  It doesn't seem possible, but I know it's true.

Please take some time this week to share a fun story about Lennon.  (There are lots to tell!)

Thank you all for reading and being a part of our journey.

One Year

This month has been hard.  Those words are an awful understatement.

It's so strange to think that Lennon has now been gone longer than he was healthy.  We got 11 months of "normal" with him.  That vision was shattered on Valentine's Day 2017.  I remember his rag-doll body before they got him on the flight to Wichita.  I remember wondering if we would be bringing our boy home.

Over the next two years, there were many times that I wondered if this would be the last flight, the last PICU stay, and then it came.  We weren't ready.  We couldn't possibly have been ready, but we handled the day with such grace.  I look back on May 30, 2019 with so many conflicting emotions.  It was beautiful and heartbreaking...  I was so proud of my family, especially of my little man.

I've spent months looking back at my last picture with him... no more intubation, no more EEGs, just the regular monitors, and that damn DNR bracelet.  He was so handsome, even at the end.  We had given him one last bath, fixed his curls, and put him in his birthday outfit.  "I've Got This," his shirt said.  To make it even more beautiful, he had that grip on my shirt.

Little Buddy, since you've been gone, we've raised money to help other families fighting big battles.  Lennon's Legacy Foundation has been able to offer our support to three so far.  We are working on getting our flyers out and hope to plan more fundraisers once this COVID mess calms down.  You are still changing lives.

We miss you every day.  We still find evidence of you in the house when we don't expect it... socks, paperwork, stains from your meds and feeds.  We think of you whenever the WiFi isn't working or when the trash can gets knocked over.  We replay the sound of your laugh and share "remember when Lennon" stories.  You are loved.

You are loved.

You are missed.

You are remembered.

You are the person who helped me become my best self.

"I want to hold you for the longest time..."

The Little Things

I haven't posted for a very long time.  It is so hard to put into words how much I miss my little guy. 

I have mixed feelings about social distancing and Covid-19.  On one hand, I've found myself wishing this would have come last year so that I could have been at home with him each day during his last few months.  On the other hand, I would have been so incredibly worried about his health and safety.

I have a different lens than most people.  I've seen firsthand what a respiratory illness can do.  RSV, a very simple and common virus, caused so many hospital stays, it's ridiculous. I can't imagine how quickly coronavirus could have ended his life. I've seen my child intubated, dependent on a ventilator, receiving CPT and breathing treatments, and heavily sedated.  Watching the news sometimes triggers memories of those worst moments in the ICU.

Coronavirus has a lot of people thinking about those little things we take for granted.  I started noticing those things long before social distancing became a thing. Yesterday, my Timehop shared a great, yet bittersweet, memory with me.

This was the last time Lennon got to sit outside and just enjoy the fresh air.  It was a little chilly, and I was worried that he would get too cold, but I'm so glad I took him out.  I had no idea that this would be his last opportunity.  He used to sit with dad and me while we drank coffee almost every morning.  Miss Nikki would take him out and do his stretches with him that first summer.  It was something that was just a part of our routine and I miss it so much.

Since my last post, I have be acutely aware of how many pictures are part of "the last pictures."  I noticed, even then, how many times I was passing up opportunities to take his picture because he didn't look like his best self.  We could see his pain and struggles, so that's not how we wanted to remember him.

This picture is one of my favorites, but when it showed up a couple of weeks ago, all I could think about was: "If we'd only known that there were 2 months left with him." Life is hard without him.  There's a hole in all of our hearts, and even though things are going to grow around that hole, sometime a hard freeze (like the one we're experiencing outside) can stunt that growth.

I miss the little things...

I miss hearing his name, rubbing his feet, and washing his hair.  I miss helping him choose his playlists, him giving Nikki dirty looks when she made him work, and the way he'd smile when dad walked through the door.  I miss his superhero outfits and always being shocked by how BIG he was getting.  I even miss his alarms and prepping his meds sometimes.  (I still can't bring myself to clean the ceiling where one of his 60 ml syringes splattered everywhere.)  I miss hearing his siblings say "baby brother."  Now that we're home there is a lot more time to get lost in that grief, which is far from a little thing.

As always, share your memories of our little guy with us.  Send us pictures if you have them.  Remember to be kind to yourselves and to think about the well-being of others as we face this new virus.  Keep in mind the special littles like Lennon. Wear a mask, wash your hands, stay connected with your loved ones.  We will get through this, even if it means there will be a new normal.  That's a "little thing" that our family has grown quite accustomed to.

  

Goodbye 2019

I leave this year with mixed emotions to say the least.

I cleaned out a junk drawer tonight and found an abundance of hospital bracelets.  I used to stash them as a reminder of what we overcame.  I know these frequent visits are a reality for many families, and I hope that we can find them soon.  It's going to feel so good to have Lennon's Legacy Foundation start reaching out.  In the new year, we are going to establish community partners, connect with families, and start distributing care packages. 

We promise to do our best to honor your memory and make a difference for other children and their families.  We love you and miss you, Len Len.

As this year comes to an end, I'm afraid of closing that chapter.  I feel guilty for letting go.  It reminds me so much of walking out of that PICU room with you still laying there.

You're no longer bedridden and bound to a rigorous medical regime, and I'm so grateful for that... but...

Even if I pulled the broken heart from my chest, you'd still be msising. My brain would still think of you. My arms would still miss your weight. My fingers would still long to comb through your curls or touch your sweet face.  

I'd still smell the baby wash and your amino acids. I'd still hear your alarms in the middle of the night, or your "snoring", or your laugh.

You are ingrained in every cell of my body, just like the mitochondria were in every cell that failed in yours.

I miss you son.

Awake, asleep, happy, sad, morning, night, alone, surrounded...

I miss you.

Lennon's Legacy Foundation Bake Sale

Yesterday, we had our first successful fundraiser for the foundation.  With the support of our community, we raised over $1,000. Our dream of supporting families of medically fragile children in southwest Kansas is becoming a reality!

The funds we raised will be used to create and distribute care packages for families who are having to transfer from local hospitals to larger facilities like Wesley Children's Hospital and Via Christi in Wichita, KS, or Children's Mercy in Kansas City.

Those of you who knew our family before Lennon passed probably remember the many, many times we were flown to Wichita so that he could receive care in the PICU from his neurologist, geneticist, and the intensivists.  No matter how often I prepared my emergency bag, I always forgot something. Most often it was things like extra socks, deoderant, chapstick, and hair ties.  Luckily, Wesley was almost always stocked with gift baskets from generous donors.  They also had the Ronald McDonald room down the hall that often gave out toiletries like shampoo, soap, toothbrushes, and toothpaste.  Unfortunately, not all hospitals offer these supports, and until you learn the ins and outs of each facility, you're more than overwhelmed just trying to figure out your child's care.

We want to make things easier for families by meeting them at the hospitals before they transfer.  We'd like to send them with care packages that include those basic necessities, some comfort items, and ideally gift cards so that they can eat and have gas money to get home.  We are hoping to partner with local hospitals so that these care packages are on hand ( or can at least be delivered) in these critical times.

Thank you, thank you, thank you to every person who volunteered, donated, and/or promoted this event.  Because of you, we will be able to make a difference!

Raising money wasn't the only great thing about the fundraiser.  We also got to share our story and the mission of Lennon's Legacy Foundation.  I was so happy to hear people tell us that there is a need for our services.  We had several families talk about their experiences with emergency care and chronic hospitalizations.

I also got to visit with one of the founders of another non-profit organization in Dodge City, Perfect Fit.  (Check them out here: https://www.perfectfit.foundation/home/)  We agreed that there would probably be a lot of overlap with our families, so talks of a partnership beginning.  This is a wonderful thing!

We talked about the isolation that families feel, the lack of awareness, the stigmas surrounding our children, and the need for support for children and families.  We are very proud that southwest Kansas has been recognizing the need for organizations like ours, and we are excited to see what the future holds!

6 Months and Your Legacy

Baby boy,

I carry you with me everywhere, but I miss rubbing your feet in the mornings before work.  My heart still aches when I peek around the corner only to see that you're not there.  Your brothers and sister talk about you all the time.  Dad and I hold in all the words we can't say without shedding tears until they spill over in spite of our careful avoidance.

Processing our grief has proven very difficult.  The past 6 months have been a series of contradictions. Time has flown and dragged, we are happy and sad, everything has changed and stayed the same.

This week we finally realized that Lennon's Legacy Foundation actually has two purposes: the first is obviously our mission statement, but the second is to help us keep your memory alive and process our grief.

There are so many people who say, "if there's anything I can do, let me know."  You can help us make the foundation successful.  Help us remember Lennon. Help us to ensure that everything that he went through will help other families.  Help us provide support to those who have to manage those frequent ER trips, the isolation, the fear, and the uncertainty that comes with caring for a medically needy child.  If we can support families during those hard times, they will have more opportunities to enjoy the special moments.

Lennon's Legacy in Action

We had a lot of ups and downs during our time with Lennon. It often felt like we couldn't catch a break. If it wasn't a late shipment of meds, it was another hospitalization, or an issue with billing, our own payroll, or something broken at home.  There were even a few times that we found ourselves with car trouble...

A broken window on a vehicle is a pain for any family; but for a family that constantly feels the pressure of having to be on top of things all the time, it is even worse. 

Our nurse and friend "Miss Nikki" watched us go through these minor irritations over and over again, so when she learned about a family with a broken window on their van, she spoke up right away.

Knowing the frustration of dealing with vehicle repairs and constantly needing to travel for doctor's appointments, we wanted to move quickly to help this family.  We started making phone calls that afternoon and by the next morning were able to come up with a solution.

With the support of two community businesses, Discount Glass and Dodge City Salvage, we were able to locate and arrange for the installation of a new window. The family was then able to schedule the installation at their convenience.  I know it might sound selfish, but it gives me a sense of peace knowing that they had one less thing to worry about this week.

Although this is not what we had originally talked about doing for Lennon's Legacy Foundation, our mission does say that we are going to support the families of medically needy children. We hope to take the pressure off families so that they can focus solely on the care of their children.

100 Days

It's been 100 days... Last night was the first that I dreamed about my sweet boy. I got to hear his laugh again. 💚

Yesterday we learned of a family in need. Lennon's Legacy Foundation is working with community partners to provide them with support. Updates coming soon.

Looks can be deceiving

I've had this post saved in the drafts for nearly two months.  I wasn't sure if I should post it, but since I still feel these things, why not?   (The additions from this month are in blue.)

*****

It was an offhand comment that wasn't even said to me, but it was about me. The person who said it probably didn't mean any harm, but it has been wreaking havoc on my heart.

"She looks like she's doing fine."

Oh honey... I am not fine.

I may not be hiding away from the world, but I am not fully present.

I may be out and about with my family, but the greatest part of me is stuck in the empty spaces of my heart, sifting through memories.

You might see me smiling and laughing, but every memory is tinged with hues of sadness that my baby is not able to share those moments with me.

I guess my grief doesn't present itself in the way that some would expect.


I am not fine.  (WE are not fine!)

Nobody prepared us for life without Lennon.  EVERYTHING reminds us of him.  We still find ourselves walking by the place where his bed was to kiss him.  I still hear his alarms at night.  Nikki still drives to our house in the morning.  We try to stay asleep to see him in our dreams. It has been three months and we still look and listen for him... only now we make due with what little remains.  

It's not fulfilling.  Those pictures aren't him.  His clothes arent him.  His toys and books aren't him.  What I wouldn't give to rub his feet or wash his hair one more time.

There is a huge empty space in our house, our minds, and our hearts where he belongs.  It has even made us question whether we are still cut our for our careers and hobbies.  Our priorities are definitely shifting.

The kids will ask me, "Do you think Lennon is walking right now?"  "Will you read us what people wrote in his book?" "Do you remember when Lennon ___________________."  I catch them just looking at his shelf, reading his baby books, playing with his toys, talking and crying with each other.  It's bittersweet and beautiful.

It seems to me that grief is often met with misunderstanding.

You're grieving too long or not long enough...
You're crying too much or not enough...
You're traveling too much or not enough...
How could you go back to work so soon?
How can you stand to stay at home without him?
You need to box his stuff up so it isn't a constant reminder.
Are you boxing him up so that you can forget about him?
You should _____________.

The next time you see someone grieving, whether it's death or a different kind of loss, support them.  Offer to listen, or just to sit and be present for them.  Better yet, ask them if there is anything you can do to help.  Don't make their process about what you think they should do... after all, it is their grief.  As long as they are not doing harm to themselves or others, let them grieve in their own way and their own time.  Please don't make assumptions either.

September 3, 2019

Billy Joel, Bunnies, and Bad Dreams

I don't care what consequence it brings
I have been a fool for lesser things
I want you so bad
I think you ought to know that
I intend to hold you for the longest time


I sang that song countless times to my boy.  I remember him being upset before his g-tube placement surgery. He was hungry and they were about an hour behind schedule. I wasn't sure if he was going to be able to relax before the procedure, but I started singing anyway.  No matter how irritated he was, that song calmed him down.  We would sit and rock, or I would stand at bedside and play with his curls.  It never failed.

Lately Billy Joel (and quite a few others from Lennon's playlist) have found their way to us. Twice in the last week Miss Nikki has sent me Snapchats of Lennon's songs.  Music has always found a way to speak to me, but it's even more intense now.


We are always thankful for the reminders of Lennon. Even when our memories leak out and streak our faces.  When summer first started, we'd notice bunnies in our yard.  We'd see them every morning and night when we walked. We'd see them when we were driving around town. We'd see them in places that didn't even make sense (Walmart parking lot?)  

Maybe it's just a coping mechanism, or maybe it is a coincidence, but it helps us get through the day.  


Our first month, things seemed to move forward, even though we weren't sure what we were doing.  The last couple of weeks, time has seemed to stand still.  It feels like he has been gone for a LONG time.  His life was so short and the days without him seem everlasting.  We dream about his last day over and over again. We relive the morning after, waking up knowing that he's gone.  

It's been just over 2 months, and we're still not sure how to do this.  

My heart hurts for all of us.


Thanks you to everyone who has checked in, shared photos, asked how we're doing, or offered their support.  The times we do best are when we're surrounded by friends and family.

Huge News!

We are officially a 501c-3 foundation! More details to come soon!

It's not just me...

Shout out to those of you who have taken the time to show your care for my husband and kids.  I'm not the only one who suffered a loss.  They need the love, hugs, and encouragement just as much as I do. 

Their happiness is genuine, but those moments are always bittersweet.

You'll just know

One of the most imperative questions I found myself asking throughout Lennon's journey was, "How will we know when enough is enough?"  Everyone told us that we'd "just know."  I remember the moment that happened for me. 

Wednesday, May 29th, 2019

Dr. Haws woke me up and said, "He's over 150."  I still wanted to fight, but it was at that moment when I really started thinking that we might be at the end of the road.  There was still an out, we were waiting on bloodwork.  Surely he would test positive for some kind of virus, he always did... but there was nothing viral or bacterial to be found.  His body was simply shutting down.  We decided to intubate and I asked dad to bring the family to Wichita. 

Intubation did not go well.  His oxygen saturation rapidly dropped into the 60s on the first attempt.  Dr. Haws has a terrible poker face and her concern was immediately visible.  The second attempt was better, but there was a bunch of tracheal aspirate (fluid that was sitting in his airway) that came up when the breathing tube was placed.  I was giving dad the play-by-play as it happened, and he texted, "Did we make the right decision?"  The wheels were spinning for both of us by this point.

Around 10:00, Dr. Smith came in to do rounds.  He informed me that Lennon's right lung had started to collapse, so using the ventilator would provide support for the lung to open back up.  It would also help get his CO2 level back into the normal range. I called Nikki and my mom. Even though there was talk of going home, it was very conditional.  We knew that our options were all less than desireable:  CPAP 18+ hours per day, ventilator, or back to oxygen and call hospice. 

The rest of the day went fairly well, but that evening seizures like we had never seen started. He was jerking both of his arms up by his face and then his eyes would cross and roll.  Ativan took care of that fairly quickly, but they had to give him both Ativan and Presedex to keep him calm enough to leave the tube alone.  

Thursday, May 30, 2019

In the morning our nurse told me that there had been staph bacteria found in his secretions.  She also let me know that Ativan had to be given at 3:00 and 6:00 to keep him from being agitated.  He was pissed.  He was tired.  He was letting everyone know about it too. After rounds, Chris and I sat down and talked more about going home or not.  The words had finally come out of our mouths.  At first we decided to wait until Saturday to give his lungs time to recover before extubating.  I remember looking at Lennon and then at Chris and asking "What for?"  Why would we go home just to put him through this all again?

The PICC line had taken almost 4 hours and two attempts to set, they had to try twice before getting the breathing tube placed, breathing treatments, percussion vest, being woke up every 2-4 hours for some kind of poke, prod, or shake... how could this be a life worth living?  Nobody could even tell us if going home would be for hours, days, or weeks.  (They weren't even willing to say months at that point.) I felt like a failure and a traitor, but I "just knew" that Lennon's life had become labored.  It was hard work for him to just be present.  

After rounds, Chris was the brave one.  He chose to bear the burden of asking to speak to the doctor about end of life procedures.  Hearing the words out loud stole my breath.  I felt like someone had taken a hammer to my heart, even though we both agreed.

My heart goes out to anyone who has ever had to make this choice.  Lennon's death certificate listed many things, but the worst one for me was "Withdrawal of Care."  That is NOT what happened.

You see, Lennon went out with several long, peaceful hours of snuggles from his siblings, grandma, mom and dad, and of course Nikki.  Nikki and I bathed him, making sure to get his beautiful curls back in place, and then dressed him in his Batman outfit.  His shirt read, "I Got This."  He fought like a soldier.  He was breathing on his own, listening to his favorite music, and getting his big kid version of pass the baby.

A little after 9:00, we sent Dallas, grandma, and the kids back to the hotel.  As Chris walked them downstairs, Lennon's stats began to drop.  By the time he got back to the room, we asked him to pull up a chair.  I was in the bed with Lennon in my arms, dad sat over the rail, and Nikki sat near his feet.  We told him we loved him and how proud we were, and held him as his spirit left his body... Like everyone said, we "just knew" when that moment came too.

There is much more to this story that is too hard to put into words.  It was the most beautiful and devastating thing I have ever experienced. I was barely able to get this down, even after stopping multiple times to care for my leaking face.  It's been over a month and I still feel the weight of him in my arms and the weight of the choice that we made.  I can only hope to honor my little superhero by sharing his story and advocating for others like him.

One Week

About this time one week ago, we were walking into a hotel room to kiss our big kids goodnight.  I curled up behind Christian as he was racked with sobs, knowing that Lennon was not coming home with us.  A few minutes later, I curled into Chris' armpit and let exhaustion drag me to sleep.  I'd just survived the longest, hardest, most sacred day of my life.

Nobody told me how easy and hard it would be to go on without Lennon.  No one could have prepared me for the little things that would bring me to tears while the big things ended up being no big deal.  This week has been full of conflicted feelings and words that aren't big enough to describe it all.

Why does the yellow stain on the ceiling get me more than taking down his hospital bed?  Why did the clean shirts not phase me while his dirty sheets and clothes in the laundry pile brought me to my knees? We cleared out most of his equipment without any tears, but his folder, his pill box, and his neck collar made my heart hurt.

There is a gaping hole in my heart.  I can feel the ache, the wind knocked out of me, the ceaseless yearning for him all day, every day.  And yet, I'm able to genuinely enjoy the time spent with family and friends. My only sadness is wanting Lennon to be here too.

3 years, 2 months, and 16 days was not nearly enough time.

Celebrate

Let's Celebrate a HUGE Milestone!

In 2019, we have had ZERO transfers to Wesley Children's Hospital for emergency care.  (Yes, we were there in January, but that was for a CPAP trial.)  

Lennon's sleep study has been moved to April 17th.  Hopefully we will have more support for him with either CPAP or BiPAP when he's sleeping.  This should also help increase his lung capacity and improve his ability to breathe independently.  We would love to have him less reliant on supplemental oxygen.

The process has been started to get Lennon an adaptive carseat.  He needs a great deal of head support when we travel, so having an adaptive carseat means that positioning will no longer be a struggle. 

I'm really excited to see how long Lennon can go without another PICU stay.  I won't say that these last few months have been easy or worry-free, but it has been wonderful keeping him home.

Picture for attention. 

Check out his new haircut!

Pro-Tip: Low Sat? Check the humidifier attachment.

You all know that were are DILIGENT about checking equipment, watching vital signs, and noticing when things are OFF with our little buddy.

Wednesday afternoon/evening Lennon's oxygen saturation wouldn't stay above 90% consistently.  We checked the probe on his oximeter, changed it to a different spot, and tried it on my finger (where it read perfectly.)  Next we checked his tubing, the flow on his concentrator, the lid on his humidifier, his cannula, his positioning... I think you get the idea.  We had him cranked to full-blast (5 liters per minute) oxygen and finally found a spot on his left side that kept him over 90% most of the time.

Thursday morning, his concentrator was still running at 5LPM, but he did just fine. Nikki was on top of meds, feedings, and treatments.  When he work up from his nap, he went back to the same chaos from the day before.  Not wanting to let him continue to struggle, we called for an appointment, got called back to bring him in ASAP, got transferred almost immediately to the ER, and almost got transferred to Wichita.

So by now, you're probably wondering why we didn't transfer. 1. His oxygen saturation was at 100%. 2. His breathing was improving. 3. His mitochondrial movements were slowing. 4. His seizures were not ongoing. 5. His chest x-ray showed no signs of concern. 6. His bloodwork looked amazing.  He got a 2 hour Argenine infusion (this is one of the amino acids that helps him produce energy) and we went home... where his breathing slowly deteriorated again.

You can imagine the headache I was giving myself.  WHY is he having issues if everything looks ok test-wise.  I was SURE I'd checked all the equipment.  So I started scrubbing, washing bedding, and rechecking equipment. I tried to sleep, but again, I woke up several times to desat alarms.  Around 5 AM dad asks, "Why do you think he did better on the tank than the concentrator?"  "Why don't you put him back on the tank?"  So we did, and what do you know... saturation was at 100%. Even as I backed the flow down from 4LPM to 2LPM, Lennon maintained 98% or higher oxygen saturation.

So I started checking everything again...

Humidifier bottles are attachments that sit on top of the oxygen concentrator. They're held in place by a thick plastic brace and a velcro strip.  Apparently they're very cheap and fragile too.  When I pulled the bottle out to check the connections and make sure that nothing was blocking the flow, I found a small crack. FACEPALM 🙈

Moral of the story- pull the bottle all the way out and check the integrity of the plastic.

I have no idea how it got cracked or how I would have been able to tell the difference but my lesson has been learned.

Can you tell which bottle is cracked? 

Videos for Comparison

 

So, which canister was broken: the top with the green tubing or the bottom with the clear tubing?

It's Been Awhile

I didn't realize it had been so long since my last post.  In some ways, the strain of the past year has caught up with us; but in other ways, we've just grown comfortable with our routines.

Since December, not much has changed.

Lennon did have a CPAP trial in January, which went well, but now we are working on getting a mask with a better fit.  We are still waiting on a sleep study to confirm his obstructive sleep apnea.  Children's Mercy called today and gave us their "first available appointment" on August 21st.  They've also added us to the cancellation list, so hopefully we get in sooner.  He has become completely reliant on supplemental oxygen wheras in December he still had some days on room air.

In February, Lennon got his wheelchair!  This is a game-changer not only for outside the house but also for just being at home.  When we're traveling, Lennon and his equipment are easy to transport.  He's well supported, and the tray under the chair can carry his suction machine and oximeter.  There's a frame for his oxygen tank and the handles adjust so that they're comfortable for both me and dad.  When we're at home, this helps Lennon to be able to sit with us and have a tray so that he can play while being supported.  It's a great alternative to his stander and his bed.

  

The greatest thing about February was not going to the hospital!  For the first time EVER, Lennon was home on Valentine's Day.  He did test positive for influenza A and strep throat though.  With the tremendous daily support of Nikki and the family, we were able to stay home and conquer the illness without hospitalization.  (Sorry PICU girlfriends... mom wouldn't let him keep your dates.)

In the last week, We've been to Children's Mercy in Kansas City for the sleep study consultation and to Wichita for routine follow-ups.  The Kansas City trip was long, but having the wheelchair definitely made it easier to manage.  They also had carts to take supplies from the parking garage into the hospital.  It's a little bit ridiculous how much stuff has to go with us, especially when we're trying to charge batteries for a long drive home.  Our Wichita appointments all went well, resulting in one minor adjustment in medication and plans to follow up in 3-6 months.

Health-wise, we've seen some definite improvments over the last few months.  Lennon is not vomiting nearly as often, even when he's sick.  He's having regular bowel movements now that we've figured out how often to provide support and which combination of methods will actually result in a stool.  Lennon's also lost a little bit of weight, which we think is helping his breathing.  To give some perspective, he went from the 14th percentile for weight in April 2018 to the 64h percentile in August to the 97th percentile in December.  His rapid weight gain was needed, but it was also hard on his respiratory system.  Since December, he's lost less than half a pound, which puts him in the 94th percentile for weight.

Today was our last home visit with Kim Peterson with Arrowhead West.  Since Lennon is turning 3 tomorrow, (Don't ask me how this happened!) he's being exited from the Tiny K program and will start to receive services through Bright Beginnings Early Childhood Center.  Kim has actually been with Lennon almost 2 years.  She came to us after his 3rd hospitalization when we were concerned about blindness.  She, like us, remembers him being a rough and tumble, knocking over trash cans, splashing in the toilet little boy.  She was with us through the genetic testing, the official diagnosis, and graciously rescheduled many home visits due to hospitalizations, illness, and simply sleep.  I've loved working with Kim as she brought Lennon new toys and introduced us to other providers who've given additional support for him.  I'm so glad that Kim will be helping with our transition to homebound services with the school district as well as his first IEP.

A few final thoughts:

• We are starting to have conversations about our next Mito awareness / fundraiser event. (Thanks to Chris Self for keeping us going in that front!)
• Some of you have asked how you can help:
• We NEED to find attendant care.  Vanessa moved and my mom will likely be going to Colorado to work for the summer again this year.
• If any of you are experts on "Tidying Up" we need your help!
• We use Amazon for many of Lennon's supplies. Check out his list here: http://a.co/bs7iDS9 
• Let us know if you're interested in helping out with the big kids when we have appointments or hospital stays.
• Lennon's Legacy Foundation is currently registered as a nonprofit organization in the state of Kansas. We are still working on our business plan and IRS tax exempt status.  If you're interested in being on the board, please let us know!

     

Seasons... a quick update

I'm sure you've noticed that we took a considerable break from the blog.

To every thing there is a season... and some are harder than others.  In the periods of waiting and watching, it is hard to provide updates.  We are well-settled into our routines now, but we still wait for answers from specialists.

Throwback Thursday

2016                                     2017                                     and           2018

Last month during our 2 day trip to Wichita, we saw the cardiologist, neurologist, pulmonologist, geneticist, and dietician.  We are hoping to have a sleep study scheduled soon and also got Lennon measured for a custom wheelchair.  These processes are slow-going.  There is a lot of waiting involved while insurance decides what and when they will cover treatments, tests, and equipment.  Meanwhile, we (parents, family, nurse, therapists etc) try to figure out how best to support him in the meantime.

December 5th, Lennon flew to Wichita for possible pneumonia.  Either he had it and the antibiotics knocked it out right away or what they saw on the chest x-ray was residual scar tissue from prior aspirations. Either way, he was doing much better after a couple of days, so we came home.

Tomorrow, we travel to Wichita again.  This time we will meet with the gastroenterologist and hopefully figure out what is going on with the vomiting and lack of bowel movements.  (Sorry if that's TMI.)  Later in the day, we will see Dr. Beltran (geneticist) and Dr. Welch (neurologist) for follow-up appointments.

In happy news:

1. A miniature family reunion is in the works... :)

2. It's Winter Break! (No school for mom or the big kids until January 7th.)

3. Lennon was nominated for a TinySuperheroes cape and has received enough donations to rush his order.  https://tinysuperheroes.com/squad-super-lennon-k/ 

Saturday morning thoughts

Saturday mornings are great for thinking.  I brew a pot of coffee and enjoy the quiet while most everyone is still asleep.  To be honest, the only reason I got up so early (5 am) is because someone decided to kick his oximeter probe off his big toe. We listened to music for awhile, snuggled, and even did some dancing in the kitchen.  :)   

Of course that was before the vomit and the suctioning, which has become a pretty regular thing.  But we live for those tender moments between medical needs.  Since then it's been more suctioning, dressing, bathing, giving meds, venting the tube, monitoring vitals, and trying to figure out the best course of action.  Add in a splash of looking at old pictures and researching mitochondrial disease and treatments and you get the full picture. 

Have you ever felt like you're at the top of the rollercoaster just waiting for that last click before the plunge?  That's kind of what it feels like with our little guy.

No stool- click
Coughing- click
Elevated heart rate- click
Low O2 Sat- click
Vomiting or posttussis emeisis- click
Hiccups- click
Increased myoclonic movements- click
Fever- click
No nap / too sleepy- click

It is hard to live your life constantly on watch, on edge, and for Lennon to constantly be on a monitor or feeding tube.  October was hard for all of his caregivers.  Even the ones who are paid to do the aforementioned things.  We are not able to determine why he is having such difficulty lately.

Next week we have four appointments in two days.
     Seating clinic- fitting him for a wheelchair or stroller
     Neurologist- check levels and adjust medications
     Cardiologist- address elevated heart rate and the implications of seizure/stroke events on his heart
     Pulmonologist- address the retractions and concerns of aspiration with more frequent vomiting

This still leaves us with questions about his digestive system.

We could really use some good news or at least some definitive (or evidence based) answers.  It is increasingly difficult to hear "we don't know why" from our specialists, even though it is true.  Knowing what to anticipate with Lennon's health would make it much easier to address the bigger questions that have been weighing heavily upon us.

In April they asked us some really difficult questions, and now our providers are continuing to push us to make drastic changes.  We also feel the pull from family to consider a change of scenery.  Honestly, if we can't come up with a better plan for managing Lennon's health and keeping him well, we have to be closer to medical providers who can treat him quickly and effectively.

Yes, I think moving is a good idea. No, I do not want to go anywhere.  I am afraid of making the wrong decision, of putting undue stress on the Lennon and ending up in another hospital stay,  of uprooting our entire family, of giving us temporary relief with long-term negative consequences.  And then there's the consideration of time... because I'm pretty sure we are past the "if necessary" and to the point of "when are we doing this?"  But how long do we wait to see if he does better or to start applying for jobs and housing in a new place?  How do we even decide where, much less when?

7 hours of coffee, research, and care later... I still don't have the anwers.