Tuesday, August 15, 2017

the Brothers

This blog is all about Brayden.  But what about his older brothers, Carter and Luke? 
How is it to be Carter and Luke?
My heart has been heavy for them lately.  In their short lives, they have seen and heard, had front row seats to very serious and traumatic events.

As Brayden’s big brothers, they had to quickly learn that life is not about them.  They have seen their brother in very dire situations, ICU, hospitals, tests, etc. 

They know how to operate the feeding pump, pulse ox, and Brayden’s other machines. They know how to handle Brayden’s seizures, poor breathing, projectile vomit (even with blood), hold gauze over open holes in Brayden’s body when tube comes out…all have become somewhat of a disturbing norm to them but nonetheless it can add chaos to a day.

Their life always has a level in instability.  Many years they have watched their parents rush off to the hospital or spend days with doctors, not quite knowing where they would end up, whether at a neighbors or in the ambulance with their brother.  Not knowing when anyone would be home and learning to be self sufficient.

Even when not rushing to hospital, there is always a chance for instability within the house.  A simple example, I was loading Brayden so I could take the boys to practice.  But as I was loading, Brayden’s feeding tube popped out…which delays leaving and possibly making them late for practice.  Many nights they cannot be loud, have friends over, etc. because Brayden needs to a quiet environment.  When Brayden does come out with us, we always have an exit plan or a plan in case things go sideways with him.

Plans constantly change, vacations not taken, events not attended/adjusted but we still try to find fun for them and keep their routine as best as possible.
The boys handle people constantly in and out of our house who are part of Brayden’s care (some of which have been good and some have not).

Brayden’s needs trumps all others.  Fair or not.  Every bit of their life, has to go through the filter of Brayden.  We try to not make it seem like that is not the case but there is just no way around it.

They have seen (most often than I care to even admit) their parents completely depleted, exhausted and checked out because of dealing with the heaviness of Brayden’s medical events and needs.  They have seen fear and sadness in our eyes and in our countenance.

They know the seriousness of life as we have had discussions with them about Brayden’s health status. 10 years they have been a part of their brother’s roller coaster.  And now, as we enter a new phase of Brayden’s care in the palliative path.
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Then in the last couple of years Carter and Luke have seen and heard too much beyond just Brayden’s needs.  Things that will mark their childhood and how they see life and death. Just how many hard conversations have we had with them?!

Jeremy’s mother.  Carter and Luke realizing that their dad found his mother and we had to rush to the ER to help in some way.  Then Jeremy spent the next several (many) months rushing to find her, talk to her and to check on her.  Leaving Jeremy and his siblings in a constant state of concern and worry. Carter and Luke have seen their father physically collapse from those events.  Not even two years ago, Jeremy got the phone call that his mother died.  Carter and Luke were standing right next to him as he heard the words from his father.  Jeremy rushed off to his parent’s home.  Carter and Luke knew immediately what the call was about because of the months leading up to that day.   They found out the dramatic, awful details of the past several months (not by our choice, we tried to soften the details).  The loving grandmother that they saw many times in a week, was gone and even the previous months, she was just not herself.  Depression and suicide is now part of our family story and words they know all too well.  Since then, every holiday, birthday and event are now different since their grandmother was the center of the Jenkins activities.  The ripple of effects are constantly around.

Our house fire and rental house.  Being displaced for several months, the chaos and troubles that it brought.  And if I went into any detail about it, you just would not believe it…if anything could go wrong with the process and the rental it did.  It was awful.  A home should provide safety and comfort was just not happening.

Carter and Luke watched as other families have lost their child or loved ones, been to services and seen those moments.  People that had been a part of their lives.

This summer the boys and I planned to have a day with my brother and his family.  We planned to meet at the zoo.  As we packed the car that morning, I got a message that their 3 week old baby was up all night and they were taking him to the ER; seemingly nothing to concerning but wanted to have him checked.  The boys and I decided to still head to the zoo, thinking we could pick up the baby’s older brother and/or still see them either for lunch or at their home after they saw the doctors.  About an hour later, as we were driving to DC, I got a phone call.  It was my mom, screaming and sobbing that baby James had died, without cause or explanation.  I had to pull the car over on the highway, sat and sobbed with my mom, my boys sitting in absolute silence…they have heard that kind of phone call before.  I attempted to gather thoughts, get back on the road and figure out the next steps.  The following days were hard.  Carter and Luke saw their normally fun-loving, funny, joke-cracking Uncle Matt and Aunt Betsy broken in a way that is indescribable.  

Just over a month later, Jeremy had a surprise for my 40th birthday.  He had all the boys situated for about 24 hours, so he and I could get away for a night.  As we were settling in to our hotel, my parents were in the car with Luke, heading to Carter’s basketball tournament.  My father got a phone call.  His father passed away.  Luke heard it all.  Luke’s healthy Great-Grandpa-at-the-Beach, had just seen his doctor a few days before and got a clean bill of health.  Luke riding with his Papa and Mimi as they had to turn the car around.  Jeremy and I left my birthday get away and headed to get Carter from his basketball.  Carter seeing us arrive, he obviously knew something was not right.  After his game, we explained to him what was happening.  We headed home so we could pack up and head to be with family. 
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In all of this, we have constantly talked to the boys about God’s plan.  The promise of heaven. It is hard to have those conversations with them.  Because, even as adults, it is hard to understand these events, let alone help your children understand.  Sometimes we just do not know how they are taking it all in.  Oh how much I want to protect their hearts, want their faith to grow and not be crushed by the seeing the hardest parts of living in such a broken world.

As we make decisions for Carter and Luke, moving forward, trying to help find the best path for them, I ask that you pray for them and for us.  So much of our efforts have been in different directions over the years. The more people that look out for them, pray for them, love them and mentor them, the better, especially as we enter the teen years. 

Thankfully Carter and Luke have been handling all of it quite well.  It seems as though their hearts have been protected in some way but there are times that they just want to be care-free kids.

And please pray for our family and friends that are grieving the loss of their children and loved ones.

Trauma and grief changes everything.

Proverbs 3:5 Trust in the Lord with all your heart and lean not on your own understanding.

Wednesday, August 9, 2017

Brayden's Health Update

Before getting into any details, I just have to say that Brayden is doing well (at least his version of doing well).

Brayden's spring time, left us in a scary and overwhelming position of having discussions and attempting to make decisions that no parent ever wants to address when it comes to the care and medical care of your child.  Yes, all of it was a long time coming but I did my best to push it away as long as possible.

Currently, Brayden's not-breathing/not-responding episodes have been few and far between.  Really going on about 6 weeks of no major episodes.

We still check his pulse ox regularly (take it with us too), haul around oxygen tanks (because I never want to be stuck with out a working one again).

Brayden did make it to ESY (summer school) some...not as often as I would like...and he was not home as often as he would like.

Thankfully, Brayden has been relatively stable for the summer.  We needed him to be.

And here is the cruel irony of this summer:

Brayden had a pretty bad bill of health.
Brayden's cousin, James, a three week old baby, totally healthy.
Brayden's great-grandpa, William Johnson, even though he was 94, had just seen his doctor and declared totally healthy (the man had only ever been in the hospital once in his entire life).

Brayden, whom we had been in discussion about DNRs, medical treatments or lack thereof, had a healthy summer, without any troubles.
James passed away, without cause or explanation, at the emergency room in a matter of moments.
Great-Grandpa, passed away at his beach home, seemingly in his sleep.

----

God called James and Great-Grandpa.  Why?  I just do not think we will know those answers on this side of heaven.

One day, we will see.  One day, the arc of our stories will all make perfect sense.  One day, we will trace the lines of our scars and find them to have fallen in the most pleasant of places, to see in them our great inheritance.  One day, we won't need to hope, nor will we need to be healed because we will be face-to-face with the source of both, the source of everything. Jesus.
And in the glory of His face, the darkest suffering and loss we have endured will face like shadows of daybreak.  Until then, the moments of releasing our lives into the hands of a God we cannot see are the closest to wholeness we will come on this side of eternity. This is our truest healing - the healing of our souls - and it sustains us when we wake up tomorrow to an unknown but hopeful new day.
- Hope Heal by Katherine & Jay Wolf

Monday, June 12, 2017

The Real behind the Facebook Posts

Over on Facebook, I tend to post the fun, light bits happening throughout the week.  Never quite seems to be the place to share the hard stuff, unless I post a link to this blog.

This weekend, my Facebook posts felt inauthentic.  Because behind those photos of fun, Jeremy and I were tired and stressed.

Friday night post: Great concert with Great friends.
     Truth behind those photos, started Friday morning.  Jeremy and I were driving Brayden to DC for an appointment.  On the way, we got a phone call from the middle school.  Carter was sick and needed to go home.  I may have asked, "Well, how sick is he really?! Because we cannot come get him." Then there was scrabbling, trying to find someone to pick up Carter and drop him at home.
     We made it to Brayden's appointment, Carter made it home.  We meet with 10 different people going over Brayden's medical history for hours, in extraordinary detail.  Hard conversations. Then off to the lab for a massive amount of blood work (which means too many sticks for Brayden).  Absolutely exhausting.  I will go in to detail about this appointment in another post.
     We headed out of Children's, since it was a Friday afternoon in the summer, that means tourists everywhere (for the love people, please use the cross walks and follow the signs) and lots tourist and commuter traffic.  Finally made it home.  Checked on Carter, who was rocking a temp over 102 (oops, sorry I made him go to school but he did have a math exam).  Our Ms. Stephie arrived to take care of Brayden for the night and now Carter.  Jeremy and I changed clothes because lets be honest after being in the hospital all day, you feel slimy.  Headed out the door for more traffic.  Ended up being an hour late to meet our friends.  On the way, Jeremy and I thought this night out could be a really good idea or a really bad idea after the day we had.  Thankfully the time out was wonderful but, boy the next morning we felt rather old and tired.

Sunday post: Basketball Camp for Carter and Luke.
     The day started early with Jeremy and Luke heading in one direction to a basketball tournament.  Brayden and I were taking Carter to a basketball tournament in another direction, since Carter was feeling much better.  I continually underestimate how much effort and time it takes to get Brayden out the door. I go to scoop Brayden out of bed so we can leave...but Brayden has soaked his diaper, chux, clothes and bed.  Our on time departure was not happening.  And if you know Carter at all, then you know he likes things to be just so.  Being late is not something that goes over well with him.
     The car was also packed with Carter and Luke's bags and gear for basketball camp since we would not have time to go home. Being gone all day, means I had to pack everything for Brayden as well (feeding pump, oxygen tank, meds, emergency bag with all the "just-in-case" things).
    Carter's team won.  Jeremy and Luke arrived at Carter's game.  Carter was still in the tournament and now he was going to be late to camp (did I mention how much he loves being late).  Brayden and I, headed out with Luke to take him to camp.  In a span of just a few hours, we were in VA to West VA to MD for camp.  Brayden was not having it, fussing started and was not stopping.  We arrived to camp, Brayden not having that either.  I was trying to check in Luke.  Luke was so excited to find his friends that his listening skills were failing.  Trying to get him to check himself in because there was not much space to maneuver Brayden's wheelchair around.  Asking Luke about getting his room key, he had no idea.  Asking Luke about paperwork needed or dorm location or other check-in items, he had no idea.  And Brayden is fussing the entire times so I could not concentrate well either.
     The campus for basketball camp has beautiful old stone buildings, which means accessibility can be questionable.  We spent about 30 minutes, going in and out of buildings, trying to find the elevator because we got many different "helpful" directions for others.  Finally made it to Luke's room (after being in 3 wrong locations)...over 90 degrees outside and Brayden still fussing.
     Carter being late to camp, I checked him in and thought it was a good idea to get his room set up so he could just head to the gym when he arrived.  Brayden did not like this idea.  But by the time Brayden and I made it back in the car, Brayden actually like the idea of being in the car and away from the basketball camp chaos.  Carter finally arrived with Jeremy, we handed him the camp stuff and he was on his way. 
     Brayden and I followed Jeremy's truck home.  Brayden was letting it be known, that he was not pleased with his Sunday.  And the only way we know how to calm him in the car, is it roll the windows down and blast music.  Over 90 degress outside (and I already started the day off sweaty from loading all the camp gear and Brayden) with the windows down, one hot steamy car ride home.
     We made it home, Brayden in his bed and he wanted nothing to do with me.

And the bonus for the day, our dog "found" a ground hog and left for our delight in the back yard when we arrived home.

Sunday, May 21, 2017

Take a breath

The past few months, Brayden has been sleeping 18-20 hrs a day, without much cause or reason.

The past few months Brayden has had severe apnea episodes during the day (not at night when we expect them to happen during deep sleep)...basically his brain forgets to tell him to breathe/exist.  He becomes unresponsive, even to the most obnoxious stimulus.  These episodes seem to come on quickly.  His oxygen saturation stats drop significantly.  We have to quickly attempt to wake him (which does not work every time) or hook him up to his BiPAP or oxygen.  Then it takes awhile for his oxygen/breathing to normalize. 

We sent video to the doctors.  Then we went in for bloodwork.  All of his blood work looks good.  All except the CO2 levels in his body.  They are elevated, not quite to a hospital-needed-level, but elevated enough to show there is a chronic problem with his breathing and his body not properly releasing the CO2.  Thus the likely reason for many hours of sleeping and the other apnea episodes.

Brayden's brain does not always seem to be sending him proper signals.  And now it is having an impact on his breathing. 

There is no intervention that we can do (or are willing to do) to improve his breathing.  We will continue to use BiPap and oxygen at home, while these provide him air, it actually serves as a constant annoyance to remind his brain to breathe.  Unfortunately, this is does not seem like something that will get better for him over time, it would get worse.  As for the amount of time that it would get worse, is very undetermined, it could be weeks, months, years. 

But we have crossed over in to a more severe/serious category with Brayden's health, as well as decisions that Jeremy and I would need to make regarding any (if any) medical intervention from here on out.

The last few weeks, Jeremy and I have been attempting to lay the groundwork for Brayden's undetermined future.  We have not shared much until now because we really needed to take in a lot of information, sort through it with his doctors and decide how best to handle it all.

We talked with Palliative Care at Children's, Brayden's pediatrician and neurologist.  All have given their honest opinions and helped lay out our next options.

Here is where we are thus far:
  • Brayden has been consistently having apnea episodes where he is in unresponsive.  We have been toting around oxygen tanks and often his BiPap machine, wherever he goes. We are trying to figure out the best way to manage the episodes, since they are happening several times a week. With oxygen or BiPap we will continue to use as needed during the day (he is on BiPap for bedtime, through the night already). 
  • Because he is having these not-breathing episodes, we have to plan for different scenarios in case his breathing cannot be corrected through his supplemental (nasal cannula) oxygen or his BiPap.  Putting together a plan that would include medical interventions that we would allow or not allow.  Plans that his nursing agency, school, doctors, hospital would be aware of in case of emergency.  Children's Palliative Care team will help us put together a written plan. 
  • To help facilitate care through Brayden's doctors and the Palliative Care team, we are looking into an additional nursing agency that would come to the house every couple of weeks, kinda like a home doctor visit.  This would be help his doctors monitor Brayden better at home.
  • Technology has changed since Brayden was a baby.  Brayden has never had a diagnosis.  We have been referred to the neurogenetic team to look at a couple of possible tests.  With the technology available now, through bloodwork, we could have some insight into Brayden's brain/body.  Whatever the findings or diagnosis, it will not change or have any impact on Brayden's treatment or day-to-day life.  The meeting with the neurogenetic team and bloodwork will be in the coming weeks but the results could take months.
  • MRI, the neurologist is requesting a MRI (also helpful for the neurogenetic doctors).  Brayden has not had an MRI in many years.  But having a current MRI, they could compare his previous ones to see if/how there has been any degeneration.
Basically, the overall plan is to focus on Brayden's comfort and quality of life, rather than seeking out any major medical interventions.  All of his doctors agree with this (in fact were the ones who brought it up to us anyway).  Also for Jeremy and I to plan for what-if scenarios, so that he and I are on the same page and we can communicate that to those who help care for Brayden day-to-day or in an emergency.

Honestly, we are attempting to just shift in our mindset of how we take care of Brayden.  For example, I spent many years talking (or arguing, depending on who it was) with Brayden's home care nurses about his time in bed.  I have always been adamant that he would NOT be a bedridden boy, basically he was a little boy and needed to get out participate in life, however he could.  Now, it is more like...well, Brayden is so very content and happy in his bed so why push him. He loves his bed.

We will be focusing more on Brayden being content, comfortable and happy, rather than seeking further medical interventions (but still continuing with his current plan of care) and even just in basic things like not forcing him to school all the time (school is still good for him but I will let up with trying to get him there as much as possible).

Lots of very heavy, hard conversations over the past few weeks.  We very much trust and respect Brayden's pediatrician and neurologist, who are all on the same page.

And we whole-heartedly trust God, for whatever the plans may be.

One thing we do not have to worry about is Brayden's weight...the scale hit 85 lbs this week.

Sunday, May 14, 2017

For the love of football

A day in DC for spring football.  And it happened to be Mother's Day. We were determined to make it a family day (forced-family-fun).

Brayden decided to have a breathing episode on the way to the game.  A quick Chinese-fire-drill so momma could sit in the back to monitor Brayden's breathing and hook him up to oxygen.

Game time and Brayden was entertained by the throw-back 95.5, 1990s music (Let me clear my throat...).

Game was won but Carter was crushed, literally.  A play gone wrong, he landed on a player's helmet and then the biggest kid on the field (possibly 3x the size of carter) landed on him.  Hip injury, trip to ER and thankfully a hip contusion (not a break). 

Nothing but fun and Mother's Day lunch from the concession stand.

Wednesday, May 10, 2017

Those lovies

Brayden's animals.  His aromatherapy animals.  His favorite things.

His puppy has been the fav for quite a while.  The favorite animal gets prime position in his bed, placed by his left shoulder for the best possible cuddling.  Puppy has held that spot for many months...until froggie came along.

Brayden actually head bumped puppy out of the bed.  Rather proud of himself, as you can see on his face.  He wanted froggie there.
 And there froggie will stay.

Monday, April 17, 2017

This guy is 10

It is his birthday and we send him to school.
He is totally thrilled (or in total denial).

10 years

10 years ago, Brayden was born. 10 years ago today, we were still delightfully oblivious to any of Brayden's health problems. The top picture has always been hanging in our kitchen, the sweetness and frankly a lot of innocence, helps me remember that in all of this there is joy, simple joy. It was not until a couple of days later that we started to discover his brain was not formed properly. But God knew and thankfully all of Brayden's troubles have been slowly rolled out ...over the years because there is just no way we could have handled them all at once. Brayden's from the beginning, such truth:
Psalm 139: 13-18
"For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you…Your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be."

Today we celebrate his 10 years but also that we made it 10 years! I would never let my mind wander, to think about him getting older. We have never known a diagnosis or how much time we have with him. Whoa, we made it 10 years!
Oh how much we love him!

In honor of his birthday, donate $10 for his 10 years to Jill's House.
www.jillshouse.org/donate
comment: In honor of Brayden's 10th birthday.
for more info on Jill's House - jillshouse.org

Sunday, April 16, 2017

Georgetown Cupcake

Georgetown Cupcake donated 7 dozen cupcakes for Brayden's birthday. How did this happen?!


It all started in 2008, we were still trying to understand Brayden's ever-changing needs. We discovered a little cupcake shop (Georgetown Cupcake's original place). Stopping for cupcakes became a part of our DC routine. A day at the hospital...well that certainly deserves a cupcake. Their little pink box somehow added a bit of happiness to whatever happened that day. When Carter and L...uke were little, they had to come along to many hospital and doctor appointments, so why not bribe them with cupcakes?! Then the cupcakes became part of our celebrations for school, birthdays, etc. Well...we may have talked about our cupcake stops quite often so friends (you know who you are) brought us cupcakes, when they happened to be downtown. Our pediatrician even got in on the action, texting us about the secret cupcake of the day when we were downtown (FYI, if you know the secret cupcake, ask for it and it is free). 

I knew that if we made it to Brayden's 10th birthday, Georgetown Cupcakes had to be a part of it. Brayden does not eat but he does like the icing. Georgetown Cupcake is just part of our trekking back and forth to DC for many years now. I sent Georgetown Cupcake a message about Brayden's birthday, they replied immediately and offered to comp the order. Their kindness and generosity is all the more reason to love it. I cannot thank them enough for being a part of Brayden's big birthday celebration!
#georgetowncupcake #dccupcakes

Thursday, April 6, 2017

Adaptive Rec Day

Every year a local high school hosts Adaptive Rec Field Day.  Special Ed classes come to the school for all the fun.

And it all starts at the entrance of the school.  Welcomed by the marching band, mascot and the school halls lined with high school students (coaches for the day) cheering as the students arrive.
Then everyone heads into the gym for all the fun.

This year, big brother Carter came for the fun.
 
  

  Finish it off with a dance party and awards.  Such fun, always fun.



Friday, March 31, 2017

They Change You

Having children changes you.  Having a special needs child changes you, down to every fiber of your being.   We have two older boys, Carter and Luke.  Brayden is our youngest.  Yes having Carter and Luke changed us but then came Brayden and well...
What does having a special needs, medically complex child do to you?  You have a child that is completely dependent on you…literally you are responsible for keeping that child alive; whatever their version of healthy may be, comfortable, feeling loved, etc. 

They change:
  • How you see life and death
  • How you handle life, in the little and big things
  • How you participate in life and activities (or don’t, which happens more often than not)
  • How you parent that child
  • How you parent your other children
  • How you love – a love that you never knew existed, and the word love just does not seem to do it justice
  • How you hurt – and boy it can hurt
  • How you see the value and “quality” of life
  • Your family structure
  • Your marriage
  • Your identity
  • Your needs
  • Your emotions
  • Your faith
  • How you have friendships – you just don’t have time or energy for anything but quality friendships
  • Your lifestyle
  • Your finances – how you spend money on your home, vehicles, savings, insurance, medical items, etc.
  • Your time
  • Your priorities and how you make decisions
  • Your self-care and caring for others
  • Your coping skills
  • Sleep
  • Endurance – I call it the sleep over effect.  During the sleep-over (aka medical crisis) you are on and ready to go.  Once the passes, whether it be hours or days or weeks, then you crash.  Like a child that had a sleep over, totally up all night but crashes once home and sleepover is done.
  • Your senses – I can hear the pump going off from a mile away.  Sniff out a feeding pump spill or poo situation from another room.
  • Your gut – sometimes you just know something is not quite right, sometimes you know something will be alright, even to the contrary (or doctors) and you have to trust that God-given “gut” feeling
  • Your vacations or lack there of
  • Your time management or ability to makes plans (making plans can just be laughable)
  • Your dependence on others (which some of us just don’t like to do)
  • Your need for help
  • Your need for community and support because isolation is very real and easy to slip in to
  • Your ever expanding medical knowledge and comfort level in all medical situations. And uncanny ability to recall any given medical fact about your child but cannot remember what you ate the day before
  • Your circle, which mostly involves doctors, nurses, case managers, insurance companies, equipment companies, special-ed and pharmacists.  Because they are who you interact with often.
  • Realizing you have very little control and thank goodness God's got this because it is too much for us to handle.
  • Your flexibility in situations and absolute stand-my-ground when fighting for your child
  • Your voice. You learn to speak often and when needed, especially when you have a child that cannot speak for themselves.
  • Hopes, dreams, goals, expectations that you had for the child and perhaps your family.  You adjust.
  • Milestones - You learn to grieve certain things but celebrate other things, new milestones
  • Embracing different hopes, joys and celebrations
And all that, changes you for the better.  It has changed you in ways that you did not even know possible or expected. 

Everything about your life, and your family, goes through filter of caring for that child.  Your child changes everything.

Friday, March 24, 2017

Where are we?

Sorry all, Brayden is doing fine.  I just needed a break from blogging but will be back to it very soon.

You can follow us on facebook for our day-to-day bits.
https://www.facebook.com/carrie.l.jenkins.3

Friday, September 16, 2016

Don't call it a comeback

He's been here for years, Rockin it with his peers... Yes a little ode to LL Cool J.
Yes we feel like we have almost been knocked out this past year (sorry I just can't let the song go. and to make you feel old; that song came out in 1991, released on a cassette).

We did feel like it was blow after blow for Brayden's health.  And it seems like each year his health takes a hit; but he keeps on going.  The doctor's give us those absolutely awful talks about the state of his health, and yes, I agree that on paper Brayden seems quite bad.  And the talks that started this time last year took a very serious tone.

However, Brayden's keeps being himself.  Even his last lab work looked good.  Not just "good for Brayden" which is a phrase that is often used, but his labs actually looked good.  Labs were better than I have seen in a long time.  The ileostomy and his electrolytes seem to be managed.  We have been dealing less with the poop out of his bum; a round a meds seemed to have helped.

Now that Brayden's ileostomy and bum situation seems under control (and I use that term loosely), we can concentrate on his bone health, comfort, etc.  His body is tight, time of Botox.  His spine is curving too much.  And we are trying to catch up with his bone infusions.

Brayden's temperament and personality always seem to show that he is a rather grouchy old man, does not like change, does not like to do anything he does not want to do and he will let you know.
Look at his face in the video, he is ready to knock someone out.  School music was not what he wanted at that moment.

He still loves to be outside and with his family, especially his brothers and daddy (minus Luke's trumpet solos).  And his puppy and froggy.  Loving country music and movies with music.  Brayden is going to the same school he has attended since preschool.  We are trying to get him there everyday but, well, we try our best.

God has given Brayden a big personality and given us more and more time to discover it.  We are so thankful that Brayden has been stable or dare I say, healthy for being Brayden.  Of course, he keeps us on our toes every day but it's not gonna knock this mama out.  Don't call it a comeback, it's been this way for years.  And we are thankful for each one.

Saturday, September 3, 2016

Start of School

This may have been the smoothest start to the school year, in many years.  A bus came, actually on time, drove him to the correct school.  I did not have to drive him, I did not follow the bus (although I did hang out in Leesburg for the day).  Brayden was actually healthy enough to go to school.
Brayden attended school Mon-Thurs.  Same school, same room, same teacher and aids.  He decided to put his game face on for school...the "don't talk to me" face.



Thursday, August 18, 2016

The Stinky Stinker

Brayden stinks.  In just about every way someone could stink (well, actually more than most).
  • Stool/mucus/who-knows-what is still coming out of his bottom.  Several times a day.  Sometimes it is a little and sometimes it is a lot.  Whatever it is or size it is, it smells...really, really smells and we have a very high tolerance for smells in our house.
  • Brayden's ileostomy see
    ms to be doing ok, but because of every thing else going on we have to be a bit more specific with measuring the amount of stool coming out of his ileostomy. Nothing like measuring stool.
  • Urine output is fine, actually rather productive.  We have been trying to compensate for things coming out of him everywhere else and giving him more water so that he would not become dehydrated.
  • Vomit, yes there has been vomit.  While there is nothing for him to actually vomit since nothing goes into his stomach, he has been retching and vomiting.  Is that because he is sick, GI troubles, fever/seizures, etc.?
  • A fever. A fever that I thought was gone.  He had a great Sunday and Monday, no sign of fever.  In fact Carter, Luke and I took him to the movies.  He absolutely loved the movie, sat in his wheelchair most of the time and then in my lap.  So proud of him. I don't think he has ever lasted through an entire movie.  Even Carter and Luke know to plan an exit strategy when Brayden acts up too much.  But then on Tuesday the fever started creeping back.  And hit 102.3, of course in the middle of the night.  I was up with him, monitoring the fever, seizures and retching.  It was not pretty.
I have been emailing the doctors updates and lots of pictures of Brayden's diaper goodies.  The doctors have been emailing back and forth...seeming to take a scratching-their-head-method.  Brayden had repeat labs done last Friday, everything seems ok.  Some labs show inflammation but no infection or imbalance.

Whatever is happening, it is going on 3 weeks of it.  One doctor (whom we adore and cannot parent Brayden without her) called in metronidazole (flagyl), to treat an possible infection in the colon.  We shall see if that works, we picked up the med tonight.

And for a little poo humor, Brayden's nurse carried him over to the shower from his bed tonight.  While traveling that short distance, Brayden's bum felt the need to shoot out stool/mucus/who-knows-what.  Left a trail on the floor, rug...and the nurse. Again, not a large amount but the smell, oh the smell.  Now the house smells like bleach.

Pray for our big stinker.  One moment he seems fine and the next he is miserable. 

Wednesday, August 10, 2016

Football Family

A letter that we sent to our local youth football league:

Football season is upon us.  It certainly seems like a great time of reflection on our year and our football experience.  Perhaps this sappy stuff comes as our oldest enters his last year in youth football or as we, the Jenkins family, are finally coming out of one hard year. This is just something we wanted to share.


It is more than just football.


That phrase was certainly something I scoffed at when our family first started with Upper Loudoun Youth Football League.  I showed up to our first pre-season football camp wondering what world we just signed up for. Come on people, it is just football!  My initial reaction to the youth football world was not, well…let’s just say I was not thinking positive thoughts about it.  The intensity, the obsessiveness, the practices that cut our summer short, the crazy parents, the crazy coaches, the crazy parents that thought they were coaches and all of this was just about kids playing football?!


Many years and many seasons in to our youth football experience and I now find all of above quite endearing and even perhaps some things I have come to appreciate.


Football makes our world smaller. It provides community.  It provides bonding not only for the youth playing but the families as well.


We have seen families form life-long friendships over youth football.  Whether that be cheering on the team or jeering at the coaches (and let’s be honest some have really bonded over some sub-par coaching experiences) or just chatting at practices and pre-game.  The siblings look forward to seeing friends on sidelines or in the stands, hours of playing (or getting goodies at the concession stand). We have stood together in some scorching heat, hurricane like rain and winter air that took our breath away.  We have celebrated some amazing wins and agonized over some very tough losses. None the less, real friendships formed in all of those moments.


Even still, it is so much more than what happens on the field, sidelines and in the stands.  What happens off the field is what makes it a community.  We all have walked along side of football families battling cancer or other major illnesses, loss of loved ones, loss of jobs and so much more.  Meals have been made, fundraisers have been organized, Even if you did not know the family, they are a part of our football company and we all support them; many show up for them.


Our family experienced this support first hand last year.  A house fire, that left us in a temporary home (for longer than we would like), without any of our belongings other than what we had on vacation.  Then our youngest son was in and out of the ICU, to many tests, a big surgery and dreaded “talks” with doctors.  Where was our football community?  They came to our doorstep.  Food was delivered, hugs were given, prayers said, laughs came at the right times, help with the boys, rides given and so much more showed up.  We did not even have to ask.  Help came right to us so we could focus on the more important things. They helped keep things as normal as possible for our two boys in football.  The boys had time with teammates, friends, going over to houses, treats given (oh that Slurpee after practice is quite the treat). Our football community showed up as our community.  We will be forever grateful.  And a side note that many of those burley football coaches are actually quite good in the kitchen.


As we were starting to get back in to our house and we finally had a plan for our youngest son’s health (not a plan we liked but some plan is better than no plan when battling medical issues), another tragedy struck the Jenkins family.  The loss of my mother-in-law.  It was a tragic, gut wrenching day.  As the adults in the Jenkins family were trying to sort through the events of the day, our oldest still had a football game to play.  While you might think it was crazy for him to play (and I probably would have said the same thing years ago), we could not think of a better place for him to be.  He was protected there, his heart was protected.  I trembled as I drove him to his pre-game warm-ups that evening. I pulled one of the coaches over, told him in the vaguest way possible, that my husband was not going to coach that night because of a family tragedy.  That moment I saw the tough coach exterior melt away and a Papa Bear came out to protect one of his own (and probably not one that many would expect, given his rather gruff football coach persona), he immediately went in to caring for and being protective over my football players.  My two oldest boys had their football family surround them that night, just by keeping things normal.  The following days were filled with phones calls, emails and texts of love and support.  More hugs given, prayers and tears shed.  You see, my mother-in-law rarely missed the boys’ football games, she was in the football community as well.  Countless people from our football community came to the offer their condolences, more than we could have ever fathomed.  They came to support our family.


Football, it is so much more than just football.  Know that ULYFL has the platform to have influence and impact on those in the football family. Football is a community. 

Football is an honest game. It's true to life. It's a game about sharing. Football is a team game. So is life.” – Joe Namath

And in case you were wondering…


I have become one of those crazy parents. Screaming from the sidelines (yes from the sidelines and not the bleachers, I can’t handle sitting during the games) to my boys “You better hit someone!”

Sincerely,
Carrie Jenkins
For the Jenkins Family

Thursday, August 4, 2016

Poop in the Diaper

Brayden’s summer had been rather uneventful.  He did attend summer school, Tues-Thurs for the mornings.  Otherwise been at home and a couple of times in the pool.  I try our best to ignore the doctors over the summer.
Brayden had a different plan.  Over the past week, Brayden had stool in his diaper.  Yes, out-of-his-bum-poop.  Poop should only be coming out of his ileostomy not his bum.
Brayden had his ileostomy surgery in Nov, the plan at the time was to remove his colon.  However, due to his instability at the time, the surgeon thought that the ileostomy and colon removal would just be too much.  So Brayden only had the ileostomy done.  We knew that Brayden’s colon still had stool in it (they were not able to flush it all out), we were told to expect the stool to come out at some point.  But stool coming out of his bum 8 months later is not so good.  Three times in the past week, Brayden had a very full diaper with actual poop, which has come along with low grade fever and the fever causes increase in seizures and gagging.
Talking with his GI doctor at Children’s (and his pediatrician), they wanted him at Children’s for x-rays and labs.  So we packed up and headed in late Monday afternoon.  Brayden, his Ms. Stephie and I spent afternoon and evening on the lovely 2nd floor at Children’s, waiting for his turn for labs and x-rays (really waiting for them to find the orders for them).  Then we waited for the results.  The doctors wanted us to wait at the hospital in case more testing was needed or the possibility he would need to be admitted.

Surprisingly, the x-rays and labs came back “normal for Brayden”.  Which is great news but the doctors are NOT at all comfortable with the stool and the amount of stool that we have seen (yes, I sent them pictures).  We brought Brayden home on Monday night around 9:30 (he screamed from the moment we left the house until we got home and finally passed out asleep in his bed).  The GI team wants to discuss things further, amongst themselves, but they don’t really seem to have any answers.
Brayden will remain at home unless we see trouble with his ileostomy or an increase in the fever. 
Something is not quite right with him, praying that this is just a little blip/oddity that has always been a part of Brayden’s medical story.

Friday, April 8, 2016

It is a Fierce Love

Fierce:
"having or displaying an intense or ferocious aggressiveness";
"showing a heartfelt and powerful intensity"

Love:
"unselfish loyal and benevolent concern for the good of another"

I was recently asked to describe what is means to be a mom to a special needs child, a child with significant medical needs.  I have the privilege of being one and knowing others.  We are all so different and our children's needs are different.  Pausing to think about the one thing we have in common; without a doubt it is a fierce love for our children.

A fierce love that powers us through so much; it has changed the fabric of our being. And we love our child with every fabric of our being. 

It is a love that is so aggressive and ferocious that gets right in.  A love comes barging in when we first hear a diagnosis and/or a grim prognosis.  We hear that we have a child that will struggle, daily, just to be in their own body.  Oh that love digs deep down in. We learn that every day will be a battle.  Over time, we realize that the battle is still present but it really becomes a privilege.  This fierce love sinks it's teeth in deeper and deeper each day.

This fierce love is more powerful than anything I could have imagined. I had no idea it would come with such extreme joy and grief, all because of your child. Your child. We have been knocked down to some very low lows but we get right back up, for our child.

We have gone to battle for our child.  Making medical decisions that we never thought would happen.  Understanding those medical decisions, sometimes more than the doctors. But we still have to find a balance of how much medical intervention and their quality of life.  One of our early decision came when with addressing seizures, how many seizures in a day can he handle or how snowed with medication will he be, are the seizures bothering him more than the medication, etc.? Now it has become, how many more surgeries, hospital stays, etc.?  We battle with ourselves to make those decisions.  Sometimes we battle with God, pleading for our child's comfort, asking why, when is enough, enough?   That fierce love comes with some fierce responsibility and questions.

Our definition of happiness and being content has changed.  It changes the moment your child makes progress or, at least, is stable. You have new standards. It changes when they smile and when they need you.  They need you for their survival, for their well being.  As a result your parenting becomes the most unselfish, loyal and benevolent concern for another that you will ever know.  One you did not even know you were capable of having.

Over Easter weekend Brayden was not happy; fussy about everything.  I just could not get him to settle down. We thought he might be tired or just all of the chaos of people around.  I decided to put him to bed early. I was rolling him over in bed. He rolled his head right in to my shoulder and he stopped the crying. I scooped him up. He sat in my lap. I know I heard him give an audible sigh of relief. All he needed was his momma to hold him, to quiet his body, to provide comfort and finally peace.  And I stopped everything else that night, just to hold him...for a few hours we sat there. His world need to be stilled so I had to still mine.

This fierce love could be defined as a momma bear.  We pull out the momma bear with insurance companies, schools, doctors, equipment companies.  Fighting, protecting and providing for our child. But that fierce love come roaring up faster when someone has harsh words about our child. I will not share any words that have come our way because I do not want to even acknowledge them.  But trust when I say that having a special needs child comes with all kinds of comments, criticism, unwelcomed "advice", etc.  This fierce love had to make us stronger.

The powerful intensity of this love is almost terrifying. This child has changed us so much, changed our world, that we cannot fathom a world with out them in it.  Their care, happiness and comfort consumes every part of our day and decision making.

We have had sleepless nights being up with our child at home or in the hospital.  Or we even have sleepless nights worrying, thinking about them. Even our dreams (or nightmares) include them.  We live at a constant level of stress.  But to be without that stress would mean that we would be without them. Some have already lost their child, others are battling major medical issues, others are grateful to be in a "healthy" phase and we have learned to live day by day or sometimes even just moment to moment.  This fierce love has taught us not to take one day or even sleepless night for granted.

I am forever grateful for this fierce love.

------------

As I said, this fierce love has changed that fabric of our being. This list is what I pray becomes more and more of my character.

From Focus on the Family: Characteristics of a beautifully fierce woman
  • She's filled with gratitude for God's good gifts. Her heart is ruled by the peace of contentment.
  • She's passionate about things that matter rather than living for the trivial.
  • She's willing to battle for a worthy cause rather than shrinking in defeat.
  • She protects and defends the helpless rather than using her strength to bully others. She is known as a sincere encourager.
  • She's honest but kind.
  • She walks in confidence and humility that flow from her recognition of Christ's work of grace in her life.
  • She has the power to influence and inspire because she lives under the Spirit's control.
  • Her identity and value are rooted in her relationship with Christ.

Wednesday, March 9, 2016

Broken

those naïve college days
I cannot tell you how many times I have used the word broken over the past nine months.  I have never seen my husband so broken, in so many ways, throughout all of these circumstances. Broken in ways that has left me helpless as his wife.  Then I realize that I have been broken too, in different ways.  And of course, Jeremy wondering what in the world he could do to help me.   Brokenness deep, deep in our being. How can we get it together when everything around is breaking down?  By God’s grace, our marriage as gotten stronger.

I was reading an article recently about brokenness in marriage.  The statistics for marriages with special needs children are not on the positive side…then toss in a house fire, lost loved one, change in job, scary hospital stays and we have to actually parent our children throughout it too.

This song recently popped up in a feed and I listened to it again.  I think it speaks volumes about marriage.  We are both broken and the whole idea about making each other complete...that is rubbish. We are all so broken, how could we really complete each other? Isn't that an incredibly unrealistic expectation and unfair to put that on our spouse?

Maybe you and I were never meant to be complete
Could we just be broken together

If you can bring your shattered dreams and I'll bring mine
Could healing still be spoken and save us
The only way we'll last forever is broken together


"Two people are better off than one, for they can help each other succeed.
If one person falls, the other can reach out and help. But someone who falls alone is in real trouble.
Likewise, two people lying close together can keep each other warm. But how can one be warm alone?
A person standing alone can be attacked and defeated, but two can stand back-to-back and conquer. Three are even better, for a triple-braided cord is not easily broken." – NLT Ecclesiastes 4:9-12

That triple-braided cord - who is the third?  Christ.