Wednesday, December 25, 2013

Why Brayden loves Christmas

Endless cuddle time.
I'll be back with more pictures...

Thursday, December 19, 2013

Toy Delivery Day

This year's Toy Drive for Inova Children's Hospital was a HUGE success!  It is humbling to realize how many people helped out this year.  From the Sluggers baseball club (and my boys don't even play baseball) to the Western Loudoun Basketball League and the D1SA Spartans.  From Coach's Corner Restaurant to Hamilton Service Center and Velocity Wings.  And so many generous individuals that donated time and toys!

We collected over 1000 items for the hospital.  Wonderful handmade blankets, movies, video games, lots of books, crayons, tons of games, dolls, stuffed animals, trucks, action figures, jewelry (for those older  teenage pediatric girls), and even the most perfectly wrapped skateboard (seriously whoever that was need to service out their wrapping skills).  Oh and a lot of that hot gift of the year, Cra-Z-loom bracelet maker!

We had so many toys I started to panic a were we going to get them all there?!  My packing skills and slightly OCD need for order was put to test with this load.  I had no idea so many toys would be donated.  Next year will be a Uhaul.

We folded down all the seats and stuffed the car from top to bottom with toys.  All of the blankets and pillows surrounding Carter and Luke in their seats (this year I could not take Brayden, there was no room for him and his wheelchair).  Then we strapped down the rest on the back of the car.
On the way to the hospital, we got some thumbs up and waves for our load (that or they were alerting me that my boys were collapsed under a giant mound of toys in the car).

Arrived at the hospital and there were many rounds of unloading the taking into the hospital.

The Child Life staff at the hospital sorts the toys then gives many to the children in the hospital and those coming and going (Brayden has even received some when there for an outpatient procedure and inpatient).  Some may go to the siblings of the children.  Some may be used in the Child Life playroom.  All will go to great use.

And being on the receiving end for Brayden (thankfully not for a while), I can tell you it is such a joy to know that complete strangers have been thoughtful enough to brighten my families day with a gift.

A note from a mom about her daughter, just last week:  (She) had to have surgery at Inova Fairfax on Wednesday. One of the few times she smiled while there was when Santa came and showered her with presents. Not just one present but three and a book and a homemade pillow.

Thank you, thank you to all of those who generously donated.  I know there are many great things to give to and we feel blessed that so many gave to this toy drive.

Friday, December 13, 2013

So Starts the Wean

Brayden is coming off the ketogenic diet in order to improve his bone health.  He has been on the ketogenic diet for about half his life, 3 yrs and 8 months on the diet.  The ketogenic diet puts the body into ketosis by eliminating all sugars and every derivative of it (in shampoos, toothpaste, sun tan lotion, medications, etc.).  We have carefully watched every little thing he gets.  We have carefully mixed and measured his food (Ross Carb Free Soy Formula, Microlipid, Elecare Junior, MCT Oil, Lite Salt, Vitamin and water, just in one batch).

The ketogenic diet literally has been life changing for him...and I am not being dramatic.  It has really been that good for his seizure control.

Before the diet he had over a dozen major seizures every day (and I didn't even count the little disappearing ones) and we were at the ER every month for seizures we could not control at home.  So many times he had seizures that lasted hours and hours.  Many that were terrifying; for a long time Jeremy and I thought we would loose Brayden to a seizure one day.  Brayden had seizures that we were not sure he was ever going to come out of...some that lasted over 8 hours (to our local ER, then transported to Children's in DC) with more medication that it would take to put a horse down.

Once on the ketogenic diet, Brayden's seizures only happen 1-2x a day, and if there are more we adjust his keto diet and it helps.  Not only have his seizures been under control, Brayden has blossomed.  He is not overwhelmed with constantly having seizures or being completely snowed with medication.  So we have seen his personality so much more.

The ketogenic diet can (and hopefully will for Brayden) almost snap the body out of those bad patterns of seizures so that someone can come off the diet still doing better than before they started the diet.  Typically, someone is on the diet for only 2 years.

Over the next two months, Brayden will be weaned off the ketogenic diet, changing it every two weeks until he is completely off.  And I am sure there will be changes to his medications (he is currently on Keppra, Phenobarb, Lamictal...others too but those are just his seizure meds).

Please pray for a smooth transition.  Pray that this will improve his bone health.  Pray that he starts to absorb all those good things bones need. Pray that his GI system will handle the transition as well, it typically has not liked change in the past.  Pray that we can still control his seizures.  Pray that he is comfortable, we are not sure what has been going on with him the past couple of months but he spends a lot of time being uncomfortable in his own body.

The doctors have been great about communicating thus far.  At Children's 2 neurologists, 1 endocrinologist, 1 orthopedic surgeon, 1 nutritionist (and some other doctors were involved but I forget and didn't pay much attention to them since they did not seem to be the decision makers) and Brayden's ortho dr. out of Fairfax...and of course Brayden's pediatrician who talks me through it, calming my nerves.

We have been communicating with them over email mostly and will continue to do so.  We will see Brayden's neurologist in January.  Then back to the bone health clinic in March.  And labs along the way (hopefully no x-rays till March because we don't want any new problems).

Sunday, December 8, 2013

Jill's House stay #2

We were not sure Brayden was going to make it for this Jill's House stay.  They were concerned about the amount time it takes to handle his morning and bedtime medical routine.  They needed more nursing help (because the nurses have to tend to other children as well).  After several phone call, we decided that I would check him in later on Friday night (which is very busy for the nurses because they have to assist with check in and the bedtime routines) and I would do most of the bedtime things.  For the remainder of the weekend, we shifted his times to accommodate the nurses and Brayden's needs as well.  A few days before and we had it set, Brayden was going to Jill's House for his second visit, Friday night through Sunday night.

Carter and I checked Brayden in on Friday night.  I was amazing to see Brayden immediately comfortable and recognized the place.  He was so peaceful and happy...oh how that makes my heart happy (especially he is usually not a fan is different experiences).  Carter saw it to, he knew Brayden like this place.
It was about an hour to get Brayden situated and we headed out, Brayden ready to enjoy his stay.

Our weekend was filled with Carter and Luke's basketball games, then the Jenkins Restorations Christmas dinner...we did sneak out to stay at a nice hotel nearby for one night while Carter and Luke stayed with their grandparents.

Sunday morning was a bit chaotic since a winter storm was starting, a good bit of snow but then lots of freezing rain and ice.  So Jill's House had an early pick up time.  Jeremy headed in to pick up Brayden.  And this was how he was greeted.  My King Brayden!  He had a wonderful time and happy talked his way all the way home, telling daddy all about his own way.

The report was great.  He was spoiled with all of his favorite activities.

Tuesday, December 3, 2013

Like Butter

Not a way to describe bones...or is it?

Today we headed to Children's National in DC for a bone scan.  Or what I thought was just going to be a bone scan but Brayden's neurologist for the ketogenic diet emailed us (at 1:00 a.m., not sure she ever has down time) to let us know Brayden would also see the endocrinologist.

An appointment time of 7:30 a.m. means we left the house early.

Lots of paperwork when we arrived, then lots of questions (I have mastered the Reader's Digest version of Brayden's medical history) and talked with a few doctors.  Passing one of the doctor's in the hallway, she sat Brayden up and felt his spine...then ordered spine x-rays as well.

X-rays are always a painful task for Brayden, his body never is in the proper position for the x-rays and getting him in that position is....well, a bad experience for all.

After the x-rays, Brayden had a bone scan, targeting his legs, hips and spine.

Scans complete so we headed back to the examining room.  Then we were called back to get more images from the scan (we have learned that when they want more, it is rarely a good thing). 

Thankfully the scans went much better than the x-rays, the table is much softer.

Finally back in the examining room, waiting.  Then five doctors came in (again, rarely a good thing when that many appear...well one was a med student, there because this was an interesting case).

First the orthopedic surgeon spoke, explaining their conclusions for the tests and labs.

Brayden's bone look bad, really bad.  Really, really, bad bone density.  There is a chart with a curve (imagine the growth chart for children), they like for children to be within a range of that curve.  Brayden was not only below the healthy range, he was so low that his bone density does not even register on the chart.  It is bad.

It doesn't stop there.

Brayden has several compression fractures in the lower part of his spine, where the rib cage meets the spine.  And it does not seem to be getting better, the doctor made it seem like it could get worse.

There is still more.

Brayden left hip is not looking good (and to jog your memory, his right hip/leg has been the problem).

The orthopedic surgeon said, "If there was a surgery we could do to help, it would be like operating on butter."  His bones look bad enough for her to compare them to butter.

Time for the endocrinologist to speak.  Basically, we need to get his bones more, more of everything.  This doctor will talk with Brayden's ketogenic diet team to look closely at what his diet includes.  Brayden's seizures medications as also a problem for bone density.

Then the orthopedist dr spoke up again, "I am going to be blunt and harsh.  He needs to come off the diet."  We had more discussion about better positioning, vitamins and how/when their team will talk to the ketogenic team.  And that awful "quality" of life discussion.

We left the 4 hour appointment with many questions and concerns.  How much pain does Brayden deal with everyday?  How fragile is he?  How can we increase his bone density?  What will happen to his seizure control if he comes off the ketogenic diet?  Prior to the diet, Brayden's seizures were terrible, life-threatening terrible and happening constantly.  How bad is this?

I see his little body so differently than I did just hours ago.  His bones are like butter.

The game plan thus far:
  • This team will talk with the ketogenic team to discuss options (not convinced they are giving any other option than coming off the diet and replacing it will more seizure medication)
  • Check in via email over the next couple of weeks
  • Order him more Vitamins and positioning pillows
  • More blood work in a couple of months
  • See this team in three months for another scan (they usually do scan every 6 months but they are worried he is losing more bone density and/or if he comes off the ketogenic diet soon, then there could be a change)

Monday, December 2, 2013

Annual Giving Back at Christmas with the Jenkins

Merry Christmas!I am sure that everyone is busy getting ready for all of their holiday excitement!  Decorating, baking, shopping, etc.  I absolutely love the holidays!
I wanted to let you know about two opportunities to give back during this holiday season for what has become part of our annual traditions.  The boys and I are working on a couple of things and would love to give you the opportunity to give as well! The last couple of years have been a great success and want to do the same this year!
Toys for Inova Fairfax Children's Hospital.
We know too well, the time and money that is involved in any hospital stay.  Inova Fairfax is where many of the chronically or critically ill children of Northern Virginia are taken for medical care. Many families struggle with this during the holiday season.  Staying at the hospital for any length of time is exhausting on the family and the wallet.  We want to gather as many gifts as we can so that the families staying at the hospital over Christmas time have an opportunity for gifts.  Over the next three weeks the boys and I will be collecting toys to take to the hospital.  Toys for any age, books, coloring books or even just a box of crayons.  Big or small, it is all great for the families!

You can drop them off at our house, meet up or we would be happy to come by to pick them up!  
This year we will gathering toys for Inova Fairfax Children's Hospital in honor of two wonderful girls from Waterford:

Jillian D'Errico- 10 year old girl that had a very serious fall just before school started.  She received critical care and attention at Inova Fairfax.  Now she is home, going to school and, as always, being very entertaining. 

Justice Coleman - 8 year old girl, who suffered a life threatening volvulus and infections.  She has spent much time in and out of the hospital over many months, thankfully still covering at home.

Great ideas for gifts:  blankets - even hand made ones (Brayden still uses some from some of his stays), Crazy loom bracelet kits, books, beads/jewelry kits, stuffed animals, video games, movies, etc.
Make-a-Wish letter campaign.  This requires NO money (just time and a postage stamp).
Write a letter to Santa, put it in a stamped envelope and drop it off at Macy's.  Each letter will be a $1 donation to the Make-a-Wish foundation.  As most of you know part of our 2011 year was our Make-a-Wish trip for Brayden.  It was magical beyond words (dare I say better than Christmas!).  If you cannot make it to Macy's, you can give it to us to drop off.
Find out more about this campaign and a fun website for the children.

Thank you for helping us with the opportunity to give during this Christmas season.

If you have any questions, please just let me know.  Email me, efcarrie at aol dot com, for our address or set a time to pick up.

Thursday, November 28, 2013

My Happy Turkey

Brayden loves the holidays...that means no school and a lot of family time.
He couldn't be happier at Thanksgiving.

Monday, November 25, 2013

Bones, bones, them bad bones

Brayden is out of his massive leg cast.

A long afternoon at the ortho doctor.  More x-rays, more discussion of what to do for him.

Does this look like a boy who will cooperate for x-rays?  Try to place his legs in the correct position for x-rays and all he wants to do is swing them out and off the table.
Oh I hate x-rays for him, it is such torture and sometimes actual pain to get him in the best position for the best pictures.

The femur doesn't look like it is healing as well as it could be, something about bad absorption.  This ortho doctor agreed with those at Children's that Brayden should get a bone scan.

Then I have to spend a lot of time getting together his records, reports and x-rays from this office to those at Children's (can be a time consuming task).

Getting Brayden home was definitely easier without the cast.  However, the next couple of days were rough.  He was not comfortable and I worried something was really wrong with his leg...times of screaming pain when I would move him.  Thankfully that stopped and he was more comfortable.

Still waiting to hear about his labs.  Then we have the bone scan Dec 3.

Tuesday, November 19, 2013

Craft time

American Education week and lots of activities at school.  This time it was Brayden's turn.  Parents were invited to class for craft time.

A noise maker.  Brayden was a little help holding the beads and feathers.  We hold up two items, within his sight, for him choose.  He will direct his gaze to the one he would like.  So he picked a few of the beads and so did mommy.  And Brayden was not pleased with it at first, he really wanted a morning nap.

It was a nice time to see the kiddos in his class as well as the parents.  All the kids parked in their wheelchairs, enjoying their time with their parents and the parents filled with laughter (about all kinds of things that would never happen in Carter and Luke's classes).

Thursday, November 14, 2013

From head to toe

It was a lot of lab work...I think 14 tests?!  Oh and Brayden is such a ha

Brayden had no idea that staying home from school was not going to be relaxing.

We started with a house call for Brayden's haircut.  Love that Micki came to rescue his hair, there was no way we could take him to her barber shop with that big cast.  He hair has been out of control.  With Thanksgiving and family pictures coming up, haircut had to happen, in a cast or not.

It was a lot of hair.

But Brayden's day did not stop there.  We had an appointment with the ketogenic clinic at Children's National.  Thankfully the neurologist and nutritionist prepared the lab requests ahead of time so we could arrive early to wait in the lab.

It was a lot of lab work...I think 14 tests?!  Oh and Brayden is such a hard stick, it feels like the blood cannot come fast enough.  During the lab work, my phone rang from a friend who was getting Carter and Luke from school.  I worried something came up so I answered the phone, with the bad reception in the belly of this hospital, all I could hear her say was "Are you okay?".  I had no clue what was going on but at the moment a Children's Hospital (in Wisconsin) was on lock down because of a shooting.  My friend just heard a shooting at Children's but she sent me a text to let me know what was happening but it was not in DC.  As I was trying to answer the phone, I snapped a photo of Brayden (the app open from trying to get pictures of his new haircut before we left the house but he would not cooperate), with a little cropping, you can see his desperate plea for help and crying to make it stop.

Oh how I wish he didn't have to go through this.  He hates it from the moment they pull up his sleeve.

After the lab, we headed down to neurology for the ketogenic clinic.  Lots to discuss.

Brayden has been on the diet for over 3 years.  The diet can have side effects that include bone density.  Brayden's medications can have side effects that include bone density.  The ketogenic team is sending Brayden for a bone density scan and meeting with an endocrinologist.

Brayden's seizures have been more frequent.  And with the increase of seizures, he seems to be gagging at the end of each seizure and sometime during.  Thankfully his O2 seems fine.  But these seizures happen every time he wakes up, even if he just had a quick cat nap in the car.

So we wait for the lab results before adjusting his keto diet or medications changes.  We wait for the bone scan and appointment with the endocrinologist.

How does Brayden feel about all of this?
Still mad and still in protest of being poked and picked at all day...see his chubby little hands are still in a fist, his way to showing he is not pleased.

Monday, November 11, 2013

Like an old smoker...

Brayden has been under the weather.  Several days in a row with fevers and a cough that makes him sound like an old man who has been smoking for decades.  With that cough comes a horrible retching that has strangers taking cover and us cleaning him up.
A trip to the doctor and some antibiotics with a side of nebulizer treatments.  Surprisingly we have never done neb treatments with Brayden.  He has had a wide variety of breathing masks over the years but never for something simple like neb treatments.
Putting the mask on was a task, then finding the best position...and keeping the mask on was another task.  He would finally give in but still showing his protest with an angry face and his little hands in a fist, his signs that he is still case he did not make it clear before.

Not a fan but it did help.

Saturday, November 9, 2013

Should have been a hurdler?

Despite having a giant green cast, Brayden finds a way to get comfortable.  And this is it...

A big hurdler pose/stretch.

On top of having a cast, Brayden is not feeling well.  A fever for a couple of days and lots of coughing.  Some how he cannot get control of his coughs.  The coughs turn into gagging, which turns into vomiting, which turns into the violent retching.  He has been pretty miserable.

Being sick, lowers his seizure threshold.  So yesterday morning was a 30 minute seizure with a dose of Diastat.  Between the Diastat medication and not feeling well, Brayden has like a zombie.
Praying the time being sick and time with a cast are both short.

And just for a thought, imagine me trying to get him in the car with his leg sticking straight out, while he is gagging/vomiting...trying not to get it on me or him, because changing him with the cast on is a task that is not enjoyed by well as loading him in the car.  It is a sight, and some may wonder if I am actually torturing but it is quite the contrary.

Thursday, November 7, 2013

The Green Monster

No I am not talking baseball.

Brayden's is in a large green cast.

A few weeks ago, Brayden had Botox in both of his legs...concentrating more on his right leg, which is always problematic.  Brayden has had Botox many times and usually we see quick, positive results, meaning his legs actually relax a bit more. 

However after this past round of Botox, we did not see any improvement.  In fact, the opposite.  He was pulling that leg tighter and more protective of it.

So we made an appointment with his ortho.

The appointment did not start off on the best foot. 

They could not find Brayden's appt (and they already over book), so we may have to wait.  Then we find out the ortho dr is joining a new group.  Which means we have to complete those dreaded Medical History forms.  At this point in Brayden's life, it takes me forever to fill it all in...and there is never enough room (or boxes for all his medical issues), so I write all over the paper.  And then I get lazy...the part when asked about procedures and surgeries, I list a few major surgeries and then write in "lots more", figuring if they really need the info they will ask for it.

On top of the medical history form for the new group, we find out that this new group does not accept one of Brayden's insurances...I will blog about this later.

We finally make it back to the room.  The ortho doctor checks out Brayden and she can immediately tell things are not quite right with his leg.  We discuss the previous Botox and that it just may not have worked this time around and may need to have surgery to lengthen/cut the muscle in his right leg (which we have done in the past).  Just in case she wants x-rays.

Oh how I hate x-rays for Brayden.  We have to straighten his leg, the best we can, keep him still while they can get the images.

The images came out showing the bowing in his femur, which we knew about.  But also some tiny fractures, some healing, some new, in the lower part of his femur.  The best way to explain it, is like bending a stick and it starts to splinter right before it breaks.

This may not be something to cast him for but it can help.  However, the cast must be put on with his leg extended... and his leg has been retracted, tight, up in his frog leg are we going to get it straight?!

We did get it straight, with a lot of screaming and crying.  Brayden sounded tortured and screaming in pain (like I have not heard from him in some time, oh it seemed like we could not get the cast on fast enough).
Then we realized, we had to get him home...with his leg straight in the cast, sticking straight out.  All of his previous casts have been with a bend in the leg.  We had to rearrange the car seat to the other side so we could push the front seat all the way forward and prop up his leg.  It was awkward to get him in the car.  And yes his pants are hanging off, his left leg...just the state of things once we finally got his situated...
The quick check-up with the doctor turned into a 4 hours appointment and the big green monster of a cast.

By the time we got home, Brayden was miserable.  He was screaming.  I called the pediatrician, trying to figure out what medications we could give him to help with his extreme heavy of medication should we give him?  So a little bit of medication and Brayden dosed off.

Now what to do about school?

First problem, no pants.  Brayden's pants could not get over his cast.  And all of his previous cast experiences have been in warm weather so we could do shorts.  I ran to WalMart very early this morning to find some big cheap sweats (which is what we all would secretly like to wear everyday).  Then I have to drive Brayden to school.  With his leg straight out, he cannot fit in his wheelchair for the bus and school.  He can fit in his jogger but that cannot be used on the bus.

So off to school he went.  I dropped him off, he seemed okay.  And I will pick him up before the end of school so I can get back to Waterford for his brothers' bus pick up time (Brayden's school is about 20 minutes away from home).

The cast should be on for only 2 weeks, so only two weeks of awkwardly carrying him, putting him in the car and driving him back and forth to school.  Hopefully he is comfortable.

Monday, November 4, 2013

What to say?

Recently, a family friend had an unsettling ultrasound.  The day they found out they were having a girl, was the same day they found out she has some major medical problems.

We can relate, so we had mutual friends/family ask us to contact them.  What would you say?  I just wanted to be real (no fluff).

Here is some of my email to those parents:

What do you say to a parent that just found out their child will be disabled/medically fragile?  Are there words of comfort?  Words of wisdom to pass along?
No not really, not in that moment…frankly for those of us that have been in that nightmare, it feels just like that, a nightmare.  Your head is spinning and you can barely put together a coherent thought.  A lot of words and support coming your way but you have no idea what freight train just hit you or be able to even get a grasp on to what it means, let alone try to hear and talk to others.  It all just feels like one big fog that you just want to lift.
And that is okay. 
So going through that experience what would I say?

It sucks.  It really truly sucks. And it is okay to feel that.  It does not mean you do not love your child or that your faith is failing.  Because there are far few things worse that having your own child struggle just to exist.  And it just plain awful.
It rocks you to your core.  A picture of what you thought your life/your child would be is shattered, shattered beyond recognition.  How could this happen to my baby?!  To my family?!  Hearing all of those…your baby can’t, won’t, etc.

Fear sets in.  Fear like you have never known before.  Fear for my baby.  And not in that overprotective mom fear, a real deep fear.  A fear that now I know bad things can and have happened to my child…so what will that bring?  Fear of the unknown.  You know firsthand the frailty of life.

All the things you think you know about babies and parenting are tossed right out the window.  For this is a path that is uncharted and will leave you feeling around in the dark trying to take care of your child.

How many times have you have heard, “God does not give you more than you can handle.”?  Frankly, that is crap (yes, I said crap.  Family, ignore that I just said that, sorry but it is).  God does give you more than you can handle, way more.  So much some times that is feels crushing.

And that is okay.

It shows us how much we need Him.  It shows us how much He is in control and how we just do not have control.  It shows us that our children are not ours but His.  It shows us how much we are absolutely dependent on Him (can I just say that I would like to learn those lessons another way…that did not include my children).  We cannot handle it but He can.  Those basic truths that you already know will be your hand holds.

And we hear, “God choose special parents for this special child.”  Blah, blah, blah, is what that sounds like at times.  I mean, thanks for the compliment but I have no need to be special or have my child be “special”.  The word “special” takes on an entirely new meaning.  That word is said often with pity and sorrow towards you and your child. 

All of it is hard.  And yes it sucks, and it may for a while.

But you walk through it, sometimes crawl through it, sometimes kick, scream and cry your way through it.  You will pray more and have more people pray for you than you even thought possible.  Not saying you will go through it with flying colors, but you will get through it because that is what you do as a parent…you do anything to help and protect your child. 

You will find love.  A deeper love than you ever thought possible.  You will love that child more and more (as well as your other children).  You will find strength and stamina that can only be explained as His divine hand holding you.  You will find joy, real true joy.

All of the good, bad and the ugly (Jeremy and I are both ugly criers, snot bubbles and all) are worth it because you love your child.  Oh how you love that child.  You will love that child no matter their abilities.  You will see past all of the diagnoses/medical issues/labels to just see your child, to see your child that you love and will be a part of your family (and don’t let all those doctors cloud that).

What you thought your life path would be has changed, changed drastically in just a matter of moments.  But that fierce motherly love kicks in at the same time.

Shortly after Brayden was born we knew his life verse:  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.

For He knows the plans.

Thursday, October 31, 2013

Halloween style

Don't be jealous...
Brayden only does Halloween in style and comfort.  He loves his lights, being pushed around with his family.  He is a fan of Halloween even if he cannot eat candy.

The scary halloween face

Brayden was practicing his scary face this morning...
Thrilled to get ready for school (oh the horror of getting dressed).  Then he is okay once he is wheeling out to the bus.

And it was crazy hat day at his school.  Brayden does NOT like hats, big sensory problem.  So we compromised with a little dash of orange hairspray.

Wednesday, October 30, 2013

Down the road

Do you have long term plans for your special needs child?

For most of Brayden's life, we could barely see past the moment, let alone long term plans.

Can you imagine being a parent of your special needs child for over 50 years?  Taking care of their every need at every moment, every day...for over 50 years.

Sounds exhausting, sounds hard, right?

But you wouldn't have it any other way.  You would do anything and everything to take care of them, have be a part of your family and be happy.  All of those years of love and joy with them.

Well, the family I married in to has a very special member.  Aunt Janine.  She is Jeremy's aunt (Jeremy's father's sister).  Aunt Janine is in her 50s and has down syndrome.  She has lived with her parents for all of these years (they are the 3 amigos, the fun bunch, many nicknames for the 3 of them, they are a package deal).  Janine has been a constant joy in the Jenkins family.

Today is the day that Janine is moving to a nursing care/assisted living facility.  Over 50 years she has lived with her parents.  Janine has down syndrome and Alzheimer's (and lets toss in seizures for them to handle as well).  Her health has been declining as well as her parents.  Grandma and Grandpa Jenkins (Jeremy's grandparents) have their health problems and concerns as well.  For Janine health and safety, as well as theirs, she can no longer live at home.

Please pray for them.

It will be one of the hardest moments in their life. 

I cannot fathom getting to that place with Brayden, when we can no longer care for him.

I have been on the other end of the spectrum when I feel trapped at home because of Brayden's needs...but talk about reality check...we can have him at home, we are able to care for him at home (of course with some help).  And I cannot even entertain the idea of not having him at home, not providing for his every need.

All of those years for them to be taking care of Janine, then to not have that primary role...

It will be heartbreaking.  But Janine needs more care and the family supports their decision, they love them.  We all adore Janine and so does anyone who has come in contact with her.  She truly has a deep joy in her heart.  Grandma and Grandpa Jenkins love Janine.  Grandma said that she loved watching Grandpa's servant heart when caring for Janine, it made her love him more.

But this is an act of love.  Selfless love.  As much as they want Janine to be at home, they love her enough to protect her and find the best care for her.