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).

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.

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 mad...in case he did not make it clear before.

Not a fan but it did help.

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 anyone...as 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.

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 position...how 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 discomfort...how 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.

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.

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.

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.

No rest for the weary

I supposed the youngest of any family is dragged around from thing to thing, always at siblings events and countless hours of things the youngest has no interest in and testing their stamina and patience.

Well Brayden is no exception.

Since the start of fall sports (which actually start the first week in August), he has endured hours and hours of football practices and games.  While is used to be a great amount of torture for him (crowds cheering, shakers shaking, the weather...and oh those cheerleaders, lots of little tiny voices screaming for little league football), has become something he seem to enjoy.  He likes bring outside, around the kids and family.  The word football no longer causes his face to tighten into a grimace.

Progress, people, major progress.  We have been able to make it to almost all of the boy's football games.

And of course we push Brayden's limits with football Saturdays and an entire day spent at the field with games.  He still lets us know when he has had enough.

Then there is basketball.  Again with the crowds cheering, buzzers buzzing, bouncing basketballs and the refs whistles...all could be cause for a meltdown and Brayden's evacuation of the gym.  So far with a few basketball events and Brayden has been calm.

But basketball season is upon us and almost into full swing (not Brayden's favorite sport).

Then there are all of the additional "fun" things Brayden is a part of...

Fall festivities.

One of my favorite times of year.  Farms, pumpkin patches, corn mazes are all are our must do list for this time of year.  And guess what, Brayden is going too.

Even if it rains a little, we compensate.

And we may make him take pictures (apparently torture for any child).

And we decorate all of his chairs with obnoxious lights (too bad the orange ones on this chair stopped working so I will be replacing them!).

Flashback to those vomiting days

Brayden had been under the weather for several days.

It is one of those times I really wish the whole non-verbal thing was a non-issue and he could tell us what was bothering him.  He just seemed miserable and I really had no way of figuring out how to help him (other than some good cuddles).

Thankfully it wasn't major medical issues or special Brayden issues.  It just seemed like a regular kind of under the weather thing (which thankfully hasn't happen to him much, he was too busy dealing with those major medical issues).

Unfortunately the little under the weather thing brought back some major vomiting.  A couple of days of major vomiting.  He would start with a little cough, that turned into gagging, the gagging he could not get under control which turned in to vomiting, this awful retching that was so violent and we could not help him stop.  It looked so hard on him and then he would have tears streaming down his cheeks.  Oh how much I hate him vomiting, it is miserable, especially when it happens so frequently in such a short amount of time.

I spent a couple of nights up with him, trying to catch the vomit before going over him or his bed.  Lots of rags and towels stacked on his bed.  It amazes me that he can vomit something up when he gets nothing into his tummy.

Then came the fever.  He looked hot to the touch.  Carter and Luke wanted me to bring along the thermometer when we went out to keep checking him,  he just looked so hot and they were concerned.  But the fever was only 99.7 - 100.

So yesterday we visited the dr.  Nothing significant.  He did much better yesterday and slept great last night.  No return of the fever yesterday or today so Brayden headed off for school.

It may have been a first

Brayden made it through an entire movie.

Ask anyone who has ever been to a movie with us...Brayden walks the halls of the theater usually crying, never watching an entire movie.  Perhaps it is too loud (it is louder, right?...not just getting older and less tolerable).

Brayden is not a fan of the movie theater.

But still we try.

Carter's everlasting birthday and we were supposed to go to the circus.  But it did not work out (if ever the Big Apple Circus is in your town, they are incredibly accessible and so helpful to those in wheelchairs, great seats and discount ticket prices, just call the office).

Leaving the decision up to Carter on what to do, so we headed for a 3D movie.

Snacks, glasses and we were ready.

And we had to try on the glasses for the photo op.

Brayden sat in his wheelchair for most of the movie and then nestled in my lap (I could have taken a nap with his cuddly little body keeping me cozy).

We walked down to a restaurant for a late lunch and a stop at pinkberry for a sweet treat.  The boys love to give Brayden a little taste and watch him work his mouth like it was a spoonful rather than just the drop put on his lip.

Brayden handled it all with flying colors.

However when we got home, we realized Brayden was actually sick and the relaxed behavior for the day was really him being very lethargic.

How?

Brayden is back in his hip brace for bedtime.  He typically fights the process of getting strapped in (I mean, who wouldn't fight this contraption) but he settles down quickly and typically sleeps great for the night.  It is a task to get him in the brace, especially his legs.  In protest he will hold his legs up tight in the frog position so we have to take our time helping him stretch out.  And we know we cannot force his legs out ( past broken bones and all).

This night, I strapped him in.  I left the room for a bit to tend to the dog, who was demanding it was her dinner time, and then I did a little laundry.  I went back to Brayden's room to finish up the last of his bedtime medications and he was deep asleep...but I smelled something.

He needed a diaper change (we all needed his diaper changed because it can stink up the house, the keto diet and his medications must be the cause).

We joke that you don't poke a sleeping bear in our house.  The bear in this case is Brayden and bothering him when he is sleeping is never good...never.

So the question was, How can I change his diaper without taking the entire brace off and not wake him?  Or at the very least not cause him to have a screaming fit?  It looks possible but the leg braces are attached to the chest brace, all one big piece.

With no one home to help (boys at football), I went to work.  There was no way to change the diaper with him in the brace and I did try.  So I tried to just take out one leg...which lead to a bit of a mess and Brayden awake and mad.

Finally all was cleaned up and Brayden strapped back in and still mad.  Although he did calm down faster than I expected.

About 20 minutes later I hear Brayden coughing and then the vomiting noise was starting.  I dashed to his room.  We usually roll him to his side when he vomits or sit him up...neither was an option in the brace.  And I could not get him out of the brace quickly enough to help.  So it was rolling down the sides of his face to the back of his neck.  I turn on the oral suction machine to help.  Another clean up and he is back asleep.

Poor guy, such work just for bedtime.

This brace is supposed to help him, right?  What a pain.

The not-so-therapy dogs

We have been dog sitting for Jeremy's parents.  It is our dog's sister.  The two dogs together are really entertaining and quite different personalities.
They both liked to greet Brayden when he got home from school, right there by his side (Maddie probably curious and our dog, Gander being protective/jealous of Brayden).

And then everyone needed a nap...it is a hard life to be so spoiled (and I mean all of them are spoiled).

Botox time

Brayden has a right leg problem.  It is always a problem.  So we are trying to make Botox a routine every few months.  He does get Botox in both legs but the right leg gets more attention.

It does make a great difference in his legs and his comfort level, we usually see a difference immediately.

 We have been to this hospital a few times now (Inova Alexandria).  It is much smaller than the ones we have become accustomed to but the staff there is starting to recognize Brayden and Brayden is quite comfortable there...no fear of hospitals for him (just don't try to get his blood pressure or alcohol swab him...all seem to be reminders of drawing blood). 

He did get and we were home by dinner time (it also helped that it was the first day of the government shut down so traffic was very light).

Seriously, what is that smell?!

I don't know if it is because of medications, the ketogenic diet, being tube feed or his GI system, but Brayden can have some MAJOR diaper blowouts.

Yes, this is a poop post, sorry (and I will refrain from using pictures).  And I am not trying to embarrass Brayden,  some how even he likes poop is funny, just like all boys.  I think he thinks the word poop is funny...what have his brothers been teaching him!?  Frankly, we just have to laugh when it comes to poop because otherwise it is just disgusting for all.

Brayden has become regular, kind of predictable to have a bm in the morning.  Well this morning, I did not have his nurse, of course of all mornings.  I go in to his room to say good morning and find him in a mound, oozing out of his diaper, it is everywhere.  Knowing that this was requiring a major wipe down, clothing, bedding change, bed cleaning, etc, I started to get to work on the clean up.

What makes me sad is that he doesn't cry or alert me that he is covered in poop, laying in it for who knows how long.  And he even has been kicking his legs, spreading the mess even more.

In the morning, I tend to be in my pajama pants and a large sweatshirt, something cozy especially since the cold weather is coming.  This morning I had on a gigantic hooded Jenkins Restorations sweatshirt that Jeremy brought home from the office; the hoodie with the strings hanging out to tighten the hood.  I quickly noticed that the strings were getting in the way, I tossed them over my back and proceeded with the clean up.  And it was some clean up...I even thought about tossing everything in the trash rather than scooping it all off the sheets and clothing before tossing it in the wash hoping for a miracle cleaning.

I scrubbed Brayden clean and then my hands.  I got Carter and Luke off to school and tended to the dog (who lately cannot be left alone for a moment).  I start to clean up the kitchen and I keep smelling poop.  Now, it does stink up the house so I opened a window and had a couple of candles burning, in hopes the smell would go away quickly.

I was still smelling it, so I checked Brayden to make sure he did not go more.  He did not and wanted to be left alone after going through the major clean up of him and his bed.

Oh that smell.

I go upstairs to put in my contacts and I see myself in the mirror for the first time this morning.  Apparently I did not move the hoodie strings in enough time because they looked like they had been dipped right down into the poop.

Oh that smell, I will never get used to it.

Stand up

The stander looks like a medieval torture device, you watch Brayden get strapped in and then cranked up to a standing position.  Sometimes you may think it is torture for Brayden with the way he carries on and screams.  But really it is good for him, strengths him.

Unfortunately, Brayden was not in the stander for months.  It was stopped in the spring when he was miserable with his right leg, then we discovered the fractures, then he was in a cast, etc.

We had to get the ortho's permission for him to start back in the stander at school this year.  He has moments when he can handle it and others when he acts like he cannot it (since it is not his favorite activity, he will do some serious complaining).

Trying to convince him that the stander is great.

He needed respite

The Monday after Brayden's first weekend at Jill's House was expected to be a rough one, not that any one enjoys Mondays but Brayden notoriously does NOT like Mondays and going back to school.  So add to this Monday, he had been away for his first weekend.

Jeremy and I talked about keeping Brayden home from school, even having concern that he would be so exhausted from his weekend at Jill's House that seizures could be a problem.  But Brayden slept well that night and was happy that Monday morning so we sent him to school (with his nurse).

I was fully expecting Brayden to have a rough day but then I got a text from his nurse at school, "Bray is so happy!  They are wondering what they did with him, lol!"

And he continued to have a great week, a really great week.  And Brayden is not a huge fan of school, he often spends a good bit of time fussing...not this week.

So theories have been floating around about Brayden after his first Jill's House stay:
1.  It was like a spa weekend - nice relaxing time, filled with relaxing activities like floating in a warm pool.  He was rejuvenated.
2.  Brayden finally put on his big boy pants - as with any child, they seem to grow up just after their first times away from home and mom & dad.  Jill's House made Brayden finally own up to behaving like a boy and not a baby (not that mommy helps with treating him like my baby...).
3.  Brayden needed respite...from us.  For the first time Brayden was not dragged to countless activities (sports, church, more sports, restaurants, errands, etc.).  Brayden had a break from our hectic life.  He finally got rest.

He may really be looking forward to his next stay...his need for more respite.

With flying colors

Brayden completed his first weekend at Jill's House!

And he actually did well!  Not that I was thinking he wouldn't do well but...he does have a hard time with new unfamiliar people and places.  However when you are as spoiled as he was during the stay at Jill's House, there is not much fussing to be done.

His fun:

• the swing - a special swing that the wheelchair can load on to
• the music room - he does love music
• the pool - he loved the pool and of coursed fussed when they took him out.  he wanted more!
• And of course being outside, pushed around, which he would let anyone do for him for hours.

The nurses handled all of his gear and requirements just perfectly (and no phone calls to me for questions).  The staff and volunteers were so wonderful and thoughtful.  Jill's House emailed us pictures of Brayden on the swing and in the pool during his stay.  They said he did have hard time with transitions, which is pretty much his norm on any day (but who really likes change anyway, especially when they take you out of the relaxing pool).

I went to pick Brayden up (Carter and Luke at basketball, Jeremy on his way to Alberta) and was so excited to see him.  This was the first time for him to be away from his family and I just wanted to get my hands on him.  They wheeled him out and I swear he looked bigger, more grown up.  And (kind of to my surprise) he was very content and comfortable.  As he heard my voice, his face became puzzled, trying to make sense of it all.

I loaded him in the car and we headed for home.

We pulled out of the parking lot and the tears finally came.  I was a bundled of nerves all weekend but no tears until that moment. 

I have these moments where it is like I take a step back and realize that this is our life.  That I have a son like Brayden, that we are the people using Jill's House and we just left him for an entire weekend...what a big deal all of this is.  I was overwhelmed with finally seeing him, for what seemed like much longer than the weekend.  Overwhelmed that he actually did it.  Overwhelmed that he can go to Jill's House.  Overwhelmed with joy that he even has this opportunity.  I was so happy for him, so proud of him.

We are planning for future weekends, hopefully becoming a regular.



Now ask who was more of a mess this weekend Jeremy or I...

We made the drop

It was short and sweet...very short.

I was not prepared for how short.  We walked in and were greeted by several staff.  They said, "Okay, this is where we say goodbye."  Quick kisses and no tears...they wheeled him off while we meet with the nurse.

I get why the drop off is quick...no drama, lingering parents, upset kids, etc.  But when we dropped off Carter and Luke for their camp, we saw their room, helped get their bed and stuff situated...nope, not with Brayden, off he went.  Thankfully he was quite content.  Oh how I would love to know what he is thinking...

We sat with the nurse for a while to go through all of his medications, feeding, drains, suction, etc.  then Jeremy and I headed home.

The night was restless...eerily quiet, no sound of machines, Brayden kicking his bed...Jeremy said he woke up several times thinking he was hearing Brayden.

And I have checked my phone more times in the past 12 hours than Jeremy does in a normal day (and his phone might as well be surgically attached to him, for those of you that have been around him know what I mean).

So no news is good news.  No phone calls so Brayden must be doing well and the nurses must have figured out all of his stuff.

So for the rest of the weekend I will continue to check my phone and I may or may not have called myself to make sure it was going through...

I may be a mess...

Tomorrow is big.

Really big.

It is Jill's House time.

And my heart is racing.

Brayden's will be checking in to Jill's House for the first time tomorrow night.  He will be there from 5:30 Fri evening till 5:30 Sun evening...all weekend.  Lots of paperwork and planning have been done to prepare for this weekend.

In case you don't remember, Jill's House is an overnight respite facility for kids with special needs.  It is a beautiful place.  We have been calling it "camp" for Brayden and the boys.  Brayden will be there all weekend.  Originally we planned to have him stay his first time for Jeremy and I get away for the weekend (actually stay away from the house and stay in the closest hotel to Jill's House).  We were not able to pull that off this summer so Brayden is staying there while we go about our regular fall weekend of sports, church, etc.

I have NEVER been home without Brayden, unless he has been in the hospital.  And I really don't want to be at home with out him, it will feel empty and I will feel lost.

I know he will be well taken of during his stay but I cannot help but feel guilt.  I don't like feeling like we need respite from him.  And he has had a hard start to school this week, will this be too much?  I barely like him going to school but I know it will benefit him.  Sending him this weekend feels heavy on my heart.  I know that being at home with his family is where he loves to be, why would I send him away from that? Will he learn to love Jill's House as well?  I don't want him to feel lost, abandoned, confused, upset, lonely, scared...I can go on.

He has no idea what this weekend will bring and I have no idea what he will understand.  I pray that he feels loved, spoiled and able to enjoy his stay.  But I am a mess thinking about him there and it doesn't help it is the first week of school so I miss having all my boys home, it is pms, I have terrible poison ivy that is bring treated with prednisone that seems to give me anxiety (does this do this to anyone else?), then Brayden is going to Jill's House for the first time and Jeremy leaves for a trip this weekend...all to equal a lot of nervous energy on my part and restless sleep.  I cannot even begin to share the dreams I have been having about Brayden.

So if you think about us this weekend please pray for Brayden, for his first big adventure.  For his momma and her big worries...

How was the first day?

I will let Brayden tell you...

He was a grouch.  Look at this face he was giving his teacher.

He was not willing to compromise...temper, temper.

So he wore himself out, not once but twice (looks quite angelic when he is sleeping).

Brayden's home care nurse was with him at school and sending me updates through out the day, nice to have a spy.

Once he came home he was not any happier with us for sending him to school.  He would fuss at us if we tried to talk to him.  He was mad at me and would not let me hold him, giving me that great arching back that makes him impossible to hold.

All I can say, is it can only get better...right?

First Day

And this is going to be interesting.

Brayden is heading for his first day of kindergarten.  And he knows it.

He will be at the same school, Catoctin Elementary.  Going from 9:30 a.m. - 2:30 p.m.  He is in a different classroom, moved out of the preschool program in to the big kid program...thankfully the room right next door from his previous years.

Brayden knew it was a school day.  I would like to say he was thrilled the way his brothers were this morning...however, he started to fuss...he knew exactly what is going on and he was not pleased.  Brayden prefers to be home with his family, adjusting to school is, well, always an interesting adjustment.  It may take some time.

The bus drive and aid, we had last year so that helps.

Some how I still get nervous.  I am sitting in Leesburg at a coffee shop, just like I have done most first days of school.  Some how being closer to his school helps.