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).