Tuesday, September 24, 2013

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.

Monday, September 23, 2013

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.

Wednesday, September 18, 2013

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.

Monday, September 9, 2013

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...

Saturday, September 7, 2013

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...

Thursday, September 5, 2013

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...

Wednesday, September 4, 2013

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?

Tuesday, September 3, 2013

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.