Tuesday, April 22, 2014

Thursday, April 17, 2014

The Birthday Boy's theme song this year...

It's my party and I'll cry if I want to.

The day of Brayden's birthday, he was not in the partying mood.  He was tired (perhaps from our zoo visit the day before).  He was not wanting to leave his bed much, so Carter and Luke brought the party to him.

They blew up balloons (from a left over tank I had) and decorate each one of them.  A big bunch and more to hang around Brayden's bed.
 Jeremy came home and we had our own little birthday party, just the five of us.

I wanted Brayden to sit up in his chair, like a big boy, to help open his presents and have tasting of his cupcake. 
However, Brayden was not having it.  No matter his age, he would rather curl up in daddy's lap.
Some how, the dog decided she needed to be in on the action and quickly found her place right next to Brayden.
Once everyone was settled, we opened gifts, sang Happy Birthday and had cupcakes.
Brayden had no problems with a little taste of icing.
 
Not quite the big birthday party we usually have but none the less, Brayden was not the mood for big hoopla, just a quiet birthday afternoon.
 Brayden had no problem letting us know when it was time to wrap up the festivities...
 Brayden is 7 seven years old.  WOW.

Friday, April 11, 2014

Possibly the best Field Day ever

A few weeks ago, I received a flyer about Brayden's first field trip.  Adapted PE Field Day.  Then I found out I was able to go with Brayden's class...and wow, I am glad I did.

The 3 buses for the five kids in Brayden's class (one kiddo could not make it), only two spaces for wheelchairs on accessible buses thus 3 buses, and we arrived at Heritage High School.  We unloaded the bus and entered the school with other special-ed classes from around Leesburg (elementary - high school special-ed).

The kids entered the school.  Immediately we could see this day was going to be something special.  The hallways were lined with the high school students who started to clap and cheer for the kids arriving.  High fives and cheers galore for the kids coming to the Adapted Field Day.  A true roar of excitement.


It was absolutely precious.  I burst into tears and knew that I was making that terrible ugly face when trying to hold in the tears.  I was just overwhelmed with it...this was for our kids.  I was overwhelmed with why it was for our kids.  I just wanted to high five and hug every single person there but not wanting to look to crazy I just stuck with Brayden.

The kids were each assigned coaches and were given Field Day t-shirts!  The coaches had their own shirts with "Coach" on the back.  We met Brayden's coaches and off we went to play games.

The coaches showed no fear or nervousness about any of the children.  In fact, they were completely at ease and ready to have a good time.  Willing to try just about anything to make their day special...even with those (Brayden) who did not speak or offer much feedback on their own.  Brayden played lots of games.  He was up for everything his coaches tried with him.
Luke asked if Brayden won the tennis match...he did because his opponent fell asleep in her wheelchair.
Lots of games that many types of abilities could still participate in.  All very well thought out games and opportunities for fun.  Carnival games, sports, even dancing.  And some (Brayden's class) needed a little stimulation break...or a power nap so we headed outside for some photo ops.
Game time finished and the dance party started.  Coaches and the kids showing their moves with the Cha Cha slide and more.  Those in wheels where pushed around for their dancing.  The Heritage High School Mascot even made an appearance.
Brayden with his coaches
But wait, the special day was still not done.  There was an award ceremony.  Each school was called up to the front for each child to get a medal.  Lots of clapping , cheering and Heritage HS staff to encourage them as well. 
And a pizza party for everyone (or time to attached those feeding pumps).
 
Absolutely wonderful experience for kids that may not have many opportunities for such fun.  The staff at Heritage staff and high school volunteers were thoughtful and intentional to make this day what it was...amazing.

Wednesday, April 9, 2014

Need I say more

The shirts expresses Brayden's thoughts and behavior towards school.
Some day (hopefully soon), his feelings towards school will be better. 
He does have some good days...

Monday, April 7, 2014

Those Seizures

Four seizure medications (plus other meds):
Keppra
Lamictal
Phenobarbital
And the new addition, Klonopin

Brayden's seizures have increased since coming off the ketogenic diet.  We knew is would happen.  His neurologist knew it would happen.   Coming off the diet and he is growing...changes to medications need to be made.

At first we increased his Lamictal and Phenobarbital.  That took the edge of the seizures for a bit.  But then the last few weeks, he would have multiple seizures in the evening (4-6 seizures).  And then days with multiple seizures in the morning and evening.  And sometimes the seizures would look different than his typical ones.  Thankfully the seizures were short, not major trouble with breathing and he would recover quickly.

Ugh, I hate seizures.  I hate seeing him have seizures.  But the balance of a tolerable amount of seizures (as if any amount of seizures is tolerable) to being completely snowed by medication...hard to find the balance.

Wednesday, March 26, 2014

How many doctors can we talk to?

A long few days.

This picture can explain why...
 We did visit the pediatrician to help with ideas on getting things moving.
But that was not enough.  The next morning I had to run to the store for more essentials.
Brayden's constipation was not resolving itself, despite our best efforts with miralax, pre-biotic, and an enema.  A talk with the dr and we needed to clean him out.  3 enemas:  give one, wait for result, then give another, wait for result, then give 3rd...by the 3rd things should be clear.  But he wasn't.  So we waited more hours and gave another, that did not help enough.

Not much more we could do because early the next morning we had to be at Children's in DC for an 8:00 a.m. appointment in the bone clinic. 

A very early morning (we left even earlier because of the snow storm that was happening any moment).  The appointment was a follow-up on Brayden's bone health, that was not looking good (bones like butter).  Since the last appointment we weaned him off the ketogenic diet and added a super Vitamin D to help.  Thankfully no breaks or bone issues in the mean time.  We talked with the bone clinic team (a lead ortho, lead endocrinologist and some others) about the game plan for Brayden.  No scans or x-rays this time.  We did lots of labs to check him, no word yet on his labs.  Brayden will go back in June for bone scans and x-rays (and I am sure more labs), hopefully giving his bones more time to improve enough that they can see on the scans.  He could go on medications to improve his bones that he could not go on while on the ketogenic diet...but the doctors are not ready to prescribe that just yet.

I was secretly hoping they would do some x-rays so we could inadvertently see if he was stopped up with poop.  Because for the past 24 hours, Brayden was only getting more miserable and incredibly lethargic (he barely whimpered during the lab blood draw).  We left Children's and I talked with Brayden's pediatrician, who was helping us on her day off.  She was not in the office so she told us to call Brayden's GI doctor.  Since we had already done the enemas the day before he told us to dose him up with Miralax, 3 large doses of Miralax over 3 hours.

And we wait.

Nothing.

I did joke that Brayden had his first colonics...just not the great med spa kind of colonics.  And I can tell you Brayden was not a fan, nor was I (seriously who signs up for to be a colonics tech?!).  But we needed to help move things along.

At bedtime, we finally have a big result.  Big...needed a shower big.  He slept well that night.  Then the next morning he had two more "results".  However, he is still incredibly lethargic and quite pitiful looking.  Not sure what to do for him, may be seeing a doctor soon.  Was constipation really the issue or a symptom?  We are having constipation issues since coming off the ketogenic diet, he has not been doing well with pooping on his own.

In the midst of all of this I also talked to his neurologist about seizure control...but that is for the next post.

Tuesday, March 18, 2014

Just when I started to think I had to all together

then the longest day ever happens...

A weekend of a basketball tournament and Jeremy heads out of town. 

Saturday was under control.  Carter had a couple of games (won one, lost one).  He did miss a couple of birthday parties but he was just as happy to play basketball.  Brayden was home with his help.  Luke tagged along with me and then headed out to his cousins birthday party.  Jeremy was able to help during the first basketball game but flew out of town before the second game (don't worry I face-timed him to see the game till his plane took off).  We were gone most of the day since the tournament location was about 40 minutes from home.

Then came Sunday.  I decided not to attempt church with just myself and the boys.  We left the house around 10:20 a.m. for the busy day.  I packed basketball gear, wrestling clothes, changes of clothes, food for Brayden, Carter and Luke.  Carter had his first basketball game, they won, so they played again in a couple of hours.  We head out to get some lunch before the second game, in the meantime I am trying to figure out how to get Luke to his wrestling awards banquet in a couple of hours...of course the opposite direction of home and the basketball tournament (did have arrangements for him but it got a little mixed up because of the basketball tournament).  Carter's team wins the second game of the day, so they play again in a couple of hours.  Carter goes with friends because I need to drive Luke into Sterling for his banquet.  Did I mention I have Brayden with me for all of these activities?!

Of course Brayden is looking adorable in his team t-shirt (left over from the misordered sizes)

I get Luke to his banquet just in time.  Then I did make a stop at the drive-through Starbucks.  And thank goodness I did because the real "fun" hadn't even started yet.  I thought I had everyone taken care of...Luke made it to his wrestling awards, Carter at his basketball and Brayden moderately content with me...and some where along the way everyone was fed something.

I make it back for Carter's game, which was supposed to start at 6:30 p.m.  It didn't start until sometime after 7:30 p.m. (I stopped looking at the clock because I just didn't want to know how late it was getting).

Now 7:00 p.m. is Brayden's bewitching hour.  It is his bedtime and medication time.  He was happy so I pushed it...thinking I had it all together (I really should have just taken Brayden home and Carter gotten a ride home with friends).  One of the buzzers/me yelling during the game set him off but he recovered.  Then I started to smell something, I couldn't change him at the car, like a prefer to do, because it was POURING down snow.  So  I dashed outside, while someone kept an eye of Brayden and gathered the necessary supplies to change him.  But the high school was pretty much shut down and I cannot change him in a bathroom so we went under/behind the gym's bleachers.  And it was a big clean up...and I did not have an extra pair of pants.  I finally cleaned him up (I was sweating a bit from trying to do it on the blanket on the floor) and he was content.

The championship game ended (Carter played barely a minute but was happy to just be on the All Star team).  I knew I was pushing Brayden too much.  It was already two hours past his bed and medication time and we were not getting home anytime soon.  I load him in the car, as he was screaming mad.  He screamed for awhile, which starts the gagging/vomiting but he finally passed out asleep.  I was worried about his medication because we have been seeing an increase in seizures at night time.  All I could think was to get him home and get his meds.  But I still needed to pick up Luke from friends who thankfully kept them at their house after his wrestling awards until I could come get him.

And at this point it is pouring down snow.  Snowing hard enough that it became hard to see the roads...not because the roads were covered, it was just snowing that hard.

We make it back home a little before 10:00 p.m..  And Carter and Luke have friends over to sleep since school was canceled the following day due to the snow. 

I was busy working on Brayden while the boys were settling in, they were all ready to head to bed after the long day of basketball.  Then one of the boys comes to get me...Luke is throwing up all over the place.  I had to call the boys' mom to come get them while I helped Luke.

Poor Luke did make it to the bathroom but not the toilet.  He needed a shower but had to go to another bathroom for that while I did the clean up.  The shower curtain had to be taken down and the towels hanging on the wall.  The rug tossed.  Walls, doors, floor, toilet and bath tub cleaned.  He hit everything.

The boys left and Carter came to help me.  Finally got Luke to bed, finished up with Brayden and worked on the clean up.  Luke rushes to the bathroom again...thankfully made it this time.  Tuck him in again (while hearing an exhausted Carter murmur from his room if everything was alright).  About 12:45 a.m. my head hits the pillow.  And about ten minutes later Luke comes in to get me, he got sick in his bed.  I strip the bed, decide to only put him on towels and a sleeping bag to sleep (with the obligatory bucket and towels beside the bed).  I work on the clean up, again, and have NO idea what time I got to bed.

So thankful the following day was a snow day.  Luke was starting to feel better (got up one more time that night).  Carter spent the day at a friends house.  And Brayden was sitting by the fire...because he had another diaper situation and I needed to clean his bed as well.

Who wants to come do my laundry?!  I thought I had it under control until all of this.

And a side note. I made myself a late dinner that night but was busy helping with Luke.  I came down stairs to find the counter top empty...the dog ate it...which was kind of okay because I lost my appetite cleaning up Luke's bathroom.

Seriously, why does this happen when Jeremy's out of town?  Murphy's law kind of night.

Thursday, March 13, 2014

Perfect match from Dr. Seuss

Dr. Seuss's birthday was a couple of weeks ago.  As with many elementary schools, they celebrate his birthday in some way.

Brayden picked out a book from the library.  Actually they picked it out for him.
Could not have been a better choice.  Do they know him or what?!
Perhaps they have heard him fuss enough to know that he would much rather be at home in bed...not at school where he actually has to do some work.

Monday, March 10, 2014

The biggest ever

diaper blow out.

I just needed to document tonight's diaper...no pictures to scare anyone.  It might have been the worst we have ever seen and for Brayden that is saying a lot.

I went to check on Brayden this evening because he was getting loud.  I barely walked into his room and the smell hit me.

I pulled back the blanket and could see it coming out of the front of his pants and the back; and of course up the shirt.  I immediately called and then texted Jeremy, begging that he was close to home to help.  No answer from Jeremy...did he not want to clean up?!  This epic blowout activated my gag reflex so I was not sure how I could do it on my own.  I cannot recall a time Brayden has made me gag but tonight he did.

As I started to clean up Brayden, Jeremy walked in the door.  And wow, that was a good thing.  This was a two man job.  Well, technically three but Brayden was not helping, he tends to be counterproductive in such situations.

I am always wondering, as sometimes times standing there looking at Brayden, were to start; how to peel off those clothes without spreading it everywhere and making him more miserable.  There really is no way to do it.  Jeremy just dives right in and starts undressing Brayden.

This required wipes, change of clothes, shower, scrub down, hot washing machine, etc.

Jeremy worked on Brayden in the shower, while I worked on the bed.

Brayden was clean inside and out.

I was not expecting such an incident.  We have been battling his constipation that past several weeks since completely coming off the ketogenic diet.  Miralax everyday was not helping, so we had to give him an enema a few times.  This time there was no enema, just his daily dose of Miralax...that worked a little too well.  We need to get him regular but haven't found the best way yet.

For those you who may think this post is gross or inappropriate...well, bowel movements are part of our daily conversations.  It is a big deal (and makes one miserable) if there is not enough or too much.

I know that Brayden will sleep good tonight.

Sunday, March 9, 2014

Take care of yourself, they will be fine

Some words from Jeremy to me.

Carter and Luke have become obsessed with skiing in the past few weeks.  Their first time was mid-February and since then, they have hit the slopes 10 times, have season passes for next year and their own gear (so do Jeremy and I).  They both learned to ski right way and keep pushing themselves to ski better and on harder slopes.

I have been trying to keep up.  Only skied once back in college
and now several times with the boys (gone with them when we have someone to stay home with Brayden).  I have been skiing pretty well, trying to get my balance and handle it.
But I have had a couple of big spills, getting off the ski lift.  Both times I was so focused on the boys; making sure they got off okay.  Then realized I was delayed in getting up...which then leads to a big spill, the lift stops, etc.  The biggest spill was on the four person lift.  All four of us getting off, I was so focused on Luke that I did not stand up in time, I tried to hop off quickly but my spill took out the entire family and a new ski pole.

When we finally made it down the mountain, Jeremy told me sometimes "You just need to take care of yourself and the boys will be fine".  I was so focused on them and not myself, that the result was not helping them but hurting them.

I think as a mom, and even more so as a mom of 3 and one is special needs, you focus on everyone else's needs.  You think about yourself last.  That is just the way it is, it is just what you do as a mom.  The vast majority of time that works just fine.  But then you realize when you are off, then it makes the whole house off.  The good 'ol, if Mama's not happy, ain't nobody happy.

As the mom, you set the tone of the house.  If I do not take care of myself, am I really helping or hurting my family?  If all of my focus is on them, does it really help them?

Taking care of myself is easier said than done.  There never seems to be enough hours in the day, there is always some need to be met; so without much thought, everyone else comes first.  I automatically become focused on the boys that I don't even realize I am not taking care of myself.

With Brayden in school more this year (and less doctors), I am trying to make time to take care of myself.  Joined a Bible Study (tried a few times in the past without much success in being able to go consistently), trying to workout again (tried Yoga for the first time), making times with friends and making time with Jeremy.  Little bits of time here and there throughout the week.

I will let you know how it goes...I am trying, really trying for first time in years.  Trying to take care of myself, knowing the boys will be fine.

Thursday, February 27, 2014

Working on that Food

Brayden is officially off the ketogenic diet.  He has been off for a couple of weeks.  We have seen a slight increase in seizures, a bit more frequent and a bit more dramatic...but not calling the neuro quite yet, giving him time to possibly adjust.

With the change in diet, comes changes for his GI system.  Brayden's GI system can be a bit temperamental.   We are working towards him becoming more regular, if you get my drift.  And we have had to give him some help with moving things along...sometimes it's not so pretty.  Oh, he can be so miserable if he is not regular and too many days pass.

The big goal for his food is not only to handle being off the ketogenic diet but to increase the rate of his food.  For over 3 years, Brayden's food runs at 42 ml/hr and that is slow.  His food is running constantly and we are still not getting all of his food in him in 24 hrs.  Between riding the bus, activities at school, moving him or anytime he needs to be unhooked from food, we are just not getting it done.  And every calorie counts. I am trying to increase it without causing an increase in vomiting (he is fed into his j-tube but it still can aggravate him enough it cause vomiting, even if he does not vomit the food).  I increased to 43 ml/hr a few weeks ago.  Last night I increased to 44 ml/hr.  My practical goal for his rate is 45 ml/hr...the pie-in-the-sky goal would be 50 ml/hr.  Any mom who handles those feeding pump rates knows just one number up or down can be a dramatic difference.

Wednesday, February 19, 2014

Yellow Puss is Never Good

Brayden's snow days were not as exciting as Carter and Luke's.

One morning while changing his diaper, I felt something wet and slimy...never a good feeling when changing a diaper.

A quick assessment and I realized it was not coming from his diaper at all.  His incision on his hip was oozing.   It was oozing yellow puss and irritated all over.  A little clean up and I could see a hole in the incision were the puss was coming out.  And it was really bothering him.

I called a friend, who in recent years became an expert on her daughter's many incisions and infections.  She talked me through what to do (Brayden and her daughter also share the same ortho dr).

Things were looking better.

The next morning, things looked worse.  So I called the doctor and we (we, as in, I had to take Carter and Luke with us because of canceled school, much to their chagrin) headed to the office.
The doctor got a culture, cleaned it out, put on a little silver nitrate and bandaged him up (with a prescription for antibiotics).   Oh the pain he was in when she digging into the incision to clean it up.  I know Brayden has an incredible pain tolerance so when he was hurting so much that it was a silent scream, I knew it was serious pain.  Thankfully he quickly settled and relaxed once we got in the car, with a huge sigh on relief to get out of that doctor's office.

It is starting to look better but will check in with the doctor later this week.