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 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.


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 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.