Monday, May 26, 2014

Dip those Toes

Brayden absolute favorite place to be is outside.  He is so content and peaceful outside.  Nice weather and fun with friends, all outside for memorial weekend fun.

Then time to dip the toes in the pool.  He could have sat there for hours (of course the dog there to "help").

Thursday, May 22, 2014

Dust off the Oxygen

Before the ketogenic diet (and part of the reason Brayden was put on the keto diet), Brayden could have seizures that involved breathing problems.  His breathing would be shallow, moments of not breathing, breathing labored and very high heart rate.  The oxygen was parked beside his bed.

Once he stabilized on the ketogenic diet, those scary not-breathing-seizures were a thing of the past.  I even blogged about putting the oxygen away in the closet.

Coming off the ketogenic we have seen slight changes in his seizures.  Then came this morning.  It was about 6:00 a.m. and I woke to Brayden's nurse shouting for me.  I dashed down to Brayden's room to see him in distress.  Very distressed labored breathing.  We put the monitor on and saw his O2 saturation was in the 80s (he usually is 95+) and his heart rate was continuing to climb.  Then we saw slight jerking.  He was seizing and not stopping.

We quickly gave him Diastat to stop the seizure.  The jerking stopped but his breathing and heart rate were still troubling so I wheeled the oxygen out of the closet and hooked him up.

Heart rate still high but his O2 was better.  The Diastat knocked him out (as did the seizure) so he slept for a couple of hours.  When he woke, we removed the oxygen and his O2 did not look good again and his breathing continued to be labored.  And he was out of it.

Then comes the question of calling 911...I called the doctor to discuss.  He did not appear to be in a seizure but we could not his breathing to be comfortable.  Instead of calling 911, we loaded him into the car along with monitor and portable oxygen tank.

And wouldn't you know it, moments away for the doctor, he was fine.  Breathing get, heart rate looking good and he was more alert.  Still went to the doctor.  They found he may have aspirated a bit almost causing as asthma like problem, thankfully that didn't last any longer.

We headed home and he was great for the night.

We will be watching his breathing with seizure from now on and praying it does not become an ongoing problem.

Friday, May 16, 2014

Special Needs Momma's Workout

Lets be real, being a special needs momma comes with a high level of stress that we learn to operate in to a somewhat normal status.

But when is comes to working out our bodies are taken through the ringer...
  • Lifting a child that cannot lift their own body in anyway, offering no help in lifting (in fact sometimes resistance).  It is a workout, especially when they want to be held for longer than your arms can actually hold them.  And when they are no longer little babies (perhaps 7 yrs old).
  • Leaning over the bed/table/floor many times a day to dress, change, diaper, wash them...while holding their position (again sometimes they offer more resistance than help).
  • The quick sprint across the house to help with a seizure, vomit or exploding diaper...sometimes you feel like you cannot move fast enough.
  • Loading and unloading the wheelchair.  These things are not light. 
  • Loading and unloading them from the car.  Oh how loading them in those car seats can work up a quick sweat.
  • Doing the loading and unloading in the pouring rain and making a mad dash inside...but no matter what you end of soaked and out of breath.
  • Walking the doctor halls and hospital halls.
  • Walking any hall or just around to keep them calm and happy.
  • Haircuts (stress and a workout for all involved).
  • Bending over in awkward positions to hold them still for x-rays or scans or tube changes while the techs work on them (for way too long)...all the while wearing the lovely lead vest which only pulls you down.
  • Sitting in awkward positions for long periods of time because they finally found rest in your lap and got comfortable so you dare not breath or move, in case it might upset them.
  • Holding them as still as possible, with the firm but not too firm grip, while the tech tries to get blood or get a line.
  • Hovering over their bed or hospital bed trying to comfort them, not wanting to leave their side, wanting them feel mommy right there beside them.
  • A mad dash to gather all of their things and medications before the ambulance arrives (or you need to speed away to get medical help).
  • Running from the parking lot to the doctor office because you were late and do not want to miss the appointment (because of a needed diaper/wardrobe change, seizure, vomiting, horrible DC traffic, etc.).
  • Lifting all of the boxes delivered with feeding and medical supplies.
  • Shaking all of the food and medication to mix.
  • Stress burns lots of calories, right?
  • Lifting, yes I listed this at the top but I needed to list it again.  There is a lot of lifting.
And all the things that sabotage any sort of benefit from the things listed above.
  • Being in the car driving back and forth to appointments.
  • Long doctor appointments (or days at the hospital) that leave you exhausted and hungry so the drive through on the way home becomes the option.
  • Hospital food.
  • Forgetting to eat.
  • Being to exhausted and barely having a free moment to even consider working out, letting alone actually doing it.
  • Snacking, lots of down time (the hurry up and wait game) at doctor offices and hospitals.  And eating a weird times.
  • Lots of sitting in those offices and hospitals.
  • Sitting doing countless phone calls and paperwork (for everything).
  • The drive home from Children's can pass Georgetown cupcake (and many other great treats).
  • Choosing some stupid TV show or movie instead of working out because you need something mindless to do and you just want to collapse in a comfortable position.
  • You cannot fathom adding one more thing to your to-do list.
  • Sleepless nights.
  • Everyone else comes first so a workout is not even on our mind.
  • Stress.
But the truth is, as a special needs momma, our back needs to be strong and arms stronger.  We need to be healthy, we are one keeping things moving.  But we feel there is not enough time to take care of ourselves.  And often feel guilt if we do.  The bed calls our name way more than those sneakers we should put on to workout.

So I am trying to get back to working far things have been working out...although I had to take Brayden to childcare at the rec center while I was in a class and I could hear his screams.  They did not come to get me but I could hear his protest.  And the stress added more tension to my workout (pro or con?!).

Monday, May 12, 2014

This melts my heart

This smile.
How how I love it.  He doesn't do it often so when he does (and with such joy) it is oh so special.

It completely melts my heart, every time.  How I wish I knew how to get him to smile like this every day.

Sunday, May 11, 2014

Mother's Day, like a mom

So we attempted church, all together as a family.  Usually one of us stays home with Brayden since he only lasts so long during church before things go downhill quickly.  Since it was Mother's Day, I wanted to try.

And try we did...without success.  Brayden got upset and only would calm down outside, while being pushed around.

Our nice Mother's Day lunch at a restaurant, turned into take-out and eating on the deck while Brayden rested in his bed.

Tuesday, May 6, 2014

Workout with Brayden

I am finally taking time to workout.  All of the different types of workouts start off as good ideas...taking Brayden on a walk/jog, then I try to take him around our neighborhood.

Our neighborhood has some serious up and down hills.  Pushing 60ish pounds (Brayden + chair) up lots of gigantic hills, is torture.  And I am determined to not stop.  It is not pretty...arms stretched out, butt sticking straight out and breathing that could border on hyperventilation.

Then you think going downhill is a nice breather but then holding on to 60+ pounds rolling down a hill, leaves you white knuckled, and clenching every muscle in your body.

A couple of miles pushing Brayden is one of the hardest workouts I have done so far.

Brayden could not love it more. Being outside and pushed around, is his happy place...maybe it will be mine soon too but for now, if you see me pushing him up a hill, don't stop to talk because I can't...I am too focused on actually breathing.