Thursday, June 26, 2014

Official Ride for Jill's House

Pictures and the video posted all about the ride and I wanted to share.  It is really an amazing event.  Over 220 motorcycles on the road with police escort, a trailer and team to help the motorcyclists, and roads closed down for this ride.


You can see Stephanie at 1:57 and 2:19 in the video (big yellow Harley, with Team el Tortuga flag on the back)

We are so thankful to those who gave and Stephanie for setting up the Team el Tortuga Brayden!

Tuesday, June 24, 2014

Checking those Bad Bones

A long morning to check his bones.  Headed into DC for the Children's bone health clinic.

Traffic was miserable and there is still that awful detour to get to the hospital.

Before meeting the doctors and having tests, it was time for height and weight, just like any other time.  For quite awhile Brayden has been at 42 and 42.  42 pounds and 42 inches long.  I was expecting some growth but when the nurse said his weight, I asked her to repeat it.  He weighed in at 54 pounds...that is one chunk of love.  He also grew 3 inches.

After that, came the waiting for Brayden's turn with the dexascan to check his bone density.  Then off to take x-rays to get another look and make sure there were no new breaks or fractures.  It was finally his turn for the scans and x-rays, Brayden did a pretty good job cooperating with the awkward positions and being completely still (with the nurse and I holding him still...he is one strong little thing) for the dexascan.  Then to x-rays, and had to sit him up against the board...talk about a workout for all.

Back to the room and we wait for the doctors.  They finally arrived and came in to tell us the first round of dexascans and x-rays did not give them the best pictures so we had to go back for another try.  Thankfully the second round provided better pictures/view (cause there was no way Brayden was going to do those again in those awful awkward positions).  But he was wiped out and ready to be done with everyone.
Hours since we arrived, the team of doctors reviewed the results and Brayden's bone health is still extremely poor, still not-the-chart poor.  Thankfully there has been some improvement
since coming off the keto diet but more needs to be done.  And thankfully no new breaks.

In a few weeks, the team wants to admit Brayden for the day (should not need overnight) to start an infusion, Pamidronate.  After the initial infusion, he will go back every few months for another infusion...which is outpatient after the first infusion.  They do not know how long he will need the infusions, he still has many more years to grow and a long way to improve his bone health.  Each time he gets the infusion, the actual infusion takes 4 hours.

In addition to the infusion, it looks like they will be adding a couple of medications as well, but they haven't prescribed those yet.

We go back to the bone health clinic every 6 six months for repeat dexascans and x-rays.

After meeting with the doctors, we were still not done (while I am frantically trying to find people to pick up Carter and Luke at their camps because I did not think we would be at the hospital for the entire day).  The doctor handed us a lab sheet, we needed to go get labs...as if Brayden has not been tortured enough, lets add a blood draw.

The lab in the hospital was packed, standing room only.  Brayden was finally called and the tech got him in one stick (so thankful for the one stick).

On our way out, we ran into a sweet little girl from Brayden's school (adorable thing that I just want to squeeze).  And would you believe she is starting the exact same infusion process in a few weeks as well.  I know that mom and I will be talking...

But in the meantime, we just wanted to head home. 

Sunday, June 15, 2014

Needed Respite

After a long and hectic last week of school Brayden was ready to head to Jill's House.  I, on the other hand, did not plan this one quite so well.  Jeremy was out of town all week, Carter had 5th grade something many nights, I helped with the carnival and hosted all of the 3rd grade for a pool party...then had to load Brayden and all of his gear to head to Jill's House.  I was hot and sweaty and stressed.

Thankfully Jeremy made it home, literally jumped from his truck into my car to head to Jill's House with Brayden.  Carter at his pool party with friends and Luke hanging with his friends.

Headed in and I got Brayden ready for bed with all his meds and food.  Hugs and kisses goodbye and he was exhausted from the week and his eyes could barely stay open any longer.

The weekend went well except for a call concerning his seizures.  Apparently he had two small episodes of not breathing seizures.  Thankfully only lasting a matter of seconds, not turning blue but enough to alarm the staff and give us a call.  And thankfully no more episodes.
As always, Brayden loved the pool (asleep again), outside walks and music.

One of our favorite parts of his Jill's House stay, is picking him up.  We miss him so much but that is not all.  He "talks" all the way home, very enthusiastically telling us all about his weekend.  It is the best thing.
video

Friday, June 13, 2014

Carnival Helper

For the past few years, I have helped coordinate the last day of school carnival at Carter and Luke's school.  With the chaos of the last week of school Brayden did not go to school for the last day, instead he came with me.  He did not make it through the award ceremony in the morning but was happy to be outside with all the kids for the carnival.

Thursday, June 12, 2014

Last Day of School (a day early)

Brayden finished kindergarten.  He might not have enjoyed every moment of school but he went quite a bit this year.  Monday-Friday, 9:30 a.m. - 2:30 p.m.
Because of all the end of year events at Carter and Luke's school, I could not get Brayden back and forth to his school.  So he ended his school year a day early, and there was no protest for that on his part.  He did receive his Completion of Kindergarten certificate...trying to get him to hold it on his own and he showed his he was not feeling like working and ready for summer break.

Tuesday, June 10, 2014

Battle of the Syringes

Over the years, Brayden has been on many medications.  Some not so typical medications or needed to made a certain way in order to give via feeding tube or because of the ketogenic diet.  We has always used a local specialty pharmacy.  The first has to restructure so we changed to another local one, Leesburg Pharmacy.

It has been the place that has that world local feel, where they know your name and go above and beyond to help.  We are at the pharmacy at least once a week to fill Brayden's many medications (to bad insurance will not let us fill all at the same time, it would make life so much easier). 

A letter came in the mail that we were going to close up shop except for their compounding center.  Yikes, find a new pharmacy?!

All their records where switched over to chain store, in the same shopping center.

The transition has been rough...not running his insurances properly (every time), giving us the incorrect number of pills (30 less that what we should get) and then the problem with giving the medication.

Brayden gets all of his meds via tube, the prescriptions even saw so.  The pharmacy does not have nor can gets us syringes to give him medications.  Brayden's feeding supply company cannot issue us syringes that small.  The pharmacy's resolve was to measure in a cup...problem when you are measuring to the .25 ml...and I am not that talented to measure things that meticulously without a syringe.  And then how am I supposed to get the liquid out of the bottle to measure those little amounts.

We need the little stopper that goes in the bottles and syringes that fit in it to give the medications.

You would have thought I asked them some crazy question when asking for those, as if they have never heard of it.  Brayden cannot be the only one who needs those.

I surrendered to the fact that they could not help us so I needed find some on my own.  I ended up purchasing (for too much money) the supplies and way too many hours wasted.  And now need to find a new pharmacy that can meet all of Brayden's medication needs, syringes and all. 

Sunday, June 8, 2014

Team el Tortuga Brayden for Jill's House

Ride for Jill's House.  Hundreds of motorcyclists riding to raise money for Jill's House, the respite facility that host kids for weekends and/or camps.

Brayden's respite worker, Stephanie, signed up to ride for Brayden.  In just a few days, she raised over $1700 dollars. 

Hundreds of riders and they raised over $70,000.

Stephanie made a flag to hang from their motorcycle and they were off to ride on the beautiful Saturday.  She said the ride was amazing.
The next day, they drove the bike out to the house for us to see and of course get some photo ops...
We just couldn't help ourselves, especially because he didn't protest and went along with the helmet and sitting on the bike.

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 out...so 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.

Sunday, April 27, 2014

Another time at Jill's House

This little boy loves his time at Jill's House.  Another time for him to be spoiled.  Lots of time outside in the nice weather.  Enjoyed some music and of course the pool.
We all went to pick him up.  He was relaxed and happy.

Tuesday, April 22, 2014

Saturday, April 19, 2014

Being thoughtful

Serious thoughtfulness by a friend I never get to see but do not live far from.  Volunteered many years with her at church.
A little box of joy arrived in the mailbox, just for me.

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.