How about this shirt?

Out shopping today, looking specifically for soft elastic waist pants for Brayden (they are so much easier to use and harder to find the bigger he gets).

You know I am a big fan of message t-shirts for Brayden and I do like ones that have funny pictures or sayings.  However, this t-shirt may be too much...yikes.

What do you think, suitable to wear for an appointment with the GI doctor?!  Or to any doctor?!

In case you were wondering, I did not purchase this shirt.  I have seen many pictures of his insides, in many different ways.  I do not need a t-shirt as a reminder, although the boys could draw on his feeding tubes...

I did find much cuter shirts for Brayden.

Pump problems - BEEP! BEEP! BEEP!

BEEP!  BEEP!  BEEP! (and on and on) is what I kept hearing this morning.  The high pitched, ear piercing sound of Brayden's feeding pump.  A beep to alert that there is a problem.

The nurse worked on the pump; I worked on the pump; changing bags, adjusting settings, turning on, turning off.  A few minutes would pass, the pump seemed to be working and then the beeping would start again.

So we pulled out the back-up pump.  The back-up pump is quite a fickle little thing.  Technically we have rented it for so long that we now own it (the way our insurance and supply company handles it not us) so we cannot exchange it for a new one.  It works for a couple of weeks and then seems to need a rest.  So we swap the two pumps back and forth.

Brayden's pump is a Kangaroo Joey.  It seems to me that the feeding pumps are not really meant to run 20+ hours a day, every day of the week, they are made more for bolus feeds here and there throughout the day and not having to run continuously the way we use them.

After trying the back up pump, we heard once again that high pitched BEEP!  BEEP!...

The back up pump was not working as well.

We cannot give him his food by syringe effectively.  His GI system cannot handle too much at once so his pump is set at 42 ml/hour.  That means he gets 0.7 ml per minute (that is a tiny amount, you spit more than 0.7 ml).  I cannot do a syringe that slow for 20 hours.

It was 7:30 a.m. the medical supply company was not open yet.  However, one can call the answering service that will alert the on-call staff.  So at 7:30 the phone calls started.  I waited to hear back from the on-call person.  Two hours go by and no phone call.  I call again, this time the office is open...they have no ticket and no information from the answering service and we start that process again.  Again, I wait and no return calls to confirm delivery.  More phone calls and being on hold for soooo long.  Finally, they find that the pump is out for delivery.

The pump finally arrived around 2:30 p.m.

We cannot survive without his feeding pump.  I may have said to the medical supply company, "I need to know that the pump will be at my house soon otherwise we need to make plans for my son to go to the hospital", not to be too dramatic but I wanted a serious sense of urgency.

And when the pump with delivered the tech showed me how to adjust the volume of feeding pump.  Me, "You mean it doesn't have to be such a terribly loud noise?!"  Oh yes people, we have had several Kangaroo Joey pumps in 5 years and I just found out today that the BEEP! has volume control...the one bonus of the day.

Lots of Love from Brayden

Happy Valentine's Day from Brayden!  He was on his best behavior today at home and at school, where he even got to go see the fifth graders Valentine decorations.
Of course he was decked out for the day (pseudo tie t-shirt and a flashing heart necklace).  And of course he was smiling before and after the camera but I tried to get a smile of camera...can you tell he is trying not to look in my direction!

He had lots of goodies to pass out.

And he came home with a few of his own.

He is my chunk-of-love, lots of kisses on those yummy cheeks.

the 15 minute seizures

A honeymoon period.  It is what the doctors like to call the period right after we increase Brayden's seizure medication and/or ketogenic ratio...for a few weeks it seems to make a wonderful difference, less seizures and less time, then he adjusts and we start to see an increase in seizures.

Brayden still has his daily "iron-cross" seizures (he looks like a gymnast on the rings...thus why we call it an iron-cross, not a medical term in any way, just the way we describe it).  Those last for about 30-60 seconds.

Brayden has another type of seizure that is the cause for some concern.  We visited the ketogenic clinic, it see the neurologist and nutritionist.  This particular type of seizure last around 15 minutes, it happens many times after he wakes up.  The seizure is a large convulsion/jerking, always in the same direction.  He stops for a few second and then a big jerk.  This goes on for about 15 minutes.  Thankfully is causes him no distress (unlike what it does to the people watching him); his heart rate is not elevated, he is breathing fine and for the most part he is coherent.

The doctor is calling it myoclonic cluster seizure.

But what to do about them?  Obviously he cannot do it for 15 minutes.  Yesterday he had one that lasted about 25 minutes.  Yes we do give him Diastat but we do not want to give him a Diastat as often as he is having these myoclonic clusters, he would be snowed all the time.  We are increasing his ratio on the ketogenic diet.  He will be at a 3.75 to 1 ratio (don't worry if you have no idea what that means), the higher ratio should mean better seizure control.  If the increase in ratio does not do the job then we will look at changing his seizure medications.

A long day at Children's in DC (a 2+ hour drive in), met with the keto team, then Brayden was ordered some labs, so we headed upstairs.  We try to do all the labs as a one-stop-shop, so we try to get whatever labs he may need for any of his doctors in one stick (the marked up lab sheets below, some of the tests required a few vials...thus meaning lots of vials to fill).

And we have learned to ask for the right guy in labs, he always does a great job finding a good spot for Brayden's veins (Albert is his name, been doing it for decades and on his off time, volunteers as an EMT, ask for him if you need labs at Children's National).

No word on the labs which usually means "no news is good news".  Brayden's labs are checked often because of effects the ketogenic diet and his medications can have, not to mention his unexplained anomalies.

He is not too pleased with getting the blood work nor being gone all day.

Then we arrived home just in time to get Carter and Luke off the bus.  To which we discovered Carter had a large unexplained rash that was quickly spreading all over his body.  We rushed into the pediatrician (and we live about 45 minutes from the peds office).  No clue what is rash is/was, given some cream and steroids.  I did find another get use for our medical gloves...I love Carter but I was NOT touching that rash.

The doctor then to eat.  We dined at Bone Fish, just so I could have the Bang, Bang Shrimp.  The boys did homework there because we were not driving all the way home, just to drive back for Luke's wrestling practice.

All in all Brayden handled the day pretty well, although he had one grouchy look through it all.

Did I mention Jeremy was out of town all week too?!  Long days around here.

New AFOs...like a day at the spa

Brayden was fitted for new AFOs this morning.  A long drive in to the office and Brayden was happy all the way.

To get proper AFOs, his feet/legs are casted to get right shape, size and fit just for his chubbiness.  One might think he would not enjoy the casting; holding his leg still, a long tight sock on, then wet wrap put around and around his feet and legs...holding it all still while the casting dries, then cutting it all off.  It could be a miserable experience a child that has some sensory issues and is really not too trusting of strangers; but oh no, not for Brayden, he acted like he was getting a pedicure at a spa.  He was laid back, happy and even helping in his own way; acting very mature and seemingly understanding what was going on.  He wanted it to last longer, pamper him more.

I must say I may just be projecting my feet issues on Brayden.  I really, really do not like feet.  I want nothing to do with feet...no one touching my feet and I have no need to touch anyone else's.  

The only feet I like, well, feet I love, are Brayden's (Carter and Luke are old enough now that their feet can stink).  Brayden's feet are delightfully plump and irresistible to squeeze.

Hopefully we will not be squeezing him into these new AFOs (which should be ready in a couple of weeks) and they will be a great fit for several months.

He is Regsitered

Registered for Jill's House (while I sit in Panera, munching on a cinnamon crunch bagel, yum).

Jill's House is an overnight respite facility (the only one of its kind in the US).  When Brayden turn 6 yrs old (when did he get this old?!) in April, he can start going to Jill's House.  It is here in Northern VA.

The place is amazing, I have been there several times (not yet for Brayden).

A Look Inside Jill's House from Jill's House on Vimeo.

I started the registration process this morning.  Eventually he will have an intake process...that will lead to him staying at Jill's House.  I am already anxious about the prospect of him going.  I drilled a friend yesterday with questions (both of her children go and has become somewhat of a spokesperson for Jill's House).

I did ask if it was obnoxious for me to sit in the parking lot for the first several hours and pop in to check on Brayden...

I may need to start praying about this now.

He will find a way

To get comfortable.

Brayden likes to swing his legs out...way out.  We call it his frogs legs.  It is a challenge to keep his legs in.  No matter what device his is sitting in, he will swing his legs out.  This is problematic for, let's say, um, going through doors...pushing a wheelchair or any of his chairs through a doorway and his legs are hanging out to the side.  This is problematic for school and for the bus.

His wheelchair has feet straps.  We can strap his feet down.  I am not really a fan of strapping him down since he really uses his legs as a way to express himself.  He has a certain kicking when he is getting mad, kind of like his warning sign that he is about to get upset; he kicks and kicks when he is really happy.  Kicking is his thing.

For his well-being he cannot let his legs hang over the side in his wheelchair for bus transportation; so his feet are strapped down.  But he still finds a way to get comfortable.

He has been able to wiggle his feet out of his shoe.  Shoe still strapped down...not his feet...clearly he is winning this battle.