Monday, May 25, 2015

Pool side crew

Brayden's happiest place is to be outside, by water and with his family.  So Memorial weekend was perfect for him.
And time with his life long friend.  The harder I tried to take a picture of them, the less they cooperated...just like all children.  "Look at me" apparently means the opposite.

Thursday, May 14, 2015

New Wheels

When Brayden's current wheelchair arrived, I was not happy.  I did not like the way it looked and I did not like how crazy heavy it is.  We needed something to use while out and about and around the house.  The big wheelchair is used for school and riding the bus.
We ordered a Convaid Rodeo, which has options for support, tilt, canopy, folding, etc.  It finally arrived and they came to school to make the proper adjustments.  So far it seems like it will be a great fit for Brayden...and a great fit in the back of my car (the big wheelchair doesn't break down much and I have to fold down the seats in the back of our Denali XL to put it in, it is just that big).

Monday, May 11, 2015

Reading with Brother

Brayden absolutely loves to be with his brothers.  After school, Luke wanted to read to Brayden.
An hour and many books later, Brayden was leaning on Luke, hoping he would continue to read.  Much to Brayden's chagrin, Luke had to start on his homework, otherwise he would have stayed there for hours.

Thursday, May 7, 2015


Yes, I talked extensively over the last several months about Brayden's bowel movements.  The past several days, I have poured over Brayden's lifetime of medical records, trying to put together an outline of Brayden's slowing GI system.  Today, I talked about Brayden's bowel movements for a long time with a new doctor at Children's National in DC.  We went through Brayden's GI history, tests that he had and his current problems.  The doctor reviewed possible procedures and outcomes, even drew pictures of GI System, tests and even little butt cheeks to make his point...

Basically, it does not seem likely that they could find a reason or diagnosis for Brayden's poor/minimal GI system motility.  His brain is so abnormal.  The GI system is run by the autonomic nervous system, which we already know Brayden's is abnormal.  Thus it is really no surprise that his GI system would be struggling, especially as he gets older and bigger.

What that means for Brayden to have a bowel movement...we do not know quite yet.  The GI Motility doctor suggested today that we start with tests to assess Brayden's lower GI system.

1.  Transit Study (Sitz Marker)
A colon transit study is a diagnostic test that will allow your doctor to evaluate the function of your colon.  A capsule, actually we will open capsule and insert the contents (2 dozen or so tiny little rings) into the hole where his j-tube is.  About an hour after inserting the capsule contents, Brayden will have an x-ray, for his baseline.  He will have an x-ray every 24 hrs for 4 days, then another on day 7.  The x-rays will show the progress of the capsule contents, hopefully progress the small intestine into colon.

2.  Barium Enema

It is a lower gastrointestinal (GI) examination, is an X-ray examination of the large intestine (colon and rectum).

3.  Manometry AnoRectal

Using an intrarectal balloon, into his rectum, to assess the rectoanal inhibitory reflex (RAIR), rectal sensitivity, capacity, and compliance.

4.  Colonic Manometry

A technique that allows recording of intraluminal pressures from within the large bowel by means of a colonoscopically positioned multilumen manometric probe.

The Colonic Manometry (#4) will be under anethesia, admitted to the hospital for 24 hour evaluation for test.  The Manometry AnoRectal (#3) will be done at the same time.  Brayden should be scheduled for this sometime in July or August.

The Transit Study (#1) and Barium Enema (#3) will done over the next few weeks (at different times). These tests are not a surprise to us.  We were told to expect so rather invasive testing of his colon.  Hopefully the test will so the doctors the best plan of care.

Tuesday, May 5, 2015

How much info do they really want?!

We are still working on Brayden's GI motility.  I am trying to prep for a meeting with the motility clinic in DC and working on Brayden's full medical history for the motility clinic in Ohio.

I plan to send over a summary of Brayden's GI troubles and a few pages from Brayden's current GI doctor (that has helped us make lots of decisions over the years) to the doctor in the motility clinic at Children's National in DC.  But I received a packet to complete for the clinic.  It started off pretty simple, demographics, medications, etc.  Then it came to the boxes for hospitalizations and surgeries. 
Seriously, three boxes for hospitalizations and two lines for surgeries...there are too many to list and may be obnoxious to attach all of it.
So I attached a short list, in categories:
g-tube, g-j tube, j-tube
Upper GI studies and scopes
Chronic vomiting/pancreatitis
MRIs for brain
Tonsils and adenoids removed
Ortho - multiple for legs/feet

As for the number of hospitalizations...I have no clue, I stopped counting a long time ago (to overwhelming to really know the number).

I did send a text to a friend whose son has had over 70 MRIs (and that doesn't count all of the other stuff)...wondering how and if she would even bother to fill out such a section.