Friday, September 16, 2016

Don't call it a comeback

He's been here for years, Rockin it with his peers... Yes a little ode to LL Cool J.
Yes we feel like we have almost been knocked out this past year (sorry I just can't let the song go. and to make you feel old; that song came out in 1991, released on a cassette).

We did feel like it was blow after blow for Brayden's health.  And it seems like each year his health takes a hit; but he keeps on going.  The doctor's give us those absolutely awful talks about the state of his health, and yes, I agree that on paper Brayden seems quite bad.  And the talks that started this time last year took a very serious tone.

However, Brayden's keeps being himself.  Even his last lab work looked good.  Not just "good for Brayden" which is a phrase that is often used, but his labs actually looked good.  Labs were better than I have seen in a long time.  The ileostomy and his electrolytes seem to be managed.  We have been dealing less with the poop out of his bum; a round a meds seemed to have helped.

Now that Brayden's ileostomy and bum situation seems under control (and I use that term loosely), we can concentrate on his bone health, comfort, etc.  His body is tight, time of Botox.  His spine is curving too much.  And we are trying to catch up with his bone infusions.

Brayden's temperament and personality always seem to show that he is a rather grouchy old man, does not like change, does not like to do anything he does not want to do and he will let you know.
Look at his face in the video, he is ready to knock someone out.  School music was not what he wanted at that moment.
video

He still loves to be outside and with his family, especially his brothers and daddy (minus Luke's trumpet solos).  And his puppy and froggy.  Loving country music and movies with music.  Brayden is going to the same school he has attended since preschool.  We are trying to get him there everyday but, well, we try our best.

God has given Brayden a big personality and given us more and more time to discover it.  We are so thankful that Brayden has been stable or dare I say, healthy for being Brayden.  Of course, he keeps us on our toes every day but it's not gonna knock this mama out.  Don't call it a comeback, it's been this way for years.  And we are thankful for each one.

2 comments:

Anonymous said...

No posts for months! Whats happened to Brayden? :(

Anonymous said...

This page still going?