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wife. mom. adjunct professor. we homeschool. i'm a little bit OCD. i love math. bright colors and geometric designs make me drool. we live with a medical rarity, and Jesus saved his life. through that, Jesus is changing us. The american dream and status quo is overrated...and sometimes just plain wrong. our lives, our family, our careers, our faith are all now filtered through a new lens-- thank you Jesus. welcome to our crazy. feel free to take some of it with you, we have plenty to go around.
It's not the load that breaks you down; it's the way you carry it.
-- Lena Horne


The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.-- Jesus Christ

Wednesday, July 14, 2010

oooooover it, ridgey. plus a new baby.

not a new baby for me, let me preface that way!

moving on.
ridge was back in the hospital last friday.  we are still here. hoping to go home today.  i am so weary of this journey and often feel like i just to vomit over it all.  seriously.

but here's the latest story.
came in friday bc of fever. he was bleeding some too.  fever was treated as a line infection but all cultures came back negative.  so who knows- could it still be an infection? i guess.  could it be a virus? flu? sure sure sure. we dont' know. he feels better now.  he was and is getting four molars at one time.  however....get this.  even in all this illness, his bleeding wasn't terrible.  we maintained the new low dose of octreotide (probably only 2 more weeks on that, peeps!!!  then get the line out!!! so august/september- my baby will get a BATH!), and we did NOT put him back on steroids.  we increased his amicar a tad, and hellooooo-- one day later, one transfusion later, the bleeding stopped.  for reals, people.  his hemoglobin was the same, pretty much, saturday through tuesday. it dropped some tues. night and the diapers are some dark today. but we gave a transfusion today and are hoping we can go home awhile. we will continue on reducing the octreotide.

since we've been weaning the octreotide, ridge has grown 2 inches and gained over half a kilogram.  so that's....like....a little over a pound.  in two weeks...considering he still wears 6/9 mo clothes and has since he was 4 months old....i'd say we're improving!

he is losing hair, and we are not sure if that is just baby hair, or a reaction to coming off steroids, or something else all together.

please pray he avoids infections.  things that we are exposed to and we don't even catch/become symptomatic, he can still get and he can become very ill from them-- so if i'm around whoever and they have had the flu, or been exposed to it, and i become exposed to it, even if i don't get sick, or that person wasn't sick, ridge could still get it bc he is so immuno suppressed.  so health is so important...no sicky people can be around us, we have to watch where we can go, and even a runny nose could be a big deal to ridgey.  i hate it.

pray he makes his own blood so we can stop getting so many transfusions.  my friend kelly's little girl sadie, who has MLT, has been around 9.5 or 9.6 hemoglobin wise for about 2 weeks.  this week...she was 11.2!!! without a transfusion! praise the Lord!!! that's where i want to be.  so pray that for ridgey, too.

he is fussing so i better go.  the new baby-- my sister in law had a cesarean today, and noah bradley castleberry was born at 8:01 this AM, weighing in at 8 lbs 6 oz, 19 inches long.  THAT's who had a new baby. bdawg and s-puppy (sawyer) went to see him today.  so so sad that we couldn't all go.  makes it so bittersweet.  but i can't wait to get my hands on that baby!  i'm gonna wait patiently, but i won't be a good sharer once i do get to hold him.  just sayin.

1 comment:

Brooklyn said...

s-puppy. love it! you're a cute mommy.

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