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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

Sunday, May 9, 2010

i haven't pulled an all nighter in a long time. it was funner in college.

yes, i said funner.  i know, more fun is more correct.  or correct, period.  i'm just saying....

so here's the low down to get you up to speed--
Tuesday, Ridge had his 1 yr dr appt.  In size, he is off the charts...small.  He weighs about 16 lbs, and is 26 inches long.  perspective check: he is 1 yr old, and can wear 6-9 mo. clothes.  Am I freaked out? no, bc i can't make him 25 lbs overnight. i'm just giving you the report.  according to checklist information, he is behind in the facts that he can't walk, doesn't point, doesn't drink from a sippy, can't speak (except for mama), and probably some other stuff.  i'm extra not concerned about that, since he's like 5 months delayed on opportunity for those things anyway, since he spent 5 formative months in a hospital bed.  but now you know.

Tuesday, he got one immunization. I'm not necessarily pro or anti vaccines.  Ridge can't get live vaccines because of his steroid therapy.  So we got one shot.  He's supposed to get his final HepA at 15 mos of age.  IDK if that will happen, bc.....Wednesday, we found ourselves in the hospital with a hemoglobin of 7.7.  He was given blood once on Wed. and once on Thurs. and Thurs. night, we went home.  Record short stay for us.  Friday morning, his hgb was still 11, which is what it was when we left the hospital.  Friday night, a diaper caused concern, we checked hgb, it was 9.6.  To the ER we went.  at 11:30 pm, hgb was already 8.0. He didn't receive his blood until 2:30 AM, and I am certain he was close to 6.0 then, bc he was getting gaggy/vomitty, which happens when he is low.  So we were up till about 2:30 AM Friday night/Sat morning, then he started getting blood and the four of us went to sleep at the hospital (don't worry about sawyer being up at the hospital, awake that late.  he was partying it up with some leftover baby shower food that one of our favorite nurses got him.  he was happy as can be to be eating cookies at 2 AM).  I had to get up at 4:30 the next morning bc I was participating in a craft show that day in Noble.  So I pretty much got zero sleep, which hasn't happened in forever.  I wake up 1823487910 times every night to feed the baby or to his monitor going off, but I sleep off and on from about midnight to 9 AM, so i'm good.  but an all nighter like that was bru-tal. Anyway, Ridge got the blood that night. He got blood again Saturday morning around 10 AM, he got blood again yesterday evening around 7 PM, he's getting blood now at 10:45 AM on Sunday.  The bleeding isn't over.  This is by far the worst he's been in months and months.  No vomit yet, but he's wanted to at least once, and he did gag up a little bit of banana that he was eating, and up with the banana came red blood.  I can't stand it when it comes up.  It's gross enough and disturbing enough and wrong enough when it comes OUT, but when it comes UP, I just can't deal with it.  I CAN, and I DO, but I hate that.

So why the bleed?  If you haven't gathered yet, this disease is rare. It is random. And we don't know for sure why he ever starts to bleed. He HAS been immunized before, but dynamics were different/med doses were different, so I tend to think this immunization was the culprit (It wasn't a live vaccine, we know he can't have those)....but I could be way wrong.  So anyway, he is on transfusion number 6 since Wednesday.

Lord, I am ready for the day that we don't spend so much time in the hospital.  But I am thankful that we don't have to live in the hospital anymore.  No matter where we are, my prayer is for Ridge to no longer have these bleeding issues.

The other night, I got to share Ridge's story/God's story with a group of ladies (freaked out much? 350+ of them! I was NER-VOUS!).  The following evening, my friend Kelly, whom I have never met in real life, but right along with my friend Andrea, whom I have also never met in real life, I consider a lifesaver and someone who is an instant friend and who one day I hope to meet in real life, when our kiddos are stable enough to travel without us (me?) fearing-- ANYWAY, run on sentence....restart: My friend Kelly and her husband shared their daughter's story (of living with MLT) with their church youth group.  One thing she told me, later, on FB, was this :  It is hard to recap it all. I feel like I barely survived it the first time. YOu know what I mean? Man I do not want to go back to where we have been. 

A to the men!  I don't know how we made it through the first year with Ridge, but we all survived.  Right now, times are bleak.  But she is so right- I do NOT want to go back to where we have been.  Thank you, Lord, for bringing us this far.  Carry us some more, bc today is a dark day for us. 

Have a happy Mother's Day (I know, kind of bleak way to wish you happy mother's day, but I truly mean it....moms have the hardest jobs ever.)


Amy W <> said...

Praying bigtime for big miracles. Love you guys.

RainOnMe said...

Praying for your family and Happy Mother's Day to a VERY terrific momma.

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