multifocal lymphangioendotheliomatosis with thrombocytopenia. pneumatosis intestinalis.
little baby cary.
hmmmm...why do these stupid long words "define" my sweet little boy? i know, they aren't his true definition. but i am just so sick of this. so sick of the fact i'm adjusted to MLT and he's supposed to be able to live with it and then we hit this stupid hole in the road and things just won't get better. so so sick of the stupid new thing-- second set of long words up there-- that you should not google bc i am a google NERD and found out all kinds of horrible things i don't want to know. just don't google it- i will save you the time and just tell you lots of kids who end up with that pneumaCRAPOLA don't live. i had a long discussion with our resident, who we really have enjoyed, who is changing service tomorrow, anyway, we had a long talk tonight and he helped explain it to me and showed me ridge's x ray and told me he looks like he is doing so much BETTER now than he was two months ago when this looked like it was on the xray (but no one saw it two months ago)....anyway, they are "worried" but not NEAR as worried as they would normally be about this "diagnosis"....ridge does not have really any of the symptoms of this, other than blood in his stool, which could be from his MLT. confusing, huh? AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAGHHHHHHHHHHHHHHHHHHHHHHHHHHH! yes. confusing.
so i'm supposed to not worry. i was SUPPOSED to not worry anyway, right? that's what we are all SUPPOSED to do. so i will sure try to put this at the back of my mind- not forget about it, just put it back there in case i need it later. but i will hope and pray that this is really a case to "not" worry TOO much about...because that just seems sick and wrong for something ELSE to do something WORTH worrying about to my kid.
so what is it? well, we all have bacteria in our intestines...ridge's bacteria has also migrated outside of his intestines. bacteria cause gas. we don't want too much gas to build up outside the intestine wall bc if air gets in there the bowel can rupture. this is not good. that bacteria better get back where it goes, bc if i could go in there and move it i would. i hate this. HATE IT HATE IT HATE IT. hate it. it is time for it to stop.
- alisha
- 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.
4 comments:
Alisha - Just want to let you know that I think of you several times a day, each day, and pray for God to give you whatever you need for that moment. You are a strong woman no matter what you think and you are sure to make an eternal impact on some of the people who have crossed your path in the last few months.
Our pastor preached from 2 Chronicles 20 this Sunday and talked about how the battles in our lives belong to the Lord. In this passage the people were fighting an actual battle but all I could think as I listened to my pastor was what you guys are going through right now as you fight this battle of your own. Here are two of the verses that I hope might give you some encouragement.
2 Chronicles 20:12 - For we are powerless against this great multitude who are coming against us; nor do we know what to do, but our eyes are on You.
2 Chronicles 20:15 - Do not fear or be dismayed because of this great multitude, for the battle is not yours but God's.
I can't really come close to imagining how you feel or what it's like to be in your shoes, but I pray that as you go through this battle and face this great "multitude" of problems that you would know that "the battle is not yours but God's."
I love you guys!
Leslee
We are praying extra hard tonight and throughout the days ahead for healing, answers, and sanity. If I were you I would have completely lost my mind by now. I'm sorry that saying that does not help the situation at all, but do know that you are one of the strongest people that I have ever seen and God knows that you know that He has a plan and everything is according to His timing and purpose. There aren't any words to express how sorry we are that you are having to go through this. We believe with all of our hearts that Ridge is going to be healed. We believe it every day, just as you do, and we continue to pray that your son is whole again.
Thank you- both of you.
Just want you to know that I check your blog every day. Hopefully you can gain some strength and comfort in knowing that your "prayer warriors" are lifting Ridge and all of you up in prayer every single day.
Love,
Sue
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