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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, September 2, 2009

sit sit sit

So...here we sit. Ridge is napping; I feel like I type that a lot but he doesn't actually nap barely ever....I only get a chance to type when he does.

He is doing well; I will settle for the weird pea green color his poop is....and i will definitely settle for the no spitting up! He has been happy for the most part, and likes to try our patience, or at least mine. It is easy to want to excuse some of his "fussing"...but sometimes, I know he is just being difficult. Like...choosing to eat for like 5 minutes then wanting to eat again in an hour. This...is not acceptable for/to his mother. :) We will be training him to stop this behavior....no one start feeling sorry for him in this respect-- yes, this disease is devastating to us at times...but Ridge is still "normal" other than this...so...his momma and daddy are going to have to raise him right- no excuses, kiddo. He's workin' the system....yep...he is.

I am not "in the zone" as I type this, so it might be sporadic. I know a lot of you try to keep up with us every day so I try to make sure and write every day...but please know, sometimes it might be boring or random, b/c some days I don't have a lot to say!

All we know from the doctors today is this: 1) I have a 16 page consent form (unofficial/do not sign) to read over about a potential clinical trial that would require us to go to Cincinati (I know i spelled it wrong, sorry)...I think we are leaning against that, but we have told our doctors that we will really be seeking their opinion on this and if they say we need to go, we will go. It begins in about 3 weeks. It is for a drug that has been used in different diseases and this trial is to try it out in vascular anomalies (MLT is an example of a vascular anomaly)....so...i better get to reading. 2) I just finished filling out a mondo packet of information to send off for the MLT registry (all the known cases of MLT ...well...sort of-- the goal is to get everyone w/ a diagnosis on this registry so eventually some trials can begin)... 3) the docs are all of a differing opinion about meds. not our docs-- ALL the docs across the globe...some say no way to long term steroid use and others say it probably works. some say don't use this or that in little kids, others say they've had success with it. it gets frustrating...the general consensus is that we need to control the issues/bleeding until he reaches "X" years old when the symptoms seem to get better on their own- and that IS the consensus...this gets better w/ age. it doesn't go away, but it does get better. so....again....we wait. and we hope and pray that the right decisions are made. I don't doubt Ridge will get better. I know he will. My fear is that if they/we decide to try the wrong things to "help" him get better, that he will have some permanent/long term side effects that he has to live with....and that is frustrating. Especially knowing that the disease gets better w/ age....I don't want to decide to do something that will create future problems for my child that are non-existent now....tough call, people...tough call. This is where we definitely need wisdom.

So keep those prayers coming! We appreciate all of you- and I do read every single comment made, so thank you!!! I can't address them all personally but please know I appreciate them!

love to ya!

5 comments:

Jason and Corie Orr said...

Praying for a clear answer to come, along with even more peace that only God can provide. Still praying for complete healing as well.

Kena said...

Please know that Raymond and I are continuing to pray for Ridge and for you and Brandon and the decisions that have to be made. I am also praying for Sawyer. God is good and his mercies are new every morning. In His perfect love, Raymond & Kena

Anonymous said...

I pray for Ridge everyday. I cannot wait to come to the City this weekend. I am coming home on Friday and my parents and I will be driving up early Saturday morning. I would like to give blood, if possible, while I am there. I don't know how often I will be able to get that way. I love y'all. Tell Sawyer I said Hello! Kelby

Meishel Fry said...

Know that your CNW family still is praying for you and keeps up with you no news days. We like it when you have a boring post. I know you are seeking wisdom from God and he will show you what is right for Ridge. I love that your are not letting Ridge get by with being the "sick kid- feel sorry for me" thing. You both are great parents and it shows with Sawyer. You will do the right thing with Ridge. Your family is continually in our prayers. Don't hesitate if you need anything ever. Much Love
Meishel Fry

Anonymous said...

I'm continuing to pray for you guys. Your writing is inspirational even when you think it is boring. Love to your sweet family.

Mandy Kniskern (Sullivan)

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