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!