this road we're on....

So it's early in the AM....about the time I'd be waking up to get ready for work here in a little over a week...man, things can change on a dime. Several weeks ago, we were holding our happy and healthy baby boy, not even having an idea what was ahead of us. Now here we are in desperation begging for a miracle. Through it all, God is good. Change is hard, and learning to live only the moment right in front of your face is difficult to do. Learning how to live with this diagnosis is something we haven't mastered even a little yet. Figuring out what to do with our precious 3 year old when it is time for him to resume daycare is something I worry about. Most likely not being able to go back to a job I love is .... I don't even know the word for it. Depressing? I love teaching. I love my students- every year- so I have no doubt that this year would have been filled with faces and personalities that I love. Not that I'd have it any other way- until my sweet baby is healthy and stable, he is who I need to spend all of my time with. But trying to figure out the finances, and if there is something I can do during evening hours to make up some of my lost paycheck, and where to put our other son since it might be difficult to keep both boys at home for a while...thoughts just overload your mind...Sometimes, life is just hard. Here is our latest update.

Ridge has been tentatively diagnosed with MLT- the ridiculously lengthy full name of it is posted in my previous blog. There is a 1% chance that is not what he has. Only 30-35 people have ever been diagnosed with this as far as we know. 30-35 people...EVER. And here we sit. This has never been diagnosed at this hospital, or even in our state, as far as I know. Our doctors are working diligently with doctors who first diagnosed this disease in 2004. We are just waiting to find the best course of management for it.

Ridge had not been allowed to eat for 2 days, and we finally got word he could eat. He has perked up a bit since then. We've had a couple of scares during his sleeping times- very low respirations, and not simultaneously, but even just now, very low heart rate. Everything else is monitoring good, but it is still worrisome. Please pray that this stops.

Before being allowed to eat, Ridge had two episodes of vomiting blood. So far, we have had only one spit up episode of blood since he's been allowed to eat....and NO throwing it up/vomiting the blood. Pray that this stays stable. He has been bleeding a lot, and his "dirty" diapers are mainly blood. This is too hard for me to look at, and I have to have someone else change him. I feel horrible for that, but it just breaks my heart to see it. Pray that there is a turnaround here.

The prayers have been overwhelming. We have people contacting us -- people we do not even know! People we don't even know are calling saying they are praying, volunteering to help out with ANYTHING...and people giving blood. OBI called me yesterday morning, and the woman I spoke to was choked up (as was I) at the response-- a long line of people...all there for Ridge. This was not at just one location, as far as I know, either. The response has amazed them- and us as well. Apparently, even the media is asking questions. Good ol' Oklahomans, helping each other out (these are the words one woman from OBI used...and she is so right).

Sidenote here- if you are donating blood, thank you. If you have donated blood for Ridge, thank you. The nature of this disease will require future transfusions, so please do not hesitate to continue to give. I will be sending out pleas again when we need transfusions. I'll probably be giving OBI a heads up too-- b/c I know the masses will continue to pour in if we need them to. I actually think it's a fairly good problem to have- there's more blood in the blood bank for EVERYONE now. If you have not donated for Ridge, right now you can probably sit on that idea and wait for the next time we need it. But I won't tell you not to give if you want to, now. So you do what you need to do.

We can feel your prayers. We have a peace that was not there a few days ago. Not that things are not still difficult...not that this is the road we would have chosen for ourselves or or son. But we can honestly tell you are praying. Definitely we want prayers for the bleeding to stop, for the drs to be wise, for the meds to work, for the heart rate to become normal, for our endurance and faith...but what we are begging God to do is work a miracle. He may not choose to work one here, but we are asking for it. We have some dear friends who have shared that even though they have tried to pray for all of the above, what God has laid on their heart is to just pray for complete and total healing for baby Ridge. That is the cry of our hearts. We are undeserving of it, but as a mother you can not help but plead for it. No matter the outcome, we will give God the praise. He is faithful, and will continue to be. We know we are in His hand. We dedicated our son to him from the moment of his birth, and I know God is holding Ridge right now through all of this, just as He is holding us. He is mighty to save, and we will give Him all glory as He carries us through this.

Keep the prayers coming.

Much love-
the carys