On the Road Again (with Momma Bear)

October 1, 2012

We were back on the road again to OKC.  This drive is getting less and less enjoyable!  We sometimes wonder if we will ever want to go to OKC again just for fun.  But alas, there we were cruising down the Turner Turnpike for another doctor's appointment. 

This time we were doing some testing with our urologist.  The tests came back positive.  Joey's bladder is doing well and will not need any additional work prior to receiving a new kidney.  We praise God for that news!  He is always faithful and gracious.

By the way, Momma Bear showed up at today's appointment.  I think I even scared Jeremy!  In case you are buddies or close to any medical specialists, will you please remind them that what is ordinary in their work life is anything but ordinary to their patients and families.  Our doctor accidently starting to call me "high strung"!  Poor guy.  Yes I was, but I had reason to be a little high strung!  Don't get me wrong, he is a great doctor and feel priviledged to have him for ten years now, but a momma will stand up and fight for her cub when needed!

In my last blog I mentioned that we were finally at the transplant stage.  At the last blood test Joey has 19% function remaining.  We have been referred to the transplant team.  Unfortunately they are not as eager to see us as we are to see them!  We expect to hear from them soon and get to finally ask so many of the questions we have.  Until then, we (I) will try to be patient.  This team will take us all the way through transplant. ~so I really need to be nice! ;)

I have some specific prayer requests.  First, that God grants us peace.  The stress is really wearing on Jeremy and I and therefor, we know, affecting our kids.  Joey is handling it very well.  We realize he doesn't understand it all and doesn't need to either.  We pray that Emma and Hope don't get lost during this time.  It is very hard to fight for appointments, remember medicine, treatments, and be the mom and dad all three of our kids need us to be. We realize we need to cut back in many areas of our life, but that is not easy for either of us.  Jeremy and I both love to lead, volunteer and stay busy.  However, we know God is calling us to slow down and walk this road with Him.

Secondly,  please pray that we get all necessary testing done on Joey and us to find him the perfect match before the need for dialysis.  It is the desire of us all that we do not have to go down that road.

Thank you for all the comments and prayers.  I cherish every one.  Please keep sharing this with anyone who is willing to pray for us and our journey.  May God bless you!

We are a family of five, going down the road of life.  We have had many exciting destinations and some scary stops, but we are in this together and can't wait to see the other side.

Our son has been diagnosed with well, lots of labels.  Hydronephrosis, high blood pressure, nephrogenic diabetes insipidus, urinary reflux, kidney disease and now our latest, kidney failure.

It all began when I was about 5 months pregnant.  Our ultrasound showed "a large bladder".  We were told, the doctors wanted to see the baby empty his bladder.  So they asked us to come back for a second ultrasound in a month.  We then learned what the doctors were fearing, our son could not empty his bladder in utero.  That doesn't seem too bad until you realize that babies drink amniotic fluid and cycle it through their systems.  Our son had a tiny flap of skin blocking his urethra (pee tube).

At five days of life our very healthy 9lb 9oz boy went in for surgery at OU Childrens' Hospital and had that tiny skin cleared.  Unfortunately, the damage was done.

Jump forward 10 years and 5 months and we are now facing what the doctors suspected for Joe, kidney failure.

Joe is a funny, sweet, loving (at times), brave kid.  He has endured more in his 10 years medically than Jeremy and I have combined.  He has come away with some scars, but amazingly very "well adjusted".

I hope this blog can keep those who are praying for Joe and the rest of us (Dad-Jeremy, Mom-Carrianne, Sis-Emma, baby Sis-Hope) informed of the journey.  I am finding it difficult to keep up with all the phone calls and texts.  It is especially hard with each new diagnosis.  So please, don't be offended if we need some time.  We want to hear from you and we do need to talk about this, but it is often hard.  Please share this with anyone willing to pray for us.  We believe unashamedly in the power of prayer and the healing of our Lord.

Jeremy came home today and said, "I don't know what the road hold, but we know Who holds the road."  Personally I think he read this in a fortune cookie, but hey, it works!

God's not done with us yet.  See you on the road!