Reality...

Reality set in big time for us this week. We had quite a few appointments and learned some things that we were so hoping Grey wouldn't have to deal with yet. A few weeks ago Greyson had some urological testing done. He had had three UTIs in about a month and a half and we knew that things weren't right. We have always known that Grey has what is called a neurogenic bladder, that wasn't being completely emptied. Up until this point he hasn't been bothered by this and has been doing great in the urological department. He has had a renal ultrasound (ultrasound of his kidneys and bladder) at least every 4 months since he was born, and things have always looked good. Well, since these recent UTIs his urologist wanted to do some further testing. We went in one day for a renal ultrasound, VCUG, and urodynamics, (my SB peeps will know what I'm talking about, to everyone else...these are just extensive tests on the bladder and kidneys) praying that we wouldn't find out anything too severe and that we could get to the bottom of these UTIs. During the test, our urologist's resident came in and was watching as the technician took her pictures, and right away he had a look on his face that told me that something wasn't right. He explained that Grey has grade 4-5 reflux in his left kidney and a high pressure bladder. This means that instead of the bladder emptying out the urine it spasms and pushes the urine back into his kidney. This is not good. If left untreated this could lead to severe kidney damage. This is very common with kids who have spina bifida, yet we still felt shocked that it could happen to Grey (I know, we shouldn't have been shocked.) Grey has just been doing so well that I often times don't even think about SB. OK, that's a lie, I think about SB everyday...but I don't always think of it in a bad way. I think..."this is manageable, this is doable" Well, on this day it hit me hard. He does have spina bifida and it will effect him in so many ways for the rest of his life. Not to mention the fact that while we were waiting for this appointment Grey was playing with a little car and a little boy (probably younger than him) came up to him and grabbed his car and ran off. Grey screamed (not cried, but screamed) and then sat there watching the little boy play with his car. He couldn't do anything to get his car back, luckily the other mom brought it back over, but the damage was done my heart was broken and I wanted so badly to know what Grey was thinking. Was he sad, mad, wondering why that little boy could walk and he couldn't? Maybe he didn't care, I don't know. He started playing again and was as happy as ever, so most likely he is too young to even notice...but when will he? Ok, I got waaaay off track...back to the kidney...Well, a week after the tests we had a follow up appointment with the urologists to go over the results and come up with a plan. Here is the part that gets tricky. Do I tell the world (like the whole world is reading this or something) the plan, or do I keep this private for Grey? At some point he isn't going to want me talking to everyone about this, but for now, I don't think he cares. :) For those of you who are in our situation, or will be soon...I'm sure that you are curious and wondering. The plan is to start cathing 4 times a day and to take a low-dose antibiotic daily to prevent any more UTIs. We knew that this day was coming, and to be honest we were prepared and ok with it. We want to do whatever is best for Grey...we just wish that it wasn't needed. We wish that his bladder and kidneys weren't effect by the big bad spina bifida. But they are so we will deal with it. The first day of cathing was hard. Andy was a pro at it from the begining, me...not so much. The first day was spent being totally frustrated and crying to the nurse. Grey and I went back in and I was taught again...and now I am a pro. :) Grey is the best and just plays with whatever toy we give him and is as happy as ever. So as we enter this new phase, we are just taking it one day at a time...just as we always do. :)

Sorry this post is a little down, here is a picture to lighten the mood...

Here is Grey floating all by himself...we couldn't be prouder...