Thursday, August 5, 2010

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...

18 comments:

matt said...

Oh goodness. We have been putting off cathing as well and Annabelle turns 2 this Saturday.

Like Grey, all the tests have come back clear so far but the urologist is convinced cathing is in our future.

We have our next Spinal Defects clinic on the 16th. We are "fine" with cathing if necessary but we have had so much else to deal with that we haven't seen the need to add it to the mix yet . . . .

Hang in there guys!

Courtenay + John said...

I am so proud of you two - not that you would do things any other way! ;)

You guys are the most awesome parents and I just LOVE Grey so much. I will always be here for you and him!

xoxo's
Cotton

Summers Family said...

So sorry Leigh. You know I totally feel your pain. My heart broke with the car story. I am NOT ready for this part at all. We have had limited interactions with kids Annabelle's age and the few I have had honestly haven't been so good (with the exception of our fun visit). I guess we will become better prepared for those situations as we encounter them.

Hugs to you my friend. Lets hope that both our new plans will work well for the kids and we will both see a decrease in their reflux.

heather.stanfield said...

Oh Leigh, I know how you feel about the little guy stealing his car. My sister has a son born the same day as Clara and he crawls up to her and takes her passy and rolls all over her...I can't wait until she gets mobile enough to knock the mess out of him one good time :-). I think our kids will just learn to be tons more savvy when dealing with peers, they will use there brains to deal with situations. Praying for you all as you go through this new trial. You can do it Momma!
-Heather

Momma Reekie said...

I'm so sorry guys, as much as we all sit back and hold our breath and think, "not us" we all know that the evil SB effects can strike anytime.

You're not alone.
And neither is Grey, he's got two of the coolest, caring and most down to earth parents. He's in such good hands.
Another hiccup. A little road bump, you guys can do it.
Chin up!

Ambitious Blonde said...

I am sorry you didn't get better results. I know the cathing sucks, and it's nerve wracking waiting to see if you get it right.

Things will be ok, hard at times, yes, but it'll be OK!.

Hugs

Katie at A List Maker's Life said...

Leigh,
Thank you for sharing so honestly and authentically. This has to be very difficult for you to come to terms with right now, but like you said I'm sure as you do it and it will become another part of your routine. It is very helpful for us to learn from your experiences and your positive attitude.
Thinking of you,
Katie

Jessica said...

Wow. I know I talked to you about this the other day, but it still amazes me. You and Andy just blow me away. Your strength is just awesome. Grey is so lucky to have you, and you two are soooo lucky to have him :) I love you guys! You are such an inspiration!

Jill said...

I don't even know what to say, but I feel like I have to say something! :( I'm all teary. Reality bites, it does. Grey is amazing and so are you guys.

I love the picture. :)

Heather Weir said...

I'm sorry this had to start for you guys. I've been cathing Charlotte since she was born. She has the same problem with her bladder Neurgenic I mean. No reflux yet so I"m hoping the cathing will stop that from happening.
I know what you mean by not 'thinking' about the spina bifida all the time. Once she has hair to cover up the shunt she'll look like any other baby.
Grey is such a cutie. I love all your stories and you guys certainly an inspiration to us newbies to SB!

Colleen said...

I think it's encouraging that, at this point, all this SB stuff is way harder for us than it is for the kiddos. Little ones are so self centered that all they know is their own little lives and don't realize it's different or even hard. It's just their life.

And I'm not concerned about Nate's privacy until he gets friends, i.e. someone to give him a hard time about what his mom said about him. :)

Stephanie said...

I think the best thing I can tell you right now is, although it may not feel like it, you are not alone! There are many of us who are going through the exact same things as you and feeling the way you do. It's not easy. But I really take comfort in knowing that I can easily reach out and find someone who can truly empathize with me (even if it is over the computer and not the neighbor next door). So, in conclusion, I can truly empathize with you! Sending you all big hugs (yes, means we may need to enter Grey's personal space!) ;)

Selina said...

Hey Leigh,
I was so bummed to hear about the cathing, but I am so encouraged that you have met this thing head on, and shown it who's boss! Grey is amazing, and he's got a super strong Mama who can deal with these things honestly, and show the rest of us how do-able it really is. Thank you!

krousehouse said...

Hi Leigh, The car story did me in. You guys are incredible parents and an inspiration to all of the rest of us. You have every right to have a down moment once in a while when things don't go the way you wish they would and SB rears it's ugly side. I'm so sorry - but I'm glad you are now a cathing pro!

Grey's as lucky to have the both of you as you are to have him.

Joanna and David said...

What hasn't already been said?! :) You guys are so special to us and on this journey we are so blessed to have each other. It's amazing watch our own lives, our own worries and experiences, reflected and expressed so honestly by others - amazing, scary and encouraging all at different times! There are so many unknowns and to know someone else is going through those emotions and questions with us, before us, or after us - is comforting and humbling. Comforting not to be the only ones. Humbling to see how strong they are. We are with you sweet friends. We look up to you, and we are here for you. We are listening. We are praying. We are smiling with you. Because even with all the unknowns, and the bumps in the road....there is still SO much to smile about. :) We love you!!!!

Mariann said...

Thanks for being willing to share the tough times as well as the good reports. I'm praying you can adjust quickly to this new reality. But I do hurt for y'all. We always check in on Greyson, since he's just a month or so older than our boys. And he is such an inspiration! This is yet another way you can inspire families like ours. Keep your heads, up, and try to take it a day at a time (very obvious and cheesy advice). Hugs to you.

JourneyWithTheCrosiers said...

Goodness. Reading your post and then ALL the comments. How blessed are we all to have each other to educate? We are new at all of this with Beckett, but that doesn't mean I don't want to know what we may have in our future. Thank you so much for sharing your raw feelings. The car story. Grey will learn to stick up for himself for sure! I don't doubt that you have become "pros" at cathing...what an honor huh!?!? Hang in there.
Sending a hug your way and a prayer another!

Holli (and Mark) said...

Wow, you don't need ANOTHER comment but I feel compelled anyway :)
I'm one more person that appreciates ALL of your posts, especially the ones that are harder to write like this one. ugh, I lost it at the car story. its just one of those examples that you think about, sweat about, wonder what their thinking, what will you say when they can actually ask the tough questions. I think about this more than I should I'm sure.

Its sooo hard thinking about our babies having challenges, of any kind but I think a lot of it, at least right now is much harder on us as the parents and it helps so much to know that we are not alone.

Your blog has done that for Mark and I since day ONE when we found your blog sooooo long ago. I am so thankful to the blogging world, and babycenter for bringing so many of us together, that through your words and pics, I feel like I know you and Andy and Grey! You guys are AMAZING parents, thank you for continuing to share your struggles and triumphs and here's to many more triumphs!!!!!!