Beautiful Life





Hey child up and go; A big world is out there waiting for us to live in every day. Outside you will find, there is love all around you; Takes you, makes you wanna' say; That it's a beautiful life and it's a beautiful world and it's a beautiful time to be here, to be here, to be here. -Fisher

Wednesday, April 22, 2009

Wednesday


Yesterday was spent at the hospital. Claire had two appointments. First, she had another ultrasound. When you have bladder issues, an ultrasound is a very noninvasive way for the Docs to keep an eyeball on what's happenin' in there, I guess. Because she has had three of those things in the last 8 months. She doesn't care for them....only because she doesn't really like strangers to mess with her. But, the good news is that she has such a great grasp on English now that I was able to talk to her about the appointment, what was going to happen, how it was going to feel....and she got it! She was still nervous going in. But, she was much more calm than during the other two ultrasounds and I really feel that it was because she had the verbal skills to handle it. She knew what was coming, she trusted me, and she was able to talk to us during the procedure. Amazing the difference that can make! But, she is so cute. She kept looking at the screen where the picture was and saying, "I don't see me in that picture! Where am I?" Then I realized that she understood that we were looking at pictures of her, but I needed to explain that it was the inside of her, not the outside!

Next it was onto our appointment with the NEW urologist. We have been seeing Dr. A. He was the best, but he is about 100 years old and he's getting ready to retire. Since Claire's last visit with Dr. A went so well and he determined that she would not need surgery right now, we felt it was a good time to make the switch. Dr. P is the new guy on the block, but he is hardly new at this. And, he is with the spina bifida clinic at our hospital so our hope was that he'd be very knowledgeable about urology from that stand point. I think we got our wish! Dr. P met with me and Claire was so comfortable around him that she completely ignored the doctor and acted like she was at home. Not always a good thing, since she wandered around the room and interrupted us more than once...but, at least she wasn't terrified. She has been known to be a cling-on when some doctors are around. Dr. A was....ummmmm, (ahem)......shall we say, aloof, and made her nervous. No so with Dr. P! But alas, all doctors are different and come with their own......ummmmm, stuff. Dr. P's stuff involves a whole different set of tests. Dr. A did a VCUG on Claire last year. This involves putting a catheter up into the bladder, filling the bladder with contrast and then watching what happens on an x-ray. Of course, at the time we first did that procedure, she'd never been catheterized and went ballistic on the table. Dr. P does a similar procedure....but, it's different. Same concept, it just involves some equipment to measure pressure in her bladder and will help determine if the amount of pressure in her bladder is going to have a negative affect on her kidneys in the long run. The short of it is that Dr. P seems to be a conservative doctor, which we like, that is aggressive when it comes to protecting the kidneys, which we LOVE! The down side. It's another procedure that Claire isn't going to like. He's going to do one every year until she turns 7. This year it is on HER GOTCHA DAY! Happy Gotcha Day....have a bladder full of contrast, sweety!?!? The up side. Her kidneys may thank us one day!
Isabel went to the appointments with us and did her school work while waiting. She's such a trooper!





Regardless of the news that Claire will undergo more testing...that may lead to surgery, we still had a great appointment. Everything is fine as is for now. That's always good news! And, better news is that Dr. P is up on the new surgery being done right now to correct neurogenic bladder! No, that is not a typo. I know I told you that there was no cure for this and that Claire would always have to be cathed....or would learn to do it herself one day. BUT there was an "unless" in there. We are always on the verge of new medical break-through and it looks like one of those marvelous things may have happened! And, our Dr. P met the Doctor that started it. Haven't heard about this yet? Well, you may not be interested...but, I am and this is my blog!

Apparently a Chinese doctor (how fitting), by the name of Chuan-Guo Xiao, has been working since the 80's on a procedure to re-route nerves in the spinal cord, from the leg to the bladder. He had some success in China and naturally, brought it to this country for further study!

Here are a few links for those of you as excited as I am about this prospect!






This is not something that we would consider lightly. As with any major surgery, ON THE SPINAL CORD, it has risks. But, this is something that we are planning to keep our eyes and ears on for the next few years. Claire is too young to be a candidate right now anyway. But, if they continue to have good success with this and if she does become a candidate for it, we would be thrilled! And, it's good to know that our Doctor is keeping his eyes on this too.



So, with that said, how about joining us over at the Wednesday Prayer Meetin'. Significant Source is reminding us to give Glory where it is due, and so I thank God for the Doctors that are working to find ways to make life easier for kids and adults like Claire! And, I thank God for our good follow-up visit yesterday and for keeping our sweet girl healthy! Most of all, I thank God that He provided us the means to bring Claire home almost a year ago, and He continues to provide the ways for us to give her a better life!

5 comments:

Yvette said...

That procedure does sound worth keeping tabs on! Sounds like a blessing really that Claire is too young . . . gives you time to watch and see how patients are responding to the surgery. Very exciting!

Vicki said...

Hey Chelsea. It's Vicki -- who was also w/CHI as a client. I'm the one who has kinfolk in your area. By the way, that NEW bridge of ya'lls....shivvvvver. Eeek. Is it way up high in the sky or what? I saw it when it was being built. Haven't been to Charleston in about 4 years. When I do get back there, let's get our girls together.
I agree w/you on staying focused for a cure. I'm a "speak to the mountain" kinda girl. I love your devotion to family and faith. Keep it up. Know that others out here are cheering for you.
Oh yeah. Love the boys' new do!!
Best always,
Vicki and Emily
http://waiting4emily.blogspot.com/

Christine said...

Wow-- I needed to read this today! Claire is such a trooper-- what an inspiration her story is! Thanks for sharing so much on your blog. As we get ready to travel to get Alexsy, I love having someone to read about who has been there and done that. ;)

The Source said...

Hoping and praying that they do perfect that procedure and that Claire will be cured of her bladder issues on day.

Too much cuteness on one blog! No fair...I don't have any little people anymore.

Blessed Mom of Four, Now Five said...

Hey Chelsea,
Ellie has had all of those tests!! Funny thing, my grandmother needs to go to the hospital to have a cathed urinalysis. Ellie told her, "Don't be scared. It just tickles."

I've heard of the surgery...but haven't seen all of those links. I'm going to check them out now.

Blessings,
Robbie