The Answer to Our Mystery... is a Mystery!!!

Today I thought we were going to have a day off (boy doesn't that sound nice!?!?!?).  We had therapy planned from 10-12, in our home, and then Conner had Karate at 5:30, but the rest of our day was nice and open.  We thought we would go visit a friend who is in the hospital that we have really been missing and wanting to see. Our plans changed, though, when I got a call from Phoenix Children's Hospital (PCH) this morning asking us to come in at 3:15 for Ramya's dye study.  We headed down, got there, and they couldn't find her time slot.  I worried a bit thinking that I brought the wrong girl for the wrong dye study, as I got a call about both girl's dye studies today.  Thankfully, though, they were able to find her appointment and they got us in quickly.

The whole point of the dye study was to find out what that mystery cavity was through her mitrofanoff.  When I try to cath through it at home, I only have success about once a week.  Of course, when I cathed her through the mitrofanoff for the study, it went straight in the bladder.  go figure!  We filled it up with dye, then they had me take the cath out and try again, so we could see if we could get some dye in the mystery cavity.  Well, that's when things went South.  The catheter went down past the bladder.  They thought it came out through the urethra, but it didn't.  Somehow it entered her vaginal cavity through some mystery passage way.  Well, that, or urine was refluxing  in to the vaginal cavity.  We turned Ramya every which way, but we really couldn't quite figure it out.

After that, I slowly removed the catheter through her mitrofanoff as they put in the dye.  We didn't find any mystery cavity, however, we did find a big gap that explains the oddness we have been having.  There is a section of the tubing material (I think they used a piece of intestines) that is much wider than the rest.  One section of it goes off to the side.  So, when the cath goes in, it's easy for it to go off to the side and not down to the narrow part it needs to.  Here's kind of what it looked like, for a visual...

(and yes, I really did draw that on paint... be jealous of my mad drawing skills ;)).  So it was wider at the top, went off to the side, then got narrow at the bottom.  Where it goes off to the side is where they think the cath keeps coiling and why it's hard to get it to work correctly.

 

I'm glad to have that mystery figured out, though I'm really not sure how it can be fixed and I'm curious to see what the doctor says when we see him.  I'm also a little stumped on our new mystery, and am anxiously awaiting what the doctor says about that as well. 

 

Ramya did very well for the test and everyone thought she was just the sweetest little one (she is).  They said they are surprised I've only had her home for 4 months because she seems so comfortable and I seem to know so much about her already.  I really do think she's doing well so far.  She still loves sharing a bed with us and being rocked and held, but she  is starting to get very independent too, and I hear "I do myself!" quite a bit.  Her English is really coming along and she is learning quickly. 

 

So that's that for now.  I'll update again when I hear from the urologist.  I'm praying we can find a way to fix it or manage it, other than surgery, so please join me in prayer for that as well.

 

Win One Free Kiwi Crate for Some Summer Fun!

And we have a winner!!  Congrats JoDee for winning this crate!

 

We LOVE getting our Kiwi crate, especially in the summer when he kiddos need some extra activities to keep them happy and out of the heat.  There are always fun, creative activities that all my kiddos enjoy and look forward to doing.  They get so excited when they see our green box sitting by the doorstep!  This month, I was given an extra crate to give away to one of my readers (it is for one kid)... so fun!  I will ship it for free too :).  To enter, please use the Rafflecopter below, starting at noon today.

For $10 off your first crate, you can sign up using this link... http://www.kiwicrate.com/Refer?i=JamieV

I was also given this coupon code, though I'm not sure if you can use both promotions at the same time, so you will probably have to experiment to see what way gives you the most money off...

 

As an additional perk, your friends or family can use promo code KIWISURPRISE for 25% off the first month of a new subscription (expires 6/30/13).

 

 

 

 

 

 

 



a Rafflecopter giveaway

Our Plan of Action

Today Madi had her urodynamics test and we saw Dr. Zuniga again.  We got a few more answers to the Madi urology mystery and now have a plan of action.  Madi's bladder starts to become high-pressure with very little urine in it.  Although her bladder holds a decent amount, she has a lot of pressure in it most of the time.  Cathing more often won't help, because we would basically have to cath every 30 minutes or something crazy like that to keep her pressure low enough.  She doesn't leak, because her muscles work well, but this actually works against her because that means when the pressure gets high, there is no where for the urine to go and it doesn't leak out, so it goes back up.  This is also explains her kidney damage on the side the reflux is on.   Because of this, the bulking agent to fix the reflux won't actually solve her problem.  Even if we did that surgery, she'd still have the high-pressure bladder.  He said the two options we have are either the vesicostomy or an augmentation (they could do the mitrofanoff surgery then as well so she could cath through the belly button).  The vesicostomy would take away the pressure and reflux (hopefully) for now, but it's not a long-term solution.  It is generally a pretty easy surgery with not many negative side effects.  The augmentation is a permanent solution, however, it can't be undone.   It also carries a little more risk as there is more risk for stones, etc..., once it's done.  Usually the augmentation surgery is done when a kiddos is a little older than Madi, and he has never done the surgery in a child Madi's age (4), but he would be open to doing it if it's what we wanted.

David and I have prayed about this decision and both feel that starting with a vesicostomy is the way to go for now.  Unfortunately, Madi will have to go back in to diapers (right now she uses reusable cloth trainers) or pull-ups (we will most likely get pull-ups, and will try to find some cloth ones that still fit her or try to find some cloth ones that can be made larger to fit her), but we feel that choosing this surgery, until she is a little older and can decide for herself, is what is the best for her.  She will likely have the vesicostomy for a few years, and then we will go from there.  Hopefully there will be some better surgery options then, but if not, that's ok to, because at least Madi can help be part of the decision making process. 

The surgery scheduling people from the hospital will be calling us within a few days to schedule Ramya's dye study and Madi's surgery.  They also still want to do the dye study to examine Madi's kidney function, so we will see if they can do this while we are in-patient for the vesicostomy surgery.  The nurse said she thinks the surgery will be July 10th, but she's not sure if the hospital has that date open, so at this point we aren't really sure what the surgery date will be.  Dr. Zuinga thinks we will only have to be in the hospital for a day or so after the surgery, so that's not too bad.

Thanks for praying for us and our sweet little gal, and please keep her upcoming surgery in your prayers as well!  We know God has a plan for her to give her HOPE and a FUTURE and we are so thankful that these options are available to help her little body!

 

Our Kidney Answer

We went to see Dr. Zuniga, Madi and Ramya's urologist, today and got some answers about Madi's left kidney. 

(Just as a refresher, Madi was having an ultrasound done and the tech stopped about half way through, looked at me, and said, "so what's the story on her left kidney.".  Well, other than the fact that she has renal reflux and her left kidney is smaller than the right, I wasn't aware that there were any problems with her left kidney.  Our appointment with the urologist wasn't for a few weeks after the scan, so we waited to find out what was wrong)

Dr. Zuniga said that her left kidney hasn't grown at all this past year.  In fact, it may have gotten smaller.  Her scan from a year ago showed it was bigger than this years scan showed.  It could be due to an error in the scan that it is showing up smaller now, but either way, it still hasn't grown and that is an issue. 

Because Madi hasn't really had many UTIs, and hasn't had any that were symptomatic, he doesn't feel it is due to damage from that.  He thinks it's likely due to the fact that the renal reflux (she has grade 5) is keeping the blood from flowing correctly and her system from working correctly, and is basically keeping it from growing correctly.  We go in for another test tomorrow (urodynamics) and then will talk about surgery options to fix the reflux based on the outcome of the test, and possibly another test as well.  Dr. Zuniga said he may want to do a test where the inject radio-active material in through an IV (sigh) and then watch what happens when it gets to the kidneys.  This would tell us how her kidneys function, instead of just knowing the size of her kidneys.  There is always the chance that her little kidney functions really well, even though it's much smaller than it should be.  Or, it may be that her kidney hardly functions at all.  

As far as surgery goes, we have a few choices, but reflux surgery for a child with spina bifida is more complicated and there aren't any "easy" solutions.  The first option would be to go in and inject a bulking agent to try and bulk up the ureter and keep the urine from refluxing.  This is an out-patient, minimally invasive procedure, but it only has about a 40% chance of helping, at best.  It is, however, something worth trying.  The second option would be a vesicostomy.  This surgery would relieve the reflux and pressure to the bladder/kidneys, but is not a long-term solution.  Whenever it is closed up, there is a great chance the reflux will come back.  It's also not typically done with children Madi's age, due to the fact that it means the child will have to use a diaper, and they start moving towards "social continence" for children approaching school age.  For Madi, however, because she will be homeschooled, we don't have to worry as much about social continence and can focus more on doing whatever we need to get that kidney growing, so I do see this as an option for her.  The next option is one I don't love.  It would be the mitrofanoff surgery.  I am not against the surgery in general, and think it can be a great thing to bring freedom to kiddos and adults, however, it is a permanent surgery where many things are reconstructed.  If Madi were to have this surgery, it couldn't be undone.  That means if another, better, treatment option came available, she wouldn't be able to try it.  I would really prefer to wait to do this until she is older and could make that choice for herself.  With so much coming up on the horizon, in terms of medical advancements and new surgery options, I'd hate to make a permanent choice for her if it wasn't completely necessary.  If it was what had to be done to save her left kidney, though, then it is something I would obviously consider. 

Please be praying for David and I as we make some tough choices about how to help Madi.  It looks like she will have another surgery headed her way, and we are praying for clear direction on how to proceed and best help her.  We'll update everyone after our next set of testing and appointments.

 

LEGO® KIDSFEST Phoenix Ticket Giveaway!!

You can win (2) tickets to for the opening night session on Friday, July 12, 2013 (4-8:30pm) for the Phoenix LEGO KidsFest!  We will be going on Friday as well and can't wait!

To enter, just folow this link...

http://www.usfamilyguide.com/LEGO_KidsFest/?blogid=1898

One lucky winner will be chosen (randomly by US Family Guide) and announced on here (you will get your tickets about 10-14 days before the event). 

If you would like to follow the link on facebook, here is the link for that as well...

https://www.facebook.com/#!/LEGOkidsfest?fref=ts

Also, here is a link to a coupon for adult tickets, making them the same prices as the kid's tickets...

http://www.arizonakidsguide.com/coupon.php?bid=11141&dealid=1264&regionid=384

Good luck!


 

LEGO® Kid Fest is Coming to Arizona... and We Can't Wait!!

Be on the look-out for a post with a chance to win FREE tickets :).  I hope to have that up tomorrow.  There is a coupon link at the bottom of this post as well.  Here is a little bit about the event....

 

LEGO® KIDSFEST Phoenix: July 12 – 14

Three Acres of Hands-On Educational Fun for All Ages

The LEGO® KidsFest national tour stops at the University of Phoenix Stadium July 12 – 14, 2013, bringing all of the creative hands-on, minds-on fun of LEGO building and experiences together in this three acre activity- and entertainment-packed family event for children of all ages and builders of all skills and interests.

Among the many LEGO attractions, families will find:

• LEGO Model Gallery: dozens of life-sized models made entirely from LEGO bricks
• LEGO Master Builders: live demonstrations and activities from the crew who get paid to play
• Creation Nation: build your own creation to add to a custom map of the U.S.
• Race Ramps: build your own custom car, then race it down the ramp against friends and family
• LEGO Games Arena: roll the dice to play LEGO board games
• Construction Zones: creative free build, play and display areas
• LEGO DUPLO®: younger visitors can explore imagination through building
• LEGO Retail and KidsFest Marketplace: purchase LEGO merchandise and official KidsFest tour goods
• Brick Pile: a gigantic pile full of LEGO bricks for creative play and enjoyment
• Monochromatic Builds: bricks of a single color to foster group creativity
• Brickscapes: fantastic displays that combine lots of LEGO and DUPLO sets
• And much more, covering over 150,000 square feet of space

“Any family who likes to be inspired, get hands-on and have fun together won’t want to miss LEGO KidsFest,” said Vince Rubino, LEGO events manager. “We’re bringing so many activities for Phoenix-area families to test and showcase their creativity and building skills in what is sure to be a family event to remember.”
 
Based on sell-out attendance in previous markets, advance ticket purchase is strongly encouraged.
Five sessions – all identical – are available for the Phoenix July 12 – 14th tour stop. LEGO KidsFest tickets are $21 for adults and $19 for children and can be purchased online at www.LEGOKidsFest.com.


If you are planning on attending, here is a link to a coupon where adults pay the same prices as kids :)  http://www.arizonakidsguide.com/coupon.php?bid=11141&dealid=1264&regionid=384

 

Play-Well Lego Summer Camp

Conner just finished up his week-long Play-Well TEKnologies pre-engineering Lego summer camp.  He had a BLAST!  We actually signed him up for one more week of camp in July because he had so much fun.  There are a few homeschooling groups in Phoenix that meet weekly for Play-Well as well, and Conner is really excited to join a group.  Play-Well camp teaches kiddos how to bring Legos to life, using pre-engineering ideas and concepts, and it was right up Conner's alley!   I sent a camera with him so he could take photos of his work.  Here are some of the things he worked on...

(I asked Conner to tell me what his creations are)

 

 

"A belt and pulley car"

 



 

"A carousel that uses a connector to hold an Axel"

 

 

"Just a creation using bricks"

 

 

"A friction car"

 

 

"A tower with a working elevator"

 

 

"A balance for fighting robots"

 

 

"My fighting robot".