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.

 

Whew... Only 2 More to Go!

We are almost done with our few weeks of appointments.  It's been a rough few weeks for sure!!  We've seen the orthopedic surgeon, the neurosurgeon, the urologist, the pediatrician, the dentist, and we've had multple tests.  Next week we get to pick up Madi's HKFOs and get her wheelchair adjusted and then we are DONE!  WOOO HOOO!

Conner had to get a spacer put in a spot he had an absessed tooth that had been pulled.  We went in last Thursday at 12:20 pm.  He did great and is very proud of his new silver spacer. 

The poor guy couldn't eat or drink 3 hours before his appointment, though, and was really hungry.  I decided to take him for his first visit to Sonic and he LOVED it.  He sat in the front seat with me and we ate together and talked.  We were there about 45 minutes because he kept deciding he was still hungry and ordering more food :).  I spoiled him and let him get a nasty cherry slush that was probably full of red dye, lots of sugar, and high fructose corn syrup.. YUCK!  He sure loved it, though.  He has decided that every time he has to go to the denstist, he and mommy need to have a Sonic date.  He's such a cute and sweet little boy!



The wait to get in to see the doctors have been long, and it's taken lots of creativity to keep Madi entertained.  Here we are checking Mr. Potato Head's head circumference.  He seems to check out ok ;).

Of course, we tried on his glassess too.

Although the waits stinks, I am very glad that Madi has a team of doctors who spend time with us and really care about her as an individual.  Seen here is Dr. Moss, her neurosurgeon.  He is really an amazing guy and has fought for Madi since before she was born.  He is happy with how Madi (and her shunt) are doing and doesn't need to see her for another year!  He feels her seizure was most likely caused from the MMR vaccine and does not recommend further testing at this point, unless the seizures continue.  I am also happy that he has a special place in his heart for Ramya and is eager for her to come home.  His daughter has two adopted boys from Korea, and he is one proud grandpa!

Madi wasn't too fond of the urodynamics test to see if she still has renal reflux.  She actually did great during the test, but walking in the room and seeing that big machine just did her in.  Poor baby.  She wasn't fond of the wait for that test either.  Lukcily Child Life came with an iPad in tow and she lit up.  She layed completely still for the entire test while she watched Mickey Mouse Clubhouse.  I've decided iPads are the BEST!  I'd love to get one some day!  It would sure make our appointments go smoother!

Today we saw the urologist and we discussed Madi's urodynamic test results.  Madi still has grade 5 renal reflux on the left hand side, which I already knew (I saw it on the screen during the test).  I'm bummed about it, but it is what it is.  He isn't ready to try and correct it yet and wants to watch it a bit longer before doing anything.  He did say her bladder was holding a good amount of liquid and he was very pleased with that.  Yeah!  The wait for urology was actually pretty short, thankfully.  Child life also came back with the iPad to entertain Madi, which made her VERY happy!

We seriously need one of those things!!

I've tried to have lots of fun with the kiddos when we aren't at our appointments.  We've seen movies, gone out to yogurt, gone on treasure hunts, finger painted with pudding, and lots of fun things like that; it seems to help.

(such a goofy little guy)

In other news, Kyla, the ntee we have staying with us for a bit, officially graduated highschool... YEAH!  We are VERY proud!!











We are still waiting to hear back on our NOC and hope to have it soon.  We have our little gifts for Ramya all packed and ready to go.  Once we get our NOC, we can send them off to her.  I can't wait for her to know we are here waiting for her!  My awesome friend, Kimberly, gave me a code for a free shutterfly book, so I made one for her all about our family with lots of pictures in it.  We also are sending some books on adoption, a book about plane flights, some knee pads, leg warmers (her poor knees were so sad looking :(.  Hopefully these will help!) a stuffed animal, a little blanket, and I think that's it for now... Oh, and a photo album.  We only have a set amount of space to send things in, so we have to limit what we send.  There is one thing I know for sure...

That's all for now!  Stay tuned for photos of Madi's new up-ups (HKFOs) next week, and please keep praying for that NOC to go through.

An update from the Urology world

We saw Madi's urologist, Dr. Zuniga, on Wednesday at CRS.  He said everything looked good but the ultrasound was showing that one of her kidneys had shrunk.  She has a level 5 renal reflux on her left side, and that was the side showing a smaller kidney.  He said at this point he is not worried.  It is very rare to see a child that has not had any UTIs (she had one but that was over a year ago before the cathing) with kidney shrinkage.  He said most likely the difference is due to ultrasound tech error where one of the techs just measured wrong.  Either this tech measured it smaller than it is, or the last tech measured it larger than it really was.  He did say, though, that when we check it in 6 months, if it is still measuring smaller, we might want to try mixing dithropan with saline and injecting it straight into her bladder after cathing to see if we can help it grow normally.  I don't really like that idea, but we shall see.  He also said that the amount of liquid her bladder is holding isn't what it should be, but for her it is good and he is happy with the results.  The good news is he wants to wait before we do surgery.  He said that the standard protocol for renal reflux in kiddos with spina bifida used to be to correct the reflux, just as you wold with a kiddo without spina bifida.  He said the problem with that, though, is that you usually end up having another procedure down the line anyway (one to increase the size of the kidneys) and that surgery usually corrects the reflux anyway.  I love that he is a "wait and see" doctor, but that means we have to keep her on prophylactic antibiotics :(.  I HATE giving her antibiotics like that. I mean I seriously HATE it.  I feel terrible every time I give them to her.  I give her a very strong probiotic in the morning to help, but it does not make me feel much better.  I know they are needed because we have to protect her kidneys, but I worry about it all the time.  What if she ends up with pneumonia or something huge, and we cannot fight it because of an antibiotic resistance?  I know questioning the future and worrying about eveverything will not help, so I am choosing to remain positive and hope for the best.  She is in God's hands.  We would really appreciate your prayers, though!  Please pray that Madi's kidneys continue to grow.  Pray also that the reflux goes away on it's own.  Thanks so much!

The doctor says things look good!

This is an old picture, but I love it, so I just had to throw it in ;)

Last week we went to the Children's Rehabilitative Services (CRS) clinic and saw Dr. Zuniga, Madi's urologist.  They took an ultrasound of her kidneys and bladder (and I almost got in a fight with a nurse... long story, but let's just say, you don't mess with my child ;)) and things are still looking good.  Though she does not function perfectly in those areas, there is not too much pressure and we do not need to start catheterizing her, which was awesome news!  My prayer is, and always has been, that her bladder work well enough to not have to cath her.  We go back for another ultrasound in 3 months.  

Today we went to her normal pediatrician, Dr. Nemivant at Pediatrix.  Madi's weight is in the 5th percentile, her height in the 50th, and her head in the 55th.  Because of her hydrocephauls, her head has always been a bit larger, though it's not noticeable.  He was not worried about her weight, either, which has always been in the lower percentile.  I asked him to swab her diaper rash and see exactly what it is so that we can wipe it out.  We're waiting for the results back but he prescribed an antibiotic that is supposed to help in the meantime.  We have yet to Vaccinate Madi and I'm not sure if we ever will, or what we will vaccinate for, so our check was fairly quick.  He said Madi is looking great, though we already knew that ;)!