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Do you shop at Amazon.com or know someone who does? Click on the link below, or any Amazon link in this blog, to help us earn Amazon Credit in order to buy therapy equipment! Anything you order off Amazon counts! Please bookmark Madi, Ramya and Deena's link and pass it on... every order helps! http://www.amazon.com/?_encoding=UTF8&tag=missmadi-20

Wednesday, July 31, 2013

What a difference 5 months makes!

It's so crazy to think that Ramya's only been home with us 5 months.  It feels like she's always been here!  What I look at her photos, I just can't believe how much she's changed in the past 5 1/2 months.  I think these pictures say it all!


 The first picture we saw of Ramya and fell in love with...
 
 
A photo of Ramya right before she changed orphanages (to her third)...
 
 
Ramya when she got her first gifts from us and learned we were waiting for her...
 
 
The first time I got to meet and hold Ramya...
 
 
Our first professional family photos...
 

 
Our Colorado trip...
 
 
A photo from this weekend...
 
 
 
What a transformation Ramya is going through... she is amazing!  
 
 
 
 
 
 






 

Some New Fun (Therapy) Toys!

First off is our new Leckey stander.  This beauty came to us totally free (thanks SO much Gina for letting us know about it and putting it on hold for us!!) and works great for both of the girls.  It helps Ramya feel secure so that she can focus on standing (she has a big fear of getting dropped and is used to supporting herself with her arms, so we are working through that with her).  It's also nice for Madi's legs because it holds them in a different position than her HKFOs do, giving her a different stretch.  Her legs have been less tight since we started using it.

 
 
Our next new items are our new Floor Surfers (tummy scooters or tummy board) from Southpaw Enterprises.  They have an awesome contoured base and nice foam top for comfort.  It's been great for building Ramya's upper body strength and Madi loves how fast she can go with it.  In fact, instead of crawling long distances on her own, she'll request it so that she can get there faster.  Both girls are really having fun with them!  These were purchased using the money from our Amazon Associates Account.  A HUGE thank you to each and every one of you who purchase using our link, or share it with friends.  These have been amazing therapy tools for the girls, and they would not have been covered by insurance.  Here they are in use...
 

 
And last but not least...
 
A while back we bought Madi a set of used special tomato padded seats as she outgrew the toddler highchair we had at the table for her.  It held her booty great, but held her legs in an odd position because the seat was too long for the padding.  It also slid around on the chair a lot, changing her positioning during feeding frequently.  When we had her feeding evaluation, the specialist said that she thinks a big part of Madi's gagging/choking/throwing up during eating is positional.  She felt that getting Madi in the correct feeding position would help a lot with these issues.  We like the special tomato chair because 1- It goes with the padding we already had, 2- It isn't bulky but still gives her enough support and 3- It's easy to adjust and wash and 4- For a feeding chair, it's pretty affordable.  We could have requested it through insurance, but we are STILL waiting on the shower chair that was requested and fitted in January of this year so that she can take showers.  We were very ready to help Madi stop gagging during eating, and decided to use her Amazon money for one instead of going through insurance so that we could get it right away.  gh, We tried really hard to find a used one but never did.  We found a discount code, thouand saved a bit of money on it, which was nice!  So far it's been great and we've noticed a ton of improvement.... Yeah!!!  The foot pads don't match the pads we already had, but Madi doesn't seem to mind :).
 
 
 
Thanks again for all of your support.  We love our "village" and are loving our new equipment!
 
 

Tuesday, July 30, 2013

Sometimes Life Really is Just All Fun and Games!

I feel like all I've been doing lately is posting about appointments, because, well, we've had a lot lately.  I promise, though, lots of time life around here is just all fun and games!  Smiles, giggles, lazy family movies on the couch.  It really does happen, and it's wonderful!  This weekend we went to my parent's cabin in Flagstaff to spend some quiet time as a family.  It was wonderful to get out, and it was also Ramya's first trip to the cabin, which was a lot of fun.  She really had a blast, as did Conner and Madi.  The weather was beautiful and we got lots of rain.  We didn't do a whole lot, which was just how we wanted it, but we did go to Bearizona for our first time.  Here are a few photos from our Bearizona visit...


Enjoying sitting in Conner's booster while we slowly drove through and saw the animals....

 
Just hangin' out!

 
We took an open bus ride and had a blast!



The kids loved all the animals!
 




 

Thursday, July 25, 2013

3 out of 4 down and a nice embarrasing moment...

Today we had #3 out of our 4 appointments this week.  Today was Ramya's turn and we went to see Dr. Segal, our orthopedic surgeon, out of PCH.  Our appointment was at 10:45 and we made it up there just about on the dot.  I had made an x-ray appointment for Ramya at 12:00, hoping to be done by then.  Ramya needed an x-ray of her bowels and also one of her left hand to check for age.  They just want to make sure her age and bone growth/development are in sync.  At 12:00, we still hadn't seen the doctor, so I found a nurse and had them call down to x-ray to let them know we would be late.  We saw the doctor at about 12:15 and he had 3 students with him.  He said he was teaching the students about spina bifida, and I told him, "Great!  You get two kiddos for the price of one today!".  The kiddos were getting quite restless after a long wait, so Dr. Segal did some magic tricks for them.  They really enjoyed them and it helped put them in a better mood.  He's always great with them and I really appreciate it!  He's a wonderful doctor and even came by just to say "hi" to Madi when we were in the hospital for her vesicostomy, even though he didn't have to.  I love and appreciate that he sees my children for the amazing little blessings they are, and not just for their diagnosis.  He showed me Ramya's hip x-ray and told me both her hips are displaced.  They aren't totally out of socket, however, her sockets are not carved out correctly, so they sort of pop in and out.  When he was showing us the x-ray photos, there was a heart on one of them, because they use a little heart-shaped blocker that says, "save the gonads" so the radiation goes around a kiddos reproductive area.  Anyhow, Madi was very fascinated with the heart and thought it was really Ramya's heart.  I explained to her that a real heart doesn't look like that and would be in a different spot.  I told her it was just a sticker, but then she thought that they put he sticker IN Ramya.  After explaining that it had just gone on the outside, and that they had already taken it off, Madi decided to yell that Ramya had a penis.  We then got to have the talk, again, about Ramya being a girl and not having a penis...  in front of the doctor and the students.  They were really trying not to giggle.  Fun fun!  Dr. Segal said we need to keep watching her hips, but that we aren't going to talk about surgery for them at this time.  Next we headed down stairs for x-rays.

After checking in with radiology we took a brief a potty break then got Ramya's x-rays done, which didn't take too long.  We were done by about 1:15.  We headed over to the cafeteria next, as the girls decided they didn't like the snacks I had brought and everyone was starving.  My kids LOVE to go to the cafeteria and order food.  And by love, I mean LOVE.  They look forward to those little trips and it really brightens our otherwise not so fun days.  They offer gluten-free pizza and pasta, as well as other things they really enjoy.  Unfortunately we didn't have a great cafeteria experience, but in the end, the kids had full happy bellies, and that is what counts.  In a nutshell, the guy running the pizza/pasta area reallllly didn't want to make our pizza, as he was busy (which is understandable), but at 1:45, he still hadn't even started our pizza and my kids had, quite literally, been standing in the same spot waiting for about 25 minutes.  He just kept putting us off.  I asked to talk to a manager and he was wonderful.  He got our pizzas started for us and even gave us two free meal tickets.  He really was a nice guy.  I tried to explain to him that we come to the hospital very, very often and that it's not a lot of fun for my kiddos, but that their gluten-free pizza is a like a little ray of sunshine for them (I'm not exaggerating either, it really is.  They get so excited for it.  Conner even chose to come with me to the hospital so he could chose food from the cafeteria instead of going to hang out with Grammy, whom he loves, because it's just that exciting for him).    I told him I expect to wait a little longer, because it's a speciality item that they offer, but that if they are going to offer it, they really should be prepared to make it.  I thanked him for offering it and told him how much we love having that option available and how much it means to the kiddos.  Finally at about 2:10 our food was ready and we got to sit down to eat.  The kids were very very happy and scarfed down their food!  Conner looked at me and said, "Momma, thank you for telling that man to please make our pizza.  I was really hungry and I wanted it so bad.  I was so glad you said that".  Hearing that made it all worth while!

We finally made it home at 3:30, and it felt great to sit down and relax for a bit!  We had left at 10 a.m., and it was a long day for just one appointment and some x-rays.  I really didn't anticipate us being gone so long! 

When we were at Dr. Segal's office, we met a cute little boy with osteogenisis imperfecta 3 (OI3).  This, of course, made me think of Deena, which, of course, reminded me how much I dislike this long process, which reminded me of how much longer we have to go to get her home, which then reminded me that I haven't updated about our process!  Right now I don't have much to tell.  We are working on homestudies and are getting things done as fast as possible.  We basically have to re-do everything, which is a lot.  That's about all of the update I have for now, unfortunately.

I thought I'd share a few little adoption attachment updates.  The other day Madi was talking to Ramya.  She said, "Ramya, I really miss-ed you when you were in India.  I really wanted you to come home.  But now (long pause) I want you to go back to India."   Ramya very seriously and with emotion said that she didn't want to go back to India, which was nice to hear.  It was a good opportunity to talk with the girls about how Ramya part of our family, forever, and she is never going back.  Ramya is forever my daughter, they are forever sisters, etc...  I think it's a good thing for Ramya to hear and be reminded of how much we love her and how, no matter what, she is ours, forever.  I know that all of her last placements have been temporary, but I really want her to see that this isn't just another transition; this is it.  Tonight the girls were taking a bath and Ramya put all of the alligator bath toys in a bucket.  She said, "look, this is a family!"  It made me smile and it was a good ending to our day!

That's about all the updates I have for now.  Tomorrow we head back to PCH to see our urologist and check on Madi's vesicostomy.  After that we head to Flagstaff to  my parent's cabin for a few days.  We are all so excited and can't wait!!

Wednesday, July 24, 2013

Whew... what a week... oh wait, it's Tuesday!

This week has started off with a bang!

Monday I took Ramya to the endocrinologist.  They agreed that the labs our pediatrician look to check hormone levels look good, but they said those tests aren't always accurate, as hormones fluctuate.  They are sending us for a longer test out of Thunderbird hospital where they will put hormones in her body and see what her body does with them (or something to that extent!!).  I guess it takes about 2-3 hours.  She will need an IV (boo) but it's a quick, awake, outpatient procedure, so that's good.  They also want an x-ray of her hand to try and check her bone age, as she is very small weight and height-wise for her age.  We were headed for an x-ray Thursday anyway, so we're just adding that one one.  The took a blood sample as well to test for a few more things that might be causing her lack of weight gain.  Fun fun!  Ramya did great with the blood draw.  She wanted to snuggle right in to me, which was totally ok with me, and then announced that it didnt' hurt too bad!

On Monday I also got our second post-placement report in from our homestudy agency, so that I could add photos and send it off to WACAP.  I read through the report and got a little sad when I read that Ramya's emotional age is 2.  Though I know that it is true (I figured she was somewhere between 2 and 3), and we expected her to be right where she is and are totally ok with it, it was still hard to read on paper.  I have no doubt that she will grow and change quickly, and I love her just the way she is, but it saddens me that International adoptions take so very long to complete and, therefore, contribute to our sweet kiddos getting so far behind.  She is doing amazing, though, and I am so thankful that God blessed us with her! 

We also got a special box in the mail on Monday from my wonderful aunt who spoils us.  My aunt and uncle live in Hawaii and always find special treats for us.  There were cute little things for the kids, and some very yummy things for David and I.  It was just the pick-me-up we all needed!!  The best part, of course, was the Hawaiian coffee straight from Hawaii!  It doesn't get any better than that! 



Today we headed down to Children's Rehabilitative Services (CRS) for Madi's appointment with Dr. Segal, her orthopedic surgeon.  Our appointment was at 9:45, but we didn't get to see him until about 11:30.  Of course I brought ipad, but forgot to check the battery, and it was dead.  Conner's leap pad worked for about 10 minutes, and then those batteries died too.  The kids did great, but it was just a long wait. We found a "Where's Waldo" book and I couldn't help but laugh every time Madi yelled, "Look!  I found Weirdo!  There is Weirdo!".  Madi was all smiles for Dr. Segal... until he needed her HKFOs off to check out her hips and legs.  That's when all heck broke loose!  She cried hysterically because she didn't want to take them off.  The long wait, the fact that it was almost lunch time, and the fact that she was having so much fun showing off, really didn't help either.  Poor Dr. Segal.  He tried so hard to make her happy, but she cried the entire rest of the appointment (about 25ish minutes by the time we made our next appointment and such too).  Ramya also decided she should get in a funk because Conner didn't like it when she tried to grab my phone from him without asking.  So, at that point, I had two melting down.  I apologized and thankfully everyone was very understanding.  Hopefully when Ramya sees him on Thursday out of Phoenix Children's Hospital (PCH) we will have a much smoother appointment!  Dr. Segal agreed that Madi's HKFOs are too small (again!!) and wrote a prescription for a new pair.  We will go see Ron in August to get Madi casted for a new pair, which she is VERY excited about!

Conner got a special treat today because David's parents took him to Jumpstreet after lunch.  He had a blast and loved getting out and getting lots of attention for a bit.  The girls also got to watch two episodes of Daniel Tiger while he was gone, and that made them very happy, so it was a win-win.  We limit TV viewing and I have the kids agree on what show(s) to watch for the day, so it's not often Conner agrees to Daniel Tiger, hence why they were so excited....

Tomorrow we will meet with a potential respite and HAB worker for Madi.  I pray she works out well!  Thursday we head down to Phoenix Children's Hospital so Ramya can see Dr. Segal and can also get 2 x-rays.  One will check her bowels and one to check her hand bones.  On Friday, we head down to Phoenix Children's Hospital again so that Madi can have a follow-up appointment with Dr. Zuniga, our urologist.  After that we will drive to Flagstaff to spend a few nights at my parent's cabin.  We can't wait!!  It will be the perfect end to a crazy week! 

In other news, I got a refund check from Phoenix Children's hospital today for overpayment.  Somehow they managed to over charge us by over $900!  I'm not exactly sure how that happened, but I am thankful they caught it and I am so not going to complain about getting the money back!


 

Saturday, July 20, 2013

A Quiet Week and a Cute Video

This week we had a much needed quiet week at home.  We had no doctor's appointments, no dance, no karate, and only our 2 in-home therapies.  It was wonderful!  I got so much organizing done and even caught up on a little bit of work that I was behind on.  Wooo hooo!

Madi's vesicostomy is healing up nicely.  It doesn't seem to bother her any more, and though she has asked me a few times why she needs it, she is ok with having it and being in "normal" pull-ups again.  I am very thankful for that!

Here's a little video I took of the girls singing today in the car.  They are so cute.  I love when they get along this well (notice they are holding hands).  Though it's very obvious that they love each other, they are true sisters, and do their fair share of arguing as well ;).  They sure do love to sing!

 

Friday, July 12, 2013

A medical update for Ramya and Madi

Earlier this week, I took Ramya in to see a general surgeon about the MACE surgery she had done in India.  Dr. Zuniga, our urologist, wanted to see if Dr. Bae (the general surgeon) could get it working, or if he even thought we needed to.  Dr. Bae reviewed her files and the MACE site and said he believes that the MACE isn't really usable. Normally the MACE would go in at the very beginning of the colon so that you could flush the entire length of colon.  Ramya's was put in at the very end of the colon, though, which doesn't really help her much.  If we decide to try and do surgery on her bowels to help her empty them, she will need a cecostomy tube.  He reviewed some of her past x-rays and said that, while she is not distended or impacted, she does have a lot of stool throughout her entire colon.  If that is her "normal", then he thinks she will likely need the cecostomy.  My goal this month is to clean her out and try to keep her cleaned out so that we can see if we think it is necessary for her to have a cecostomy tube inserted or not.  If she does, we would wait until we do her bladder surgery and do it all at once.  I'm trying not to be bummed about all of these wasted surgeries from India, but it is so hard.  Her MACE isn't usable, her mitrofanoff isn't usable, and they did a bladder neck tightening that isn't helping at all.  I hate that I couldn't be there advocating for her, but I am so thankful that I am now!!

Madi went in to Dr. Zuniga, our urologist, today.  He said her vesicostomy is working well, but it is swollen more than he thinks it should be, so we have an appointment in two weeks to go back and have it checked out again.  Other than the swelling, he is pleased with how it is all working.  Yeah! 

I have been thinking about Madi's kidneys lately and am just so thankful that her right kidney is big and strong and is taking over for her left kidney.  God is so so good and I am SO thankful for His protection of my beautiful girl! 

Monday, July 8, 2013

A Vesicostomy Update

This Saturday I noticed there wasn't really any urine draining from Madi's vesicostomy site.  It looked a little red to me as well, and there was a hard lump underneath of it, so I was worried that she may have an infection that was blocking her vesicostomy from draining.  I did notice, though, that she was draining/leaking quite fine from her urethra.  Considering she never really leaks, though, because her muscles work very well, I am stumped why/how she is easily leaking.  I don't think it's because of being high pressure, as I'm not getting much urine out if I try cathing, so it shows she is draining.  Today I took her in to the urologist because she still isn't draining from the vesicostomy.  It also looked a bit yucky to me.  Turns out the urologist (we had to see a different one as ours was out of office) actually thinks that the site looks far better than most so shortly after surgery.  He thinks everything looks great and that it is nice and open.  He cathed through it and didn't get much urine out (which is a good thing, it means she's not retaining urine), but was able to cath easily.  He said the reason he thinks it is not draining is because of the swelling that is still there, and that he thinks is actually pretty minimal considering.  He said that the urine will take the path of least resistance, so because of the swelling, it's draining through the urethra instead.  He thinks within a week or so, the urine will start draining through the vesicostomy again. 

Madi still won't take a bath, though she's been cleared to since last week.  She says she'll take a bath when she's not bleeding any more, though she really isn't much at all.  So, for now, I wash her hair in the sink and give her little sponge baths. 

Madi's back to her perky little self.  I keep trying to get her to slow down, but she just won't have it!  She hasn't been in a lot of pain or needed pain medication since last Thursday.  She is recovering really well, and I am so thankful for that! 

Thanks for praying for our little gal, it means so much to us! 

Wednesday, July 3, 2013

A Kidney Update

I forgot to update on the blog yesterday, but WE ARE HOME!!!  We spent last night in our own bed, and it felt wonderful!  Wooo hoooo!  I slept from 8pm until 6 am straight, which is a lot of sleep for me.  Here's a little update, then on to the kidney news :).

Monday night was not a fun night.  They couldn't get her tube to drain, though it was draining around it well, like Dr. Zuniga said it likely would.  Starting at about 1 a.m., they kept coming in about every 30 minutes trying to get the tube (that was draining the vesicostomy site) to work.  They kept trying to flush it, thinking it was clogged.  It was hard to sleep with them coming in and out, but we got some sleep here and there.  Dr. Zuniga came in at 6:30 a.m., checked her vesicostomy, and saw that the tube was out, which is why it wasn't draining.  He said he was going to take it out anyway and so he wasn't concerned at all. 

We had two different tests that needed to be done, and they were scheduled for 3:00 and 3:30.  The first test was to check her kidney function and the second was a swallow study.  We hung out, did crafts, visited with friends, then we went off to the studies.  The swallow study went well and we saw that Madi is not aspirating on her food, which is great!  It also doesn't seem to be getting stuck in any little pockets in her throat or anything, so that is great news.  She coughs quite a bit when she eats, and it's reassuring to know that it's not anything too problematic.  We went back to our room and were discharged about an hour later, getting us home at about 5:30.  Our friends Ryan and Leslie brought us a very yummy dinner and it was great to rest and eat a yummy meal as a family!

This morning I got a call from Dr. Zuniga, our urologist (I say "our" since every one of my kids has seen him; even Conner!).  He wanted to check on Madi, we chatted a bit about Ramya and her urinary stuff, and then he checked Madi's kidney scan so he could give me the results from that.  Her left kidney should be functioning at about 30%.  The results of the scan said 1.5%, but he said you really can't even measure that low, so it's likely some where between 1.5 and 6%.  So, basically her left kidney isn't really working at all.  My heart sank a tiny bit when I heard that, but then came the good news.  Her right kidney doesn't look like a typical kidney of a child with spina bifida (which is often times smaller, shaped differently, etc....).  Her right kidney is actually larger than normal for a child her age, but it's a good thing!  It functions super well, and makes up for the lack of her left kidney function.  He said her blood labs showed completely normal kidney function and that you would never know her left kidney doesn't function, because her right functions so well to compensate.  I asked what that meant in the long-run, and he said as long as her right kidney stays healthy, which it should, that she shouldn't ever need a transplant or dialysis or anything because it functions so well.  He compared it to what he sees with kiddos born with only one kidney.  He did say, though, that if the kidney doesn't grow/start functioning better with her having a vesicostomy, we may want to think about removing it.  He said since it's not really doing anything anyway, but still runs the risk of getting an infection, if we are in there for another surgery anyway, we may want to remove it and then not have to worry about it getting an infection or have to worry about the reflux that was on that side.  I'll have to research that a bit more but we don't have to worry about that right now anyhow. 

Madi is healing pretty well.  She had some pain this morning but felt better when I gave her some medicine.  She also has some pain when I change her diaper, but other than that, as long as she is sitting or laying and resting, she doesn't hurt too much any more.  I'm so glad!  She really is such a trooper and such a sweet little girl!

Thank you so much for all of your prayers for my little gal.  We really appreciate you!

Monday, July 1, 2013

Vesicostomy Surgery Success



Today was Madi's vesicostmy surgery.  Check-in was at 8:30 and we were actually on time, which is big for us!  We got checked in, got taken back to pre-op, talked with our urologist, Dr. Zuniga, and talked with the anesthesiologist, then went back for surgery at 10:30.  I told the anesthesiologist I'd like to go back with her until she feel asleep and he happily obliged.  Some make you put on your tough momma look first, but he said it was my choice and that he was fine with it.  I was so relieved!  I had to wear shoe covers, a full suit, and a hat, so I was pretty styling ;). 

 
 
I was so glad I was able to go back with her.  Once we got back to the room she took a look around and said, "Momma, I'm scared!"  I reassured her that everything would be ok, held her hands, and sang to her.  She was out in just a few minutes.  I always hate the part when they start flailing their arms while they are falling asleep and you have to hold them.  I was glad to be the one to be there to do it, though.  I told her I loved her, gave her a kiss, and walked to the waiting area.  Man that walk is rough!  I hate having to leave. 
 
They came and got me about an hour later to let me know that the surgery went well.  There were no complications or anything during surgery, and Dr. Zuniga was able to quickly accomplish what he needed to.  They were also able to get the IV in her foot, which is always wonderful, since she doesn't feel it there, so it can't hurt/bother her.  He told me there was a temporary tube draining the vesicostomy site that would come out the next day, then warned me that it would be leaking around the tube and not so pretty.  He was right ;). 
 
When I went back to see Madi she was not a happy camper.  At first she was sleeping, but then she woke up and started crying a lot.  She was angry because I wouldn't take her home and kept hitting me and yelling at me.  They gave her something to calm her down, along with pain medication, and then she fell asleep for a bit in my arms.  After she woke up, I got her to drink some water, eat some snacks, and we got her a movie.  That helped a ton!  We waited in post-op for a bed for quite a while, over 3 hours.  We could have technically left sooner, but there was just no open bed for us yet. 
 
We finally get settled in a room at almost 4:00 and it was nice to be in a bigger place with a nicer bed.  Madi was really hungry, so we ordered her favorite meal here; gluten-free noodles with marinara sauce and a tiny bit of cheese.  I put on a movie for her and she went to town on her noodles, then all was right in the world again.  We limit tv time at home, so she's in Heaven having it be unlimited here!
 
 
 
Ramya, David, and Conner came to visit, and Madi enjoyed that a lot.  We also had visits from some of our friends; Our friend Leslie and her daughter Riley, Our friend Charles, and our friend Kim, her mom Lynn, and her two little Mayzie and Dutch (Mayzie is a inpatient a few floors down from us and we were happy they let them escape to visit!!).  Madi enjoyed the little gifts they brought her and she also really enjoyed the company.
 
Madi is recovering pretty well.  I think she feels some pressure/spasming in the bladder, as she tells me she has to go potty and starts getting upset.  This is usually about the time when the pain medication is starting to wear off.  They have her on morphine and/or Tylenol with codeine when it hurts.  We try the Tylenol first (per my request), but then give the "big guns" if that's not enough to help her. 

 
Tomorrow at 1pm they will start the kidney test.  They will put the dye in her IV (you know, that fun radioactive material ;)), and then 2 hours later, they will see how her kidneys are doing with it.  We also need a modified barium swallow study (for something totally unrelated, but that's a whole different post, and more radioactive material.. woot! ;)) and we are hoping to get that done while we are sitting and waiting for the other test.  After testing, we get to go home... wooooo hoooo!  Oh, she will also get the tube out tomorrow so that the vesicostomy is just open.  It looks a little gnarly right now (I've been changing her gauze, so I see what it looks like under the gauze, and it aint a pretty sight!), but it should start looking a lot better soon.  There is still some blood coming out of the tube, but more urine now.  Madi is sleeping next to me in bed, and I think I'm about to join her.  She seems quite peaceful right now!
 



We are thankful for the peace we have in knowing that God is in control.  He takes great care of our girl!  A big "thank you" for all of your love and support for Madi and our family during this time.  Your calls, texts, messages, and prayers mean more than you will ever know!  We are so thankful for our village and we love each and every one of you!  I'll update more once we know the results of tomorrows testing.