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!

 

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. 

Home from Surgery

We are home from Ramya's exploratory surgery at Phoenix Children's Hospital today.  Dr. Zuniga, Ramya's urologist, wanted to go in and try to figure out why her mitrofanoff surgery that she had in India isn't working correctly and also agreed to take off her granulation tissue for her, as it itches her like crazy.  They told me that I needed to stay in the room and they would bring her back, and I very nicely told them that wouldn't work for us.  They agreed to let me go back with her until she was asleep (although they made me wear a funny suit... see below) and that was nice.  Unfortunately they woke her up before they got me, and she was NOT happy about that.  I walked up to her bed and she didn't look happy.  I said, "Hi Ramya, are you feeling ok?" and leaned down to kiss her.  She broke down sobbing and saying, "mommy" over and over.  I just held her and rocked her until she settled down.  The nurse said she was crying and they thought she was in pain, so they gave her medicine.  I told them she was probably upset and looking for me because I had told her I'd be there when she woke up.  I'm sure she was confused as to why I wasn't.  They had also put an IV in her hand and she told me that it hurt.  We came home with pain meds in case she needs them, but so far she hasn't. 

 

 

There is some good news and some not amazing news from Ramya's surgery.  The good news is that Ramya's bladder and muscle tone seems pretty good, considering.  Her bladder isn't too rigid, is a decent size, and can hold an ok amount of urine.  Her muscles aren't too weak and should be strong enough to keep her urine in.  She leaks quite a bit, though, even on ditropan, so we aren't exactly sure why she's not holding in urine without leaking so much.  The second mystery is that Dr. Zuniga found a cavity in the stoma area that is keeping it from draining normally.  Basically, instead of the tube going straight down to the bladder, there is some kind of cavity part of the way down.  Sometimes, "when the stars align" the catheter goes straight down through the cavity in to the bladder, and we can get urine out.  Mostly, though, it just gets stuck in the cavity and coils.  There is some old urine in there, as well as lots of mucous.  Dr. Zuniga wants to do a dye study where we put some dye in through the port in the belly button and just see where it goes and what it does.  After that, we can decide how to proceed with fixing it.  It may very well mean another surgery, but we shall see.  He was able to take off the granulation tissue for her and I'm excited for it not to itch her any more.  When she saw it was gone she got VERY excited and had to show Conner, David, and Madi.  She keeps saying, "look momma!!  It's better!" and showing me too.  I'm glad she's at least happy about having that gone. 

 

After we got home she ate some toast and eggs.  We're relaxing and watching a movie, but she seems back to her normal self!  I'm thankful that she is feeling better so quickly.  Kids sure are resilient!! Thank you for all of your prayers!