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! 



 

A Big Announcement

(Please read the bottom of this post for updates)


I have a big announcement to make, and this may take me a while, so sit back, grab some popcorn, put your feet up, and know that if you are reading this, we appreciate you and all the support that you have given us!


We are [paper] pregnant [again].

Whew, it feels good to get that out!  It's been something that we have been holding inside for a while now, and today, my birthday, feels like the perfect day to share.

You see, there are two girls in India that stole our hearts.  One, we spent one week short of two years trying to bring home.  We prayed for her, cried for her, fought for her, and felt emptiness in our hearts until we could bring her home.  The moment we saw her, we knew she was meant to be ours. Now, she is home, after what seems like an eternity of waiting.  She gets held close, hugged, rocked, kissed, and told that she is loved.  The other was unexpected for us.  We didn't think we would fall in love so quickly again.  It breaks our hearts knowing she is in a crib, alone, waiting and wondering when someone will come for her.  Well, sweet girl, we are coming.

You may remember me posting about a sweet girl in India named Deena.  Deena is Ramya's best friend from her third orphanage in Bangalore.  She is a beautiful and loving 5 year old girl who wants a family so very badly.  You may have heard me say that Deena needed a family and I may have begged you to make her part of yours.  But what I was really yelling is that God was putting Deena in our hearts, and it felt too big to wrap our minds around right now, so I was looking for a way around what we were feeling called to do.

Sigh.  It just never works out like that, I'm not sure why I haven't learned my lesson. 

Ever since coming home from India, I couldn't get Deena out of my mind.  I kept thinking about her was and feeling very strongly that we had a role in her life, though I wasn't exactly sure what it was.  Then I put together the slide show for Ramya's welcome party and  I started to understand what our role was, but hadn't quite put words to my thoughts yet.  I was watching the slide show with the kids the day before our adoption party and when Deena's photo came on, Conner looked at me and said, "Momma, we need to go bring Ramya's best friend, Deena, home.  We need to adopt her.".  This is coming from the boy who insisted that we were going back to India to adopt a brother for him.  I told him I didn't know, that it wasn't that easy, and that it would be a big deal.  He told me that it was ok, it's just what we needed to do.  I love that boy and his big heart.  He put to words what I had been thinking all that time.  I kind of shoved the thought to the back of my mind and went about our days.  She kept coming back up to the front of my mind, though. I started talking with David about what was in my heart, and he said he felt that we needed to adopt her as well.  We both agreed it was crazy and that we were nuts, but both felt strongly that we needed to try.  We weren't quite ready to commit, so decided to pray about it, but really, we already knew where God was leading us. 

The next couple of weeks were a tizzy.  I had emailed an online friend who had brought their little guy home from the orphanage just a few weeks after we brought Ramya home.  I told her what we were thinking and she told me she had actually considered adopting Deena.  She had copies of her medical files that were outdated, but she said she would send them to us.  I knew Deena had a disability, but I wasn't sure what it was.  It turns out that Deena has osteogenisis imperfecta (OI), level 4, otherwise known as "Brittle Bone Disease". 

To be quite honest with you, this is where I freaked out a little.  I mean, I know spina bifida.  You tell me I am supposed to adopt a kiddo with spina bifida, and I'd say, perfect!  Great!  Spina bifida? I know just what to do!  But osteogenisis imperfecta?  What was that?  I read online and it sounded big and scary.  But then I remembered that once spina bifida sounded big and scary to us too.  After having Madi, we realized it's not.  It's just a small part of our life and hers. 

We started talking to parents to try and see what daily life would look like for Deena.  We searched for local families we could talk to.  I prayed and told God that if this was going to happen, I needed a specialist locally that could help her, as well as local families to talk with.  After talking with parents that had OI and/or children with OI, I determined that the biggest things for her would be a good orthopedic surgeon and good therapists.  We already have amazing therapists who do in-home therapy, so we are all set there.  All we have to do is take it from 2 hours of therapy twice a week (Madi and Ramya both get 1 hour of PT and 1 hour of OT a week) to 3 hours of therapy twice a week.  Because we have in-home therapy, this really isn't too bad.  I e-mailed Dr. Segal, our orthopedic surgeon, and sent him Deena's medical files.  I asked him if he would be able to help her and told him that OI sounds big and scary to me.  He told me a little about how we would treat her when we brought her home, said that he was confident he could help her and provide the care she needs, and told me he would put me in touch with local families so that it wouldn't feel scary to me.  So just like that, in one e-mail, my prayers were answered!

I'm not going to lie.  The thought of having another child in our home that needs pretty significant medical care frightens me a bit.  Things feel so incredibly busy right now, and I constantly feel like I'm sinking and just can't ever catch up.  I mean, seriously, I've had some framed photos sitting on my desk for over a month, waiting to get hung up, and I still haven't done it, because that's how far behind I am.  Last week I realized I hadn't balanced my check book in over a month.  I've had phone calls to make for weeks that haven't been made.  I've had things to organize for months that haven't been organized.  Ramya's adoption book is still sitting there half done.  I have bills to pay, we have appointments coming up, and there is just so much more.   Then I think about the added doctors appointments, hospital stays, surgeries, medical bills, medical insurance premiums, and my head starts to spin a little.

Then I stopped, and I thought about how things felt the last time we decided to adopt.  Madi was only 2, Conner was 4.  Things felt busy and crazy and I couldn't believe I was thinking of adding to that.  Madi wasn't very independent yet and I felt like trying to care for another child with special needs would be too huge for me.  When I stopped to think about life in two years, though, with Madi being 4 and Conner being 6, it felt like something that we could do.  That is basically how it feels again.  I have checked with WACAP, and another adoption would mean starting ALL of the paperwork over again.  We have to have the same amount of money (last time it was about $35,000) again.  It would also mean another 1 1/2 to 2 year wait.  By then, hopefully the girls will be stable medically, our appointments will have calmed back down, Ramya will have attached and will be adjusted, and life will look very different.  It would be wonderful if this adoption did not take as long, but it looks like the chances are good it will. 

Some things have changed in India, and we will need your prayers for sure.  Because of new CARA guidelines, you can no longer pre-match with a child, which is what we did with Ramya, since we found her first and then started our paperwork.  What this means for us is that we are going in to this with no guarantee that we can actually adopt Deena.  WACAP is supportive of this adoption and wants to make it happen.  They usually don't approve families to go back and adopt again so quickly, but they are willing to let us start the paperwork and process now.  The orphanage is supportive of our adoption and wants to make it happen as well.  They are both going to work as hard as they can to help us bring Deena home, but we may go through all of the paperwork, cost, homestudies, etc... only to find out that we cannot actually adopt Deena.  Let's just pray that doesn't happen!

So that's that!  We know we are crazy and we know this won't be easy, but we are excited (and slightly nervous ;)) to start the process to bring Deena home.  We feel strongly that God is directing us down this path, and we feel confident knowing that He is walking along side us.

Adoption paused, and broken hearts... http://www.aworthyjourney.com/2013/08/such-hard-post-to-type.html

Starting the adoption process again (and hearts at peace!)... http://www.aworthyjourney.com/2014/08/our-big-announcements-finally.html

Officially Matched!

http://www.aworthyjourney.com/2014/09/two-huge-answers-to-prayer-this-morning.html

We have US approval...

http://www.aworthyjourney.com/2014/11/two-big-reasons-to-rejoice-today.html

Dossier is almost done...

http://www.aworthyjourney.com/2014/12/adoption-craziness-but-almost-there.html

 Dossier sent...

http://www.aworthyjourney.com/2015/01/our-dossier-is-off.html

Approved In-State and Article 5....

http://www.aworthyjourney.com/2015/04/i-finally-have-adoption-update.html

 NOC was issued...

http://www.aworthyjourney.com/2015/04/woooo-hooooo-our-noc-is-here.html

Video of telling Ramya who we are adopting...

http://www.aworthyjourney.com/2015/05/we-let-cat-out-of-bag-with-video.html

We had our first big court date...

http://www.aworthyjourney.com/2015/09/some-big-news-and-big-prayers.html

Chatting with Deena for the first time...

http://www.aworthyjourney.com/2015/09/great-news-today.html

Written orders received...

http://www.aworthyjourney.com/2015/11/big-changes-headed-our-way.html

Passport is ready for pickup...

http://www.aworthyjourney.com/2015/12/too-big-not-to-share-tonight.html

Flights are booked...

http://www.aworthyjourney.com/2015/12/2-hours-on-phone-and-8000-on-credit.html

God is with us always....

http://www.aworthyjourney.com/2015/12/its-amazing-watching-details-unfold.html

We are in India...

http://www.aworthyjourney.com/2016/01/we-made-it-to-india.html

She's in my arms....

http://www.aworthyjourney.com/2016/01/i-have-my-baby-girl-in-my-arms.html

Exit permit in hand...

http://www.aworthyjourney.com/2016/01/exit-permit-is-in-hand.html

Headed home....

http://www.aworthyjourney.com/2016/01/whew-almost-home-what-adventure.html

Deena turns 8...

http://www.aworthyjourney.com/2016/01/happy-birthday-deena.html

Video of David and the Girls meeting Deena...

http://www.aworthyjourney.com/2016/01/finally-video-and-update.html

Her New Wheelchair!

This morning Madi had an ultrasound and VCUG at St. Joseph's Hospital.  It mostly went ok, except when the ultrasound tech stopped what she was doing and asked me to explain what is going on with her left kidney.  This caught me off guard because, other than the renal reflux on the left-hand side, I didn't know there was anything going on with Madi's left kidney.  I think I remember the doctor saying it was slightly smaller, so I'm hoping that's what she means.  Unfortunately our appointment with the urologist isn't for 2 weeks, so in the meantime, I'm trying not to stress about it.  I did, however, have flashbacks to my 22 week of pregnancy, when the ultrasound tech basically said, congrats, you are having a girl, there are some problems, the doctor is not here but we will call you and let you know what's going on.  I'm really praying it's nothing new!

After the testing we went to Hissyfits, a local consignment store we like.  Next we went to Phoenix Children's Hospital to pick up some power cords I left last time we were there.  We also ate lunch, then we were off to get Madi's new wheelchair.  Madi had picked toxic green, of course, because every little 4-year-old princess needs a toxic green chair (or at least in Madi's mind :)).  She was SO excited and kept asking all morning when she could go get her "tocic geen" chair.  When she saw it she said, "It's just what I always wanted!".  It fits her great and there are many things I like much better than her last chair, like the cushon and the tilted wheels.  Here's a video of her showing off...

(P.S. I asked her to do a spin and she said, "No!  I don't want to show you a spin".  Later she says, "perfect", just in case you are wondering :))

 

Ramya will still fit in Madi's pink chair, so she will use that for long distances.  I'm taking both girls to Michaels to pick out some new decorations to customize their chairs with.  They are both excited! 

That's it for now!  Next week is Ramya's surgery, so please continue to keep her in your prayers.

Busy, busy, busy (did I say busy?!?!?!?!?)

Life has been busy, but good!  This is Madi's last week of preschool for the year.  She will have one more year after this, then she will homeschool with Conner and Ramya.  We have about 3 weeks left of homeschooling, then will do only partial summer days.  My goal is to do a lot of fun experiments and the such this summer. 

Last week we picked up Ramya's first pair of KAFOs and she is very, very proud of them!  Ron, our go-to-guy that we love at Hanger, made them for her with love!

 

 

When we picked up her new leg braces, we dropped of Madi's HKFOs, which were not fitting well again (that girl won't stop growing!!!).  After Madi's neurology appointment (more to come on that in a second) today, we picked up her HKFOs, so now both the girls have properly-fitting leg braces.  Double the trouble around here!  Ramya's strength and energy is low still, so we are slowly working on building up.  Today she spent about 30 minutes in the learning tower with them on "helping" me make dinner, which is the longest she's gone yet!!  She did start twisting her legs and buckling from her muscles getting tired, but she really made it a long time!  We've still only gotten about 5 minutes in the walker, but I know every day she will get stronger and stronger!

 

 

Last week (or maybe the week before... time just blurs together right now!), all the kiddos got their teeth cleaned.  I had Conner and Madi go first so Ramya could watch, then it was Ramya's turn.  We held hands and she did great!  None of the kids have cavities... YEAH!

 

 

(conner took this one :))

 

 

 

Today was neurology for Madi.  She is going to try a new seizure medication, since the Trileptal doesn't seem to be keeping her seizures away.  We are hoping this one will do the trick for her.  I just hate, hate, hate that she has them!  And, of course, I feel bad for letting her get the MMR vaccine, since they didn't start until she got it.  I was just really wanting us all to get to go to India together, but that is not how things were meant to be.  I know that may not be the reason she started getting them, but it's just quite a coincidence that she had never once in her life had a seizure until she got the vaccine, and then 4 days later, she started and hasn't stopped.  The CDC website lists ongoing seizures as a "rare" side effect of the vaccine.  Considering she's already neurologically challenged, I think the vaccine was enough to tip her over the edge and begin the seizures.  Anyhow, hopefully this new medication will do the trick and we can get her seizures under control.  She was stuttering quite a bit more after our last big cluster of seizures and hospital stay, but that seems to have gone down again, thank God!  She is still coughing a lot more randomly and has thrown up randomly quite a bit more.  They are hoping the medication change will fix this, but if not, she may need a swallow study to make sure she's not aspirating on her food.  The pediatrician also wanted to get an MRI, due to the continuation of seizures, but the neurologist does not think it's necessary, so we shall see what we do there.

 

Next Tuesday Madi goes in for a VCUG, a renal ulrasound, and then gets to pick up her new wheelchair.  Then, the following week, Ramya needs an exploratory surgery to see what is going on with her urinary system, figure out what and how they did surgery in India, and try and clean up her granulation tissue on her belly button that itches her all the time.  He'll also try to figure out if her muscles are tight enough, or if bulking her up will help keep her urine from leaking out.  Her bladder holds a decent amount, but she leaks very easily, so he thinks it may be a muscle tightness issue.

 

Attachment is going well.  Ramya seems to be getting more confident.  Her fine motor skills and coordination is getting better, and her English is coming along very well!  She wants to be held a decent amount, but also loves to be independent and play.  She loves getting and giving hugs and kisses, and we probably hear "I love you" about 20 times a day, which is wonderful!  We are a very affectionate family, so she hears it often as well :).  We are working on telling the truth and getting attention appropriately/ in appropraite amounts/ at appropriate times, etc..  We are playing games (thanks Amy for the suggestion!) to work on taking turns and waiting our turn.  We are also really trying to teach both Ramya and Madi about strangers.  They both think it's ok to touch and talk to anyone they see.  Madi will ask random strangers for hugs, and Ramya will try and get attention and will touch anyone close to her.  I think I'm going to have to be tougher and firmer with the girls to help them get it.  I really think either would just go with a random stranger if they were asked, which is not ok at all! 

 





I think that's it for now!  Please keep the girls in your prayers as they go through testing, and as Ramya has surgery.  We'll have a busy few weeks, but I am thankful that the girls are followed so closely and get such great medical care!!  I am also thankful that, amongst it all, God gives us many moments of peace and laughter. 

A Little Giveaway... Zoap's Soap

CONGRATS TO OUR WINNER... BECCA!

Something a little different for you today... a give-away!

My friend Mary lives locally and makes wonderful soap that I really like.  I thought I would share a little soap-love and give away two bars on here. 

Right now I am using the castile soap, which is the most basic soap she makes, but I really like it.  It has a mild scent and keeps my skin nice and soft.   I've also used the shave bar, which I really like for shaving.  After shaving I find I don't even need lotion!  Zoap is really reasonably priced, and when you make a purchase, you are helping out a great local family!  It is also made with simple, high-quality ingredients with no yucky stuff added and each batch is hand-made!  There is still time to get your mother's day gift baskets for gifts too!

One lucky winner will win two bars...  One of coffee (I think, I have to check, so don't quote me on that ;)) and one of green tea soap (again, I could be way off here... I need to check, but either way, you get it free, so hey, it's still great, right?!?!).  The shipping is on me and there are 3 ways to get entries.  You can enter starting tonight and the contest will go through the 14th.  Just enter using the rafflecopter below, and while you are at it, check out the Zoap Facebook page and the Zoap website. 





 

a Rafflecopter giveaway

Stinky Seizure and Summer Fun

This morning did not quite turn out how I anticipated.  At about 3:35 a.m. Madi woke me up by throwing up.  Thank God she was sleeping next to me, or I may not have heard her!  I brought her in the kitchen and the gagging/throwing up wasn't stopping.  I also noticed she was staring off to the right.  Crud.  It was a seizure.  I held her and gave her a dosage of her rescue med (at the new increased dosage) and it didn't stop.  She then moved in to repetitive convulsions in her lower body.  I then gave her a second dosage and the convulsions finally started tapering off and she fell asleep.  I woke her up about 45 minutes later to check on her (per what the doctor told me when I called to ask if we should go in) and she was able to tell me her name and the such.  We moved back to bed and I had her sleep on my chest.  Of course I didn't fall back to sleep too well because I was worried,  but she slept and that is what matters.  When she woke up she was a bit dizzy seeming, shaky, and threw up not too long after being awake, so I thought she may have the flu or something, but after eating she slowly returned to her normal spunky self.  I think maybe all the medication on an empty stomach may have caused the shaking/dizziness/throwing up this morning.  We went to the doctor this afternoon to have her checked out and also to have him look at her right leg, which has seemed to retain some fluids and has been slightly puffy since earlier in the week.  He said to keep her out of her HKFOs and put some heat on it and see what happens.  She has grown, again, and her HKFOs aren't fitting her right, again.  I've noticed her right leg especially popping out.  I think the pressure and reduction in circulation because of how they are fitting is causing some swelling and water retention. Thankfully we have an appointment to get them fixed on Wednesday!   He also checked her urine.  The initial tests didn't show anything too concerning, but they are culturing it.  We are also working on scheduling a head and full spine x-ray to make sure everything looks good there.  I plan to go to bed early tonight and try to get some sleep.  Please pray for no seizures for Madi!  We have a follow up with her neurologist coming up and I have lots of questions for him ;).  I'm also concerned about the fact that she had never seized, ever, until 4 days after having the MMR vaccine.  On the CDC website, ongoing seizures is listed as a rare side effect of the MMR vaccine.  We had gotten the vaccine in hopes of all going to India together, but because of the onset of seizures, that wasn't possible. 

On a positive note, we have been having a blast outside.  The pool is still a little cold, but it doesn't slow the kiddos down at all!  We slightly heat the spa so it's a comfortable temperature, and that helps.  Here are some photos of our pool fun...

Ready for a dip!

 

Fun in the sun

 

Cooling down

 

Our new floaty from Costco... it has a little propeller to push the kiddos gently around the pool and they love it!

 

 

In other news, we have something very big weighing on our hearts.  We aren't ready to share the details yet, but please keep us in your prayers as we make some big decisions.  

 

It's Here, and I LOVE it!

I'm on a mission to get the photos in our house updated so that all three of our blessings are in them.  The first was our new canvas in our family room to replace the on of Conner and Madi...

Tonight I picked up our second "big" purchase.  On our wall, we have our kiddos footprints done in plaster and framed.  We wanted something for Ramya as well, so opted to have her hand done.  We used the same person that did Conner and Madi's feet and kept the frames, style, etc... the same.  It came out just perfect and we LOVE it!! 

 

 

The plaque says, "Ramya Lynn (insert last name) Forever Ours February 7, 2013" and on the back is the poem "Legacy of an Adopted Child"...

 

 

 



I just love all of the details in her little hand print.  You can see her little fingernails, the lines in her hand, etc... with amazing detail!

 

 

 

We worked with Lorriane at Little Treasures and More for all 3 of our kiddos.  She is always amazing to work with!  Here is a picture of her information just in case anyone is wanting to check her out.