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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

Saturday, April 27, 2013

And the Grand Total Is.....

 
 
The totals are in!  At our open house to meet Ramya we asked for no gifts, but instead, for people to donate money to Vathsalya to help meet some of the orphanage's needs.  All of our donations are in, and we are excited to announce that our grand total is...
 
 
$623.00!!
 
Thank you for helping us bless Vathsalya.  They are going to be so excited!!!  

Friday, April 26, 2013

This is Real Life

On the day we were getting ready for family photos, I thought it would be good to show you a little bit of what real life is for us.  It would be amazing to have it all be as perfect as it looked in those photos, but yeah, that's not us ;).

The beauty of my laundry room just before.  I took things from other places and shoved them there, plus had laundry to put away.  Oh, and of course, it was 5 minutes until pictures and our clothes were still not ironed ;)

 
This is me about 20 minutes before picture time.  I still hadn't showered, I wasn't dressed, and I had no makeup on!  Talk about pushing it to the last minute!
 
 
And here are the stacked toddler beds that are normally in our room.  We had to move them for pictures, so we just kinda crammed them in the bathroom :). 
 
 
 
Not to mention I stayed up the night before to pick up so there weren't toys in our photos.  Yup.  That's real life for ya!
 
 

 
 
 

Tuesday, April 23, 2013

Wow

Two months ago she was sitting in a crib.

Tonight she was sitting on a pony, eating her first cotton candy, playing carnival games, and getting carried around by her momma and daddy.

I still look at her in awe of the fact that she is actually here with us.

Life is good!

Sunday, April 21, 2013

Ramya's Adoption Meet and Greet

On Saturday we had a big open house for friends and family to come and spend time with us and meet Ramya.  Many people had already met Ramya, but it gave us time to spend together and celebrate.  We had a wonderful time and really appreciate everyone who came out to spend time with us!  Ramya did really well.  She wanted me to hold her quite a bit, but also had fun playing with the other kids (especially during quieter times with less visitors).  We also let my parents hold her, as they have seen her many, many times, and she loves that.

We also decided that in lieu of gifts, if people wanted to bring something, we would take donations to send to Vathsalya to help meet some tangible needs they have.  I'm excited to share our grand total with you soon (I have a few donations coming in soon :)) and know that it will be a HUGE blessing to Vathsalya!  Thank you to everyone who generously gave!

Our welcome table

 
 
A box for donations to the orphanage
 
 
Lots of friends came out!!  I'll share just a few photos, but we were surrounded by many people that love us, and we loved it!
 
 
Vanessa (on the left) gave Madi a great hair-do!
 
 
My mom and younger brother
 
 
My mom and dad
 
 
Playing with the kiddos... I had out bubbles and water guns.
 
 
We had tons of food, of course!  I didn't make it all myself, like I usually do, but I still made quite a bit myself.  We had Subs (from safeway), potato salad (homemade), cole slaw (homemade), veggies and ranch (store bought packet), spinach dip (homemade), salsa (homemade), taquitos (costco), chips (costco), fruit salad (thanks Kelly for helping cut ;)), lemon bites (costco), cookies (costco), brownies (homemade), hummus (costco), crackers (costco), guacamole (homemade), chicken salad (costco), meatballs (from Costco- some were marinara (sauce from costco too) and some were a spicy sauce I made myself (that grape jelly/chili sauce recipe) and I think that's it!
 
 
The dirt pit... always popular!
 
 
A fun Costco purchase that even the girls can use (thank you Petey and Chuck for the help with this!!!)

 
More sand/dirt play in our matching WHITE dresses ;) ...
 
 
Evidence of dirt play written all over her cute little face....
 
 
Love letters for Ramya's memory book

 
 
 
What a wonderful day!

 
 
 

 
 
 
 
 
 
 


 

Thursday, April 18, 2013

Madi's Dance Recital

Madi had a little dance recital at the community center a few weeks back (actually, the day of her seizure.  She had the recital during the day, the seizure at night).  She was so proud of herself and was beaming the whole time!  She told my mom and brother/sister-in-law that they were going to come and bring her flowers, so of course they did.  How can you say no to that?!?!?!  She did an amazing job and we all really loved watching her.  She's such a little joy!  Here are some photos and videos from her day...



 
 
 


(I love the little wave she does on this one ;))
 

Conner Got a Red Stripe!

I'm a bit behind on posting a few things I've been wanting to post, but here is a video of Conner getting a red stripe in Karate.  He's only been taking his lessons at the community center for about 6 weeks, and we were quite surprised when he got a stripe already!  We are so proud!  He works very hard and loves Karate.

P.S.  He won't let me hem his shirt and pants, so please excuse his sloppy look :)

 

 
Here is a photo of his certificate as well :)
 
 
 

Madi's School Photos

I think these are the best school photos I've ever seen!  I love them!





 

A Quick Update From Today's Dr. Fun!

Today was our third, and hopefully last, appointment of the week.  Our pediatrician, Dr. Nemivant, looked at Ramya's left breast (aka "nee nee" (Conner made this word up when he was little and it kind of stuck.  Normally we call body parts by their proper names, but the kids really like that one I guess ;)) that has the lump in it.  He says it's likely premature growth from a hormone surge (crazy!!) and he thinks it will go back down if she doesn't touch it.  He said that touching it and rubbing it will only make it bigger.  He gave her a firm talk about not touching it, and she seems to have backed off on poking at it, so that is good.  If I see her touching it, I just gently remind her the doctor said not to, and she stops.  Dr. Nemivant really loves Ramya and I am happy about that.  It meens a lot to have doctors see your children for who they are, and not just their disability or another patient.  He told me that Ramya is very sweet and he's glad she found our family.  That's the kind of doctor I want caring for her for sure!

Wednesday, April 17, 2013

Two Appointment Updates and My First Kiss!

Whew.... another busy week!

Tuesday we rushed off to Mesa to see our neurosurgeon, Dr. Moss.  He reviewed Ramya's CT scan and shunt series.  He's stumped as to what kind of shunt she has and why they put it in how they did, but the good news is, it's working!  He has no plans to touch it since it's working, and that is exactly what I wanted to hear!

Today we went down to Ron at Hanger and he got her all set up for KAFOs (leg braces that go from the ankle to the thighs).  He said he'll have them ready in about 3 weeks, so that's awesome!  We can't wait!  Ramya did great during the appointment and was very excited to pick the purple butterfly print for her new braces.  We set up an appointment to get her braces and get Madi's fixed (she grew again and needs them adjusted) in 3 weeks.  Ron and his office assistant were very excited to meet Ramya.  They have been waiting for her!

 
 
Tomorrow we are off to the pediatrician to have a little lump on Ramya's left "nee nee" looked at.  It just popped up and it's bothering her, so I wanted to get her in ASAP.  It feels like my cyst does, and I've never felt something like that on a child before, so we're off in search of some answers.
 
Saturday is our big open house to celebrate Ramya and so that all of our friends and family can come and meet her and spend time with us.  We are busy getting ready and can't wait!  We hope to see you all there (well, those of you that live locally that is ;))!  If you need our address, please email me at jamie_lugo@hotmail.com :).
 
OH!  Before I forget, I got my first kiss today!  She planted a big one right on my nose!  I give her kisses all the time, but I haven't gotten a spontaneous kiss from her until today.  Now I officially have gotten a hug, a kiss, and told "I love you".  Life is good!
 

 

Friday, April 12, 2013

Easter in Our Neck of the Woods

The kiddos had a fun Easter.  We were sad to miss Church on Good Friday, but didn't get out of the hospital from our ER visit until 5pm.  We were able to go to Church on Easter, though, and were thankful for that!  Ramya comes in service with us and is enjoying Church.  It is still a little over-stimulating for her, but it's getting better. 

We went to my parent's house to celebrate with my side of the family.  We ate lunch, looked for baskets, and had an egg hunt.  After that we went to David's brother sister-in-law's house for dinner and another hunt with his side of the family.  It was a lot for one day, but we had fun!  Here are some photos from our day...

 


 
Easter baskets from Grammy and Papa
 
 
Spiderman web fun

 

A little (slow) ride on the quad with Cousin Lauren

 
Daddy and his girls

 
Grammy, Papa, and the squirrels

 
Uncle Jimmy and Conner
 

 
The kiddos with Cousin Nathan and Cousin Caleb


 
Uncle Mark and Cousin Caleb

 
David insists on making odd faces....
 
 
 
Ramya loved her first Easter, and of course, loved the jelly beans!  It was so fun!
 
 

Thursday, April 11, 2013

Ramya's First Haircut!

Ramya's hair is starting to grow (YEAH!) and she is very excited!  In the past, her hair was shaved and kept short.  She is wanting to let her hair grow out and really wants to be able to wear ponytails.  I was wanting to keep it as long as I could for her, but was also wanting to touch it up a little to try and start to get it even. 

This was our first attempt at a ponytail.  She was really wanting one, and was so happy when I could give her one!




We were all due for cuts, so we headed down to my hairdresser, Ashley.  Ashley has been cutting my hair for probably around 10 years.  When Conner was a little guy, I tried to take him to a kids place to get his hair cut and he was not a happy boy, so we left.  He watched Ashley cut my hair, then he wanted her to cut his.  It worked out great, so we just stuck with it.  She's been the first one to cut all of my kiddo's hair, which is pretty cool :).  I had Ramya watch Madi get her hair cut first, and then it was her turn.  Oh boy was she excited!





 
 
She loves her new style, and it's very cute on her!  It's so fun watching her with all her new excitement and firsts :).
 
I wanted to share another sweet photo of Ramya.  She now asks to be rocked every night, to which I happily say yes to.  It's great for our bonding and attachment, but it's also just great therapy for her as well.  It's a win-win!  Here she is snug in my arms...
 
 
 
It doesn't get any  more perfect that that!

 

Friday, April 5, 2013

Home... Feels SO Good!!

We are home.

I feel like I could end the post there and it would be just perfect ;).

We were discharged at about 11:45 am, then met David, Conner, and Ramya downstairs for lunch in the cafeteria before heading over to Ramya's urodynamics testing and urologist appointment at 1:00.  The urodynamics test went well.  Ramya is able to hold more than we thought she could, though she leaks a lot still.  The doctor thinks her bladder size is decent, and it doesn't seem to be too spastic or rigid.  He's thinking the leaking might be due to poor muscle control.  He thinks if we bulk up the area (not with botox, but another substance I can't remember the name of right now, I think it starts with a 'd'), she may not leak and she also may not need augmentation surgery.  He wants us to come in for an out-patient exploratory surgery so he can see if this is the case.  He also wants to check her mitrofanoff and try to get that up and working.  I asked if he can clean up her granulation tissue as well during that time and he thinks he can.

I talked to Dr. Zuniga more about Madi's episode, and he is in agreeance with me.  It seems they get "lucky" and find bacteria to blame for the seizures, and just don't explore further, even though neither of us (though I'm not doctor so I know my opinion only matters so much to them) think that is what is causing them.  Because Madi is cathed, and because she has renal reflux, she is basically always colonizing bacteria.  You could culture her at any point in time and find bacteria.  If that was the cause of the seizures, that poor girl would constantly have them!  If she had a bad UTI she was symptomatic for, or if she had the underlying bacteria plus something else going on, then that would make more sense to me.  I'm praying that I'm wrong, though, and the antibiotics do the trick. 

After we got home we went to see The Croods and eat ice cream. We laughed a lot and it is just what we needed!!!  After we got home and got ready, all the kiddos piled on top of me to go to sleep, as they are all missing momma and more clingy.  I tried to sneak out of the room, but Madi woke up looking for me.  She's a lot more on guard right now and worked up because of what had happened. 

Heading to bed soon and praying for uneventful and restful sleep tonight!!!  I pray the same for all of you!

Thursday, April 4, 2013

An Update from Our Current Hospital Stay

As some of you know (from my Facebook posts), Madi and I are back at Phoenix Children's Hospital.  We are going on our second night here, though it looks like we will be sprung tomorrow... woooo hoooo!

 A view I'm thankful for, but could use a break from seeing ;)
 
 
 
On Wednesday we had a normal day.  Madi had a little dance recital and was glowing.  She did so great!  Conner had Karate and was given a red stripe on his white belt, and couldn't be more excited! We didn't know he was getting one and we are so proud of him!  Ramya had a good day and was enjoying watching Conner and Madi and being with family.  It was a wonderful day.... until dinner time came.  About half way through her dinner, Madi stopped eating and started looking a little ashen.  She started throwing up and told me her stomach hurt.  Madi throws up during eating fairly often, so it was nothing new to us.  She and Ramya were fighting over a little plastic bird earlier that evening, and Madi was crying and upset that Ramya wouldn't give her the little bird, so I figured the crying upset her little tummy and that was why she was throwing up.  She stopped throwing up, but looked like she didn't feel well.  She was talking to me normally, responding normally, but just didn't look quite right.  She also didn't want her brownie, so that tells you something was very wrong ;).  She started throwing up again, and just kept going.  At first she didn't want out of her special tomato chair (she was sitting and eating next to me), but she kept throwing up, so I took her out, sat on the floor with her (so that if she threw up, we were still on the tile), and held her.  I started noticing she was spacing out and looking off to the right.  I told David something didn't look right and told him to get her rescue med.  He went to get it, and by the time he got back, the repetitive twitching had started.  I gave her one dose, and she started to come back a bit, but still wasn't looking quite right.  We called 911 to have them come evaluate her.  They came and asked a bunch of questions, started assessing her, and then the seizing started again.  They watched her for a bit and were trying to get an IV in (thank God they were able to get it in her little foot.  I'm so thankful she doesn't feel it there so it can't hurt her!!).  I asked if I should give another dose of the rescue meds and they said yes, so I gave another.  She seemed to come out of it a bit, but she had never seized twice in a row before, had never seized other than coming in or out of sleep before,  and she had never not responded to the first dose of rescue meds before, so we loaded up in the ambulance to bring her in and have her evaluated.  On the way to the hospital, she started seizing again.  They gave her verset in her IV, and shortly after, she was completely knocked out, but wasn't seizing anymore.  Because we had just checked her shunt on Friday, they didn't feel the need to do xrays and a CT scan again, but neurology wanted us to stay for another EEG and observation, so they admitted us.
 
 
 

The only thing they can see that may have caused Wednesday nights events is that Madi's urine sample from Friday had grown e-coli.  This isn't surprising at all, since Madi is cathed 4 times a day and always has some bacteria in her system and e-coli is the most common and least concerning.  She also has renal reflux, which compounds everything.  She is on a prophylactic antibiotic because of it as well, to try and keep UTIs away.  Usually, the urologist only worries if she is showing signs of a UTI.  Her urine is clear, though, she's not throwing up unless she's seizing, she's had no fevers, I haven't seen her dumping white blood cells, there is no smell to her urine, her appetite is good, and she has no symptoms of a UTI.  With the culture that grew, though, the numbers were higher than they like to see, even with it being unsymptomatic.  They decided to treat the bacteria/UTI because if it is causing her seizure threshold to lower, then it's absolutely worth treating.  I'm praying that is what was causing her body to go haywire and that, once treated, the seizures will stop.   I told the neurologist that Madi had never seized during the day like that before, and never not responded to her medication like that before, and basically he said seizures can change and it's not unusual for things like this to happen.

Madi just got her second dose of IV antibiotics.  They want to observe her through tonight, but think we will be able to go home tomorrow.  They are upping her doses of daily and rescue seizure meds in hopes that the higher dose will help keep the seizures away as well.  She was on a very conservative dose, and still has some more room to increase if we need.

Conner and Ramya both cried when Madi and I left via ambulance again.  I feel sad that I have to be away from them.  Between the India trip, the extra doctor's appointments, and the trip in last Friday, it's just been a lot for them and their little hearts.  When I was talking to Ramya on the phone last night, she told me she was sad and wanted me to rock her.  I made sure to tell her that daddy is really good at rocking too :).  Today she and Conner came down to visit.  The hospital is still on RSV restrictions, so they couldn't come up, but David and I switched spots so I could spend some time with them.  It seemed to help (well, that and a pack of Scooby Do fruit snacks too ;)). 

I'm exhausted from about 3 hours of sleep last night, and I'm feeling a little sad and nervous about what happened on Wednesday night.  I'm trying to dwell on the positive, though, so I thought I'd post some things I am thankful for.

1) I am thankful for family who comes to help out.  For my mom who helped with Conner and Madi today, and then came down to the hospital to visit with us.  Also, for my sister-in-law who came to visit and brought Madi a cute little green tu-tu and green and pink monster stuffed animal.

 
Rockin' her green tu-tu!

 
 
2) For therapy dogs...
 
 
 
3) For the view from our room...
 
 
 
4) For Child Life and their help keeping Madi entertained and happy
 
Playing Candy Land
 
 
 
5) For reasonably priced food at the hospital that tastes pretty good too.  Also, of course, for the Starbucks here in the hospital!!  I didn't eat anything or get coffee until about 2pm, when my mom came with my wallet, so that Starbucks was like mana from  Heaven right about then :).
 
6)  For amazing doctors that care about Madi and make sure to come check in with us, even when they don't "have to".
 




7) That the paramedics now know exactly where our house is and don't get lost any more ;).

8) For good friends who love us, pray for us, and even brighten our day with little gifts.

 
 
9) For facetime and Yahoo Instant Messenger, helping us feel more connected, even during our times away.
 


10) For my faith and hope in God, because no matter how hard things feel, I know everything will be ok.  I may feel like things are out of control, but I rest assured knowing that God is always in control.

 
 

Tomorrow Ramya has a urology appointment at 1:00 at PCH for a urodynamics test and an appointment with the urologist.  The hospital said they will most likely be able to get us out in time for her appointment, so the plan is for my mom to bring Ramya down and for Madi and I to go right over with her.  It will be another busy day, but then we will be home again as a family, and most of Ramya's initial tests and appointments will be behind us for the time being.  That is sweet music to this tired momma's ears!