Seeing the Big Picture

The other day I was talking to my friend, Kyla, and something really stuck with me.  We were talking about how hard it was waiting for Ramya to come home.  Seeing her transfer to the third orphanage because our paperwork was taking too long, when there was nothing I could do to speed it up, was heartbreaking.  Every day spent waiting for her felt like years.  There wasn't a second in the day I didn't think about her.  At the time, I couldn't understand why things weren't moving faster and I doubted God's plan.  What I didn't realize at the time, however, was that if our adoption had moved faster and Ramya had not moved orphanages, I would have never met Deena and our family would not be complete.  Both girls are such a blessing and joy in our lives, and I can't imagine life without them.  The delays weren't fun, and it breaks my heart that Ramya had to be moved, yet again, but I'm so thankful that there was a purpose to our trials. I am so thankful that God perfectly orchestrated the timeline so that Deena could also become our daughter.

Passion

Lately I feel sort of blah, like I'm going through the motions, but like my life is lacking in passion.  My kids are well fed, but I don't enjoy the craft of creating the meals.  My home is clean, but cleaning it feels like a chore, not a privilege.  My prayers and devotions have felt "routine" and lacking in zeal.  I love my family, my life, those every-day mundane things we do and call life, but lately I just haven't felt that passion and joy that I normally do. 

Life has felt busy and rushed lately.  David is struggling at work.  Money is tight.  I've had doctors appointments for myself, on top of what I have for the kids.  Yet there is still just so much to rejoice in; so much to be thankful for.  Tonight I was reading a book I really like called Desperate: Hope for the Mom Who Needs to Breathe and the words on the page really spoke to me, as they often do when I am reading this book.  I rarely cry, yet I found myself brought to tears, because it spoke so well to exactly how I am feeling.  I thought I would share those words with you, in case any of you are feeling how I am.

 

"God lives in my home, but sometimes I ignore Him and don't hear the music He is playing just for me.  This journey of mothering is a challenging marathon of moments, hours, days, months, and decades.  And yet, in each moment, God has sprinkled across our paths beauty, love, and joy.  We have only to cultivate eyes in our hearts to observe this Artist's work of life...  All of these moments and passages have the mystery and grace of God in them, just waiting to be unpackaged as evidence of His love."

 

- Desperate: Hope for the Mom Who Needs to Breathe, pg. 160

 

 

I pray that God will help me to see the joy in all of those little tasks and duties that make up our life.  I pray that I will not only go through life, but that I will live it with purpose and with zeal.  I pray I find the beauty in the mundane and pray that I will be thankful for every little moment I have, no matter how small or insignificant it may seem.  Today I am praying that I live each day with purpose, joy, and passion.

 

 

 

 

 

 

 

 

 

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!

"I love you, Momma"

I've been waiting for those words.

 

"I love you, momma."

 

It's amazing how much good those four little words can do for a tired mommas heart!

 

 

I had been staying up late to get ready for a garage sale and keep the house tidy-ish.  I was tired, feeling sort of "bleh", and was trying to get ready and get my act together.  Ramya was in the room with me talking and playing while I got ready.  That's when I heard it...

 

"I love you momma."

 

Ramya usually repeats me when I tell her I love her ("I love you, Ramya." "I love you, momma.") but this was the first time she told me just out of the blue.

 

The next day, David got to hear those wonderful four little words too.

 

"I love you dadda."

 

 

Well we love you too, precous girl, and we have since the moment we saw your photo.  We have always known that God planned for you to be a part of our crazy family, and we are so thankful that you are!

He chose her for us

For those of you who follow our adoption journey, you know that our prayer has been for God to make it VERY clear who He wants us to adopt.  Every day, multiple times a day, I prayed that He would show us.... and He did...

... and it threw me in to a tizzy.  Yup, I prayed and prayed and prayed he would show us, and once He did, I freaked out.  That sounds just about right, right???

On Friday I got a call from Wacap.  It was a new lady that I had not talked to before and she had some questions about us adopting Ramya (the older of the two children).  I answered her questions and told her that I thought we were on the list for two girls, Manasa and Ramya, and gave her a bit of the back-story as to how we were on the list for both.  That's when she gave me some interesting news.  Wacap had sent all the paperwork to the orphanage on the families considering adopting children in their orphanage.  Apparently the orphanage director chose another family for Manasa, and chose us for Ramya. Just like that, the choice was made for us, and we did not even know!

Now, let me just say that we fully understand we do not have to choose to adopt Ramya.  We understand we could back out all together, that we could choose to wait for another child, that we have other options, and that there will always be children that need a family.  We do understand, but we are choosing to continue to try and adopt Ramya.

So with that said, I'll go back to why I freaked out.  Ramya sparked our interest in adoption, and back when she did, I really had a strong feeling she would be ours.  Then we thought she found another family, and I was thrown off.  After that Manasa came in to the picture.  Though Manasa (the younger of the two) made more logical sense, as she has less of a possibility of having major attachment disorders (RAD- Reactive Attachment Disorder), has less pressing physical needs, and is younger, I still felt my heart pulling me towards Ramya.  Even though I prayed God would make the choice, though, I guess I still thought it would be us to physically say which child we wanted to adopt.  I know it's silly since I got EXACTLY what I prayed for, but it just really threw me off! 

I have had this thought in my head that continues to pop up over and over... "God does not call us to make the easy choices."   I was actually going to write a whole blog post on it, and just never found the words I wanted to say.  David and I have been talking A LOT about the two girls and when we found out about the orphanage choosing Ramya for us (well, really, it was God ;)), we were both thrown off a bit, but also were/are both feeling that we want to continue to pursue Ramya (I anxiously await the day we are approved and I can call her my daughter!).

So there you have it.  The choice has been made.  We pray that the day will come quickly when we can bring Ramya home! 





Here's a book I am currently reading that I am liking so far.  It paints a very honest picture of the types of situations and things you may deal with when you adopt a child with a rough background, but also offers tips on how to work through these issues.

Well, we have an answer, sort of

On Friday I found out that the little girl we had completed a pre-adoption packet for will be placed with another family. They are actually working with two other families, and I'm not sure when/how they will decide who exactly gets to add her to their family. They are further along with their paperwork then us, and I knew that it would happen like this, but I'm still a little sad. When you see a little face as beautiful as hers and you start to think about what your life would be like with her in it, you start to bond with (even if it's just a one-sided bonding) and love that little child. Even though I knew this was a very real possibility, I am sad.  I just had this feeling she would be part of our family. I truly believed God placed her in our hearts for a reason, and that she would be ours.  I am so, so, so thankful that she is getting a home, one that she so greatly deserves. Please continue to pray for her and for her urinary issues as she is not out of the clear yet and adoptions from India take a loooooong tI'me to complete. Pray for her new family that they will be fully prepared to handle her issues and help her. Pray also that the families will be able to get the funding and things they need to bring her home.

In other news, they sent me the information on another little girl in India, one who is one year old, and have asked if we would be interested in adopting her. Oh my is she a cutie with huge brown eyes and beautiful long lashes. They say she has spina bifida and in some of her earlier pictures you can see a large lump on her back, however, I have never seen a lump like hers before. It doesn't look like what Madi had on her spine, and it looks more to the side then straight in the back.  It's very large, more like a baseball.  We are also not sure if it has been fixed yet or not. I have sent her files on to Madi's neurosurgeon, Dr. Moss, and her urologist, Dr. Zuniga, and am (I'm)patiently waiting for their reply. I need to compose a list of questions to ask the orphanage, so I can ask about her back and what has or has not been done with that. We also got information in the mail about what we need to do for our homestudy and the such. They sent me an application that I need to return with a $75 check. I checked our credit card (we pay it off in full every month as we are on the cash budget but use it for bills and gas and the such to get the cash back) and low and behold we had enough for $100 cash back, so there is the money for that! Yeah! We also should be getting a tax refund, so that will give us the $1,800 for the homestudy. Awesome!! David reminded me tonight that adopting a child will cost as much as a sports car, and I reminded him that a sports car only depreciates in value, but the value of a child is immeasurable :). He agreed. We will keep everyone updated on our newest venture, but for now, please be in prayer that God brings us a special little person to add to our lives and paves the way for us to get them here.

What a difference two years makes

When we were decorating the tree this year, I had to stop and pause when I put this ornament on the tree.

I remember getting this ornament two years ago.  I remember barely having time to even get the tree it would hang on, because we had been in the hospital with a shunt infection.  Madi was born on November 11, 2008.  Her first surgery to close her back and insert a shunt occurred in the evening of November 12th.  We were in Phoenix Children's Hospital five days then got released, much to everyones surprise.  Life back at home was a big adjustment, but life good.  It was better than good, it was amazing.  You really appreciate all the little things you don't have when you are staying in the hospital with a child; home cooked meals, your own bed, clean clothes, a toilet you do not have to leave the NICU to use, a shower that is not shared by every other parent that is staying with their child, getting to have your family together, the peace and quiet, not having to breastfeed your baby with an audience wearing latex-free gloves and poking you, and your privacy in general.  Little did we know what was brewing.  Madi's shunt had gotten infected during the surgery and we would be headed back.  This time it was just under 3 weeks.  I remember feeling so lonely and depressed.  The hospital room felt so empty and cold and I missed David and Conner (I wrote this post about it on December 5th, this on the 12th, this on the 21st, this on the 23rd, and finally this when we got the ok to go home).  I remember feeling bad for feeling bad, because so many other kiddos in the hospital were facing months of hospital time, not just weeks, and too many would never make it home.  I remember feeling torn because I knew I needed to be there with Madi, but missed Conner and David terribly.  My mom and mother-in-law were able to come and sit with Madi a bit so I could run home when needed or were able to bring Conner to me, but it just was not the same.  We got out on Christmas eve and got to spend Christmas with our family.  It was amazing.  Words cannot describe how wonderful it felt.  Who would have guessed that now, two years later, life would be so different.  Instead of feeling hopeless, I am overflowing with hope.  Madi is not just surviving, but is thriving and is defying the odds.  Though we had to go back again for shunt failure in a few weeks after her big stay, it has now been almost two years without shunt problems.  TWO YEARS!!  I want to sing it from the roof tops, I am so excited!  I am thankful for all that God has brought us through and I am so thankful for where we are at now.  Even when things feel hopeless, God is there.  He is always there, and he is always good. 

Who knew a Christmas tree box would do all this?

It has been really hard to get Madi to want to practice walking.  She was struggling with it and was giving up, not really trying because it was hard.  She just could not quite figure it out.  I think part of the problem was that she was still trying to shuffle, like she did in her stander.  We'd been practicing on and off, but not as much as we should have been, as I didn't want to push her.  Yesterday I decided to put her chair out of sight and just tell her it was time to work on walking.  She and I practiced quite a bit, and then she asked to get in the Christmas tree box.  Conner had been playing in it and she wanted a turn.  I put her in and noticed that she had an easier time with walking.  She was taking a few steps on her own, without any help/support.  It's kind of crazy too because I had been fighting and fighting to not get a fake tree.  Finally I gave in this year and we bought one from Michaels.  Who would have guessed that God would have a plan for that silly box?  I called Tami, her physical therapist, and told her about it so she could see her walk in it during her session today (I had to help in Conner's class so my mom was going to be here with her for therapy).  Tami worked with her again today in it and I came home to this....

I had been down the last few days because I felt like I was failing at helping her walk and I did not know what else to try.  Who would have known God would give us such a simple answer!  I am so very proud of my little girl.  It is like the light bulb finally went off for her, and now she understands how to move her body to make walking work.  She is such a smart little cookie!  Now we are faced with the task of trying to figure out how to make her something like the box out of PVC pipe, wood, hand railing, or something of the sort so that she can use it to practice once this box falls apart (which it is quickly doing).  With my dad's help, though, we'll figure it out.  Way to go Madi!

I am just so thankful

When I went to visit Erik, Michelle, and baby Dylan in the hospital, it reminded me once again how blessed we are. Madi, of course, has special needs that she will spend her entire life fighting through and overcoming. That's just the point, though, she has her entire life! We were so blessed to get to #1: carry our baby full term, #2: bring our baby home from the hospital, and #3: know that her challenges are not (usually) life threatening. There have been some scary moments but God has been with us every step of the way showing us that He is there with us and always will be. We have a beautiful little girl who is capable of lighting up an entire room with just one little smile. She is amazing and we get to hold her in our arms every single day. If that isn't an amazing blessing, I don't know what is!

Raising two special kids!

Last Saturday we went to the Raising Arizona Special Kids day at McCormick Ranch Park. We all really enjoyed ourselves and it was awesome to get a free day out to have some fun.  Being there just reiterated how blessed we are.  Compared to so many other Children, Madi's challenges (I always struggle with finding a word to put there.  I guess technically it's a disability, but that just sounds so inhibiting.  

On another note, Madi had a check-up with Doctor Moss at Phoenix Children's Hospital this week.  Her head measurements are coming back normal, her fontanel feels good, and her shunt appears to be working correctly.  We had a few really big bumps in the road in the beginning, but we are hoping to be past those now.  Dr. Moss said that once you have a shunt working well for about two years, you are good to go!  We are praying that this shunt is the one :).  Madi is continuing physical therapy with Gail at Aspire therapy and is doing well.  I am looking for an in-home physical therapist, though, and hope to have one soon.  We love gail, but the 40 minute drive, one way, to see her every week is getting old fast.  Research shows that children under 3 do best in their natural setting, so ideally, that's where we would like to be.  Madi also started receiving services from a developmental specialist.  She's getting a lot of help and is doing great!  She's a very happy, healthy, and strong little girl!  

I don't update about Conner much, since this blog was designed to keep people up to date on Madi, but he is doing very well also.  He is getting his last set of molars (for a while) which has made life interesting.  He was having a really hard time sleeping so our nautropathic doctor, Dr. Kail, at Arizona Advanced Medicine has us giving him small doses of melatonin and it's helping so much!  Hyland's Teething Tablets are a God-send too!  I'm in the process of making Conner a cape with Spiderman on it and he's thrilled!  He's a huge Spiderman fan!  Right now he's a fan of Spiderman, the letters 'o', 'a', and 'i', and the color blue.  He's a really smart kiddo and nothing gets passed him!  He is such a neat little boy and he makes life fun!

God blessed us with two beautiful, fun, amazing children and we are so thankful for that.  We truly are raising Arizona's special kids!

Back in the saddle, or is that hospital, again...

So here we are again.  Definitely not the place I wanted to be.  Madilynn's soft spot kept getting full and then empty, full an then empty again.  David and I were watching it closely and then today she started throwing up.  I brought her down to Phoenix Children's Hospital and though her car scan and x-rays look good, Dr. Moss tested the shunt externally and feels that it is not draining correctly and may be beginning to get clogged.  She has surgery scheduled for tomorrow morning to try and determine what the problem is and fix it.  She goes NPO (nothing by mouth) a 3 am this morning.  Right now it's 10:09 pm and they are trying (quite unsuccessfully) to start an IV for fluids and (starting tomorrow after the surgery) antibiotics.  We've been here since about 5 pm so it's been quite a day!  Please pray that they can quickly and efficiently solve her shunt problems and that they don't reintroduce infection.  Please be praying for Conner and his time away from mommy and for me as I am struggling with all of this a bit.  I know God has a reason for all of this, but I really wish I knew it!  The important thing is that Madi is happy, healthy, and safe, and sometimes it's hard to keep that in mind.  

We are going home!

We just talked to Dr. Shaffron and he is discharging us!  Yeah!  I cannot wait to get home to see Conner, shower, and eat some real food!  Being home again is always a bit tough.  Conner is not used to sharing time with Madi again, Madi is not used to Conner's noises, and everyone's routine is thrown out of whack.  It is very very worth it, though!  I am so thankful that it wasn't an infection and that our time here was brief.  God really took care of my little Madi!  She is feeling much better and did great with recovery.  Yeah!!

  

I've always known

People are always asking if I was surprised when I found out Madi had spina bifida.  Although I was a bit taken back, of course, I really think I've always known.  I have always felt led to adopt a child with special needs.  Whenever I would tell someone my plan, in the back of my head I would hear a voice saying "or maybe God will give you one of your own".  I always ignored the voice, assuming that my child would be born "perfect" (though both my children absolutely are!!) and that I would adopt, not have, the child that needed extra care.  I believe that was God's way of preparing me for the special child he was going to give us.  Now that Madi is here, I wouldn't want things any other way.  She is absolutely perfect and is exactly the person God wanted her to be!

She made it through surgery

Madi came back safely from surgery.  They took out her external shut and put in a new internal one.  She's now five weeks old and has had four shunts (her first one, two external ones, and the one she has in now).  She is in quite a bit of pain so they gave her morphine to help her feel better.  She's not very interested in food but is resting quietly on my chest.  I did try to breastfeed her and, when that did not work, tried giving her milk out of a syringe.  My biggest prayer was that she would come through the surgery safely.  Now that she has done that, I'm praying that her shunt will stay infection-free, will stay placed correctly, and will continue to function as it is supposed to.  I am so thankful that God has protected her.  We are hopeful that we will get to head home tomorrow.  I couldn't ask for a better Christmas gift!

God gave me butterflies...

I truly believe that God talks to us all the time if we just take the time to listen.  After I found out about Madi's diagnosis, I decided that I wasn't going to cry or be sad for her.  She was strong and God chose her for a reason, just as he chose me as her mother, David as her father, and Conner as her brother.  I knew that we could do this and our job wasn't to mourn, but to fight for her and give her the best life possible.  I knew it would all be ok, and God wanted to make sure that I knew He was beside us fighting for us, working out all the details, and paving the way for us.  I've always loved butterflies, which, of course, He knows.  From the day that I found out that Madi had spina bifida until the day that she was delivered, He sent me butterflies.  Every single day, no matter what the weather, I saw at least one butterfly.  They were my reminder that we could get through this and that everything would be ok.  Just as a butterfly, we would learn to adapt to change and life would be beautiful!