Our Big Announcements... Finally!

Sorry to keep you on the edge of your seats!!  Life has been crazy busy and I just haven't had the time to sit down and start this blog post yet!

I'll start with our first big announcement, and then I'll go back and explain why this announcement has all of a sudden become so important/urgent.



We bought a lot and are starting on plans to build a fully accessible house!

We are SO excited!

It has always been our dream to build a fully accessible house for our girls and it really seems like the time is right.  Our house is up quite a bit from where we bought it at, we have lots of equity in our house, my dad is a general contractor and wants to build the house for us, and David is (well, at least he was.... this last week has been pretty rough on him) doing amazing at work, so it just seems the time is now.

Our date nights have started to look like this....

 

 

 

 

.... and we have an architect working on our plans as we speak.  We are also working hard to get our house on the market so we can sell it and pull the equity out to help us with building.  Along with everything else we have going on, it feels a little crazy, but we are excited.

 

I'll jump back now and talk about our next announcement, and why this has become an urgency for us.

 

Back in May of 2013 I wrote this post about trying to adopt again.  We started our homestudies and started perusing our second India adoption to be able to adopt Ramya's friend, Deena****, from India, who has ostegenisis imperfect., aka brittle bone disease,  Then life fell apart.  David was struggling hugely at work, I was afraid he was going to lose his job (though he wasn't afraid he would), he was struggling emotionally more than I have ever seen him struggle before, and things just felt so yucky.  We were in survival mode.  We started counseling and began working through everything that was going on.  For his sanity, we decided to pause our adoption.  It was a terribly hard decision and I never had peace about it.   That is where a whole different huge story comes in, so bear with me....

 

In October or November, I honestly don't even remember now because it's such a blur, I broke down in our neighborhood church group and shared how I never had peace about pausing our adoption.  I shared that it just all felt so wrong and I felt we weren't trusting God that we would pull through our storm.  I cried and let it all out, which is something I reallllllly am not fond of doing, especially in public ;).  My friend asked what would need to happen for me to have peace, and I said Deena would need to have another family so it was very clear we were not meant to be her family.  Well, I go home that night, open up my computer, and read that Vathsalya, her orphanage, was closing and ALL of the children had found families.

 

Wow.  I didn't even know what to think.  I cried even more, thinking I was wrong the whole time and we were never meant to be her family.  I tried to get in touch with our adoption agency and they tried to get in touch with Vathsalya so we could figure out what was going on.  At that time, David and I also talked and prayed, then talked and prayed some more, and then decided that if she had not been adopted to another family yet, it was time to start our homestudies back up and try to adopt her again.  Long story short, about a month goes by and we finally hear back that she had not found a family yet and that we could still adopt her, but because they were closing the way we would have to go about it looked different and it was unclear as to how we could get her in the system so that WACAP could match us with her.  Our adoption counselor at WACAP was actually headed to India in December and said that she would talk to Mary Paul, the director of Vathsalya, herself and try to see what we needed to do to adopt her.  There's more long story, more back and forth, and finally in about February we still didn't have any clear answers.  We finally decided that the best thing we could do was finish our homestudies so that if/when India found out how we could adopt her, we would be ready.  It didn't take us much to finish them as we only had to meet with Oasis, our homestudy agency, one last time.  Then we waited for a bit to get all of our new letters of recommendations and things like that in and we waited as the report was written up.  When everything was finally ready it was submitted to the state of Arizona for approval. 

 

With of all of the back and forth with the adoption previously, as well as all of the unknowns, we didn't publically share that we were trying to start the adoption process again with very many people.  We just kind of kept it to ourselves, shared with family and close friends, and kept on chugging along to get approved. 

 

As of right now, our homestudy is still sitting on the desk of a judge somewhere, and we are still not approved.  Though it's hard to go back and announce it all again, especially because things are very unclear as to whether or not we will even be able to adopt Deena, we feel it's time to let people know because the fact is that we need prayer to get our paperwork moving again.  If we don't share, people don't know how to pray for us, and that doesn't do any good.  We know we need your prayers!

 

So back to the house....

 

We have a big beautiful house, but it only has 3 bedrooms and an office (but David works from home and needs the office to work from and I homeschool from the living room since I need a nook to homeschool from).  We cannot have bunk beds, since our girls cannot climb up the ladder, so we have to have a room that we can physically fit 3 girls and 3 beds in, as well as wheelchairs.  We also need a bathroom that can be accessible for the girls, but the bathroom in this house is very narrow and will not work well.  We prayed and told God we would step out in faith to adopt Deena, but that He was going to have to help us figure out where she would sleep, since we just physically don't have the room for one more bed (she will sleep in our room for a while, but to adopt you have to have a bed for the child in a room shared only by other siblings of the same gender).  Now that we are working towards adopting again, we were, once again, trying to figure out how to physically fit another bed in our house.  It became clear that it was just time to try and find a new house so that the girls would have the room they needed.  We also really want them to have an accessible bathroom so they have more freedom and independence.  We looked at multiple houses in many different price ranges and found that there was just nothing that was going to work for our unique situation, unless we poured a ton of money in to a house, which would end up costing us more than just building.  Finding a single-story house that can be made to fit 3 girls in wheelchairs is, well, a challenge we discovered.  That's when we decided to try and pursue building. 

 

So there you have it.... our two big announcements are that we are building and adopting, all at once, because we are just nuts like that.  Oh, and we will be looking for a new car soon too, because my mini van just won't fit 4 kids and 3 wheelchairs.  Life feels a bit crazy right now with all the changes we have coming up, but we do have a lot of peace about the direction we are headed and we know it is what we are meant to do, no matter how crazy it feels.  We would really appreciate your prayers through this whole process and appreciate each and every one of you!  Please also pray for Ramya and our family as we are going through some tough things with her right now and could really use your prayers.

 

 

 

 

 

 

 

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.

 

 

 

 

 

 

 

 

 

My boring but productive day, our little blessing, and a HUGE prayer request

First I want to start off with the prayer request.  If you pray, I need you on this!  Baby Evangeline was due to be born in a few days.  She has spina bifida.  Today, her mother was in a car accident that was caused by a drunk driver.  I am not sure how they are doing, and they need your prayers.  You can follow Evangeline's story on her mother's blog at http://mrskugler.blogspot.com/ .


Today I decided I needed to get some adoption paperwork out of the way and be productive.  It helps me feel like I'm "doing something" for the adoption.  In case you do not remember, our adoption agency sent us our dossier paperwork even though we aren't officially approved, since our approval in Arizona is taking so long.  Yesterday I sent away for certified copies of our birth certificates and pulled out the certified copy I have of our marriage certificate.  Today I decided I would tackle the bank, which ended up being a 1 1/2 hour trip.

India requires that you deposit $1,000 in to an account in the name of the child you are trying to adopt.  That poses an interesting problem, though, as you cannot open an account for someone that is not a US citizen, does not have a social security number, is not in your care, and has no last name.  They also want financial statements from your bank with all of your balances, your average yearly balance, and all of that converted to rupees.  Fun, fun!  I went to the bank today with the information on what we needed and prayed for the best.  The man who helped us was really a blessing.  He had two friends adopt internationally and knew pretty well all the hoops they had to jump through to be able to do so.  He was willing to jump through hoops to help us figure out how to handle the paperwork and account information we needed.  He was really amazing. 

He got us the information we needed, converted to rupees, and got it notarized for us.  Then he helped us tackle the account problem.  Basically we ended up opening a checking account (fee-free) in my name, with Rama as the secondary.  We used our last name as her last name and her estimated birth date for her birth date.  Then we filled out some paperwork that they use to get people accounts that do not have a social security number.  After that, he typed up a letter stating we had deposited the money in to an account for her and had that notarized as well.

The whole process took about 1 1/2 hours, which was not fun, especially with the kids in-tow, but I'm thankful to have it done.  The kids did really, really well, which was great.  One of the tellers gave them a sucker and later brought them crayons and coloring paper to help keep them busy.  I rewarded them with some sorbet at Yogurtology when we left because they did such a great job.   

We still have no news, but it did feel good to get some things out of the way.  I don't know what God has up his sleeve, and I realllly wish he'd let me peek, but I do find peace in knowing His plan is perfect.

OH!  I also wrote a letter to our senator today asking for help with getting our adoption approval pushed through.  Hey, can't hurt!

To all my prayer warriers.... send little Andrew all you've got!

Andrew is a very special little man, though he's not yet born.  He had in utero surgery for spina bifida and is doing great!  His feet are kicking, his legs are moving, and so far he has NO fluid on the brain... YEAH!!  They just learned, though, that his momma is leaking amniotic fluid.  She is 26 weeks along and praying to make it to 28.  Please read their story at http://andrewmichaeljourney.blogspot.com/ and keep them all in your prayers.  We all know the power of prayer!  Thank you!

Madi's Scar

Tonight I sat rubbing Madi's back as she settled down to sleep.  I was overwhelmed with the feeling of how lucky we are to have her in our lives; of how blessed I am to have her as my child.  When I got to the scar on her back, I could not help but think all that her it represents; the neural tube defect, the nerve damage, the hydrocephalus, the Chiari II malformation, the surgeries, the lack of function, the paralysis.  But at the same time, none of those things define who Madi is.  Madi is smart, funny, determined, loving, kind, curious, analytical, beautiful, a charmer, strong, compassionate, giving, and absolutely amazing.  It makes me sad when people stop and stare.  It makes me sad when they don't look at the person who she is, but instead look at the equipment that she uses.  The equipment is nothing.  Her equipment and her disability do not define her.  My prayer is that Madi will grow up strong and confident, showing the world that you are not your disability.  My prayer is that Madi redefines spina bifida, not only for herself, but for all those that come after her. 

An update from the Urology world

We saw Madi's urologist, Dr. Zuniga, on Wednesday at CRS.  He said everything looked good but the ultrasound was showing that one of her kidneys had shrunk.  She has a level 5 renal reflux on her left side, and that was the side showing a smaller kidney.  He said at this point he is not worried.  It is very rare to see a child that has not had any UTIs (she had one but that was over a year ago before the cathing) with kidney shrinkage.  He said most likely the difference is due to ultrasound tech error where one of the techs just measured wrong.  Either this tech measured it smaller than it is, or the last tech measured it larger than it really was.  He did say, though, that when we check it in 6 months, if it is still measuring smaller, we might want to try mixing dithropan with saline and injecting it straight into her bladder after cathing to see if we can help it grow normally.  I don't really like that idea, but we shall see.  He also said that the amount of liquid her bladder is holding isn't what it should be, but for her it is good and he is happy with the results.  The good news is he wants to wait before we do surgery.  He said that the standard protocol for renal reflux in kiddos with spina bifida used to be to correct the reflux, just as you wold with a kiddo without spina bifida.  He said the problem with that, though, is that you usually end up having another procedure down the line anyway (one to increase the size of the kidneys) and that surgery usually corrects the reflux anyway.  I love that he is a "wait and see" doctor, but that means we have to keep her on prophylactic antibiotics :(.  I HATE giving her antibiotics like that. I mean I seriously HATE it.  I feel terrible every time I give them to her.  I give her a very strong probiotic in the morning to help, but it does not make me feel much better.  I know they are needed because we have to protect her kidneys, but I worry about it all the time.  What if she ends up with pneumonia or something huge, and we cannot fight it because of an antibiotic resistance?  I know questioning the future and worrying about eveverything will not help, so I am choosing to remain positive and hope for the best.  She is in God's hands.  We would really appreciate your prayers, though!  Please pray that Madi's kidneys continue to grow.  Pray also that the reflux goes away on it's own.  Thanks so much!

Today is looking good!

(I have Madi in a big bed so we can snuggle and co-sleep :))

Our cultures are still negative, the cat-scan shows the shunt is in place correctly, and her fontinel is soft, so...

As long as Dr. Shaffron things everything looks good when he gets here to check her out, we get to go home today!!

We had a few clowns from the fiesta bowl visit us today.  The woman clown kind of lingered around a bit like she wanted to tell me something but was hesitant.  She finally got the courage to talk to me and told me not to worry, 2009 would be a great year for us.  I am praying that she is right!  Madi and I have spent over 50% of her life time in the hospital so far and I am ready to enjoy my beautiful baby in the comfort of my own home.  I am so thankful that we do not have any signs of infection.  God is good, all the time!

Well, here we are again

Just as I feared, we are back in the hospital. At some point, Madi's shunt had stopped functioning correctly.  It started about 4 or 5 days ago.  Madi wanted to eat constantly and would only take a small 45 minute nap before wanting to eat again.  Considering that she is exclusively breastfed, let's just say I was hurting a bit!  I took her in to the pediatrician who said it was most likely a growth spurt and not to worry.  I also called the neurosurgeon who said it was normal for babies to act like that after surgery because they are trying to heal, which takes a lot of calories.  She continued to want to eat constantly, but her fontinel (soft spot) felt great, she had no fever, and she was reletively happy so I continued to monitor her but thought everything was ok.  Last night I started noticing her fontinel felt firmer.  She slept well and still had a great appetite but throughout the course of the night it started feeling more and more full.  This morning I knew that something was off.  I tried to call her neurosurgeon but the office was closed for the holiday.  After that I called her pediatrician and left a message for the nurse on call.  The nurse talked to me, the doctor on call, and then instructed me to take Madi in to the Children's Hospital.  As soon as we got here we were brought back to a room in the ER.  They ordered a cat-scan and some x-rays but couldn't find anything wrong.  Next they decided to tap her shunt to see if she has an infection.  The initial gram stain came back negative but we have to wait 24 hours to make sure that nothing grows in the culture.  If it comes back that she has an infection they will take out her internal shunt, put in an external shunt, start antibiotics, and we will be here for another 2- 2 1/2 weeks.  If there is no infection then they will go in and see what is clogging up the shunt.  That would mean we are here for about two or three days.  Either way, Madi will need yet another surgery and goes NPO (nothing by mouth) at 4 am.  I am praying that her shunt is not infected again.  As of right now, Madi and I have spent 50% of her life in the hospital and it's just not much fun.  I know that God has a plan and there is a reason why we are here, but today is just a depressing day.  We should know more tomorrow and I will keep everyone updated.  We would greatly appreciate your prayers!

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!