Don't you just love spending $700 on a test only to get the news you DON'T want to hear?

Today Madi had a urodinamics test at her urologist's office.  They were testing to see how much her bladder can hold, as well as if her bladder is spasmic of not.  Her bladder hasn't gotten worse at all, but it also hasn't gotten better.  Because she also has renal reflux, they are afraid that the spasmicy (I just made up that word) of her bladder will shoot the urine back up her urethras, making the reflux worse.  They don't want the urine to make it up to her kidneys, basically.  I already knew going in that they would tell us (well, me) that we (well, I) need to start cathing her daily.  Sure enough, I was right.  We/I need to start cathing Madi every 4 hours throughout the day.  Thankfully we do not have to cath her at night, which is awesome.  I am trying very hard to be positive and have a good outlook on all of this, though it's the one thing I have been praying so very hard to not have to do, so I am struggling a bit.  Thankfully I was expecting it.  I am also quite thankful I have a girl, not a boy, because I feel more comfortable doing it on her.  I learned how to cath before I left the office today and they put in with insurance to order supplies.  Now I need to see if there are natural versions of dithropan (a muscle relaxer that focuses primarily on the bladder) and the lube needed for cathing.  I know this is really no big deal, I just also know it can mean more surgeries down the line, which is why I have been so negative about it.  The important thing, though, is that we know what we need to do to keep her functioning well, and that is all that matters!


So now for some positive news.....  We still have not heard back about our house yet (I hope it's actually 'ours' soon!!), but did go look at it again.  It is such a beautiful and well-built home and we love it!  It's very open and has so many awesome things for Madi, like her own sink, a jack-and-jill bathroom, a pool with an extended beach entry, nice big wide hallways, etc.... Of course, Conner, David, and I love it too.  Both our relator and the other are hopeful that the bank will take our offer.  We are really praying that's the case!  We cannot give them more money for the home, so it would be just so awesome if this worked out.  We love this house and can live in it forever!  There are only 3 bedrooms, and we do want to adopt, but I love when kids share bedrooms, so I'm not worried about that.   Please be praying for good news there.


I also want to stop and say "thank you" to those of you who read our blog.  Knowing how much Madi is cared for and loved is amazing!  I know she does as well as she does because she has so many people who love her and pray for her.  Thank you for loving our little girl and for supporting her in her journey!

Welcome To Holland

This is a nice little story that I've heard a few times.  Just thought I'd pass it on in case someone out there can use the encouragement!

WELCOME TO HOLLAND by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Here's my own side note ;).  I don't feel pain from a loss of a dream, my dreams have just changed :)

Many updates from Madi's world...

First, of course, a few photos.  Madi is too adorable to not share!  Please excuse my typos also.  I do not have any word processing software and am unable to spell check.  Considering I have terrible spelling skills, I'm in trouble.....

Here is a photo of Madi in her new carrier.  I wanted something that would carry her up high, so she could see the world as I do.  I found a used Kelty Country (minus the sun shade, I need to see if I can find one used somewhere) at Hissyfits.  I had a credit there, and was very excited to get such a nice carrier for such a small amount of money.  Today we went on a walk and hiking and Madi loved it!  I am so excited!

Here is a photo of Madi at the park today.  We played while Conner went to his 'connecting letters' class at the community center.  Madi had so much fun going down the slide.  We are working on the sign "more" and she kept signing "more" slide!  She loved it!  She played in the dirt, too, and even ate a little (bleh).  A little girl told me she was the cutest baby at the park, and I have to agree!

So now for the fun stuff.....

Since Madi's UTI is gone, she is eating much better and is a much happier little gal.  She has always tollorated breastmilk well and I am so thankful I have it to give her!  I know it's saved us from being in the hospital due to dehidration many times.  When everything else comes up, that stuff just stays down, and I am so grateful for that!  Though she is still a little gal, she has gotten taller and a little heavier.  Even her hair is longer!  Today I was able to put her in 12 month shorts.  Yes, they were a little big, and yes, she had a big fluffy cloth diaper on, but they actually fit, which was very exciting! 

Madi goes in on Thursday for a urodinamics (sp?) test.  Basically they will test to see if her bladder is spasmic at all, how much liquid it holds, and how well she is draining.  The results of that test will help us know if we need to start cathing her or not.  It's so hard because it is imporant to fully empty her bladder, but at the same time, cathing can introduce bacteria.  Additionally, insurance companies do not agree that a new cath should be used every time, and trying to get them to pay is a struggle.  I am praying we will not have to start cathing, as it's not too pleasant.  Please keep us in your prayers.

Madi's stander/parapodium is almost finished.  We have an appointment February 17th to pick it up.  There is also some good news there.  Since Hangar is contracted with United Heath Care, we get a discount.  That makes her stander $1,800 instead of the $2,500 deductible.  Also, that money will go toward her deductible for the year.  Though it is still much more than we planned on spending, it's a nice break!  Madi got a surprise gift in the mail from a close and much loved relative.  It will help pay for a decent portion of Madi's stander and we are so very grateful for the assistance and love they continue to show our little gal!  I have always said whoever says it takes a village to raise a child must have had a child with special needs.  Madi's physical therapist told us we need to start saving for a wheel chair (an electric one).  I asked what I should plan on and she said.... $25,000!!!  Yikes!  That's double what our car cost!  I guess it's time to start saving!

We put ourselves on a very strict budget, moved some things around, and now have a plan on how to pay for Madi's medical expenses and still have a house.  The plan only works for a year, but knowing we will be ok for a year has really taken a lot of stress off of us!  We are doing the Dave Ramsey envelope system for budgeting.  We are cutting out anything extra, such as cable, and living at a bare minimum.  We did plan for one vacation a year, though we will use that money for other things if need be.  We are also dropping Madi's developmental specialist.  We are keeping physical therapy and occupational therapy, but we work with Madi so much, we feel we can drop her DSI without taking away from what she needs. We still haven't heard back about the house but were told that we should be hearing from the bank within the next few days.  We've heard this many times, so I'm not holding my breath, but I am hoping this time it's the truth!  The other couple dropped out, so we are the only offer on the house right now.  The relator wanted to know if she needed to take a backup offer, but we assured her that as long as they do not ask for more money, we absolutely want it!  I cannot wait to have a home again!  At this point, I'd take a cave just to have something to call my own ;).  Ok, maybe not, but I REALLY want my own place again!

Thank you to everyone who bookmarked  and/or shared Madi's Amazon.com link and made their Amazon purchases through it.  We already earned $16.50!  I think we will get Madi a neuromuscular stimulator (this is a little different than a tens unit) first.  We can use it to help Madi learn how to move her legs to 'walk' in her stander.  It also helps awaken the muscles and nerves in her legs.  Her physical therapist, Tami, has been using one on her when she comes weekly and feels she would benefit from having one at home to use with her daily.  For anyone who lost the link, you can follow any amazon link placed on her blog or go to http://www.amazon.com/?_encoding=UTF8&tag=missmadi-20 .  Thank you so much!!

I will leave you with this very inspirational story tonight.  As you may know, Rachel Coleman, co-producer of the Signing Times series, has a daughter with spina bifida and ceribal palsy.  I ran across this article of her carrying her 9-year-old daughter in a custom made babyhawk carrier.  As you all know, I am quite the fan of baby-wearing, and plan on wearing Madi as long as I physically can, so that she can see the world as I do.  It was so awesome to see her doing exactly what I want to.  I now have some ideas on how to make one of my personal goals for myself and Madi a reality.  When you get a second, you should read this article about it http://www.athleta.net/chi/featured-athletes/rachel-coleman/ . 

That's all for tonight!  I hope everyone has a blessed week with their loved ones!

Today we FINALLY heard back from the doctor

The initial sample they took in the office showed a small amount of blood in the urine and bacteria.  They cultured her urine and............



The culture grew NOTHING!!!!!!!!!!!  No more bacteria, no blood in the urine, no hospital time!  I was so happy today I started crying, which, if you know me, you know that I very rarely cry.  I cannot tell you how thankful I am today.  This UTI has been around since the end of October, and it's finally gone.  God is so good!  Thank you all for your prayers, I really can't tell you how much they mean to us. 

No word from the doctor yet

I know a lot of you have been thinking about us and praying for and we really appreciate it.  We have not heard back from the doctor yet.  This does not surprise me, as culturing a urine sample can take up to 72 hours (or something like that).  It's very hard waiting and not knowing what is happening, but we're enjoying every minute of time we have together and are praying for the best while we wait.  Madi is happy and unaware of what is happening with her little body, which is hard but actually quite blessing in itself.  I will upload a few short videos of her from today.  They kind of stink because they are from my camera phone, but they are adorable none-the-less.  We are very blessed to have this amazing little girl in our lives!

Send your prayers our way today

Today we went in to take another urine sample.  Though the urine was clear, they found that there is still bacteria growing.  They also found traces of blood, though they said that could have been from the cathing.  We are waiting to hear back on what the culture shows and talk to the doctor.  This was not the results we were praying for.  We are hoping this doesn't mean hospital time, though there is a very good chance it does.  We will keep you updated when we find out more, but in the meantime, please keep us in your prayers.  Thank you!

Do You Shop at Amazon.com or Know Someone Who Does?

We officially have an Amazon.com affiliate account! Please click on the links on the sidebar of Madi's blog or use the link below to shop on Amazon and help Madi earn money for therapy equipment at the same time! She gets 4% of purchases, which we will use towards extra things Madi needs that insurance does not cover. We are really wanting to get Madi an indoor therapy swing (rainy day playground it is called) and are working toward that. We are also looking in to getting her a tens unit or something similar to help with muscle stimulation and strengthening the muscles in her legs. Thank you so much

http://www.amazon.com/?_encoding=UTF8&tag=missmadi-20