A few updates from us....

1- Poor Madi has a cough and cannot sleep laying down.  I must admit, though, I've enjoyed the extra cuddles!!  Here she is in our toddlerhawk.

2- Conner started swim lessons and loved his first one.  He loves the water!



3- Today we saw our orthopedic surgeon, Dr. Segal, at CRS.  He is a great doctor and we really like him.  He said everything looks good with Madi.  Her back is straight, her feet and legs look good, and her hips feel ok (though he thinks one might be dislocated), so she's still all set for walking.  I need to get her in for some adjustments to her HKFOs, but that's about it.  He wanted to take a video of her walking/jumping to show at the Spina Bifida conference that is in June in California, but she wasn't wanting to cooperate.  He is speaking there and was hoping to get some video.  Next year, I guess ;). 

4- I figured out something today with Madi's HKFOs and now I feel like a complete dooface.  I thought she couldn't sit in her carseat with her HKFOs on, which is a problem since she never wants to take them off, because she leans back too far in them and I didn't feel she was safe.  Well....... I realized today I need to unhook the elastic in the back, and then she CAN sit straight up in them, without undoing any of the straps or anything.  DUH!  I am SUCH a dork!  I have spent months trying to figure out why I couldn't get her in there, and it was SO simple! 

5- Apparently our adoption paperwork went from Oasis to Wacap, then back to Oasis, then back to Wacap, so it's still in lingo and has not made it to a judge yet.  Nancy, our social worker, is hoping to have it there this week.  Please pray we get a judge that finds us favorable to adopt, and that completes his or her paperwork quickly, so that we can get officially matched with one of the girls.  And, since we will be officially matched with one of the girls, PLEASE pray that God makes it VERY clear who we are to adopt.

What happens when Madi gets bored of walking?

Oh, nothing big, she just decides to start jumping!  Yup, you heard it, Madi's newest favorite activity is hopping around everywhere.  She's so fun to watch!  This girl has some crazy arm strength!!

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!

Spina Bifida Awareness Jewelry

I am very excited to share with you some beautiful pieces of jewelry, created by a very wonderful person, Gretchen of Simply Soares.  The proceeds of the sales go towards care for her son, as well as our adoption!  There are seven different styles to choose from, and she has bracelets, earrings, and necklaces.  Check it out!


http://simplysoarescreating4care.blogspot.com/2011/05/spina-bifida-awareness.html

P.S.  Did I mention that everything is hand-made?  It really is beautiful!

Therapy is a family affair...

I've posted in the past about how important I think it is for us to share therapy as a family.  To work together, to learn together, and to help each other out, because the difference for a child is not made during that one therapy session a week; it is what you do with your child every day that helps them the most (at least that is my biased opinion ;)).  Yes, therapy is extremely important, and we love our therapists to death, but the biggest difference we can make is working with our children every day and integrating what we learn in therapy into our daily lives.  Usually I talk about Madi's therapies, but today, you get to see a glimpse of Conner's therapy world. 

Conner started speech therapy about 10 months ago. At 3 years old, he was really only understandable to us and my mom and our pediatrician felt that that it was time to get some extra help.  We tried going through the district but we were not getting the support we needed.  I learned afterwards the district we live in is well known for that.  We tried for months to get him evaluated, and finally found an opening at Sunrise, which is the company Madi gets her occupational therapy through (though hers is in-home and Conner's therapy is at their center).  When he started, he was testing as having a moderately severe need, and is now down to moderate.  He tests again in a few weeks, and we are praying that he is able to test out because we have to pay out of pocket for his therapy, and well, at twice a week for 30 minutes, it adds up fast!!  His self-confidence has soared, though, and that is priceless.   

Madi comes to the majority of Conner's therapies and it has really helped her out as well.  She is talking more and more (actually, she never stops :)) and is getting more understandable every day.  It is really cute because Conner "teaches" her at home as well using strategies he learns in therapy.  He's a great big brother.  Miss Patti, Conner's teacher, always makes it Conner's choice if Madi is included or not.  She lets him choose if Madi gets to listen to his words with him, or play a game with him.  About 90% of the time, he chooses to share.  He is always taking care of his sissy!  Miss Patti is great with Conner and makes therapy fun for him.  Though I will not say he loves practicing his words at home, he is really starting to self-correct himself and is VERY proud of himself for catching and fixing his mistakes.  If I make a mistake, or at least he thinks I do, it gives him even more pleasure to catch mine.  Sometimes I mess up on purpose, just so he can correct me.  They say we learn best by teaching others, right??? 

Conner has come really far and I'm very proud of how hard he tries.  He's a very determined little boy, and pretty much everyone can understand now, which is huge!  He used to get very frustrated with people not understanding him, and though we taught him a lot of sign language, many people do not know sign language, so it was hard for him.  I could just see the disappointment in his eyes when he could not get his message across.  Now we get to see his excitement instead, and it is wonderful!

Why India?

First I'll start with a great quote I read yesterday on the blog Storing Up Treasures..

"There is an instinct in a woman to love most her own child - and an instinct to make any child who needs her love, her own." ~Robert Brault

I've been meaning to sit down and write this post for a while, but time just got away from me.  Boy isn't that the story of my life?!?!?! 

Why India?  It's a question we get a lot, but one we really don't mind.  It's a valid question for sure.  To be quite honest with you, we do not feel like we chose India, but more like India was chosen for us.  It was never something we officially sat down and thought through, it just happened.  We had been talking and praying about if we should adopt from the US or Internationally, and that we would know when the time was right, but we were really not sure how we felt.  There are SO many kiddos here in the US that need families, and of course, there is much more support and assistance if you adopt a child from the US, but we also knew kids were hurting and needing families worldwide.  Then we heard about Ramya and we just could not get her out of our minds.  The fact that she was sick simply because they did not have clean caths for her really spoke to us.  Yes, there are many, many, many kids here in the US that needed families, but those kids, at the very least, get adequate medical care, even if they never find a family (which is hearbreaking).  We felt we could do the most good by helping a child get the medical care they needed to survive.  That is not said to down-play in any way those who do choose to adopt from the US, as we feel that is completely amazing and important (and who knows, we may decide to do so as well some time in the future ;)).  We just personally felt convicted to adopt Internationally at this point in time.  And, of course, Ramya and Manasa are in India and we meet the qualifications for India, so things just seemed to line up for us there.  We are still fairly early in the adoption process, and honestly, anything could change at any time, but we do feel God brought us to India, or maybe India to us, and we feel strongly that is where we are supposed to be right now. So that's our story and we're sticking to it!

For those of you praying with us through our journey, please continue to pray that God will make it VERY clear which child we are to adopt.  Pray that He works out the details and that we get to bring our child home as quickly as possible.  Pray for the medical and emotional aspects of bringing a child home from an orphanage, and all that it will entail. 

Thank you for supporting us on our journey!

We are getting a makeover!

This blog started as a way to update friends and family on Madi's progress.  I was hoping that we would also help other families know that they are not alone and that we walk this journey together.  I, of course, also wanted to give hope to families new to spina bifida and parents who are just getting a diagnosis for their child and don't know what that will mean for them.  Now that we are working towards expanding our family, we felt a family blog would be more appropriate.  We are currently working towards changing http://www.missmadisjourney.com/ to http://www.aworthyjourney.com/.  We got a ton of great name suggestions, but this one just stuck :).  For now, you can type in either domain name and it will bring you to the same place.  It WILL NOT effect Madi's Amazon account, all of that information is still the same, so your purchases will continue to help her with all those fun extras that help her be just as amazing as she is.  That's all for now!  Thanks for checking in with us!

P.S.  Here is a link for Amazon.  You can open it and then bookmark it and every time you purchase anything through Amazon using that link, we get a percentage back.  THANK YOU SO MUCH!  Madi's Amazon Link

A walking update... there she goes!

I've been working on getting Madi in her walker to practice walking.  She is doing really well!  She is starting to "hop" too!  Yes, I am one proud momma for sure!  I am sorry for the crappy cell phone videos, but here she is!

P.S. Each video is different.

I'm baaaaaaack, with great news!

A little background on why I temporarily disappeared...

• My computer hard drive crashed.  When it crashed, I lost the work I was working on for Wacap... hours of work.  Oh joy.  I started over, and did finally finish, but it took me about 3 nights of staying up until about 12:30 am to get it done.  Of course, about half way through, David recovered the things off my hard drive (I love having a tech-savvy and totally sexy hubby!) but I had already re-done that part of the work anyway.  Oh well, such is life!  I am buying a used netbook to save money, but still have a computer to use.  Some people love netbooks, some hate them, but I think it will work just well for me.
• Our home computer got a virus and isn't working.  The only computer I had that did work was David's work computer, and I was super paranoid about getting a virus on that somehow, so I wouldn't check anything but facebook and my e-mail.  The computer still has a virus, but David is working on it.

A few days ago I checked craigslist for playgrounds, which I do every day or two.  On a whim, I searched for 'play set' instead of what I usually search, which is 'playground and play ground".  I came across a set that is made out of the nice Treks lumber, which is a lumber made out of recycled milk cartons and is very durable, can get wet, and stays cool to the touch.  I really wanted one of these sets, but a basic set with NO ramp was about $4,000, which was just too much to spend when it would still need to be modified and it was just very basic.  I went and looked at the set and the lay-out is perfect!!  It needs a new slide (the slide was cracked) and we will need to build a ramp, but the set was only $400 and in great condition!  WOW!  WE OFFICIALLY HAVE A PLAYGROUND!!  I've been singing from the roof tops.  It's been such a long time looking!  Before I show you pictures, here are things we need to do to it:

1. Buy and attach a new slide
2. Buy a new periscope and wheel, as those are too weathered to use
3. Buy another set of chains and a buoy ball/ trapeze bar combo set (Madi uses the trapeze bar in therapy) and move the other swings down so that we can fit 3 swings
4. Build and attach a ramp
5. Optional- I REALLY want to attach a little pull-down table for the play area underneath so the kids can have picnics and play down there, but Madi can be sitting down if she wants.
6. Optional- I'd love to build a little rock-climbing wall for Conner.  We have the rocks (they were donated and did not sell at the garage sale) so my dad would just need to help us build and attach it.
7. Get a new swing for Madi with a little support and one that she can't fall out of.
8. new update, forgot number 8~  It has all the attachments for a shade, so we just need to buy a new shade :)

But even with all of that, we will save a LOT of money!!  And for anyone looking to buy a semi-modified playground, cedarworks has the ability to customize a play set.  They are amazing to work with, and there is a lot of flexibility on ramps and stuff.  For example, you can have two separate deck heights and have slides on both deck, then ramps going to the decks.  The ramps are steeper ramps, but a child could probably crawl up them, especially to the lower level.  Ok, now for the pictures!

Watch for updated pictures of our project!  My dad is going out of town, then it's ramp building time!!

My Craft for Today

Madi has been wanting to practice walking with her forearm crutches, aka "walk-walk sticks" (she is still very wobbly and a long ways off from using them independently, but I'm always happy to help her practice :)).  They always have seemed so uncomfortable, though, because of the hard plastic that the arm cuff is made of.  I had some craft fir that did not sell at the garage sale that I had kept and I decided to try and make little covers for the arm cuff part, so that they will not dig in to Madi's soft skin.  Madi really likes the new cuff covers and calls them "kitty tails".  They seem to work pretty good!

Madi singing

Madi loves to sing and it is just too cute.  Here's a little clip of her singing "Twinkle Twinkle", hopefully you can hear it, she was being shy :)

P.S. Yes, she has David's sock on her hand, it's her new thing!

One step closer!

We are officially one step closer to being a family of five!

Friday we went to Tucson for our last homestudy.  It's now in God's hands, and will be in an Arizona Judge's hands shortly! 

We are nervous and excited all at the same time :).

This playground will be the death of me!

My dad came over tonight to measure out where the playground would go.  The one I like best with the best ramps would take up most of our grass area.  Sigh.  We have other options for the play area, but this is the most accessible for Madi.  The other play sets will fit in our backyard better, which is great, but will also make it to where Madi can only access the smaller portion of the play set and not the bigger area with the big slide.  I know for a while I can carry her up to the big slide, but I was really wanting her to have her independence.  GAH!  This playground will be the death of me, I swear!

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. 

Help me re-name our blog :)

I debated about if we should start a new blog for the adoption and our future child, or re-do Madi's blog include everything and have decided to keep it to one blog, but make it more of a family blog.  So.... help me re-name our blog!  I tried 'a family journey' but that domain name is take already, so help me think of some great ideas! 

One idea given to us was 'veprek trek' which is very star-trek-ish, so I'm sure my hubby will like it :).  Any other ideas?