Please keep Madi in your prayers....

Conner took this picture of Madi and I.  He's quite the little photographer!

I think I posted before that Madi's renal reflux went from a level 2 to a level 5.  That is pretty much the reason that we are cathing her now.  One reason for the change could be tethered cord, which is essentially where the nerves grow in to the scar tissue, causing problems as the child grows.  Here's a great explanation:

http://www.spineuniverse.com/conditions/spina-bifida/spina-bifida-tethered-spinal-cord

At birth, the spinal cord is normally located opposite the disc between the first and second lumbar vertebrae in the upper part of the lower back. In a baby with spina bifida, the spinal cord is still attached to the surrounding skin, preventing it from ascending normally, so the spinal cord is low-lying or tethered. Although the skin is separated and closed at birth, the spinal cord stays in the same location after the closure. As the child continues to grow, the spinal cord can become stretched, causing damage and interfering with the blood supply to the spinal cord. This can result in back pain, leg pain, changes in leg strength, progressive or repeated muscle contractions, orthopedic deformities of the legs and scoliosis, and bowel and bladder problems. A definitive diagnosis of a tethered spinal cord is made through diagnostic tests.

The shunt is checked through a computed tomography (CT or CAT scan) or magnetic resonance imaging (MRI). In some cases, the shunt is tapped to assess shunt function. If there is any question about shunt function, the neurosurgeon may explore or revise the shunt, before considering operating on the spinal cord.
If the shunt is working well, usually an MRI of the spine is done to exclude other problems. Additional studies such as a Manual Muscle Test (MMT) and special bladder studies (urodynamics) may be prescribed. These will be compared with prior studies to assess changes and to give a baseline against which to compare after the surgery. Untethering is generally performed only if there are clinical signs or symptoms of deterioration.


The surgery involves opening the scar from the prior closure down to the covering (dura) over the myelomeningocele. Sometimes a small portion of the bony vertebrae (the laminae) are removed to obtain better exposure or to decompress the spinal cord. The dura is then opened, and the spinal cord and myelomeningocele are gently dissected away from the scarred attachments to the surrounding dura. Once the myelomeningocele is freed from all its scarred attachments, the dura and the wound are closed.


The child usually can resume normal activities within a few weeks. Recovery of lost muscle and bladder function depends upon the degree and length of preoperative implications. The combined complication rate of this surgery is usually only 1 to 2 percent. Complications include infection, bleeding, damage to the spinal cord or myelomeningocele, which may result in decreased muscle strength or bladder or bowel function. Many children require only one untethering procedure. However, since symptoms of tethering can occur during periods of growth, 10 to 20 percent require repeated surgery.



Although having a tethered cord (Basically, all children who have Madi's form of SB do have tethered cord, it's just not always problematic) would give us answers to why her bladder problems are worsening, it's not a good answer, because it means a yucky surgery and hospital time.  Though I would love to know why her bladder condition is getting worse, I'd also hate to see her undergo yet ANOTHER surgery and more anesthesia, so I'd really hate for it to be tethered cord.  We go in for a full spinal MRI on Wednesday at 10:30.  Madi will go NPO earlier that morning and will have to be sedated (put under anesthesia) for the MRI because it is a long 45 minute one.  They will let me be in the room while she is put under, then again when she is woken up, but I will not be able to be in the MRI room (though I plan to try and push for it again) during the procedure.  I hate that they have to put her under for it.  When they are doing a 'big bang' MRI to check her shunt, they allow me to go in the MRI machine with her.  Because this one is so much longer, though, and they have to do anesthesia, that will not be a possibility.  I am really sad about that, but it is what it is.  We then have an appointment with Dr. Moss, her neurosurgeon, on the following Tuesday to discuss the results.  I need to call and see if we will be going straight to surgery that day if it is tethered, and if I need to pack and prepare for that, or if we schedule surgery, go home, and come back.  Please keep our little Madi in your prayers this week.  We will keep everyone updated.

What a wonderful day!

We started the day with letting Madi be "up" and playing.  She LOVED standing up with her brother and had so much fun!  Next I put her in our Little Partners Learning Tower, which I got the kids last year for Christmas.  I bought it for both kids, but was really hoping that we would be able to use it with Madi so she could be at counter-height and help mommy cook.  It works PERFECT and I couldn't be more excited!  Madi and Conner helped me make oatmeal cookies today.  Here are a bunch of adorable pictures for your viewing pleasure.

(Yes, that is a breastpump part.  The kids think it's the best toy ever)

A good view of how the stander works to hold her up

Playing with a cool toy

Cute shoes

Playing by mommy

So excited about cookies!

YUM!

And for our last good news of the night.... we got the house we wanted!  We found out at 8:30pm and I was so excited I actually teared up, which I NEVER do!  It takes a lot to make my cry!  I cannot wait to have our own home again.  Put March 26th on your calendars.  I'm sure we'll be hitting you up to help us move ;).  We have been really praying that if God wanted us in this house, everything would work out and they would not come back asking for more money (which we couldn't do anyway).  We really feel like God is giving us a tremendous blessing!  God is good, all the time!

Up, Up, and Away!

Today was a very big day for us!  Madi finally got her stander, after a very long wait.  She had it custom made by Ron at Hanger, who is amazing!  He doesn't measure and ship things off to be made like most people, but instead he actually custom forms and makes each item himself.  He has worked with tons of children with spina bifida and was the best man for the job.  It took a long time due to some miscommuncations and the fact that they do not normally make standers/parapodiums for kids, so all the parts had to be custom ordered and it was hand created.  It was well worth the wait, though!  Madi loves Ron and did quite well during her long appointment.  We were intially told the stander would cost $2,800.  Later they told us that because they were contracted with our insurance company, it would be $1,800.  When we showed up today, though, it was just under $1,400.  All of this, of course, is applied to our deductible through insurance, which is $2,500.  Though the $1,400 was much more than we origionally planned on spending, we would have had to eventually pay that much in the form of our deductible anyway.  It is worth every penny to see Madi standing up and smiling!  Tami, Madi's Physical Therapist, will start working with Madi on how to "walk" with the stander.  Basically she will teach her how to sway her hips and scoot around.  There are no wheels on the bottom, but it is smooth and will slide along an even surface.  I cannot believe how big she looks when she is standing up!  She is no longer my little baby, but a little girl (Well, she'll always be my baby, no matter what.  I always tell Conner that when he is 50, he will still be my baby and there is just nothing he can do about that :))!  We had a busy day today and are looking forward to spending more time in the stander tomorrow.  Watch out world, here comes Madi!

We found the Hugga-Bebe love!

Hugga-Bebe Infant Support Cushion

My local friend, Jessa, from the milk-mom's group of North Phoenix that I belong to (I know you are smirking right now, Eric, but I love having a group of moms that parent simliar to me.  It's nice not being the weird one in the group!)  told me about a wonderful invention... the Hugga-Bebe Infant Support Cushon.  It fits tiny little ones up to toddlers and has adjustable snaps at the base so you always get a good fit.  It goes around your child and helps support them so that they can sit straight.  It also helps keep them in place.  Madi loves going in her red car, as you see pictured above, but always slipped out.  We had to wrap a blanket around her so she could ride in it.  With this insert, though, she can sit up nice, straight, and stable.  I think we'll use it in restaurant high chairs, shopping carts (when she's not in a carrier), and the swings at the park too.  We can't use exasaucers anway, or it would work well in there too.  I am seriously in love with this thing!!!  Here's a link to it on Amazon.com... Hugga-Bebe Infant Support Cushion.

Speaking of Amazon.com, Madi had earned about $24 on there already!  I am looking for an intra-muscular stimulator (similar to a TENS unit but with different frequencies) and we're getting close to the amount we need!  WOO HOO!  David's parents are getting her an indoor swing and doorway swing frame, and I cannot wait to get that too!  Madi's going to be one happy girl!
 
 
Here is her Amazon link, for anyone who hasn't bookmarked it yet and would like to (or wants to pass it on ;))....  http://www.amazon.com/?_encoding=UTF8&tag=missmadi-20

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!