A big day tomorrow

Tomorrow Madi has a urodynamics test and renal ultrasound scheduled (or maybe a VCUG, not a renal ultrasound; for some reason I just cannot remember!).  These are never fun tests because they require Madi to lay still for quite some time and they can be a bit uncomfortable, even with her reduced sensation.  Madi usually starts to cry before the procedure ever even begins.  Just looking at the tables she has to lay on brings tears.  I always bring snacks, toys, and books to try to distract her, but when your life is filled with appointments and those appointments are often not fun, you know what the real reason behind those distractions are.  You learn it pretty early on, sadly.  One of the hardest things about being a mom is knowing that those tests must endured, but wanting so badly not to have to see your child go through them.  On the other hand, I am so thankful that we have these tests.  It actually wasn't until more recently that I realized how serious urinary problems can be for kiddos and adults with spina bifida.  Madi, thankfully, is followed very closely and her urinary issues are under close scrutiny.  Urinary problems can be very, very serious, though.  Here is a bit of information on the topic:

After meningitis and hydrocephalus, renal failure is an important cause of chronic ill health or death. Early and accurate assessment of urinary tract function will, I hope, prevent later and intractable renal disease, which causes a high rate of morbidity and mortality. This problem must be considered almost as urgent as the associated neurological and orthopaedic problems of spina bifida. http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.1962.tb03173.x/abstract

and

Prognosis varies by the level of cord involvement and the number and severity of associated anomalies. Prognosis is worse for children with higher cord levels (eg, thoracic) or who have kyphosis, hydrocephalus, early hydronephrosis, and associated congenital anomalies. With proper care, however, most children do well. Loss of renal function and ventricular shunt complications are the usual causes of death in older children. http://www.merckmanuals.com/professional/sec19/ch292/ch292c.html

In light of that information, it almost feels silly to get frustrated and complain.  We have so much to be thankful for.  Madi is lucky enough to be born in a time where she can get the help she needs.  As much as I hate these appointments and as much as I hate having to cath Madi and what that means for her, it also means something amazing; Madi is here on earth with us and can live a long, healthy, and happy life.  These tests help her thrive and give her the chance at life that she deserves.  So, while I am not looking forward to tomorrow, I am looking forward, and I am so thankful these tests give me the chance to do so.

What's Up In Our World....

(Madi and grammy at my b-day party... Madi loves her grammy very much!)

Tomorrow Madi goes in for a urodinamics test to see how she's functioning with the new cathing routine.  I'll have to wake her up from her nap to make it, so that will be interesting!  The doctors was great, though, and approved a later time to allow her to sleep a little longer.  I think I'll bring some mini chocolate chips, aka, baby bribery, to help pass the time while she's laying on her back for the test.  Next week on Thursday, we take Madi to get fitted for her first wheelchair!!  How exciting!  Madi will be zooming around in no time!  I think Conner's going to have a little wheelchair envy going on too ;).  Tami, Madi's physical therapist, said that we will get to pick lots of fun options and colors for her chair, which is very cool.  We will also get a bath chair for her.  I always get in the bath with her, but sometimes holding her while washing her and Conner is a bit of a challenge!  This should allow me to be "hands free" when I need to be.  Madi will get a new walker too, which I'm excited about.  She is currently borrowing one from Tami, but will get to have one of her own.  The one we are ordering swivels, too, so it will make it easier for her to get around.  On November 11th, Madi's 2nd birthday, she will get a prescrption for either HKFO's (leg braces that go up through her hips) or RGO's (braces that include a cable to help her "pop" up her leg) so she can be even more mobile.  There are lots of exciting things headed our way, and we couldn't be happier!

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!