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Do you shop at Amazon.com or know someone who does? Click on the link below, or any Amazon link in this blog, to help us earn Amazon Credit in order to buy therapy equipment! Anything you order off Amazon counts! Please bookmark Madi, Ramya and Deena's link and pass it on... every order helps! http://www.amazon.com/?_encoding=UTF8&tag=missmadi-20

Tuesday, February 2, 2010

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!

3 comments:

Brooke said...

Good luck with the house, Jamie! You have a sweet family and Madi and Connor have the BEST parents any child could ask for.

Ciaran's parents, Jon & Wendy said...

Is Madi weak up top?? I don't understand why she would need an electric wheelchair??

Jamie said...

Nope, she's actually very strong up top! Our physical therapist wants her to be able to go off-roading (grass, gravel, etc....) and likes to get kiddos both. I didn't really question it, so I'm not sure! I'll have to ask her.