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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

Wednesday, January 27, 2010

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. 

Tuesday, January 26, 2010

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!









Monday, January 25, 2010

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!


Wednesday, January 20, 2010

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



Friday, January 15, 2010

Sometimes things seem overwhelming

(Please excuse my spelling errors and lack of capital 'i's. i am working on a computer with a broken keyboard. Madi gave my laptop a little shove off the counter and it no longer works)

As many of you know, we are trying to buy a new house. We found one that we both absolutley love, but the problem is that we want to be able to live without relying on David's bonuses. David's bonuses are based on his trading in the market. Some quarters can be amazing. Other quarters David goes in the negative, as do his bonuses. He's done great and God has really blessed us, but it is not income we can rely on. We thought we would be able to afford the house we put an offer on based on his base salaray, and last month, though it would have been tight, we could have done it. This month, things look very different. Right now we are really searching out what God wants us to do. There have been other houses we loved and every time, the door gets shut. We've been looking since May, living with my parents, and we are just very frustrated right now.

So what has happened in this past month to change our monthly expenses so much? The care we rely on for Madi is changing. To start with, Madi had AHCCCS (state healthcare) for one year, which has ended. They picked up what our insurance didn't, which was amazing considering our three big, and expensive, hospital stays. You do not get on AHCCCS for disability, only for financial need, which we do not have, so getting back on AHCCCS at this point is not possible, though if we pay out enough in medical expenses, it may be. Next up comes CRS (children's rehabilitative services). Because we are no longer on AHCCCS, we are no longer accepted at CRS, which means no more help with her many doctor's visits. And, lastly, comes DDD (Department of Developmental Disabilities). Since the state is broke and they do not know where to go for their money, they are switching to a sliding scale paymetn system, which means instead of picking up our $35 co-pays, three times a week for Madi's therapy sessions, they will pick up a portion of those and we will pay a portion (or all). Also, Tami, Madi's physical therapist, is out-of-network and is not paid for by insurance until we hit double our diductible, or $5,000, and DDD was paying for her to come until our insurance kicked in. Madi does not yet qualify for Arizona Long Term care as Spina Bifida is not a disability that automatically qualifies you, like autism and other disabilities do. She will eventually get in, unless it goes bankrupt like so many other programs, but it probably won't be for another few years.

So what does all this have to do with our house, you ask? We had already budgeted for our health insurance, which is $400 a month. We also budgeted for $35 co-pays for Conner's doctor visits and our doctor visits. We do not have dental or vision insurance, so that is also something we had budgeted for. We had not, though, budgeted $35 per therapy, three times a week ($105 a week total, $35 doctor co-pays every time we go in (some weeks we don't, some weeks we have 4 visits), money for AFO's, wheel chairs, prescriptions, walkers, standers, and all that other good stuff. Based on that, we need to budget in around $500 a month extra for medical expenses, plus have an emergency medical fund for hospital visits and equipment she will need, as well as money for making whatever house we get handicap accessable. That $500 is just bare bones medical, not including heatlth insurance. Realistically we'll be more around $600 a month. That, combined with what we pay for health insurance is, literally, a third of David's monthly pay.

Looking at all of this has made us realize a few things.

#1- We are very thankful for the assistance we were getting.

#2- We need to be very careful with our spending. We live pretty cheaply as it is, but we need to cut back more. We don't eat out often, i don't get my hair, nails, or toenails done, we don't go to the movies, we try to buy the kids clothes used, but we have this crazy Costco addiction ;). We have the Dave Ramsey system and are going to sit down this weekend and figure out a budget. We are going to stop using credit cards (we pay them off in full every month to get the cash back, but i know this causes us to overspend) also. We are going to an all (or mostly all) cash system so we can monitor our spending very carefully. We hope to be able to cut some corners and make it work so that we can get this house without relying on bonuses, but because of the additional $500 a month (roughly) we will need for medical, i am not sure this is possible.

#3- We are so very thankful God has blessed David with a good, stable job.

#4- it is very hard to raise a special needs child without government assistance, which is a fact that i absolutely despise. i do not want to NEED help raising my child. i don't want to have to rely the government for her care. i do not want other people getting to decide her quality of care or quality of life.

#5- We need to do some big time praying!

#6- We may need to find another, and cheaper house. One reason why we loved this house is because it is a custom home and, therefore, has wider hallways for Madi to navigate through. The kids bedrooms also have a jack-and-jill bathroom, which would be so very amazing for Madi to have. i would love for her to have a bathroom close and feel it will help make her much more independent, which, in turn, will boost her self-esteem. There is also a formal living room that i would be able to homeschool out of, as well as a den for David to work out of, as he works from home 4 days a week. So, while we may not NEED those things, they would make life so much easier. We are really bummed we may need to walk away from this one.


We are supposed to hear back about the house any day now, and really need to know what we are getting in to first. As i sit here typing this and look down at Madi's beautiful sleeping face, all i can think of is how much she is worth it all. God has always taken care of us and we know He is not going to stop now, but we need to make wise choices with the resources He has blessed us with. We are praying really hard right now for direction with where He wants us to go. Please pray for direction as we go through our budget and make these decisions.


Tuesday, January 5, 2010

What is the hidden cost of standing?



About $2,500, to be exact. I talked to Hangar again today about Madi's parapodium/stander. Because we are not on AHCCS or CRS, and it is getting run through insurance, we need to pay our deductible, which is $2,500. I asked what the cost of the parapodium is and they said right around that, so that's just how things have to be. Thankfully Madi has a fund of money set aside with about $3,000 in it, so though it will deplete that, we have the funds available, which is awesome!! We also have the money in our bank account, but if we use the money for that, we don't have the money we will need for the house we have an offer on, if we get it. I hate using her money, but that's what it is there for! Thankfully this one should last a few years, with a few minor adjustments as she grows. The cost of a stander? $2,500. Seeing Madi stand and walk like she so strongly desires to do? Priceless!

Monday, January 4, 2010

There always has to be a glitch...



(Sorry this is sideways. I took it with my phone and can't figure out how to edit it to turn it! GAH! It is mighty cute, though ;))


Today I called to check on Madi's stander and got some not-so-good news. The stander was finished, however, they were waiting on approval from CRS to be able to give it to me. CRS stands for Children's Rehabilitative Services, and it is the local clinic where all the doctors go to help children with special needs. It's like your one-stop-doctor-shop. They had already tried to get CRS's approval once and the stander was denied. They said this happens every time they try to approve something like this and that eventually they will accept it because they have to. So, because of some technicality, it sits there and we do not get to use it yet. Here's the kicker, though. We are self-pay through CRS because we are not on AHCCCS or Arizona Long-Term Care. All this means is we pay the discounted AHCCCS rate for our care instead of the standard rate. We still pay for all of her care, though. It goes to insurance first, then the rest comes to us. We also have our $35 co-pays (which let me tell you, those add up fast at 1-4 times a week, plus prescriptions and/or natural remedies), so it's not like this is coming to us free from CRS. That is not the case at all. The reason they deny it infuriates me in itself. It is assumed that Madi will need a wheel chair. It's cheaper, in the short-term, to stick madi in a chair than it is to give her the adaptive equipment to walk and the chair. In the long run, though, Madi walking will cost a substantial amount less. It is better for her muscles, circulation, self-esteem, cognitive development, etc..... to be standing. I think the hardest part of all is waiting while another person gets to decide my child's quality of life and what she "can" do. So, for now, we wait. I know it's all God's timing (but hurry up already!!) and will update you when it finally comes. Oh, and you may want to pray for a dash of patience for me ;).