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.

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!

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 ;).

Standing, here we come!!

Today was an appointment I am VERY excited about! Madi wants to be standing and upright so badly, but she just cannot make her little body do it. Because she does not have any movement below the hips, she is unable to support herself. Today we went in to get fitted for a parapodium, which is a device that will help her hold her body upright so that she can stand. She will also be able to move around with it. She won't be given a walker yet, since that would limit her ability to twist her body from side to side, but will be given a walking-stick type of device instead. Tami, her physical therapist, will work with me and teach me how to help her get around in it. Ron, from Hanger, is hand-making her parapodium for her. Don't ask me what it's going to cost because I don't even want to know ;). Tami and Ron talked so that he would know just how to design it. Unfortunately, it is not something Hanger normally makes, so he will have to order some supplies and we will not have the stander until right around Christmas time. I am so excited for her to finally get to be at her peer's level, though, and it is well worth the wait!!!. Watch out world, here comes Madi!!!

P.S. In case you are wondering about the photos... the first one is the mold they made of Madi's torso. I couldn't take a picture while they made it because I was helping to hold her and keep her happy. The second photo is of her getting measurements done.

It's been a rough week

This week has been a rough week with Madi. To start with, a few weeks ago my grandmother passed away and though we were expecting it, it's always hard to loose someone you love. Shortly after, an 'internet friend's' (someone I met on the internet) baby passed away. She was 9 days old and had spina bifida. She died during a routine surgery to insert a shunt. I met her mother when she contacted me through Madi's blog. She had a sister with spina bifida that died in her 30's after having a bladder-related surgery. The surgery went well but she got an infection that shut down her organs. Now, she was having a baby that would be born with spina bifida. She found my blog and contacted me to ask me some questions about what she should expect. She is a wonderful person and I enjoyed chatting with her as she waited for her angel to be born. This his pretty close to home and is pretty much my worst fear come true. Please keep her family in your prayers.

So at this point in time, I'm a bit emotional because of all of this, which is pretty unlike me (No, I'm not pregnant. If I am, we have a urologist to talk to....), which has not made this week any easier. The fact that this is a terribly busy week, with four doctor's appointments, three therapy sessions, practice for the women's tea at Church, a play, and the women's tea itself, hasn't helped much either.

On Monday we went to Saint Joseph's hospital for some routine tests for Madi. She needed a renal ultrasound and VCUG to see how her bladder and kidneys were functioning. I have been waiting for this VCUG for a long time. Madi has renal reflux where the urine travels back from her bladder in to her urethra on the left had side. It was never severe, only a level 2, and we were hopeful she would outgrow it. In fact, I have been praying very hard that she would. Along with the reflux comes an increased chance of urinary tract infections, and, because of that, they want kids on antibiotics as long as it is happening, and at least for the first year of life. Though I do believe antibiotics are necessary in some cases, I really did not want Madi on them for an entire year. After talking to a naturopathic doctor, we started her on D-Mannose with the hope that it would help. It did wonders...... until I forgot it on vacation and forgot to give it to her when we got back :(. Back to my story.... we went in for the VCUG and I was fully convinced that it would have resolved itself and would no longer be an issue. Unfortunately this was not the case. Not only does Madi still have the reflux, it's actually worse. Not good. To top it all off, her urine was cloudy when they cathed her and sure enough, she has a nasty UTI. It was in the beginning stages so she wasn't showing signs yet. Because of her decreased level of sensitivity she does not fully know something is wrong, which is a blessing and curse all in one. I am thankful it is not painful for her, but it's really hard when she cannot tell me something is wrong with her because she does not know herself. The urologist, Dr. Zuniga, is sending us for another test in a few weeks after her UTI clears up. This test should tell us if her bladder is spasming or not, as well as how much urine it can hold. Depending on the outcome of this test, we may have to start cathing her multiple times a day. To someone with a child who has spina bifida, I know this is no big surprise and no big deal, it is something you do on a daily basis. For me, though, it's heartbreaking. Since before Madi was born my biggest prayer has always been for her bladder to work well enough to not need to be cathed. It's not the cathing in itself but more what it means; more surgeries and more medications (I hoping to get in to a naturopathic urologist so we can bypass most or all of these). First they will want to put her on an antibiotic so she does not get an infection. Then comes the medication to try and increase the amount of urine her bladder will hold. After that we have the medication to keep her dry in between cathing. When she gets older, though, if she does not out grow the reflux, there is a surgery for that. If she does, but we are still cathing, there are surgery options so she can self-cath easier. The more surgeries she has, the more risk she is at for complications, which can always mean one day I do not get to bring my baby home with me. I know I may be jumping ahead of myself, since we do not yet know for sure if she will need to be cathed, but at this point it is a very, very good possibility.

I know that God is in control and I know that He has a plan. I know that I am so fortunate to have my angel here on earth with me. I know whatever is coming our way, we can handle, because He will not give us more than we can. I am trying so hard to remember that right now and not be discouraged. Please keep us all in your prayers, we would not be where we are without them!!


For anyone else who feels discouraged, this is one verse that I call to memory when times are rough:

Joshua 1:9
Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go."

Our Kiddos Need You!

This is for all of my fellow Arizonians :). There are rumors that they are considering further cutting back on services and funds at the Department of Developmental Disabilities (DDD)/ The Early Intervention Program (EI). The news of this saddens and infuriates me all at once. Many families cannot afford the therapies their children need without DDD coverage. This doesn't just effect families of children with a disability. This effects us all. Studies have shown that early intervention saves enormous amounts of money in the long run. Our children need help when they are most vulnerable and developing the fastest. Please take a minute to write a letter to our legislators, send an e-mail, or make a phone call. Let your voice be heard... our children are not numbers, they are people, and they are our future!



Here is the information I received on this matter:

Attention Parents, Consumers and Providers

As you may be aware, the Arizona Legislature is trying to establish a new budget. Unfortunately they are considering cutting the Division of Developmental Disabilities services. They are actually considering stopping all respite, habilitation and attendant care services. Senator John Nelson’s office on October 22nd informed agencies that the only way to save the program is to get as many people to email, write letters and call their Legislators to let them know that they will not get your vote if they cut the budget to the Division of Developmental Disabilities.

We all need your help! Every person makes a difference. Please email, write or call as many Legislators as possible. They are keeping count of how many responses they get. These people desperately need your help. I am asking everyone I know to please forward this request to everyone they know and ask them to keep passing it on. Each one matters.

Below are the addresses, phone numbers and emails of the state legislators in both the senate and the house. If you don’t know your district, you can call or go online to http://www.azleg.gov/MemberRoster to find your specific representative. You can notify anyone on the list, even if you are not in their district. They all represent Arizona.

Happy Birthday Miss Madi!

We cannot believe you are one year old today! Wow, has the time flown by. It has been a wonderful first year. We've had our challenges and setbacks, but none of those matter. We just wanted you to know that we are so thankful and blessed to have you in our lives. You are such a joy and inspiration. Your dedication and strength, even at a year old, is absolutely amazing! Papa is right, you will change the world! We all love you so much!