Super Storm Sandy

We have managed to stay safe and the only aftermath of the storm we suffered was the fact that our power went out for quite some time. We are very thankful all we had to weather was wind, rain and a power outage. Knowing that there are millions of people out there right now without power, or even a home to go back to. 
I honestly don't think we'll ever forget this storm for as long as we live. The wind just howled like if we were close to Lake Erie, and our power went out due to a transformer blowing. 

Tonight we are getting ready to set out to our third trip to Cincinnati this year. We know that when we come back that Maggie maybe having to face another surgery to correct the problem we are having with her bladder and Mitrofanoff. 
Its hard going not knowing what the next step is  going to be. We have no idea if they want to up her medication more, or what her tests are going to show. All we know is that we're just not having any luck accessing her Mitrofanoff. I maybe get into it successfully once or twice a day, more so once a day than anything else. 

So we pray that we have a plan, that we'll know what is going on inside Maggie, and that we will even be able to continue to go to Cincinnati. 

As it stands now our fundraising is going very slowly. I will say that I'm not very good at this fundraising thing , nor am I a fan of having to do it. But as long as we don't meet our goal, I'll keep beating the drum until we do. 
I know I'm kind of out of ideas, and I wish I knew how to get this out more but we are honestly trying our very best with the situation that we have been given. 
We would love nothing more than to have Maggie be a healthy little girl. We'd love to have nothing more than just just deal with the normal kid ick, we'd love nothing more than not to have to travel anymore , we'd love nothing more than to not have to fight with insurance companies to be able to go where we need to go , and get what we need to get for Maggie.  We'd just love to live our life as a family for a while and not to have to worry about any of this at all. 

In the same breath, it is what it is. I need ideas, we need support. We need people to share this to the ends of the earth so we can one day say " We don't need this page anymore."  We need prayer too so that something good happens for Maggie. 

Until then, I'll beat our drum and ask for your help. Your help in donating as little or as much as you can. We are greatful for the help we have had from some that want to help us reach our goal. So that we don't have to worry about medical supplies that our insurance doesn't cover, and helping us to get to Cincinnati for Maggie's medical trips. 
Know that we are thankful for everything,  We covet your prayers as we walk the next step in Maggie's journey. 

Frustration

I was just thinking today about our trip to Cincinnati next week. When we go to Urology each time
we've had an appointment with them, they have us fill out a small questionnaire about things like, how do you feel your child is doing? How do you feel caring for your child?  Are you ready for changes that will affect your child's quality of life?  And the short list asks you to rate it on a scale  of 1 to 10, and asks about how you feel and so forth.
To be honest with you , my confidence has now shot to a year's low.  How do I feel caring for my child? Like a failure. I just feel like no matter what we do  its just not working.  Are you ready for changes? My answer is no. I just want this all to work itself out and I want to enjoy life a little bit.  How do I feel right now? Stressed, frustrated , and like I wish we never had the Mitrofanoff done (like we had another good option or something though).   Don't get me wrong , most children actually do well after having the Mitrofanoff surgery done. We were so confident that Maggie would do very well that we could have this done and leave it all behind us and we could go on and just enjoy life. Meaning no doctors visits for a while, no problems, no complications.  Actually only a small percentage go on to have problems after this surgery. So we had no idea we would be dealing with this at all.

We still spend more days not being able to access it because her bladder is still spasming. She's only had a few leaks but I'm not sure where its coming from, if its from below or from her supra pubic tube ( that leaks every now and then too).   Today I was only able to get in it once.  I wish there was a better option for Maggie.   Am I ready for changes? Not at all. I don't want Maggie to have to go through another surgery.  Not at all.


I'm tired of doing fundraising. I feel like we've used up our good graces with people and what happened for us last time , was a one time deal.  I hate having to do it at all just to travel . I wish it were cheaper to travel and trust me we try to do it as cheaply as we possibly can.

I'm sure some of my stress that I have I wouldn't have if we lived closer to Cincinnati, but we don't.  With having the issues we had just getting some one to change her supra pubic tube  here at home, it just leaves me feel so unsettled about having the issues we are having at the moment.

The amazing part of this is that Maggie is just , well, being Maggie. Totally unphased by it all ,which I wish I could feel like.I think that's the beautiful thing about how God made children. They totally trust us and don't let those things that grown ups stress about them bother them as much as they bother us. Though it does bother Maggie to some degree because she did tell me the other day " No more doctors ,mom, no more surgeries."  So she has her own way of telling me how she feels about it , but she can tell me and just go about her day like it was just part of a short conversation. Where grown ups tend to dwell on  it after its all said .

 Maybe one of these days I'll look back and think; what was I stressing about for? But it feels all very real right now. Its hard because I can't make it better for Maggie. Its not one of those things you can kiss like a boo boo and make it go away.

Big Victory

I can happily announce that we've won one fight , and that was getting back to Cincinnati.
Phew!
I am so happy you have no idea. Our urology nurse told us " See you in a few weeks."  

So we have to take the victories as they come and celebrate.  Though I will say insurance is NOT budging with the other medical equipment we need.
So , again , just getting to Cincinnati is a victory in itself.   Cincinnati is where we need to be with Maggie.

We are so thankful that we at least have this right now and we pray everything else will eventually work itself and come together.

Now with that said we have to focus on raising the money for our trip as its going to be longer than originally planned. Originally we were only going to have to stay for 3 days, but when we last talked with our urology nurse , she mentioned a cystoscopy in there. Sure enough a few days later when they send the itinerary we are going to be there until November 5th.  So we'll be in Cincinnati from October 31st to November 5th now.
So we have to focus on getting there and with everyone's kind donations this will help.  As this will be our third trip to Cincinnati this year, and we are most sure its not going to be the last one there yet either.

I know if I had a wish list , I would wish for :
Hotels to be free
Gas to be free

Medical equipment to be free
and food to be free.
And we would never have to ask another living soul for financial help ever again. Sadly that's not the case, our state doesn't pay for these things. I know some states do for those with special needs kids. We can get reimbursed,  but we get no where near what we pay into it back for gas or hotel , and you also need the money to spend to get it reimbursed   

Heck, I've even met well to do families that have to fund raise to get their children to Cincinnati ,or other hospitals for that fact. So we are definitely not at all the only ones that have to do this. Medical travel is not by any means cheap. Even when you get hospital discounts. Those days that you are there in a hotel add up fast, and if your a family with a special needs child and your reading this , you'll know EXACTLY what I'm talking about.

Know that all donations no matter how big or how small will always be appreciated. This all goes to Maggie's care and it helps lifts one of many burdens we have.

Thank you from the depths of our hearts

--- The Reed Family

Without You

I think this title sums it up as far as doing our fundraiser here.  We do plan on doing some other outside fundraising but for now we want to start online. I mean, why not?  Most people are online and its a great way to spread Maggie's fundraising page to others.

This page is a bit different than the go fund me, but I'll admit I like it more because I can type away and post more and not be limited by the number of words I can type. I can tell it like it is. I did like our Go Fund Me page but didn't like the fact they were taking about 9.1% of donations either. Not cool. Especially when ever last cent counts.

So your reading this page and your wondering what , YOU can do to help.  Its as easy as donating as little as $5 or as much as you find in your heart to donate.  YOU can help by sharing our pages on your facebook , twitter or any other social media group. YOU can easily help us with our fundraising by holding a small one of your own. I've seen people do bake sales, and yard sales, or make small items and sell them for others when they've been in need. WE can't do it alone , nor do we want to do it alone.  Its to much to do it alone. Anyone who thinks that fundraising is easy ought to try it themselves. Its not easy , not at all. Ask the people who run groups like the American Cancer Society, or for any other illness you can think of. It takes lots of time, and planning.  Time I don't have much of these days.

Not only am I a mom to a child with multiple medical problems , but I homeschool , I teach our kindergarden and 1st grade Religious Education class, and I also am a Girl Scout leader.  Doing all I do for the sake of my children, and for a sake of a little bit of normalcy away from medical stuff.

Know we aren't asking money to help us go to a trip to DisneyLand. Though that would be much more preferred at this point in our lives.  We are asking to help us with the high medical costs , the high cost of having to travel so Maggie can get the medical care she needs at the place she needs to be to get it (sadly we just don't have what we need here for her at home), and we can't do this without YOU.

With YOU we can make a difference. With  YOUR prayers we can achieve our goal for Maggie in being able to better her quality of life.  I pray that YOU will take a moment consider donating.  It just takes one moment to click the Chip In button on the right hand of your screen, and typing in whatever amount you wish to donate. Every little bit helps , and every little bit is always, always appreciated.


The Reed family wants to thank YOU for your help and may God bless YOU for taking the time to help.

God's timing is always perfect

I will say without a doubt that God's timing is perfect timing. Thankfully our urology department is working just as hard as we are at getting back to Cincinnati. I can truly, truly say that our doctors and nurses there at Cincinnati children's care about their patients and work very hard to help families so that children can get the care that they need.

Looking back on everything since this summer. Had we not had the surgery when we did , had it not happened until now. Maggie's surgery would have never of happened and I'm most sure we would have much more difficulty getting back into Cincinnati Children's then we have now.
Thankfully we have the fact that Maggie had her surgery and its only been such a short time since her surgery that it wouldn't even be wise to go ahead and even change to another doctor at this point. Especially more so that we are having the problems that we are having with her bladder spasming up on us and closing her Mitrofanoff valve.

We are truly thankful for God's timing. We really are because without Him nothing is possible.

So we ask you with all of our being to help us keep up with getting Maggie's supplies that our forced upon HMO no longer covers. We ask you to help us get back to Cincinnati.
We'd actually like to make this the last time that we would ever have to ask for money as we would like to within the year to move closer to Cincinnati so we could eliminate this problem of having to ask. We don't like doing it any more than the next person. We really don't.  Actually , in all reality I hate fundraising.  I will say if there is anyone out there who thinks fundraising is easy , or simple is just dead wrong. Fundraising is a LOT of work. Whether you do it online, holding it other places , or no matter how you do it. Not to mention the amount of time and work you spend on it , you also deal with a lot of very mean spirited people too. People who have no idea what you are going through always seem to have extremely mean things to say because their lives are so perfect in every way and they have all of the answers to everyone's problems.

I will tell you that we don't do this for fun, nor is it fun, nor is it a way to live for anyone, but in the same breath we have to do what we need to do in these tough times to make sure our daughter has the very best of care that she deserves to get.

So we would like to thank anyone and everyone who kindly donates for Maggie's medical supplies, and for our travels so that we can eventually move to Cincinnati and can at least rid of having to  do fundraisers like this from our life for a while.

So you wonder what your donations can help us with ?  I can give you a break down of it....

$5 a month could help us with buying alcohol wipes that we can purchase off of ebay.
$17 a month could help us get 4 nylon bard catheter plugs ( that seem to stay in her supra pubic tube better and don't pop out)
$20 a month  could help us get the BZK wipes that we really need each month for Maggie to wipe her Mitrofanoff stoma with to cut down on Urinary tract infections
$50 month  could get a box of feeding bags from ebay for Maggie's enemas
every few months we spend $45 on glycerine for her enemas , this gives us two gallons of glycerine.
We are also hoping to eventually get a special stroller style wheelchair  that she will fit in for our medical travels. Maggie gets tired easy and she is growing out of her baby stroller. Which is about a whopping $1500 dollars or so.  After all she is 6 yrs old. And its not cheap. We've tried many. many times to win one from the company itself so we wouldn't have to ask anyone at all for money for it and haven't won yet. Since Maggie can walk our insurance won't cover it anyways. So we're trying to raise funds for this.  It seems it never ever ends.
$245 would give us the gas we need for our van so we can travel to Cincinnati for Maggie at the end of October here.
$450 would be our week's stay at a hotel in Cincinnati ( as its EXTREMELY hard to get into the Ronald McDonald House there, its always at 100% capacity., and you have to wait for rooms there. and their short term stay rooms aren't always available when you need them too.)
$65 a day for food for breakfast , lunch and dinner , and we're not talking about eating out for all three meals ( can't do it , can't handle eating like that)


I could go on and on what a donation could help us with. Please know that Maggie isn't our only child. She is our youngest , and we were very blessed to have three healthy girls before her. Life was good for us and though I always admired those families that had special needs children( I knew they had things much harder than us regular people did ) never in our wildest dreams did we know that we would be blessed with a special needs child ourselves.

Please know when things get better, we'll be the first to post our happiness here , and to close it down. Until then we are asking for your help.  Help for a cute little 6 yr old girl . We appreciate prayers always, but sadly they don't pay the bills.

Know that ALL money goes to the care for Maggie only.

Insurance Blah

Ugh, I'll never understand why insurance companies have to make life so hard.  I'm sure there are many others out there who wonder the same exact thing too.

Today we had the 'pleasure' of finding out that one of the DME companies that was referred to us by UPMC was not a supplier of the things that we need. Instead was a pharmacy for respiratory and IV therapy.  Not very reassuring to us at all to be given such wrong information by our new forced upon insurance.

If you aren't up to date with that, while we were in Cincinnati we were thankfully covered for the most part with our state's Medicaid.  In Pennsylvania if you have a child born with medical problems albeit physical or mental your child is approved for PA Medicaid. Without it its near impossible to receive services for things like therapy, or medical supplies for example.
When we came back home two months later after Maggie's surgery that she had,, he had multiple procedures done at one time in an almost 11 hour surgery. She had her colon resected because we found when we went to Cincinnati that she had a double colon. She had her right kidney removed because by this time it had lost all of its function. As a matter of fact when her urologist came to speak with us they found the ureter was attached to her vagina, so it didn't have a chance from the get go. She had bladderneck reconstruction because again when they got in there they found that her bladderneck was weak and that's why she wasn't able to keep any urine in. They also needed to do a ureter reimplant on her left side, the good side, because she still had reflux on her left side. And they didn't want her to start refluxing back up after doing all this surgery to her.

 She also had two other procedures done to help with her quality of life too.  One was a Malone, they had to create a neo appendix ( we learned again during her surgery that she didn't have one ,, she was born without an appendix)  and they attatched this to her belly button so we could give her antegrade enemas through her belly button instead of the 'old fashioned" way through her rectum. And the other was a Mitrofanoff. We were originally doing self catherizing but were finding it wasn't going to work well for Maggie as she got older, not to mention with the bladderneck reconstruction she would need it anyways.

So as you can see, that's a LOT of surgery for a 6 yr old. Actually Maggie wasn't quite 6 yet at the time it was done.  We spent a total of 23 days in the hospital the first time because she developed a bowel leak, a small one, but one none the less.  And after her second surgery , her decannulation, we spent a week in the hospital due to the fact she started up with her very first UTI.  I will say I give Cincinnati all the credit when she did get sick because they looked over everything , up and down, and inside out to make sure that nothing else was going on.

After we were able to get through that we were able to come home. Once we did we quickly found out that PA was getting rid of their Access program, the very program that was able to get us to Cincinnati, and had to quickly chose an HMO, that wasn't going to be covered through Cincinnati.  As it stands I don't know who's to blame, Republicans or Democrats for this medical change. What I do know is that this is going to be a tough battle.

We are hoping through the generosity of strangers that you can find it in your heart to help us with the costs of  Maggie's day to day living. She requires equipment that we now have to pay out of pocket for because the  HMO doesn't cover it. We still have to travel to Cincinnati and thankfully through the grace of God , after our round and round with the HMO today our nurse from Cincinnati out of the blue called.  They are going to try everything humanly possible to get us back there.  So we have that on our side for now. We need to continue to pray that things will go the right direction with this.
With that said, we still have to travel to Cincinnati again, as Maggie's bladder is NOT responding the way we want it to since the surgery. Sadly, when we traveled back in August , Maggie's bladder shrunk and isn't holding as much as it did before surgery.  We've been trying to see with medication dosage changes to see if it would relax itself more and stretch out so that the valve in her Mitrofanoff (pronounced my-troff-fan-off) would quit closing up on us so we can catherize her through her stoma.  As it stands right now we aren't seeing any improvement and until we come up with a new plan she will have to continue to keep her supra pubic tube until we see what the next step is. So we are due to go back to Cincinnati October 31st, (yes, Halloween) , and will now be staying from the 1st-5th.  Today we were told that they want to do a cystoscopy and change out her supra pubic tube.

The costs of medical supplies, traveling and whatever else comes our way can be very draining especially financially.

If you look at the right side there is a ticker of sort on our page. Take a moment to click on it and donate as much as you can. If its $5 , $15 , $50 or $500  would be greatful.  Every little bit helps, especially in these tough times.  Know that every penny goes to Maggie's care.

A New Start

Hello and welcome to our new fundraising page. We had the Go Fund Me page and though we really liked the page , the website took quite a bit of money out per donation and we weren't really happy with that. We now have the Chip In widget so that all donations can go through Paypal and directly into our account rather then having almost 9.1% taken out of every donation and gone to a website. There may possibly be a fee if one uses a credit card but it will be no where near 9.1% that's for sure.
 This way all donations go straight to Maggie's care, medical supplies, and traveling expenses. Please know that all money goes for her care and none of it is ever used for personal use.
 I'll go ahead and post my update from Go Fund Me and sorry if it doesn't make a whole lot of sense. It will after a while.
I'm not fond of having to start over but we didn't learn about the Chip In until after we were more than half way over the fundraiser we had on Go Fund Me. So now is a new start and we hope that it will be a successful start.



Its been quite a while since I last updated. Maggie did really well with her surgeries in Cincinnati and we came home on July 8th. So we were gone for two months.
During that time Maggie had developed a bowel leak after having her bowel resection, and we were inpatient for 23 days. After that had resolved itself we stayed at the Ronald McDonald House for the duration of the times and went to our appointments.
Maggie did super well and had her decannulation on July 1st. She did great with that only to turn by evening and have her very first Urinary Tract Infection ( UTI). So instead of being inpatient for 24hrs we were in the hospital for a week and spent our 4th of July inpatient.
After we came home things went well for a little while and Maggie yet again developed another UTI. After she had this last UTI we've had problems ever since with catherizing her Mitrofanoff , We then went back to Cincinnati in August to find out that her bladder has shrunk and we've been trying very hard with medications to get her bladder to relax and stretch. Sadly, we aren't seeing any improvement and she still has her supra pubic tube in.
With this all said we are now having insurance problems as our state has now switched over to an HMO , and we are having yet again to go back to Cincinnati. We may in the following weeks open a fundraising page on another website as Go Fund Me seems to take a large amount of money out of our donations . So we don't get the whole amount that people send.
We are looking into maybe having to relocate closer to Cincinnati so Maggie can get the care she needs without having to constantly fight the insurance companies here eventually. For now we need help to continue to get the care we need for her as our HMO is not covering some of her supplies our last insurance paid for.  Please keep us in your prayers that God will show us the right thing to do, and that He provides a way for us so that we can continue to give Maggie the care she needs.