Wednesday, December 12, 2012

Getting in the Christmas Spirit

I'll admit that its been very hard to do this year. Knowing that Maggie is going to need another surgery makes it really hard to concentrate on the fun in life. Christmas is always our favorite time of year. Not so much because of the presents , but of the giving. We love to give gifts to others when the opportunity arises. Sometimes we don't even wait until Christmas day to give.
Just last week we bought our Director of Religious Ed ( DRE) a great gift that I know will be so helpful to her for her teaching at the school, Religious Ed, and Kid's Club.
She absolutely loved it , along with it I gave her an awesome copy of Puppet Saints.  Its an ebook by a blog called Catholic Icing where you can print out little stencils to make Saint Puppets out of paper bags. My girls have loved it and we knew the kids at the school would love it too.    We're also going to start making soaps , handmade soaps to give and to eventually sell as well.  I think that too will be a great fundraiser to help defer the costs of this next trip to Cincinnati.  I love handmade soaps as they clean so much better and leave your skin feeling soft. But I'll leave that for another day to post on the blog here.

As for Christmas Maggie is super excited and she can't wait to see what Santa brings her this year.
She has been wondering each and every day and imagining what Santa will bring her. She even wonderfully crafted a Christmas list detailing what she would like. So we'll have to see what Santa brings this year. 

On the medical front things continue to be the same with her bladder. Many bladder spasms each day, thankfully they aren't causing her pain like they do for so many people that get them, or at least she's somehow not recognizing it as pain. Not being able to access her Mitrofanoff is a real pain and I find if we don't access it at least twice a day for some reason it feels like it swells inside. I'm not sure if I'm doing it when she's having a spasm and that's what I'm feeling but its strange. We do know with the last cystoscopy that the Mitrofanoff channel is good. So I'm thinking my theory maybe correct. 
For some time we were also having equipment failure and lots of urine leaking onto Maggie's bed. I'm not sure as to why but it was what it was and I think for now we're okay with her night drainage. Though we've had some strange instances of urine managing to go around her cap and leaking all over with her supra pubic tube. At first we thought that her cap had fallen out, or had gotten lose. Only to find this was not the case at all and with her leaking urine all over her pants. Not a fun thing to clean up, especially when we're out in public.  

We do continue to pray to God, and ask St. Margaret of Costello ( a Saint that, too ,was born with physical birth defects) for intercession on Maggie's behalf that a miracle take place, and her bladder will do what it is supposed to do so we can avoid this bladder augmentation surgery altogether. I know its a HUGE order to ask for, but we know that miracles do happen. 

As for now we'll continue to celebrate the Advent season the very best we can. 
Won't you consider donating this holiday season?  Each donation will be greatly used for our next trip to Cincinnati for Maggie's Bladder Augmentation surgery. 
Also for each $10 your name will be put in our television raffle for a 37 inch Vizio television set. 
We always thank you from the bottom of hearts and may God bless you this Christmas season. 

Tuesday, December 4, 2012

Raffle Issues

Hello everyone, so sorry for the confusion with the raffle. It seems that the icon for the Paypal seems to keep disappearing and I'm not sure why at all.  Can't seem to win with these websites that help with fundraising. Either they take out a crazy amount of money so you can use them , or the icons disappear. 

So to make this a little easier. I will go ahead and post our Paypal address and our snail mail address.  Please, if you chose to send your raffle ticket money snail mail to, please, not send cash in the envelopes. Reason being that this is Christmas time, so massive amount of mail is going through the system and can get lost or even stolen. So I ask if you want to send cash and not check to please get a money order and write it in Maggie's name ( Margaret Reed) 

Our Paypal Address: ( reedfamilypa@yahoo.com)  please specify how many tickets in the comment box.  Also if you send this as a gift we will get the whole amount and Paypal will not take a part of the money.  

Check or Money order :  Please make out to Margaret Reed 

Our home address:   Tracy and Tim Reed 
                                   4 E. Airport Rd apt B 
                                   Corry, PA 16407  
Please specify if you would like paper tickets sent to you otherwise we will write your name on paper and put it in our raffle.  Either way, you will know via internet who won. 

Tickets are  1 for $10.00 
                     2 for $15.00 
                      3 for $30.00 
and $10.00 each after that. 

Please remember this is a fundraiser , and that this money is going for our next trip to Cincinnati for Maggie's next surgery. It will be another 2 month stay so we will need about the same amount of money that we had the last time. Thank you for helping , May God Bless you many times over. 

Sunday, November 11, 2012

Our first fundraiser

Just wanted to post our first fundraiser to raise money for funds for our next surgery trip to Cincinnati. 
We will once again be gone for at least 2 months when Maggie has her surgery for her bladder augmentation. If you have not been following or are just now following, our daughter Maggie had major surgery on May 22nd of this year. This surgery compromised of having her right kidney removed, most of her colon removed, bladderneck reconstruction surgery, ureter reimplant, Mitrofanoff ( a stoma to catherize her for urine) and a Malone(a stoma for her enemas). 
This mega surgery lasted over 10 hours and we spent almost a total of a month inpatient due to complications that happened afterwards. 
Since then we have been to Cincinnati two more times ( so a total of 3 trips to Cincinnati this year alone) , and let me tell you , medical travel is not cheap no matter how cheap you try and travel.  The discounted hotel bill racks up as you wait to get in the already always 100% full Ronald McDonald House there.  Medications had to be bought, insurance doesn't cover them cross state, and the supplies we have to purchase because our insurance now does not cover for them. Food to eat ( even though we buy from the grocery stores but know that you can't make a meal in a hotel room), gas so we can make our trip ,  and any last minute things that need to be bought while there too.  

The last fundraiser we raised almost $5,000. It took a lot of hard work on our part but it was worth every second of it, and know that we needed every single penny of what we had. 

With that said knowing we'll be gone once again for about the same amount of time,  we need to raise as much or close to as much as we did the last time, and to plan for extra time should any complications occur again ( hoping not). 

So here is our first fundraiser.  A brand new 37 inch Vizio flat screen t.v.   Tickets are 1 for $10 or two for $15.  We need to sell at least 300 tickets to make this worth while and we won't raffle it off until we do sell that many tickets. So if it takes us a month to sell all 300 tickets we'll raffle it off then.  If it takes two months, three months, well I think you get the point.  So please feel free to share this with friends, family , your church, community etc.    

If your interested in purchasing tickets please email me at : reedfamilypa at yahoo dot com ( wrote this way to deter spamers).  

Monday, November 5, 2012

Oil change and tire rotation

Just kidding. Though it does feel like we do that from time to time with Maggie.

I can't get over how fast this week has flown by. Yesterday we packed our stuff and headed over to the Radisson because our time at the Ronald McDonald House was up. Being  at their short term stay rooms , you can only stay for up to a maxiumum of 4 days and since we would be here for 6 we needed to go elsewhere.

The Ronald McDonald House here in Cincinnati is a very popular place, and rightfully so. Its become our second home and each time we've stayed we've always made friends, and talk and meet with so many different families.




Maggie and Hannah made friends with a little girl named Megan who is 8 yrs old. She has ALL Lukemia and we pray that she will make it through her bone marrow transplant. I wished I would have gotten an email or a facebook page , but I was to busy feeling sick from having been up all night throwing up. I'm not sure if I got a tummy flu or if it was from something I ate. But thankfully I'm the only one who got sick. Its probably my body's way of saying "your stressed out."  The girls gave each other a hug and we wished them all the best and that we would pray for them.  With that said later on in the day Maggie started to cry and cry , and it was because she missed her friend Megan.  I felt so bad because I couldn't really comfort her like I wished I could because I was afraid of her catching what I had. But I did tell her that it was okay to miss her friend and that maybe her friend will be healed of her cancer and we can be happy for them.

Other than that we had to kill 5 hours in between our leaving from the RMH and our stay at the hotel. That was a long 5 hours because I felt so awful. I don't think it would have been so bad if I would have felt better. But all I wanted to do was lay in a bed and go to sleep.  Once it was 3 o'clock we checked in , came up , and Tim went to bring the stuff up and I was out like a light for about an hour.  I don't even remember falling asleep.  But at almost 10 pm at night now I'm starting to feel a little more human.

Today is Maggie's cystoscopy and SP tube change. So we head over to the hospital at 1 pm to have it done at 2:30.  Maggie has not been  a happy camper having to wait to eat. So she made a rule that if she can't eat, no one can right now.
  We'll see what Dr. DeFoor has to say after the scope and make our plans to once again come down to Cincinnati for next spring or so.  I will say that I do still need the time to digest all of it because I feel like we've had so many changes so fast.  Good and bad ones.





We want to once again thank everyone who has donated and who will donate to help us. We know now that we do have to come back again , and for another long stay and not so fun surgery. He hope and pray it makes a big difference. Know that you too can make a difference by donating to help us for this next comingn trip and for Maggie's medical supplies that her insurance does not cover. We can't thank everyone enough for the kindness.

Friday, November 2, 2012

The verdict


Well the verdict is in. More surgery for Maggie.
Her bladder pressures continue to increase about 50% each time we've come back, and Dr. DeFoor described it as a 'very angry 'bladder. Which I definitely could concur with. When she had her SP changed out it literally took me two days before I was able to access her bladder again to cath her.   Before surgery Maggie was at 220 and her urodynamics was beautiful. Then in August is went to 97, now she's at 89. So that definitely was not the trend we were looking for at all after her surgery. Even her bladder shape has changed from the nice rounded look of a healthy bladder to a more irregular shape.  There definitely was no way that they could of predicted any of that from a bladder that was doing well with just 5mg of Ditropan.  Maggie is on a whopping doses of 15mg of the XL and it hasn't really done what they were hoping it was going to do.

So Dr. DeFoor is going to lower her dose of Ditropan to 10mg since she's been overheating and flushing with the 15mg and since the 15mg isn't doing much they are just going to lower it so she isn't flushing as much. Then I just cath her once a day and let her urine out of her SP tube the rest of the time now. Not to much different than what we've been doing all along because most days I've only been able to access her bladder once or twice a day. But I won't have to worry about cathing the bladder. I can just let it out with her SP tube.  We also have to leave the Gentamicin in longer in the evening too.

Thankfully they won't have to redo anything , but they are going to have to do the bladder augmentation . This surgery requires taking a small piece of bowel and putting it on the top of the bladder ( after removing a piece of the original) and this will increase the volume. Are there risks and such? Yes. Am I worried about them? Yes. Because any time the doctors mention these possible roads you could do down , we seem to manage to go down those road. Things just as more UTI's (ugh) , very rarely cancer ( which Cincinnati has not seen this yet in any of their patients). or that ever infamous bowel leakage ( remember May??) or leakage of the bladder. Ugh.  Of course we want to think positive and say " This isn't going to happen to Maggie." BUT with that said , Maggie with throw out stuff that the doctors here haven't seen their other patients do. LOL

Even Dr. Alam poked in and said that at the time as well as her bladder was doing that they morally and ethically couldn't have done an Augment on her. But now is the time. With the pressures being as high as they are it is starting to cause some swelling in her left kidney ( the only kidney she has mind you).

Also we have to work on Maggie's weight gain. She has lost some weight and is beginning to plateau. She has gained in height but she has lost weight. Being at 37 lbs.  Its a struggle to get her to eat , drink. Period. It's been that way all her life.  But she needs to gain before this next surgery. So we were given some ideas from the nutritionist that came in to add calories. Wish us luck on that because in order gain or even get more calories. You have to actually eat the food. And Maggie is such a picky eater. she is actually a low cal food kind of gal, Everything she does like to eat is mostly low calorie. Even pizza. She peals off the cheese. Doesn't like milk or milkshakes. All I can say is ' this is going to be fun.'

So we knew we were headed towards this path. Of course we've always stayed positive and were hoping we were totally wrong and things would improve.  Am I crushed? Yes.  I don't want to go through another surgery. In the same breath its the nature of the VACTERL beast.  It just makes me sad and mad all at the same time. Knowing she has to go through this. That we have to be gone from our other three children once again and may possible end up missing our third daughter's First Communion in May.

Edited: They will be adding in Periactin to stimulate her appetite. If we have problems with it, or it doesn't help , then they will try Megace instead.


Tuesday, October 30, 2012

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. 

Sunday, October 21, 2012

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.