Wow, time surely is flying by for sure. It was last May that we were at Cincinnati Children's talking about surgery for Maggie.
Maggie is our youngest child. She is 5 years old and born with a condition called VACTERL Association.
VACTERL Association is not a disease, or a syndrome but a condition where the child is born with random birth defects. All children with VACTERL are born with different anomolies. They are all like snowflakes. Each one is so beautiful and so unique with what they have. We usually identify what our children were born with by the letters in the acroynm VACTERL. A child is diagnosed with VACTERL when everything else has been eliminated and they have three out of the 7 letters. Sometimes its also known as VATER Syndrome as well. Its much better to use the term VACTERL instead of my child was born with Vertebral, Anal, Cardiac, Tracheal, Esophageal, Renal(kidney), Limb.,
Instead I can say Maggie was born with VACTERL and was born with the letters V, A, C, R, and L. We, by the grace of God bypassed the Tracheal Esophageal part. Though Maggie does have a mild form of dysphagia ( so she chokes on things easily).
Our recent surgery coming up is going to be a BIG surgery. It will be several surgeries at once. By doing them at once it will cut down on the amount of anesthesia she'll be exposed to. Does it make me nervous they are going to do so much at one time? You betcha! My fear is if something goes awry we are going to be to busy trying to figure out what the heck is causing the problem. But in the same breath I have to put a little trust in Cincinnati because they do these types of surgeries quite a bit. Much more than most hospitals.
Anyways, this surgery will be the Malone (better way to do enemas ), Mitrofanoff(better way to catherize) , bladderneck with sling ( since she was born with stress incontience ), and her right kidney has to be removed due to the fact it lost its function by the time we actually made it to Cincinnati. It has started to grow cysts on it ,since it no longer function, and is now considered a source for infection and it recently has started to cause pain from time to time. So it needs to come out. The Malone surgery itself will be a bit more involved since she has her 'double colon'. She also has what is called a partial duplication of her colon. Meaning she has two colons. One intersects into the other. Making it like a two lane highway. So they will have to also divert the second colon into the one so that when we do her enemas that she will flush from one colon and not two ( like we are doing now).
So you see, it is very involved and will require more than one doctor to do it all.
In the meantime , since we are awaiting for our surgery date. We are doing some fundraising in the meantime. Traveling for medical care is not cheap at all. We are very fortunate that our insurance will cover the surgery. What insurance does not cover, is the hotel we'll have to stay at until we get accepted into the Ronald McDonald House(even then we'll still have to pay but just not so much money like we will when we stay at the hotel), it won't pay for food, while we wait for our stay at the Ronald McDonald House, and trust me, the Cincinnati Ronald McDonald House is the most POPULAR place in Cincinnati for medical families. They even built more housing but still , its not enough, and we'll be on a waiting list. Knowing that we'll be there in the late spring/early summer means an even MUCH longer wait. I know of families that have been to Cincinnati right now during the winter and it has taken at least 10 days for them to get in. I also know that we will have to go down at least three days or more before the surgery because Maggie has testing to do before her surgery and I requested that we do this all in one trip if possible. So that extends our stay in Cincinnati by three or four more days.
Our insurance does not pay for gas for our vehicle to go down, and to use while down there.
And it doesn't cover any supplies or medications we may need to get while down there. Our insurance is not covered in another state. We learned this when we went to bowel management a few years ago. If there is a specific medication they will want Maggie on in the meantime, or if we have to refill a med that we already have. Ohio pharmacies will NOT accept our PA insurance, none of the pharmacies accept it. We were put in that position while we were down there and we had to start catherizing Maggie and needed a med so that she wouldn't get a UTI. We were not able to get it, went to every pharmacy,even the hospital pharmacy and their pharmacies did not accept our insurance. I really do not want to be put in that position again should we need a very important medication or have to refill the medication that Maggie already takes on a daily basis.
So to sum it up this fundraiser is to cover:
1. Hotel lodging
2. Gas for our vehicle to get there (trust us when we say that its NOT cheap to fill up a minivan for a long trip)
3. Food, unfortunately God made us that we need to eat to survive. So its not an option to skip it to save on money.
4. For any new or extra medications or supplies we may need while we are down there. Sadly our insurance does not carry over for these two things while out of state.
On top we are looking to be gone at least 4 to 6 weeks. Maybe longer. It just depends on how well things go, how well things heal, and what the doctors think. It will all depend on Maggie. We look forward to things going smoothly, but in the same breath, will always prepare for the worst of things too. One never knows.
Currently we are running two fundraisers.... An Online Tupperware Party for those of you that are Tupperware fans. They have some great selections for the fundraiser. So feel free to jump on and purchase some of these awesome products. A portion of the proceeds go to helping us reach our goal for our fundraiser.
http://order.tupperware.com/pls/htprod_www/!tw$shop.p_category
OR if it takes you to the main page of the Tupperware website. Click Find fundraiser and type in :Tracy Reed
Our second is the Go Fund Me website. This page is set up for those who aren't interested in purchasing Tupperware, and would much rather just donate money.
You can click the big Maggie picture in this blog or the button on the side of our blog.
We always appreciate any help anyone can do or give. Even if you take your time to spread the word around about our fundraiser. Its definitely difficult to do it all yourself. Not by my own wants but because I have to. Please feel free to pass on the links to these fundraisers to your friends, families, local churches, community centers etc. If you would like to create a flyer please be sure to email me first at : reedfamilypa@yahoo.com for permission first.
So we thank anyone who will give of their time or money to help us reach our goal. Of course we'd like to superceed our goal. But to me the amount set is a good one to reach for now.
