What it's all about

Prune belly syndrome occurs in about 1 out of 40,000-50,000 births. During fetal development there is usually a blockage that occurs in the bladder that causes fluid to build up in the abdomen and into the renal organs which causes damage to the bladder, ureters, and kidneys. Each case of prune belly syndrome varies in severity and in some cases can be lethal. It is said that 50% of prune belly babies die within a few weeks of birth and of the remaining 50% that survive 20% will die before the age of 2 the remaining 30% survive with varying degrees of damage to the renal organs. Most prune belly babies also have abnormalities with other organs and systems. The heart, lungs, and digestive system can all be affected by this birth defect. It is a very sad case with most prune belly patients making their way into the world, because the birth disorder is so rare and there is very little awareness or education provided to doctors about prune belly syndrome.
When I was pregnant with Miller he was actually misdiagnosed with a posterior urethral valve. At 20 weeks we had an ultrasound to determine the sex of our baby and to make the usual measurements. At this point they determined that Miller had a complete blockage in his bladder, the blockage was not allowing any urine to pass out of Miller's body and process through the amniotic fluid(baby urine is was makes up amniotic fluid and helps develop the fetal lungs) We were sent to see a fetal specialist who diagnosed Miller with the posterior urethral valve. When the doctor told us that there was a chance that Miller may not survive the pregnancy or may not survive his birth the news was devastating. We spent the next 17 weeks monitoring Miller's bladder and kidneys via ultrasound. With each appointment the doctor would note a new abnormality that wasn't in check with the original diagnosis. Prune belly syndrome is sometimes referred to as triad syndrome b/c there are three main abnormalities that are used to make a diagnosis. The first is the fluid built up in the abdomen that fluid prevents the abdominal muscles from forming and prevents the testes from descending. Miller had all three of those abnormalities present before birth but b/c prune belly is so rare our doctor missed the diagnosis. We had spent so much time researching the PUV we were not prepared for what was to come next. After Miller was born he was sent to the NICU for a few days before our pediatrician came to talk with us. He began to tell us that he was so unfamiliar with prune belly syndrome that he had to go back to his medical textbooks and do research to come up with a treatment plan. He then hit us with another blow, there was a 50% chance that Miller could have an intestinal malrotation. A malrotation is when the intestines are not connected to the abdominal wall and they can flip and twist causing a block which can be deadly if not caught in time. Miller was sent to have an upper GI done to determine the malrotation and the next day the radiologist confirmed that he found Miller had a malrotation. We were sent home for one night and then quickly sent to children's hospital in Atlanta expecting Miller to have his first surgery at 5 days old. The fantastic specialists at children's were able to determine that Miller did not have a malrotation and we were sent home! A week later our pediatrician informed us that Miller was also born with a hole in his heart and he needed to see a pediatric cardiologist as soon as possible. He was trying to soften the blow for us so he delayed this information until we returned from Atlanta. We saw the cardiologist the following week and found out that Miller would not need surgery to repair the hole in his heart. The hole was not large enough to need repair and it would eventually close on it's own. Miller does not have to return to the cardiologist until his first birthday! We returned to Atlanta 9 weeks later for Miller to have an MRI done to examine his kidneys and ureters. Miller was scheduled for his first surgery on September 10, 2008 and he had his second on December 3, 2008. Miller recovered from both surgeries like a champ. He will have a few radiology tests done in February 2009 and from there his doctors will decide what to do next. Miller has beat all the odds and proved that prune belly is not as fatal as some may say. There are some children with prune belly syndrome who are not as lucky as Miller is. Many children have to undergo dialysis and kidney transplants before the age of 3. There is no cure for this disorder and it is something Miller will live with for the rest of his life. He has a long road in front of him and we want to do all we can to help the people who helped us when we had no where to turn. We found a website called the prune belly syndrome network or http://www.prunebelly.org/. All the information on the web is very grim and leaves little hope for new parents with prune belly babies. When we found this website we were able to see that there were children, teenagers, and even adults living with this disorder. It was the best thing that happened to us after Miller was born and it helped get us through the rough stuff. This organization offers support to families across the country that suffer from this rare disorder and every year they hold a convention to bring in doctors and specialists who have studied and trained to help prune belly patients. For most it is a fantastic opportunity to speak to doctors who can offer advice that they had not been given elsewhere. This organization has been running off a small website for years and all the funding is provided by the members. The website fund is starting to deplete and soon it may be in danger of shutting down. There are so many families who need this site now and there will be many in the future. I have made it my personal mission to raise awareness while raising a few dollars along the way. I decided to do something that I don't really love to do in order to help my sweet baby Miller. I am pretty sure that Miller did not enjoy any medical procedure he has endured over this past year so I have to chosen to run a race for each and every procedure he has had done to him. I started counting and so far we are up to 12 but the list will continue to grow in the coming year. I have to map out a calender of races but with our recent relocation I am not really sure where I will be. I plan to start in March, as close to Miller's birthday as I can. I am looking for donations from anyone who would like to contribute to this awesome organization. There are families that need the prune belly syndrome network and we are one of them. Please help Miller and please help the prune belly syndrome network.
Thank you to all of our family and friends. You have helped us through a tough year and we love you all!

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Fundraising Results

Wednesday, June 17, 2009

it was just a normal day...


Just a day like any other day, got the kids up, fed them, got them dressed and out the door. At the end of the afternoon I am feeling tired, hot, and extremely frustrated with my crabby kids. As I get home I am exhausted and cannot wait to get the kids down for a nap so that I can sit down and catch up on some emails. I don't normally watch Oprah but for some reason today I thought why not? I have a few minutes to myself so I turned on the tv and started watching Oprah, today she was talking about extraordinary children who have beaten incredible odds, perfect for me right? Of course every story was amazing and hit my heart in a special way but the last story was one that really got to me. The story was of a family from Arkansas who had a baby named Elliot. At 30 weeks gestation Elliot was diagnosed with a chromosomal defect called trisomy 18. The family documented everything from that point on with pictures and journals. They were told that Elliot may not survive the pregnancy and mostly likely would die shortly after his birth. It is not my intention to blog about sad stories but I do have a point. As I watched this story I was reminded of Miller and how much of a miracle he really is. When the doctors found the defects in Miller's body we were told that Miller might have trisomy 18 and we were given terrible odds. Not accepting that fact that we might lose our baby Matt and I opted to have an amnio done to know for sure what we were up against. I guess I don't need to say that the results came back negative for trisomy 18 since we have little Miller here with us big prune belly and all. This story really just reminded me how close was came to losing him and precious his life really is. All babies and children are special and I really feel some are exceptional, Miller is exceptional. It makes me sad to think that I had to watch an Oprah show to remind me of that. As you can guess the family lost baby Elliot but what made Elliot exceptional was that he lived 99 wonderful days! He was a baby that was given the worst odds and he beat them for 99 days. It really was a great show and I hope someone else got to see it. Now I have to remember to not let the heat of the summer and my crabby kids make me forget how lucky I am to have two wonderful babies(except Madison is not a baby she is a big girl, she wanted me to say that).
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Monday, June 1, 2009

another one bites the dust...


One more race under my belt. I just came back from a long vacay in Florida during which I ran in the Gate to Gate race on Eglin AFB. It was a 4.4 mile race that ran through the base and past the flight line, very nice to see the sights of the base and unfortunately it was also not very shaded. The day was hotter than all get out and I seriously thought I was going to die! Someone thought it was a great idea to end the route with a little thing called heartbreak hill, I could have come up with a few other names for that thing... But I am happy to say that I finished in less than an hour, not fast by many people's standards but I was happy, we had a very delayed start time b/c there were almost 1800 runners and walkers, and I would like to say that I bought new shoes that week and used them for the race(very bad idea) my feet killed me for the last half of the race. I ended up chucking to shoes after I finished and proceeded to the after party barefoot. Lucky for me they had a kick butt after party including free massages, free beer, and free food! In the end I am so happy I did it and even happier that my Mom and big Sis did it with me.

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Tuesday, May 5, 2009

The Mad Dash




On Saturday we participated in an event called the Mellow Mushroom Mad dash. Let me just start by saying this was a 1K race which at the time seemed like a joke to me but I soon figured out that it was no joke. Madison really was upset that she didn't get to participate in our last race so I decided to run the 1K with sweet little Madison... About a tenth of a mile into the race she decided that she didn't know how to run! We had to finish the race, there was no turning back or giving up the course was filled with people cheering us on and we couldn't let them down. So I put Madison on my shoulders and proceeded to run the rest of the course with her perched up there like a little bird. As we neared the finish line I thought I was going to pass out! It was 4:45 in the afternoon and humid as all get out, HOT! Never mind the fact that I was running with a person on top of me I was also running up a hill in the heat, it sucked!!! So here we come up the hill and they have already lined up for the next race, they didn't even know we were still on the course until finally people started cheering for us and they let us finish. So you can imagine the sight of the two of us coming across the finish line, Madison all smiles and laughing, me about to pass out and sweating my you know what off, if you think that is funny now picture that they had the course showing on a jumbo screen to the entire festival!!!! I am so glad I did not have to see myself on that thing, I bet it got a few laughs though...
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Monday, April 27, 2009

we're on a roll

Now we're two races down! So I thought the first race was tough with the rain and being sick but I take that back. The race we did on Saturday was so hard! It didn't start until 9 am which made it very very hot and to top it off there were a lot of hills and they saved the shortest steepest hill till the end. The course went on forever and I really didn't think it was going to end, I really wanted to ask them to measure it again just to make sure they got the distance right. By the time I finished I swore I had been running for an hour, as it turns out I was only a minute slower than the last race which wasn't too bad considering all the hills and inclines. This weekend we are going to run the Mellow Mushroom mad dash, it sounds like a lot of fun and Madison gets to participate which she really enjoys so we are ALL looking forward to it.

On another note, the Prune Belly Syndrome convention is coming up in July, not sure if we are going to attend but we are still taking donations in hopes to reach our goal before the convention so we can help out the PBSN. The PBSN provides this 4 day convention free of charge to the network of PBS patients and they are in need of donations to help make this convention a sucess!
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Tuesday, April 7, 2009

WOW

I just updated our donation tracker and I cannot believe that we have almost hit $1000! We got a donation in today that blew me away, a special thanks to the Hunter's. I would like to take an opportunity to thank all of the great people that have donated through our site and others who have donated through the PBSN site. Here is a list of out current supporters:

Dave and Kelly Frazier
Chris and Ashley McCool
Denise Ayoubi
Matt and April Brass
Josh and Elizabeth Hunter
Dave and Monica Atkinson

I am so proud to have these generous people in our lives! Thank you all so much and we look forward to seeing more donations roll in...
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Thursday, April 2, 2009

We're back on track!


We didn't drop off the face of the earth, we finally moved! It has been a long couple of weeks for us and we have moved into our new house and now we have Internet. Other than the moving, not too much is going on with us, we're trying to get settled in the new house and find our way around town. One of the fabulous benefits of being in Rainbow City Al, they have a chocolate festival!! Super exciting and you all wish you could come check it out, but please don't be jealous.

The most important news for this post, we did our first race last weekend!!! Miller's Nana came up from Niceville, FL to run with us and Madison also participated in the kid's fun run. My mom actually won the grandmaster's prize and Matt came in 3rd in his age group(way to go!!) I also won a prize, don't get too excited it was a door prize but we all did get called up on stage to collect and that was pretty cool to see all the running for Miller shirts flash across the entire running audience! Madison was waiting for her name to be called so she could collect her medal as well so we gave her a private ceremony after the fact(she is still wearing her daddy's medal around the house a week later). It was not the perfect race day, in fact is pretty much sucked, it was raining and we bit chilly but to point is that we were so determined we stuck it out and finished the race! One down and 14 more to go, we can do it!!!
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Monday, March 2, 2009

It's a bit hectic

This week is a bit crazy for us. We are officially moving this week! The movers will be at our house Thursday morning to pack us up and Friday morning they will load our stuff on the truck and take it to Rainbow City Alabama(yes I said Rainbow City, it is a real place). Madison's last day of school will be Thursday and they are having a Madison party, she is very excited about the party but doesn't understand why her friends will not be moving to Alabama with us. Also, just in case nobody knew, Miller is turning one on Friday!! I have already cried about it this week, I am so sad my baby is getting so big and have decided that I need another one!

The training was getting back on track after all the sickness but then is came to a screeching halt when snow started falling in south Georgia. I know snow is normal to most people but for me no way am I used to, it is way to cold for me so I am waiting for the 70 degree weather to return this weekend. The good news is I felt good on the last run so I hope to continue on that same path very soon.
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