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Tuesday, June 30, 2015

***AN IMPORTANT ANNOUNCEMENT***

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I've been waiting to do the Prune Belly Syndrome "bare your belly" challenge for when I was down in Texas with my brother. I figured if I did it any sooner, then you guys would know I'm pregnant, and I wasn't ready to tell all of you just yet. We wanted to wait to announce the pregnancy of Baby Boho for when we were in the second trimester, and hopefully past the high miscarriage rate of the first trimester. I'm about 16 1/2 weeks pregnant now, due mid-December, happy and healthy and we wanted to share the good news in conjunction with bringing awareness to the INCREDIBLY RARE Syndrome that has been giving my Brother hell since his birth 28 years ago.

While we were down visiting, we were working on establishing him better care, putting him together a support team of doctors, nurses, escorts to/from the dialysis center, overnight care on the nights of dialysis (it is scary watching him go through that...and even scarier bringing him home afterwards), and get his housekeeper more hours. Not to mention, most importantly of all, offering my Mom a break from doing all of this by herself these past 8+ months.

He had a ball with his nieces! He hadn't seen our eldest daughter in nearly 5 years, and had never even met my youngest...despite them sharing the same birthday. I'm so blessed and grateful that we had the opportunity to come down and visit him. Watching him suffer was so incredibly hard for me, but despite everything he's going through, he still continues to fight. He is determined to meet his newest niece or nephew, and we all hope, pray and send good energy out to the Universe for that to happen.

Prune Belly Syndrome is a terrible birth defect. My brother was born without stomach muscles, a non-functioning kidney, the other kidney only partially functioning, severe hip dysplasia, undescended testes, and an enlarged bladder. All of that, minus the absent abdominal muscles and failing kidney was corrected surgically...to the best of all of his surgeons' abilities, throughout his lifetime. My Mom was told during her pregnancy that he would be stillborn, that if he was born alive, he would be a midget (he's 6'2") and that he wouldn't live past two years old (the average life span of a Prune Belly). We just celebrated his 28th birthday last week! I truly believe his miraculous survival has been nearly all due to my Mother, and his strength to fight. She became an RN when he was 7 to better advocate for him and better care for his special needs.

He has fought through endless surgeries his entire life to counteract all the obstacles of his syndrome. Nearly his entire childhood was spent in the hospital, only after spending the first 2 years of his life in a body cast. He has some learning disabilities as well, on top of everything else, due to his being developmentally delayed.

He began dialysis a couple weeks ago after being denied a kidney transplant. He is currently too sick, and the doctors believe he wouldn't make it through the procedure. We are hopeful that dialysis improves his numbers enough to possibly receive the transplant later down the road. Especially because we have a very promising, very gracious donor in our family on standby...praying for that day to arrive. For now, he still has his tube in his barely functioning kidney, coming out his back to a urine receptacle and it is still producing urine. This means that his kidney hasn't thrown in the towel just yet.

If you, and those you love, are not familiar with Prune Belly Syndrome Network PBSN/Eagle Barrett Syndrome, please take a few moments to educate yourself on it. Our goal is to bring awareness, perhaps even raising money for the doctors doing genetic research, so that maybe someday, we can put an end to it.

Thank you for taking the time to read all of this. Please participate in the challenge! The more awareness we bring, the better future other Prune Belly's will hopefully have. Thank you for your ongoing support, prayers, good vibes and the like for my Brother and our family. They have not gone unheard. We love you all, and are so grateful to each and every one of you.

www.PRUNEBELLY.org
#PruneBellyChallenge #PruneBellySyndrome #EagleBarrettSyndrome

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