The last four months have been eventful. Libbye started this year with a 2 week stay at the hospital due to complications with her central line. She now has a port, which has simplified things and greatly reduced the possibility of infection. In mid-March Libbye had her remaining kidney removed and is now on nightly peritoneal dialysis. She is tolerating it well, but it has been an adjustment. Libbye no longer has to go to the hospital 2-3 times a week. Right now she only goes once a week, with hopes that it will be reduced to once a month. Soon we will begin the process of being tested for kidney transplant. We are hopeful that either Juston or I will be a match and we won't have to wait too long for the surgery to take place. Libbye is just over 18 lbs now and has to be 22 lbs for the surgery to take place.
Libbye is amazing, inspiring, sweet, loving, playful, happy, strong, spirited, cuddly and an absolute joy to have in our lives. She has taught us so much about what this life is truly all about.
In May there will be a golf tournament to raise money for Libbye and her uncle Justin, who was diagnosed with cancer earlier this year. Justin has shown to have the same grace and fortitude when facing adversity that Libbye has...must be in the blood. Please visit www.familygolfbenefit.com if you are interested in participating.
Thank you for helping our family.
Kelli, Juston, Brooke and Libbye Marshall
Happy Holidays to you all!
Thank you for keeping our little Libbye and our family in your prayers. We couldn't be happier with our little fighter. She has such a sweet personality and brightens our days. Libbye is now rolling over and is loving her standing bouncer. The doctors are very pleased with how she is doing and are preparing us for the initial stages of the transplant process. We will start the process for finding a kidney match in January, with hopes of Libbye reaching 22 lbs. by the summer of 2013. Once Libbye is 1 year of age and 22 lbs, she will undergo transplant. As of now, Libbye continues to go to the hospital 2-3 times a week and is on over a dozen oral medications. We are so thankful that she has not had to have her second kidney removed yet, it is truly a miracle that she has tolerated the infusions as well as she has. The infusions have allowed her to gain weight more rapidly than she would on dialysis, which will hopefully allow us to reach the ultimate goal of transplant as soon as possible.
Again, we are so incredibly thankful for all of the kind gifts and words of encouragement.
Kelli & Juston Marshall
Some of you may know, and some of you may not know the story of Baby Libbye. My business partner (and one of my closest friends), Kelli Marshall, had her second baby this summer, Libbye Marshall (A.K.A cuddlebug, Brooke's little sis, or as her daddy calls her "peanut).
This website is dedicated to raising money to help her and her family as they need it with medical expenses. Both of her parents work hard and do so much for so many people, I wanted to put something together to help them at this time of need.
My goal is to raise 22,000 by the time Libbye is 22 pounds, which is about the time she will have her kidney transplant. I really believe if we all work together, we can make this happen!
This is a re-cap of life for Libbye since she was born, written by her mother, Kelli Marshall:
Libbye was a surprise arrival, born 5 1/2 weeks early on May 9, 2012. She was squawking and appeared healthy at birth, but due to her prematurity she spend 9 days in the NICU. She was sent home with a clean bill of health and we were so happy to have the new little addition to our family.
On Monday, June 11, 2012 Libbye went to her one month well baby check-up. The doctor was a little concerned about her distended tummy and tiredness, so she decided to send us for labs. The labs made her a little more concerned, so we were sent to the ER. After multiple tests and several hours in the ER, just as we were about to be sent home, it was determined that Libbye had a very low amount of protein in her system. The kidney specialist was contacted and we were admitted to Children's Hospital. For the next few days Libbye was tested for numerous things. She has proven to be a tough little girl. It was such a shock to think that a well baby visit had in 24 hours turned into such an ordeal.
On June 14, 2012 the nephrologist mentioned that he thought Libbye might have genetic condition called Congenital Nephrotic Syndrome. It is a rare disorder and has serious complications. This diagnosis could not be confirmed without a battery of genetic tests, which were sent of at that time. Results of genetic testing came back on June 28 and revealed that Libbye in fact had Congenital Nephrotic Syndrome. The first step of treatment was surgery, which happened on July 3, 2012, one of the scariest days of my life. Libbye had surgery to place a central line, repair her umbilical hernia, remove a kidney and place a peritoneal dialysis (PD) catheter. The central line allows Libbye to receive infusions and medications as well as have blood draws without being stuck over and over again. The umbilical hernia had to be repaired before dialysis can begin, so they have decided to fix it during the surgery in order to allow time for it to heal. One kidney was removed in hopes that it will decrease the amount of protein being flushed out of her body daily. Finally, the PD catheter was placed so that it will have plenty of time to heal before the second kidney has to be removed.
As of now, Libbye is on 9 oral medications and receives protein infusions 3 times a week for 6 hours a day at OU Children's Hospital. Sometimes we are there 4 days a week if IV Immunoglobulin is needed also. We are hoping to prolong removal of the second kidney until Libbye is at least 12 pounds, but hopeful we can delay it even longer than that. Dialysis can be tricky with little ones, so the longer we can wait to have the second kidney removed the better. Dialysis will continue until Libbye is at least 22 pounds and one year of age, at which time she is a candidate for kidney transplant.
This is a very risky plan with outcomes that are difficult to fathom. The doctors have assured me that there are so few cases of this syndrome out there, that there is no gold standard method of treatment. The doctor tried to reassure me by saying that she is otherwise strong, is a fighter and has an amazingly supportive family...if she only knew how many more of you are out there fighting for Libbye too.
Libbye is such a smiley, happy baby that you would be shocked to know she is also so sick. She loves cuddling, listening to James Taylor and watching her silly big sister. We feel so incredibly blessed to have this brave little girl in our lives and are willing to do anything to help her fight!
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