23 Days - Our Journey with Infant Botulism

In honor of the strongest baby I know and to educate anyone who wants to listen, I will be posting 23 days of facts, stories and thoughts on our experience with Infant Botulism. Please scroll down and find Day 1 and continue from there. 

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Day 23: The Baby Behind the Botulism He has been called Mister Man, J Man, J Money, Jojo Ma, Jojo, Super Joey, Baby Joey and just plain Joey, but he has never been called Jude. But for some reason when thinking about this final post about my son, I can't stop singing, "Don't you know that it's just you. Hey Jude, you'll do." I think the reason is that my hopes for Joey as he grows up can be summed up in that single Beatles' lyric. I hope he always remembers that he has nothing to prove, no one to perform for, no one to impress, no one to be but himself. There are no expectations for him to to think he needs to live up to. Since the day he was born and still to this day, the best word that describes Joey is "sweet." He just can't help it. He will happily hug and give a smile to anyone who needs one. He has the sweetest heart and the sweetest disposition and I don't see that ever changing. I've heard several people remark that he seems like an old soul, but honestly, I think that is completely wrong. To me, Joey is as new as a soul can be. He gets all that he can out of every day and wants to learn as much as he can (You wouldn't believe me if I told you how smart my 16 month old is). Joey loves life and all that it brings and you can see how grateful and excited he is to experience it. I know all little ones get that "marvel at the world around them" look, but Joey doesn't just marvel, he tries to figure out what makes things so marvelous. He loves dancing, singing songs with Mommy, reading books, the moon, doggies, doing anything his sister does, playing guitar with Papa T, leaves, choo choo trains, avocados, all berries, climbing, his Daddy's bald head, balloons, vegetarian chili, coloring, ovals, swings and snowmen. He doesn't like getting his teeth brushed, taking naps, seeing his sister get bigger pieces of anything than him, wearing shoes, getting out of the tub, or having to wait. Not that we want to see if it is true, but Joe and I have talked in the past about how much Joey has done and overcome in his short life and we have agreed that he can do absolutely nothing else for the rest of his life and we would still be proud of him. Joey doesn't seem like the kind to rest on his laurels though so I'm sure we will only get prouder. It has been an amazing thing to witness the true strength of your child and see what they are really capable of. Joey has shown bravery that you would not believe an infant could show. His sister has shown courage and grace that you would not believe a toddler could show. At Thanksgiving this year, when it was my turn to say what I was thankful for, I said I was thankful that my children are stronger than my husband or I could ever be. I also added that it is not true what they say about these types of situations making people stronger. Infant Botulism didn't make my son stronger. Joey had always been that strong, we just didn't know it until then. We were all already that strong, that's how we made it through without falling apart. We just didn't know it yet. Sometimes it just takes 29 years to know how strong you have been the whole time. Joey's strength, just like his sweetness, is sure to never fade. We have no idea what the future holds for Joey, but my husband and I were trying to think of what kind of future would even be good enough for such an amazing being. We thought and thought and then we got it. One day when the plurality of worlds is realized, we hope that Joey is chosen to be the representative from the human race to meet all other beings in the universe because he embodies the best that we have to offer. Now that's thinking outside the box! Good bye!

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Day 22: Looking Forward, etc. I thought I would make this a hodge podge post of anything I still wanted to talk about, including if and how our lives have changed after experiencing first hand how precious and fragile life truly is. First, I cannot stress enough that although this was the worst thing that will hopefully ever happen to my family (for generations to come), my husband and I could not feel more lucky and thankful. There are plenty of parents out there who would give anything to have our story, to have a healthy child, to still have a child, to have ever had a child at all. Our son made a complete recovery and we did too; a recovery from feeling sorry for ourselves. I remember the day in PICU when I said to Joe, "Wow, we are now those people who have a sad story." We both just nodded and stared at Joey. I can't remember now if it was later that day or the next day when we both realized, "No we're not!" We actually have the happiest of stories because today our son is perfectly healthy and there is not a single sign that anything ever happened to him. We have sad memories, yes, and they are memories that fill my mind on a daily basis, but I still have a son to kiss goodnight and that makes me one happy mommy. I want to thank Dr. Weihmiller, Dr. Glen, Dr. Chris, Dr. Yosef and all the PICU staff. Dr. Zamon and Dr. Harrison and all the staff of 3E including Jen, Kristin, Lisa, Katie, Natasha, Kayla, Pete, Scott, Theresa, Betsy, Ryan, Lena and Michelle. I never wrote down a single one of your names, but have remembered you til this day. I have had the pleasure of randomly bumping into one of our PICU doctors and one of our floor nurses on seperate occasions and was able to thank them for everything they did for my son. I can truthfully say that Joe and I have always known what really matters in life. We have had this motto about life for probably close to a decade that we remind ourselves any time the worries of the world start to get to us: "We live on a giant sphere that floats around in infinite space." Genius, I know. We like to think this motto puts everything into perspective. Ever since of first child was born, we have known that our children are the only thing that makes sense in this world and everything else can wait. So I can't say that Infant Botulism has caused us to hold our kids tighter and longer or has made us stop and smell the roses, because it didn't. We've always done that! We loved our children just as much before as we do now. We played and laughed with our children just as much before as we do now. We ignore things like dirty dishes, growing grass, and insane amounts of DVR recordings just as much now as we did before. This past December was the first time Joe and I went out by ourselves, just the two us, since Audrey was born. We went Christmas shopping and although it is hard to believe, we stopped and had a quick lunch too! I can't stand the thought of not being with my kids because nothing seems right without them. I can think of one thing that I appreciate more now than I did before Joey got sick. I have never felt more lucky to be a stay at home mom than I do now. I did not miss a single step in his recovery or miss out on any smiles between Joey and Audrey during their reunion. Knowing that I was there and can remember almost every single detail of the days leading up to the first sign that something was wrong, and knowing that I was able to be beside him nonstop once we were home, makes me love my "job" even more. I know now just how lucky I am to stay at home and how blessed I am to have a husband who works a minimum 16 hours overtime every paycheck so that I can stay home and be where I am meant to be. Lastly, there is a line from "O Holy Night" that I keep thinking fits somewhere in this post so I will mention it here. "The soul felt its worth." That is it, just those five words. That describes what being a mother to Audrey and Joey has done for me; my soul has felt its worth. It was the same before Infant Botulism came into our lives and it will remain that way always. No job, no farmhouse, no cross country traveling and no blog will ever come close to making my soul matter more than my two Earth angels do. If the only reason I was ever born was to be the mother of these children and to be the one holding the hand of that baby boy when he was fighting for life, than that is quite alright with me.

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Day 21: Grandee and Papa T It is useless to write this post because I have already told them that there is no way I can ever thank them for everything they did for my family. I am not just saying that for dramatic effect or to tug at heartstrings, I am saying that because it the flat out truth. There are no words to describe what I feel when I think about them and all they did during Joey's journey. So rather than make this a post about how thankful I am to have them as my parents and for my children to have them as their grandparents, I would just like to share something. I am the youngest of five children. Their third child born, my brother Eric, was asphyxiated at birth and had to be brought back to life. There is a lot to the story, but most importantly is the fact that Doctors and specialists of all kinds told my parents that my brother was going to be "a vegetable the rest of his life" and that he should be sent away to a special place to be looked after. My parents knew the Doctors were wrong and after seeing glimmers of life in their newborn baby one day before his constant doses of medicines were given, they started second guessing the medical opinion. Their case of hope was not welcomed by the doctors or their staff. My parents refused to give up on their son. I think about a month after he was born, with their pediatrician on their side, my parents called a meeting with every person who was in charge of Eric's care. My parents informed them that they wanted his medicines weaned because they would be taking their son home. Doctors did as they asked, but told my parents, " He won't survive if you do this." My brother is now 34 years old, married with a wonderful son of his own, and is perfectly healthy and normal. I share this story because after watching my own child's health suffer, I am more proud of my mom and dad than seems possible. When you become a parent, you think you understand your own parents a little better, but after going through our Infant Botulism nightmare, I understand everything about my parents, about their life and about all decisions they made after my brother was born. I understand why they took us to Disney World instead of saving for a rainy day. I understand why they were our coach and homeroom mom. I understand why they were always the parents dropping friends off here and there. I understand why they still have hopes and dreams at age 60 and 64. I understand why their hearts break when they feel their children don't appreciate them. Their other four children may still knit pick things my parents do or don't do, but I do not join in. I have nothing but gratitude to offer, a gratitude my siblings cannot begin to understand. This is not meant to sound rude, it is simply because I now share something with my parents that I wish none of them ever have to share. I want to end this post with something else I understand. As I have written in previous posts, my mom and dad took Audrey into their care and loved doing so. Although I gave my mom the list of bedtime songs I always sang to Audrey, she said none of them helped. So one night, she started singing "April Showers" and it became the only song Audrey wanted to hear. I had never heard of it so I learned it for when we were finally all together. Audrey never let me sing it to her at first though, maybe it made her sad thinking about when I wasn't there. She now lets me sing it to her all the time! I understand why Grandee chose this song to sing to her, whether consciously or subconsciously. It's about looking forward to good things that lie ahead of the not so good times. It's about the positives that come out of gloomy situations. So, Grandee and Papa T, this video is for you.

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Day 20: Videos, Cards, Books and The Quilt While Joey was in the hospital, especially PICU, it was hard to feel connected to anything. Sure, my son was where my focus needed to be, but I wanted him to feel connected to something other than machines. So, let's talk about how others made Joey and his parents feel connected, and loved! Videos: I wouldn't have survived my separation from Audrey without them! My parents would send videos of nothing more than Audrey eating breakfast and it would be enough to keep us motivated to get through whatever the day would bring. As I mentioned before, Joey recognized her voice so we would play "The Sound of Audrey" for him several times a day. We received videos from family with heartfelt, inspirational messages, with songs and smiles, and even one video that involved robes and underwear, but I won't name names. When she wasn't putting Joey updates on Facebook for us, Aunt Leah facetimed with us from California several times too. Seeing familiar faces and knowing that life was still going on elsewhere helped us to remember that Joey wasn't going to be hospitalized forever. Cards: Joey received cards from family, friends, strangers and even a few celebrities. Thank you so much to everyone who took the time to send one. Our hospital has an amazing feature on their website that lets anyone send an E-card with an added message to a patient. The cards are printed out and delivered to the patients and it is something I wish all hospitals had. Joey received more cards than you would believe and we read them and reread them to him every day of his stay. We had them plastered on his PICU wall along with all the homemade cards his cousins made him and the photo boards Aunt Sara made. Joe and I were so moved by how much we appreciated the daily delivery of cards that we spent one night filling out an E-card for every patient in PICU signed, "Your friend in Room 12." We were disappointed the next day when a patient advocate came in to inform us that although it was debated over by her supervisors and although it was the nicest gesture and that she had never seen anything so sweet from another patient's family, she could not deliver the cards because of patient confidentiality since we signed them from Joey's room. We tried. Books: My husband's first purchase for Joey from the gift shop was beyond appropriate for his son; My First Superman Book by David Katz. It is a touch and feel book and we read it to Joey every day, along with my husband's next gift shop score, My First Batman Book. I think buying these books was not only a way for Joe to feel connected to Joey, but it made trips to the gift shop feel more like maybe he was running to target and bringing Joey home a surprise. I highly recommend this series of books for any child or parent who enjoys a lesson in superheroes. I am not ashamed to say that we have been purchasing the rest of the collection for holidays and birthdays this past year and finally have all of the available books. You can be jealous. The Quilt: Around day 3, a nurse came into our room holding a quilt and said it was for Joey. She kept it folded and set it on the bottom of his bed. It was adorable for winter, with penguins on one side and what looks like a winter version of "It's a Small World" on the other. Joe and I were so happy and grateful to receive it. I was smiling and felt so appreciative that someone had taken the time to make it and then all of a sudden... 3, 2, 1, BOOM! It hit me like a ton of bricks and I started crying for the umpteenth time that day. It hit me that the reason someone just brought in this generously donated quilt was because my 3 month old son was lying in a cold, Intensive Care Unit at a Children's Hospital. It hit me that Joey's current health situation warranted a donated quilt. Later that day, Joey got a bath (with his Dr. Bronner's soap and Earth Mama Angel Baby lotion) and when he was clean the nurses changed his sheets and they placed his quilt on the bottom of his bed, folded so decoratively and lovely. That beautiful piece of fabric, made with loving hands, brought such color and warmth to my son's room. Thank you Deborah's Angels from the Olde Kent Quilt Guild. The letters KNP 2014 are written on the label. The quilt now hangs in the second bedroom like a valance over the window where we see it everyday.

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Day 19: Roommates galore!

Our week in PICU was unimaginable because of the circumstances that found our son needing to be there. However, one of the only positives about that week was the fact that each patient has their own room with their own bathroom. Little consolation for seeing your son's body failing him, but it really was a luxury in retrospect. Over two weeks on the regular floor, we saw close to 10 roommates and believe me, one was stranger than the next. I really wish I would have kept a journal of this ordeal if not for this reason alone. However, I am not making this a post that laughs about or judges the many types of roomies we encountered. There is nothing for anyone to gain from that. I wanted to write about this topic because having roommates, and thus having something to chat about other than our sick baby, meant Joe and I were finally able to find humor in the world (and ourselves) again. I guess more than just finding humor and being able to laugh, we actually felt like we were part of the real world again. We walked into our new room with Joey and were on cloud nine because it meant he was in the recovery stage of his, well, recovery. We couldn't stop smiling. I was now able to hold him whenever I wanted and the room seemed so bright and sunny compared to PICU. I felt so good that I actually left to have lunch with Audrey and my dad in the cafeteria while Joe and my mom stayed with Joey. It was the furthest and longest I had been away from Joey since he was admitted to the hospital. Our first roommate and his family arrived that night. I want to mention them because this was the first time I started thinking about empathy and trying to figure our if I still had any in me. The patient had a broken bone and just had surgery to correct it and we could hear his mother talking to family on the phone like it was the end of the world and complaining because they would have to stay a little longer than they were originally told. All I could do was roll my eyes and do everything I could to stop myself from screaming out loud, "You have no idea how lucky you and your broken legged son are!!!!!" But looking back, of course that's how she should have reacted, any mother would have. A child having a surgery is a scary thing and a parent has the right to feel however they want when it comes to their child being hospitalized. I am sure a parent who lost their child at that same hospital would have wanted to shout the same thing at me whenever I was feeling sorry for myself or Joey. I am sure a parent who lost their child at that same hospital would have wanted to shout something a little different at the parents of the next roommate I want to mention. I will call him Baby W, but yes, I still remember his real name. From eavesdropping, which is hard not to do when you are 15 feet away from one another, we knew that Baby W was 1 1/2 months old and his parents lived in New Jersey. They were with him when he was brought into the room, but left not long after and did not return for 2 days. This newborn baby was left without a family to care for him or to watch over him and in their place was a television screen that was positioned so close to his face you wouldn't believe it. All Baby W did was wail. That newborn scream cry that makes the infant's entire body shake was heard at all hours of the day. We could see how high his heart rate would get when he was wailing because the monitors were right there and were going off more than Joey's feeding alarms. Sometimes a nurse or volunteer would come in and sometimes they wouldn't. Several times, his cries were so bad and prolonged and no one was coming to check on him that we had to call to have a nurse come in. My mom called a nurse in because one time his shaking had caused his swaddling blanket to loosen and cover up his face. It was heartbreaking to not be able to do anything to help him. I sang a lot to Joey so I would try to sing extra loud in hopes of soothing Baby W. My husband and I still talk about him and what a sad situation to witness firsthand. It was so interesting because none of our reactions was in reference to a "loud roommate", but rather in reference to the tiny soul that was left alone to do nothing but cry. Lightening up the roommate discussion, I will end with my favorite roommates. I am not just saying that because they were our British counterparts, but because how they lifted my spirits at a time when I felt like Joey's discharge was never going to happen. Of all the possible hospital rooms available and the possible roomies, what are the odds that we would end up with ones who cloth diapered their baby and came wielding Dr. Bronner's hand soap. I fell in love with them right away. I have let only 2 brands of baby products clean my children, Earth Mama Angel Baby and Dr. Bronner's Magic Soaps. They are the only products anyone should use or need to use on their babies. Our Physical Therapist was pleasantly surprised when he saw our EMAB lotion on Joey's bed because he said that is the only lotion he uses when teaching parents about baby massage. Getting back on topic, during our stay in the hospital we saved all the free personal care products that were restocked everyday and gave them away at a later date. Our sink was decorated in Dr. Bronner's Lavender for me and Joe and Baby Mild for Joey. Then one day, Dr. Bronner's Peppermint showed up on the other side of the sink. I asked Joe if he had grabbed the wrong scent when he last bought our soap, but he had not. It was our roommates! I know this might sound so lame, but little things like that made our stay more bearable and hospital living felt a little more familiar. But these roommates from across the pond had not finished wooing me yet. Although they were there for no more than 2 days, I am sure they saw the barrage of Doctors and therapists enter and exist and heard us retell Joey's story over and over to each of these visitors. We had a few friendly exchanges and passed each other while walking our sick babies around the floor, but that was it. But for some reason, the night they were discharged, our overnight nurse, Kate, came in on a mission. She informed us that our roommates wanted to deliver a message to me, but thought it inappropriate to do themselves so they asked her to do it. The message they felt so compelled to convey was, "You are an inspiration to mothers everywhere and should be so proud of yourself." I couldn't believe that really happened and still don't. I know they only said that because of the soap😉

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Day 18: Birth Announcements and Etsy

Don't hate me, but I am going to shamefully promote my brand new Etsy shop (I just opened it today!) in this post and there is good reason. For awhile now, I have been trying to figure out what I can make and sell in an effort to contribute to our household income and was leaning towards home decor since I have made countless items for my own home. I was having trouble thinking about what exactly I should make and believe it or not, these 23 posts helped me decide. Before I decided I was going to do this blog about Joey's journey with Infant Botulism, I wrote down topics to make sure I had enough to fill 23 days and I did. One of the topics I wrote down was "Joey's birth announcement." For his sister's birth announcement, I included the quote, "The mightiest oak in the forest is just a tiny nut that held its ground" under all the typical birth announcement stats. I thought this was a special touch and knew I wanted an equally adorable quote when I was making up Joey's announcement. I had recently heard a French proverb, "Petit a Petit, l'oiseau fait son nid" and it just kept sticking with me. It translates as, "Little by little, a bird builds its nest" and so with my love of France and birds it was a great choice for my son's birth announcement. I was using it as a literal translation because our nest was slowing getting bigger thanks to our new baby boy. But really, the proverb is about perseverance and not giving up and is more similar to our American phrase "one step at a time." Well... you have read Joey's story and now know what he had to go through to get his life back. Can you think of a more perfect theme to his first year of life than "petit a petit, l'oiseau fait son nid?" I can't. I made a sign with this proverb on it for our own home awhile back and it hangs in the dining room/play kitchen/dress up area. I look at it many times a day and think of how strong my son is and what he accomplished. So that is what I decided to make for my Etsy shop. Signs with this simple, yet poignant proverb that has struck a nerve with me. It makes me feel good knowing I am creating something for others that has come from my heart. And of course, I will be promoting awareness for Infant Botulism every step of the way. For now, it's the only sign I am making because it's the only sign I want to make. I am hoping this 23 day blog will offer up more inspirational ideas, but I am not sure how many women are ballsy enough to hang up a sign that reads, "The Breast there Is, The Breast there Was, and The Breast there Ever Will Be." Although that is kinda awesome and powerful now that I think about it! https://www.etsy.com/shop/GigiAndJojo

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Day 17: SIDS and Betsy Ross

Infant Botulism was not identified until 1976. Only four states reported cases that year- California, Tennessee, Texas and Pennsylvania. According to SIDS.org, Sudden Infant Death Syndrome (SIDS) was "first defined in the late 1960's and was refined in 1991 as the sudden death of an infant under one year of age which remains unexplained after a thorough case investigation..." SIDSMA.org calls SIDS "sudden and silent" and "unpredictable and unpreventable." Sounds similar to Infant Botulism. Is it at all possible that some cases of SIDS have been undiagnosed cases of Infant Botulism? I am no medical professional or researcher, but I definitely think it is possible. In Finland in 2002, an 11 week old baby boy died suddenly and after autopsy, the cause of death was classified as SIDS. "The autopsy specimens of the child were investigated as a part of a survey on the association of C. botulinum with SIDS in Finland" (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC540168/pdf/1297-04.pdf). Thorough testing discovered that C. botulinum type B was in the infant's intestine and C. botulinum type B was also found in the household vacuum cleaner dust. Both were found to be genetically similar and both tested positive to produce the botulinum toxin. Although this is just one example, it shows that it is possible. This possibility really gets me thinking about the uncertainty of SIDS and how that must add to the devastation of the loss of your child's life. It's hard to believe that with everything science and medicine knows and can do at the present time, something like SIDS still exists. This gets me thinking of my job before becoming a stay at home mom. I had the once in a lifetime opportunity to portray our nation's most famous flag maker, Betsy Ross, at the Betsy Ross House in Philadelphia. Besides making flags for her country, Betsy was a business owner, an upholsterer by trade, and a mother to 7 daughters. Two of her daughters died when they were infants, as we sadly know too often was the case "in the olden days." There is no documentation as to what their causes of death were, but one can assume that it is possible no one knew for certain anyway, just as it was for centuries. Because of Joey's battle, when I now think about American history and of the farming of new land and the building of new homes, I think of bacteria infested soil being stirred up and Clostridium botulinum spores floating around the air. I think of the infants that never stood a chance. We often think of the high infant mortality rate of years ago due to poor hygiene, lack of knowledge of germs, poor prenatal care, etc. We never think about silent killers like Infant Botulism. Remembering that Infant Botulism was not diagnosed until 1976, I can't stop wondering how many babies actually had it before then. How many babies were misdiagnosed, undiagnosed? How many babies had to suffer, had to die before light was finally shed on this terrible disease?

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Day 16: Giving and Receiving

Once Joey was out of PICU, we had a visitor everyday from the Child Life Department checking to see if there was any toy or activity that Joey might want play with. Although we had brought some of Joey's toys from home, we took Child Life up on their offer and asked for a mobile and a calming, musical crib attachment that we turned on every night. Child Life programs offer so much more than just toys though. They help children understand their treatments, diagnosis or any other part of their hospitalization. Child Life provides education to patients and their parents and even offer stress management strategies. Our hospital had a Child Life Center where patients could go to get away from hospital life and relax and play at what could be described as a kid's clubhouse with any kind of craft, toy, game or music you can think of. I had the privilege of practicing inserting a feeding tube down the nose of a doll that Child Life uses to demonstrate procedures to children and their families. Simply put, Child Life Departments are invaluable to the young patients who all benefit from their services. I also want to add that Child Life is a growing field and is a great option for anyone looking for a unique, rewarding career. Our hospital also had another fantastic service called The Family Resource Center. This ended up being the place I turned into my daily morning routine to go get coffee for myself and my husband. This also ended up being the place where we spent the most time with Audrey when she came up to the hospital. The Family Resource Center is open to families of all patients. It offers free coffee and tea, several reduced priced snack machines, computers, books and comfy couches and chairs. All books in the center are free to a good home. For parents staying at the hospital, it offers washing machines and dryers, private bathrooms and showers with towels provided. The Family Resource Center was really our escape from hospital life and I am sure many parents would agree. On the wall just outside the entrance to the center are the names of all the donors who made it possible. One day as I was exiting, I stopped and looked at the names. As I read them, I thanked each one. I wondered if any of those generous donors could ever imagine how grateful I was to them. When you have a child who is hospitalized, you are so thankful to anyone who helps them or thinks of them and to anything that helps you forget you are living in the hospital. We knew we wanted to give back. For Audrey's 1st birthday party (2013) we had asked guests to bring a teddy bear so that we could donate them to a good cause. My husband took them to work and while on duty would hand them out to children he thought could benefit from them. It was clear to us that for her 2nd birthday, we would ask guests to bring books that we would donate to The Family Resource Center. We had noticed that there weren't enough books for children Audrey's age and so our donations hoped to change that. We had a few guests come up with the great idea of crayons and coloring books which was perfect! For Joey's 1st birthday, we asked guests to bring brand new toys that would be donated to where else, but The Child Life Department. For both of the birthdays, our guests went above and beyond with their donations and I hope they know how appreciative I am for their generosity and kind hearts. Joe, Audrey, Joey and I dropped off all the donations in December and it was a wonderful feeling to be back at the hospital that gave us so much and to be there trying to return the favor. I don't know if I will ever have enough money to be one of those names on the wall, but I do know that I will continue to support the programs that supported my son and my family any way that I can. http://www.nemours.org/service/support/naidhcsupport/childlife.html

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DAY 15: Did You Know...?

Dealaware, Pennsylvania's counties that surround Philadelphia, most of New Jersey, and northern Maryland are referred to as the "Eastern Hot Zone" of Infant Botulism by the Infant Botulism Treatment and Prevention Program. That is because this area sees more cases of Infant Botulism than other areas in the country. The soil in this region seems to be perfect for the Clostridium Botulinum bacteria to grow in. Per capita, Delaware has the highest cases of Infant Botulism (4 cases in 2014), but California ranks number for most cases each year. If you live in any of these areas, ask your Pediatrician if they are familiar with this disease or its symptoms. Would they be able to recognize the early symptoms? There are too many stories of Pediatricians telling parents to "give it a few days" or "not to worry it's just teething" and then the babies end up being rushed to hospitals. Although it is rare, I find it unacceptable that those of us living in these areas, or any area for that matter, are not given any information about Infant Botulism by our Pediatricians when our babies are born.

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Day 14: The Poop, The Whole Poop, and Nothing but The Poop

For the first few days after he was admitted, any new doctors or nurses would ask if Joey had been constipated. We laughed every time and say, "Yep, since he was 3 weeks old!" They were asking because constipation is often the earliest symptom of Infant Botulism. We were laughing because when Joey was 3 weeks old he only pooped (yes, I am going to keep using the word poop, get over it!) once every seven days. He also began having horrible spit up issues at this time and the combination appeared to make him so uncomfortable and distressed. We were at the pediatrician or calling the pediatrician's office frequently to try to figure it out. Rubbing his belly, warm baths, etc, but nothing would make this baby poop! Finally, at 2 months old, we saw a GI specialist and he said it was reflux and that it is perfectly normal for a breastfed baby to go up to 2 weeks without a poop. Who knew? Not me. He said if we have the patience, he should be fine by the time we introduce solid foods. At this point, Joey had had a few 4 day poop intervals so we were hopeful things were already getting better. By the time Infant Botulism showed its face, he was pooping about every 2 days and the spit up was nothing like it was. So... is it possible that Joey actually had ingested clostridium botulinum bacteria at a few weeks old and was just able to fight it off or the bacteria was slow growing? OR, was Joey susceptible to the colonization of the bacteria due to his already present constipation? Can't really say, but my guess is the latter. As I mentioned in an earlier post, clostridium botulinum is all around us because it is in our soil and our dust. So, chances are that all of us, including infants have ingested these spores at some point in our lives. Research cannot pinpoint why some babies' intestines are just the right place for the botulinum toxin to be produced and other babies' intestines are not. In Joey's case, it had to be because he pooped so infrequently. The bacteria eventually leaves the body, being passed in stool. So it seems logical that because Joey's body only pooped once or twice a week, the bacteria had plenty of time to colonize and thus produce the toxin. Joey's poop is also how it was confirmed that he did in fact have Infant Botulism. A stool sample was taken by way of enema around Joey's third day in the PICU. It took just a few days for the positive test results to get back to us, we were told it could take over a week. Although everyone was certain is was Infant Botulism and Joey had already received his BabyBIG, this confirmation meant that without a doubt our son was being treated for the right disease. Since the bacteria can still be found in an Infant Botulism victim's poop for many months, it is recommended that great caution is taken when changing their poopy diaper. We played it super safe, especially because we had another child in diapers still, and went almost 6 months with wearing gloves when changing poopy diapers and by changing over to disposable diapers. (Cue me going off topic a little by talking about how much I love cloth diapers.) Ever since our first baby was born we have used cloth diapers on our babies' bottoms and we thought it would be safer to switch to disposables for the months that the bacteria could still be present. For economical and eco conscious reasons, i hate disposable diapers! Needless to say, I was excited the day the BumGenius cloth diapers were back on his hiney. (On a side note, if you are a mama thinking about using cloth diapers let me know! I would be happy to give you a tutorial.) I will end this post happily by saying my son poops every day now and actually pooped on the potty last week!

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Day 13: Rare Disease Day!

The last day of February, the rarest day on the calendar, is celebrated internationally as Rare Disease Day. In the U.S., The National Organization for Rare Disorders (NORD) works tirelessly to educate and advocate not just on this day but every day of the year. The purpose of Rare Disease Day is to raise awareness to the public, policy makers, health professionals and anyone who wants to listen. Honestly, I think everyone effected by a rare disease needs to do their part to get their stories out there. Whether it is to raise funds or lower fatality rates, attention needs to be given to this cause. Last year on Rare Disease Day, Joey was in the hospital recovering and we had just found out that this day even existed. This year, I am spreading the word about Joey's story and trying my best to advocate for all Rare Diseases. We proudly have the proclamation from Governor Jack Markell, stating that Delaware has declared February 28, 2015 as Rare Disease Day, displayed in our home. I am unapologetic about the shirt I am wearing today that factual states, "My son kicked Infant Botulism's ass." I am hopeful that someone will read our family's story and another baby's life will be saved because of it. Let's talk numbers: Nearly 7,000 diseases and conditions are considered rare by the National Institute of Health. Nearly 1 in 10 Americans has a rare disease. Two thirds of the Americans living with rare diseases are children. Over 450 drugs have been approved by the FDA to treat rare diseases, but millions of Americans still have no treatment for their diseases. A few dollars short of $225,000 was the total cost for Joey's fight with Infant Botulism. If not for the anti toxin, BabyBIG, this amount would have been at least doubled due to a longer hospital stay and the complications that can come with that. Our insurance covered almost everything! However, millions of people are not as lucky as Joey. They don't just have a brief encounter with their disease and that's it. Most people living with rare diseases have them for the majority of their lifespan and Joey's medical expenses pale in comparison to their's. Help those living with rare diseases and share their stories so the proper attention can be given and the appropriate changes can be made to improve their lives and the lives of future rare disease patients. In response to the overwhelming amount of people who have posted and shared the link to my blog and have let Joey's story be heard by more people than I had ever hoped, I offer a forever Thank You! With one touch of your finger, you may have saved a life. In response to my oldest sister, Leah, leading the Super Joey parade and creating this wonderful platform for me, I offer you an immeasurable amount of gratitude that will never seem enough. You have been sharing Joey's journey from the beginning and making people aware of Infant Botulism and that is what Rare Disease Day is all about. Alone we are rare. Together we strong. www.rarediseases.org www.rarediseaseday.us

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Day 12: Joey's Birthday

After going through the nightmare known as Infant Botulism, all you can do is celebrate! We celebrated Joey's recovery, we celebrated when he reached milestones early, we celebrated when he ate solid food, we celebrated when he said his sister's name, we celebrated because it was Tuesday! Don't be afraid to celebrate your children!!! Let them know that you are happy to know them, to play with them, to love them. We make sure that are two children know that we are happy and grateful that they exist in this world. We knew Joey's birthday was going to be the day we waited for all year. I know all parents countdown til their child's 1st birthday, but for any parent with a sick baby, you honestly won't believe it's really gonna happen until that special day finally comes. On his birthday, we had a fun filled day starting with all the decorations my husband put up the night before. It looked amazing. His chair was decorated with superhero balloons and we had homemade pancakes and fruit for breakfast. He was dressed in a Superman shirt and cape and a Waldorf inspired felt birthday crown that I made him. We played, all four of us together and then headed to an indoor playground that Joey loves. It was the same indoor playground that Joe took Audrey to for the first time while Joey was still in the hospital and the same indoor playground that we just went to to celebrate Joey's 1 year Infant Botulism anniversary. My sister and her daughter met us there. We didn't want to exclude anyone, but this was a special way that I could thank my sister for everything she did for us during Joey's hospital stay. From watching Audrey, to ordering a huge supply of Audrey items that she had shipped to my parent's house, to making a photo album for Audrey, to bringing me her breast pump so I didn't have to leave our PICU room to pump, to showing up while Joey was on the ventilator (even though I said I didn't want anyone seeing him like that) because she wanted to be there for her sister, to visiting us so many times that nurses started to recognize her... she was our biggest cheerleader. The little ones had a great time and then it was off to lunch at our family's favorite little restaurant. My sister declined my invitation saying that she wanted my family to enjoy more of the special day as just the four of us. Lunch was fun and the kiddies fell asleep on the ride home. We played with Joey's new gifts when they woke up and Grandee and Papa T came over for dinner and cake. We had Joey's favorites, grilled cheese and homemade vegetarian chicken noodle soup. That's right, my gorgeous blonde haired, blue eyed boy does not partake in the eating of animals; guard your hearts future hippies! Anyway, when it was time to sing and have cake, I completely forgot about the video camera, but that's okay because enjoying that special moment and watching Joey's face will be with me always. In honor of the Autumn season and Joey's love of apples, I made him an apple cake and he quite enjoyed it. Putting him into his crib that night after he fell asleep was hard because I just wanted to keep holding him, but there was lots to still do for his party and there was only 1 day left to do it! Ahh, Joey's 1st birthday party...There was no doubt that with my husband's love of superheroes and Joey's superhuman ability to beat Infant Botulism, that a Super Joey theme was the unanimous choice. It was perfect! All four of us wore Superman themed outfits and asked guests to do dress accordingly. I handmade every decoration, besides balloons, from his felt banner, to the Metropolis cityscape, and even the piñata, which fittingly, I made out of the box my husband's kevlar vest came in. For Joey's cousins, I made them each a mask and shirts that read "My cousin kicked Infant Botulism's Ass." Joe and I had decided to do something different when it came to cupcake time. And by cupcake time, I mean eating white icing'd cupcakes with green candy gems on top to represent the Fortress of Solitude and kryptonite. Again being inspired by Waldorf traditions, we asked every guest to make their own wish for Joey. I gave a little speech about how we learned how much people's thoughts and well wishes can have a positive impact on someone's life and we wanted Joey to be showered in positivity. It was a beautiful moment to watch the candle being passed around and to hear the words our family spoke while holding it. I highly recommend other parents introduce this tradition for their children. When the candle came back to my hands and it was our turn, Joe and I could think of only one wish that was good enough for our son. It was the same phrase we spoke to each other when we married ourselves (look up "self-uniting marriage" if you are interested) five years before. It was the same phrase that I painted on our family room wall under pictures of our babies. So I held the candle, looked at our son and said, "Whatever you are wishing, I am wishing too."