Kayson

Meet Kayson, age 11 Months.

Kayson is a charming little boy. He loves to play peek a boo, has the sweetest smiles and even gets shy and burrows in his mother’s shoulder. Kayson is a unique little boy. He was born without a nose!

Kayson was diagnosed with mid face hypoplasia at his 20 weeks ultrasound. The doctors and his parents knew he did not have a nose, but they did not realize he did not have any nostrils or nasal passages until he was born. His mother had several fetal MRIs, and ultrasounds throughout her remaining pregnancy. When he was born, they cut the umbilical cord and passed him through a window for the neonatal intensive care unit, NICU.

After he was born, Kayson’s parents consulted with 3 different geneticists, inquiring about a condition called BAMS, Bosna arhinia microphthalmia syndrome. 3 geneticist refused to test for it, because it is so rare! The 4th geneticist finally confirmed this diagnosis and was impressed with the parents’ research and determination to bring the diagnosis to the doctors!

BAMS is so rare, it has been diagnosed less than 100 times in 100 years! Kayson is not just one in a million, he is one in 200 million! Typically with BAMS, there is a mutation in either the egg or sperm and very rarely is it genetic. He has no nose, nasal passages and his right eye stopped developing in utero. Kayson is actually very fortunate, some children with BAMS are born with no eyes. His left eye has a unique swirl known as a keyhole pupil or iris coloboma. To give him a second airway, the doctors gave him a tracheostomy. Kayson, eventually, will be able to have a prosthetic eye, and eventually a nose. His parents adore his sweet face, and hope that Kayson will be able to help decide if he wants a trach, or a nose.

In every aspect, Kayson is developing right on track. He has a healthy weight, healthy height and is reaching all of the milestones like his brother. Some heart aches his mother has are not being able to hear him cry! Due to his trach, he is unable to use his voice. His mother says she is hopeful that eventually it will be possible for him to breath through his mouth, and possibly not rely on a trach. Another heartache, unfortunately not uncommon, is the struggles socially. It is so hard when people stop and stare, or make rude comments. Kayson’s parents plea is that if you, or your child have questions or are staring, just approach Kayson and smile! Say hi! Sometimes when we are caught off guard with something unusual, we forget to be considerate of people’s feelings. His mother has done a great job advocating for Kayson, by going to an elementary school and talking to his older brothers classmates about how it’s ok to be unique and different. This is a wonderful idea to educate and remind children that everyone is special. Kayson’s parents have been very proactive in his diagnosis and continue to advocate for his emotional well being. Kayson’s parents also want to advocate that a tracheostomy does not mean a handicap. Glasses help a child see, hearing aids help people with hearing, and a trach helps with breathing.

Kayson is definitely a tiny little hero who was not born to fit in, but born to stand out!

To learn more about BAMS visit http://rarediseases.org

Parents who have a child with a tracheotomy should find support groups for emotion support as well as for tips and tricks for having Trachs.

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Braxton

Meet Braxton, age 4. Our Tiny Little Hero.

Braxton is 4 years old. He is very shy but loves to have fun. When he was 6 days old, he was diagnosed with Salt Wasting Congenital Adrenal Hyperplasia also abbreviated as SWCAH. What a mouthful!

After coming home from the hospital, with their first baby, his parents received frightening news. At only 6 days old, they were told to go immediately to the pediatrician’s office. During newborn testing, one of the blood tests, a test that measures the cortisol levels, was abnormal. (17-Hydroxyprogesterone is the official name) Cortisol is a hormone released by your adrenal glands. It’s function is to regulate the body’s salt content, as well as androgen hormones (male sexual hormones).

What does this mean for Braxton?

•He is very tall for his age. Children tend to be tall, and as they mature into adults, often they are shorter than average.

•He must wear a medical bracelet. Salt-wasting CAH is the severe form of classic 21-hydroxylase deficiency, and can be life threatening. In this type of CAH, the adrenal glands make too little aldosterone, causing the body to be unable to retain enough sodium (salt). Too much sodium is lost in urine (thus the name, “salt-wasting”). If undiagnosed, symptoms of classic salt-wasting CAH appear within days or weeks of birth and, in some cases, death occurs.
Symptoms may include:

  • Dehydration
  • Poor feeding
  • Diarrhea
  • Vomiting
  • Heart rhythm problems (arrhythmias)
  • Low blood pressure
  • Very low blood sodium levels
  • Low blood glucose
  • Too much acid in the blood, called metabolic acidosis (pronounced met-uh-BOL-ik as-i-DOH-sis)
  • Weight loss
  • Shock, a condition where not enough blood gets to the brain and other organs. Shock in infants with salt-wasting is called adrenal crisis. Signs include confusion, irritability, rapid heart rate, and/or coma. (www.nichd.nih.gov)

•He is extra cautious during flu season. Something referred to as “Adrenal Crisis” occurs when children like Braxton get the flu. Even some vaccines, physical stress or injury could send him into crisis mode. He sleeps extra deeply when sick, due to the hormone imbalances.

•He has a mandatory medication, called hydrocortisone. According to the World Health Organization, hydrocortisone is the drug of choice for SWCAH because it aids with glucocorticoid replacement therapy. The aim of treatment is to suppress the adrenal androgen production without impairing growth.

Although Braxton has a serious condition, he is still very much a busy little boy. His mother has hopes that he will still play and live life to the fullest, and not live in fear of getting injured or sick. He will live a little more cautiously than other little boys, but he is a tiny little hero to everyone who knows him!

Please share this story to raise awareness for SWCAH and other illnesses related to Adrenal function.

Support group recommended by Braxton’s mother is Parents of CAH kids on Facebook.

Deaf Gains

Let me tell you a story about a job interview I had, for the same EXACT job, same EXACT position, with my same EXACT resume and experience level, at two separate hospitals, for the same exact company. One interview, I was given the highest recommendation and referral by my current manager. The other hospital, no one knew me, no referrals, no connections. Guess which one hired me? The one who didn’t know I was hard of hearing. I still remember the first interview going so well, until the last question when she asked me how would I handle myself if I didn’t hear the doctor correctly. I was caught completely off guard, my confidence shattered and I had a knot in my stomach. How do I even answer that hypothetical situation when she’s already hypothetically doomed me?

Is she wrong to ask me? No, it’s a legitimate question. Is it fair to leverage my hearing loss against me? Debatable. What she doesn’t know, is I applied, interviewed and worked at the same position at a level one trauma center, basically a bigger and faster hospital, with more severe and emergent cases, more specialized equipment and training, for 5 years, and was later recruited by those same doctors to work for their private office outside of the hospital.

Am I bitter? Maybe a tiny bit. But it’s what I call Deaf Gains. You say hearing loss, or failed hearing tests, but I say lessons learned, obstacles destroyed! Not in a cliche way, but in an honest to goodness, life lessons, kind of way. It is exhausting working twice as hard as everyone else, at listening, at proving myself, at being taken seriously. Exhausting. I wouldn’t change a thing. I am strong. I have excellent work ethic, I do not expect hand outs, and refuse to surrender.

So next time you think of hearing loss, just remember that I don’t consider it a loss, I consider it many lessons gained. Deaf gains.

Never surrender. Fight harder.

Kaylee

Tiny Little Heros – Foster Care

Meet Kaylee, age 10

Kaylee wants to be a farmer when she grows up. She loves animals. She excels at mathematics, and she was adopted at age 5.

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Kaylee told me, being adopted was like a fairy tale. She said, in the beginning, it’s about overcoming obstacles and the bad people, and then as the story goes on, she finds her happily ever after, in this case, her adoptive mother. Kaylee and Noelle are the perfect example of finding love through foster care. Kaylee spent ONE day in the Christmas Box House, before her soon to be mother, found Kaylee and took her into her home. Kaylee’s mother, Noelle, had an open mind with foster care, intentionally looking for someone exactly Kaylee’s age! She had to be certified and licensed for a specific age range or age ranges. (Check the details for foster care at www.adoptuskids.org )

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It is uncommon for a child to be placed and adopted after just one home. Kaylee is so full of happiness, love and even some sass! It is so easy to see how Noelle fell in love with such a perfect little girl. They, no doubt, were made for each other.

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Foster care and adoption are not easy! The first step is the training and application process, followed by an assessment and licensing, and then approval by the Utah Division of Child and Family Services. DCFS will review the training, home study, license and application, and will either approve or defer a family for placement of the children. Kaylee was 4 years old when she was placed in foster care, with Noelle as her first home, 5 years old when Noelle knew she was going to be her legal daughter, and nearly 6 before the process was complete with all of the court dates and paperwork!

Foster care and adoption are not cheap! Parents are required to pay application fees, provide a home including furniture, bedding and a monthly allotment of clothing for the child, and must provide proof of purchases monthly to ensure the child is getting all of the clothing and comfort they require. However, the government will reimburse a small amount of those costs.

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According to Utah Foster Care and Adoption, “there are about 150 children at any given time waiting for adoption from foster care. There is a need for adoptive families for older children, sibling groups, and children with significant needs. These children need safety, acceptance, love and nurturing in a permanent family setting in order to grow into happy, productive adults.”

Every year, Noelle and Kaylee give back to the Christmas Box House, to pay it forward to other children in need. Its a wonderful reflection of how big their hearts are! Please share this article in an effort to show love and support to Kaylee, and all foster kids who are in need of homes. Let’s help them find their happily ever afters!

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For more inforamation on Foster care, adoption, or the Christmas Box House, please visit:

www.adoptuskids.org

www.utahfostercare.org

www.thechristmasboxhouse.org

Grace – Celiac Disease

Tiny Little Hero’s

Meet Grace, age 7

Grace is funny, ambitious and simply adorable. She can cook home made noodles and phenomenal red velvet cupcakes. Grace was diagnosed with Celiac Disease at age 4. Her mother was diagnosed, which led her to recognize the signs in her daughter. Check out celiac.org for signs and symptoms of celiac disease.

Grace learned at an early age to ask people, “Is this Gluten Free?” And how to check ingredients or make sure her food is handled properly, including washing her hands before eating, to avoid crumbs and other contamination.

When I was talking with Grace, she says the hardest part of having Celiac is not being able to eat Goldfish! Celiac kids often are unable to eat school lunches, or have pizza and birthday cake at birthday parties. While accommodations can be made, often the ignorance or occasional carelessness of food handlers can cause gluten free food to become contaminated with gluten. Gluten is a protein in wheat products that can not be properly metabolized by someone with celiac.

A big stigma of persons with Celiac disease is that BEING GLUTEN FREE IS OPTIONAL. People think it’s an alternative or healthy lifestyle, or just an allergy. Celiac disease is an autoimmune disorder. It is not a choice, or something that can be ignored or go away on its own. If left untreated, it can cause malabsorption, leading to many other serious issues such as anemia or fatigue.

Grace is our Tiny Little Hero with Celiac Disease. This does not define who she is. Grace wants to be a teacher when she grows up, but she says when she’s a teenager she’ll be a rockstar! Grace is already a rockstar to so many around her!

Let’s shout out to Grace for being our Tiny Little Hero with Celiac disease.

Check out the Celiac Disease Foundation for more information and ways to help. Grace’s mother recommended the Facebook Group “My Celiac Kids” for support.

Help us spread awareness! Share this story, tag a friend below who has Celiac Disease and follow my blog at gigisdiaries.wordpress.com and Sarah Lee Memories on Facebook and Instagram for more inspiration and adoration for our Tiny Little Hero’s!

Finding Joy

Today at church we discussed what our “hard” is. What do we struggle with. What can we learn from it? I listened intently, reflecting on my entire life. My hardships. It actually wasn’t till later that week that I realized my hearing loss is a hardship. I’m astonished. I have finally arrived! It takes a level of acceptance and embrace to not view your “hard” as hard anymore.

I was actually focused on a different hard, it was my 5 years of struggling with infertility that I was focused on. Sometimes the hardest trials are when we have righteous desires but the things we desire are outside of our control.

When life beats down on you, how do you stay positive? How can you have joy in the depths of darkness? I believe it’s important to learn from the hard times! You can do this by learning to identify things to be grateful for, things you CAN control instead of what you can not. It’s important to remain positive! This comes more easily with a grateful heart.

When I was about 3 years into the process of trying to get pregnant. I decided to stop sulking! I was done being sad. It wasn’t that simple, I was still sad! However, I shifted my thinking to a more positive outlet. I decided to start doing things that my pregnant friends couldn’t! I made a “Cradle List,” of things to do before kids came along. I tried several new things, like Sushi! Rock climbing, I went bungee jumping! We planned a trip to San Fransisco. These things were fun and distracting, they did not cure my heartache, but they helped me climb out of the black hole of despair, and rejuvenate my marriage and focus on being happy.

While struggling with infertility, I learned many lessons. I have learned EMPATHY. There are many stigmas and ignorant comments that occur when trying to get pregnant. I have learned to put aside judgements and criticism. There is enough anger and hate in the world. What we need is the benefit of the doubt. That each of us, MOST of us, are only trying to have the best of intentions. I’ve learned to not judge the man who mumbles, or the child that stutters or avoids eye contact. Or the mother with rambunctious kids. Only God knows what the story is behind the curtain.

Most importantly, I have learned not to be easily offended. I have learned that most comments have more to do with the person offending than the person who it’s intended to offend. In other words, it’s not ME they have an issue with. It’s usually an insecurity of their own. Instead of being offended or mad, and sometimes I still was! Most of the time, I tried to ignore it or figure out why they would say or do hurtful things. Almost always it is unintentional.

Most importantly, what carries me through any and all of my heartaches is my solid belief in my Savior, Jesus Christ.

“Jesus Christ is the source of peace…Whether they are personal struggles, family troubles, or community crises, peace will come as we trust that God’s Only Begotten Son has power to soothe our aching souls.” That Your Joy May Be Full, by Jean B Bingham.

Mother’s Day

My journey to motherhood was as frustrating as a fat kid and an empty package of Oreos. Whenever I was hugging the toilet with morning sickness, with my husband, Matthew, holding my hair, I said “its ok! It means its working!” Or “I prayed for this!” And even now, during the trenches of motherhood, with sleepless nights or endless days, I am eternally grateful for being a mother, and remind myself that as hard as it will get, it can never be worse than the alternative. There was a time that I never thought I would be a mother.

Matt and I were married on a beautiful and sunny autumn in November of 2010. Life was bliss. I do not know how we survived with our low income or our first trashy apartment, but we were the happiest of newly weds. Being 25, I was anxious to get started on our little family. We agreed to wait just a year, so I could finish my degree and get more situated financially. Approximately a year later, we stopped birth control and began to “try” to get pregnant. Practice makes perfect! Am I right? Well, I started to wonder about 6 months in, surprisingly not panicking, just concerned, curious, confused as to why we weren’t pregnant yet. I was soon told not to worry, doctors won’t even discuss the issue till you’ve been trying for about a year.

The year mark came and passed, smacking me in the face. All my worst fears were coming true. There were so many feelings, the fear of the unknown was the most horrific feeling of all. Maybe I was in denial or oblivious to thinking it could happen to me. How is this happening? I’m doing everything, WE are doing everything we should be, we were good church going folk, I knew I had room to improve, and I’ve never thought infertility was for sinners but suddenly it felt like I was being punished or did something wrong, when my whole life I always determined to be my best. It took me probably another 6 months before I could even utter the word “infertility”. I remember calling to make the appointment, I wasn’t sure how to say it, and broke down in tears afterwards. It was my first time saying it out loud, that awful word. Every time I heard it or said it, I could feel my heart being crushed. Infertility, barren, empty arms. At about 18 months of trying we started hormone therapy (Clomid) to make my body ovulate, took my temperature, peed on a stick daily, marked my charts, scheduled sex like it was a chore. All while avoiding baby showers and baby stores, started to cry inevitably with each menstrual cycle. Even when random songs came on, somehow triggering my maternal instincts.  I was convinced my life sucked. I was depressed. Matt was still hopeful, with his unwavering faith, and reminded me we needed to have faith in the Lord’s timing, and not our own agenda.

After 3 months of Clomid, my doctor recommended we see a specialist. The idea made me cringe. A specialist? Is this happening? Can we afford this?

Our first appointment with the fertility specialist, he asked us what it takes to make a baby. I was annoyed and in no mood to be patronized. I responded, rolling my eyes, “The stars and the moons to align!?” The doctor pondered a minute, chuckled, he said no and proceeded to explain how our reproductive system works. Having extensive medical knowledge, and taken several anatomy courses, I listened impatiently as he continued. He then explained which procedures were needed based on what we knew about my medical condition, which was nothing was wrong. As in, no missing ovaries, no plastic waste in my uterus. Everything was NORMAL. We then began the joys of IUI or inter-uterine insemination aka turkey baster. In summary, I began each cycle with a vaginal ultrasound to check my ovarian follicles and lining of the uterus, make sure we were good to go. I would then take an oral pill for 5 days, on day 5, I would do another ultrasound to check the follicles again. Then I would rush home to inject a shot of HCG hormones, which needed to be within an hour, and the clinic was an hour drive. No woman scorned like a woman stuck in traffic, trying to rush home, to make a baby! And not in a fun way.  Then, after the self injected hormone shot, the next day Matt and I would do the insemination procedure. After which I was to continue another hormone daily until further indicated.

We got pregnant with the first try. What a relief. I’m not broken, maybe it was just poor swimmers, or a temporary set back. We were so happy! I surprised Matt by putting little baby shoes on his plate at dinner. We went to our first ultrasound and heard the heartbeat. I was 6 weeks along. They told us the heartbeat was weak but definitely present. It was Fathers Day that weekend so we announced to both families with delight.

We went in for another ultrasound and there was no heartbeat. We had prayed together before going in. My symptoms had diminished, I felt a void. We lost the baby.

It’s a interesting feeling, to share your body, and then feel an absence. The hardest part for me was that it, he or she, wasn’t passing on its own, I had to take a pill. I had to schedule my own miscarriage. Devastated, we went to a hotel for the 4th of July. It was the worst wait of my life. It took roughly 12 hours once I decided to take the pill. I had some minor contractions and I sobbed for hours as it was happening and as it passed. I couldn’t look at it. I just sobbed.

We took a 6 month intermission and tried the same procedure 2 more times. Pills, shots, violating ultrasounds, and no luck. Each time grew harder and harder. Money was getting tight, emotions more intense, despair settling in. What if THAT was it? What if, even if I got pregnant, I was THAT person with multiple miscarriages? What if I can’t carry a pregnancy to term? I was crushed. I couldn’t help but wonder if we were forcing God’s hand, maybe we were never supposed to have children. Was my faith in God or in science? We discussed adoption, and what our options were. Our next IUI was in April, but it was a full blown snow storm that day. Angry at the world, I decided that was my sign and called it off. 3 yrs, empty arms, hormones and tears. I give up.

About 3-4 years into the process of trying to get pregnant, I decided to stop sulking! I was done being sad. It wasn’t that simple, I was still sad, depressed even. Heartbroken, devastated, but wanting to move forward. I shifted my thinking to a more positive outlet. I decided to start doing things that my pregnant friends couldn’t! I made a “Cradle List,” of things to do before kids came along. I tried several new things, like Sushi! Rock climbing, I went bungee jumping! We planned a trip to San Fransisco. I learned a new sport, soccer, and played on a co-Ed team. These things were fun and distracting, they did not cure my heartache, but they helped me climb out of the black hole of despair, and rejuvenate my marriage and focus on being happy.

A few weeks later, our friends were all going to Disneyland with their kids. Initially, I didn’t want to go and be reminded of how my close friends had multiple children, and we couldn’t even have one. Luckily, I swallowed my pride and went on possibly one of the BEST vacations ever. Sure, there were moments of sadness, but it was so fun being surrounded by the joy and happiness that comes with the magic of Disneyland that even we temporarily forgot our sorrows. Who cares if I was surrounded by other people’s kids? I adored these kids and loved seeing their faces light up with magic!

Shortly after being back to reality, it was Mothers Day. Ugh. Yet another day where I would have to listen to people talk about how hard it is to be a mom, or how the Lord “trusted them” enough to be parents. Dressed in my church clothes and ready to go, I began sobbing uncontrollably. I told Matt, “Please don’t make me go!” I stayed home, drowning in my sorrows, and an empty ice cream bowl.

The next day I got a call. I had a pregnancy scare, over Mothers Day weekend. Paranoia doesn’t cease with every little symptom, hormones and Dr Google handy. I wasn’t even the slightest bit excited, just felt like I had the flu but I wanted to rule it out before taking medicine. I had submitted a blood test on Friday, since I worked at a doctors office. The phone call was my fertility clinic, calling to tell me that I was pregnant. My heart stopped. My initial reaction was they had the wrong girl. No way… Me? But… I canceled my IUI, I’m not on hormones, did I even Ovulate this month? My thoughts were racing. They proceeded to tell me to take my hormones and arranged appointments to have an ultrasound. I actually had to call back the next day to repeat all the details because I was in total shock on that phone call.

I sobbed the whole drive home. I panicked. Is this really happening? What if… I can’t handle another heartbreak… My thoughts kept racing. When I got home, I realized I had less than an hour before my husband was coming home. I was still crying and completely unprepared for this shocking news! I wanted a cute elaborate announcement, so I scrounged around my house trying to find something cute. I found the former baby shoes, not ideal but short on time, I shoved them in my kitchen drawer. I started to make dinner since I was starving! Matt came home, hugged me and asked me to bless the food. As I began to pray, I lost total control of my emotions. All I could say was, “Thank you Heavenly Father for answering our prayers.” I couldn’t bless the food or even speak. Matt said, “Amen,” for me and then just stared at me. I smiled through my tears and said, “I’m pregnant!” And continued sobbing. Matt was shocked, big eyed and jaw dropped, he said “REALLY?!”

It was a spontaneous pregnancy. That’s what the fertility clinic calls it when no intervention was needed. I was 2 weeks along, so we proceeded with the scheduled ultrasounds and hormones. We eventually “graduated” the Fertility Clinic at 9 weeks along. I never needed hormones or any other interventions during the remainder pregnancy. I held my excitement until 20 wks, when we announced at a gender reveal party. That was the moment I actually realized it was happening for us, finally happening. Even though I had horrific morning sickness, every episode brought relief. Every day was still s surprise that baby and I were both healthy.

After 41 weeks and 36 hours of pitocin and not progressing past a 5 dilation, I delivered a baby boy via Caesarian. Sweet Caleb Matthew Rogers.

My OB laughed when less than 24 hours after giving birth, we asked when we could get pregnant again. She said we were the FIRST to ask that question so soon.  Needless to say, she did not recommend any form of birth control, simply reminded us to be careful until I was mentally ready and able to handle another baby. We got pregnant again before Caleb turned 1. Totally shocked, again, at another spontaneous pregnancy. We now have two beautiful boys under 2.

Once again, Heavenly Father came through with His promise. He listens and answers our prayers. It may not be on an earthly time table, but He does answer prayers. Every family comes in different shapes and sizes, every child is a miracle! My testimony of faith and prayers are strengthened constantly. I may never know why we had to wait. Answered prayers don’t always mean getting exactly what you want, and when you want it. I regret being weak in my trial, I let my fear overrule my faith. I know that my Heavenly Father is there, He is aware of my needs and wishes. He knows exactly what I need and I am stronger because He pushed me to become so.