MOMIN

lifestyle & family blog

SICKLE CELL AWARENESS

It’s National Sickle Cell Awareness month!

LEARN + PLAY, SICKLE CELL AWARENESSSamantha Gordon1 Comment

Sickle cell disease is near and dear to my heart because it affects my daughter, Mckenzie. During this month, the purpose is to focus the attention of people around the world on the need for treatment and continued research. 

Sickle cell disease affects approximately 100,000 people in the United States.

To refresh your knowledge—sickle cell anemia is a disorder of the red blood cells. This is caused by an inherited abnormal hemoglobin (the oxygen-carrying protein within the red blood cells.) The abnormal hemoglobin causes sickled red blood cells. The sickle-shaped cells can also stick to vessel walls, causing a blockage that slows or stops the flow of blood.

Every child is different so it is important to learn the signs and triggers that affect your little one. I wanted to share in home care that my family and I do to maintain Mckenzie’s overall health and minimizing the number and duration of crisis.

Monitor fevers

When Mckenzie is showing signs of a crisis, we immediately check her temperature and hydrate her. Pedialyte juice/ popsicles are great. Infant Tylenol or other fever reducers are also what we use to keep her fevers at correct temperatures. Extremely cold or hot temperatures can trigger a crisis. A fever of 101 or over could be a sign of a more serious complication. It’s vital that you contact your child’s pediatrician and/or hematology doctor.

Managing pain

A child with sickle-cell disease can experience a number of different things during a crisis. Like, showing discomfort (throbbing, sharp pain) throughout the body, swelling in hands and feet, high fever that won’t break, and fatigue. Pain-relieving medicine reduces these discomforts. Depending on the severity of the crisis, along with her daily medicine, we use anything from Tylenol to Ibuprofen. (prescribed specifically for Mckenzie from her pediatrician) Also, warm baths and rub downs relax Mckenzie.

Preventing infections 

This is for children all across the board. Make sure that anyone who comes in contact with your child is germ free! Teachers, caregivers, family members should be washing their hands several times per day. Get your little one in the routine of doing so as well. Children with sickle-cell disease are more prone to illness or something/someone contagious. Immunizations should be kept up to date.

Maintaining a healthy lifestyle 

One of the key practices is introducing Mckenzie to healthy eating and activities. A balanced diet/fluids have been an ongoing process, at times Mckenzie has no appetite, which can be expected at times. When Mckenzie has no appetite we try to incorporate fruit and veggie smoothies. (Using our baby bullet) It’s so important to know your child (which can change from moment to moment) and do what works for them. Along with daily vitamins, children with sickle-cell should incorporate these foods in their diet: a lot of vegetables—green leafy vegetables especially, fresh and dried fruit, grains, calcium rich foods(yogurt), protein(lean meat/fish), orange juice, fruit juices with little to no added sugars, water, water and more water! Mckenzie has encouraged our family to change our diet as well. It has been great so far.

Be there emotionally 

During a crisis, Mckenzie needs a little extra TLC. It’s important to just be there and be in her presence. Mckenzie just turned two, so she can’t fully explain to me what exactly is hurting her during a crisis. I do my best to determine her discomfort levels by asking her point to body parts where it hurts and often times just simply knowing something is different about her. One on one time with her(quiet cuddling, movies, stories) make all the difference.

Catch some Z’s

During and after a crisis, it takes a toll on a child with sickle-cell. Sleep helps with repairing and healing your heart, blood vessels and brain. It’s so important they are well rested for the body to regroup. A warm bubble bath and rub down will soothe your little one into a great sleep.

The strongest little princess I know!

SICKLE CELL AWARENESSSamantha Gordon2 Comments

I’ll be honest, I contemplated on sharing this part of my life. Mckenzie’s father, Keith, thought it would be amazing for me to share just how strong our little princess is. Not only that, but how we can be an encouragement to other parents, caring for children who have health issues.

Mckenzie was diagnosed with sickle-cell anemia when she was a few weeks old. Sickle cell anemia is a disorder of the red blood cells. This is caused by an inherited abnormal hemoglobin (the oxygen-carrying protein within the red blood cells.) The abnormal hemoglobin causes sickled red blood cells. The sickle-shaped cells can also stick to vessel walls, causing a blockage that slows or stops the flow of blood.

When Keith and I found out that our princess had sickle-cell anemia, I was crushed. This disease is inherited from a persons parents. Keith and I both have the sickle cell trait. As a mother, you care for your child the minute you find out your pregnant. You don’t want any hurt, harm or danger to come up against them. I felt at fault. I felt like I didn’t do my job as a mother to not let anything happen to her.

A person with sickle-cell anemia can develop a number of health problems. Most common, sickle cell crisis. This is attacks of pain anywhere throughout the body. Also, swelling in the hands and feet, stroke, anemia, bacterial infections, fatigue, acute chest syndrome, kidney problems, and pulmonary hypertension. Although treatment can help, there is no cure for sickle cell anemia.

The doctors explained to us the risks of Mckenzie having sickle-cell anemia. They told us that she wouldn’t be able to participate in certain activities like other kids, she wouldn’t be able to eat certain things like other kids, and that the crisis would be often.

Giving all glory to God, Mckenzie has only had two crisis since she’s been born that led her to the hospital. One crucial visit having her to get a blood transfusion and she was out the hospital in the next two days. She’s the strongest little girl I know. You could see in her face she was hurting, but her spirits remained HIGH. Many moments she was probably checking on us, to make sure we were straight lol. At every doctors appointment we go to, they can’t believe how great her blood results are. Every check up she has, she passes with flying colors. She hasn’t done an activity yet that we have to avoid. She’s the total opposite of what the doctors say she’s going to be like. You wouldn’t even be able to tell she’s fighting sickle-cell anemia!! When I speak about how good God is, I’m not speaking out the side of my neck! I’ve seen him turn her whole situation around and heal my princesses body.

I’m a mother that has a daughter with sickle-cell anemia, and I’ve come to grips with it. It’s not easy knowing your child has to fight, while you can do nothing about it. Mckenzie is one and takes this like a G! I could use a few pointers from her. Mckenzie has taught me to be calm through whatever. I’m so excited to be an encouragement for other parents going through.

Even if you don’t have a child with sickle-cell. It’s always great to be educated. September is National sickle-cell awareness month. In the United States, most of the people with sickle-cell disease are African-American. About 1 in 13 African American babies are born with the sickle cell trait. About 1 in every 365 black children are born with sickle cell disease.

So, I know you were wondering how you can support parents and children that deal with health issues..here’s how…

keep the family in prayer

promote and pursue a healthy lifestyle

educate yourself and others

support and love on the family

listen! Sometimes parents just need an open ear

spread positive vibes and be a light

Oh yea! Before you go, let me brag about my daughter real quick..mind you, she’s 1! She knows all of her features and body parts. She can count to five. She knows about 3 different colors, she knows what sounds different animals make, she knows how to work the remote lol and she loves to read(she makes up her own stories..regardless of what book it is lol) she already knows how to care for her little brother by feeding and soothing him. She loves all fruits and vegetables, thank goodness! And lastly, she loves to tell everybody what’s hot and cold.