#sicklecellbetathalassemia

September is #sicklecellawarenessmonth. My little #sicklecellwarrior and his love for taking photos. He now knows how to set up his own photoshoot. My only responsibility is to lower the ring light. 🤣🤣🤣 And to make sure he doesn't post anything. 🤣🤣🤣 @hannycutz thanks for keeping his hair clean and for allowing him to feel confident when sitting in your chair. #sicklecellbetathalassemia #sicklecellawareness #somethingsabouther #stahfamily #unapologeticconversation #blackboymagic #blackbarbers #hannycutz (at Phoenix, Arizona) https://www.instagram.com/p/CE0RS34nejy/?igshid=1wo5tavaccmck

I know this is an unpopular opinion in the sickle cell community. Let me share a little history first. *disclaimer I am not a doctor. Just sharing my son's journey with sickle cell. __ Ash has sickle cell beta-thalassemia. If you've been following me for a while you'd know that Ash was experiencing random fevers. One minute he was happy go lucky then the next minute he's spiked a fever. The fever appeared out of nowhere. It was extremely frustrating because the doctors couldn't tell me why. So every few months we would be in the hospital for 48 hours which is enough time for his results to return with no bacteria in the blood then they would send us home. __ In January Ash had his gallbladder (unpopular opinion) removed due to complications. Ever since then he has not had one fever. He is also taking hydroxyurea, folic, and vitamin D. I share this to say, I've read where people say gallbladder removal isn't necessary as long as the sickle cell warrior eats right, etc. In Ash's situation, it seems he needed to have his gallbladder removed. His fevers started when he was three months old. I know doctors don't get it right all of the time. I know that everyone's body is different. Ash's story is different because it is related to an unpopular opinion. Maybe it's a coincidence that his fevers subsided after his gallbladder was removed, but for now, it seems like there is a correlation between his random fevers and removal of his gall bladder. The lesson in this story is sometimes the things we think aren't related to our healing are directly related. We have to be open to what's unpopular and understand sometimes an using an unpopular opinion could be in our best interest. #somethingsabouther #stahfamily #sicklecellbetathalassemia #sicklecellwarrior #sicklecellcare #gallbladdersurgery #blacksoul #blacksons #lovemyson❤️ #unapologeticconversation (at Phoenix, Arizona) https://www.instagram.com/p/CD_qa1VHXfw/?igshid=ewvekhxemjlp

When your kid poses better than you. 🤣🤣🤣 He loves taking photos. I don't know if I'm going to have another model on my hands, but I will enjoy our photo sessions while they last. #somethingsabouther #stahfamily #sickler #sicklecellawareness #sicklecellbetathalassemia #sicklecellwarrior #blackboysrock #unapologeticconversation #unapologeticblogger #Azblogger #azlocalbusiness #boymomadventures #ilovedc #phoenixbloggers (at Avondale, Arizona) https://www.instagram.com/p/B8Xfd9Cn1RD/?igshid=1bxknrp8nacfj

The life of a sickler. Tomorrow Ash has to be admitted to PCH in preparation for a dental procedure on Friday. Since he has #sicklecellbetathalassemia and his hemoglobin level is usually around 6.5 (on hydroxyurea) he has to get a blood transfusion, which hopefully raises his level to an 8.0 or higher. The purpose of the blood transfusion is to reduce the risk of a crisis. Between the combination of his low hemoglobin levels, oxygen levels and anesthesia (put to sleep), it could bring the onset of a crisis. Hopefully, we get out on Saturday. Please keep him in your thoughts. #somethingsabouther #sicklecellawareness #sicklecellcare #sicklecellwarrior #caregiver #azblogger #avondalearizona #stahfamily #unapologeticconversation #unapologeticblogger #unapologeticallyimperfect #blackboysrock #momentrepreneur #alchemytribe #unapologeticliving #boymomadventures (at Avondale, Arizona) https://www.instagram.com/p/B6PR2IUHqNb/?igshid=1jr0zxs0l023p

Random fever of 101.7, but still as happy as can be. 🥴🥴🥴 #sicklecellawareness #sicklecellbetathalassemia #somethingsabouther #sicklecellcare #motherbear #lovemyson❤️ #sicklecellwarrior #slightcough #motherandsonbond #coldweathersucks #thingswetakeforgranted (at Phoenix Children's Hospital) https://www.instagram.com/p/B5l5GgnHmVz/?igshid=1u3013rg62xtz

Me: Ash how was your day? Ash: . . . . . . #somethingsabouther #fouryearoldproblems #blackboyrise #sicklecellwarrior #sicklecellbetathalassemia #iguesshehadalongday #toddlerproblems #stahfamily #heisfunny #Azblogger #phoenixarizona #phxblogger #avondaleaz #blacksun (at Avondale, Arizona) https://www.instagram.com/somethingsabouther/p/BxJaCNVlsU4/?igshid=1leahsekvdm44

Grand Rising Beautiful Souls __ I spoke with my son's hemoglobin doctor about ordering him a medical alert bracelet, she agreed that it should be done. I also confirmed the same with my partner since he has a history in the medical field. __ Being the mother that I am, I couldn't buy a regular bracelet. I was looking around and found @americanmedicalid. They have some of the cutest bracelets. He loves trains so I ordered a band with trains on it. There will be times when he is not with me so the way that I see it - it's better to be safe rather than sorry. The bonus is it will grow with him. When he's grown out of the train phase we will see what else American Medical ID has to offer. #americanmedicalid #somethingsabouther #sicklecellawareness #sicklecellbetathalassemia #sicklecellwarrior #meditatewithme #heisgrowingup #sicklecell #grandrising (at Avondale, Arizona) https://www.instagram.com/somethingsabouther/p/Bv9eUkuFI4p/?utm_source=ig_tumblr_share&igshid=qrdmsbhdi558

Today Phoenix Children's Hospital observed World Sickle Cell day. It was a full room. I didn't realize there were so many caregivers and #sicklecellwarriors in Phoenix. It showed that I need to get and connect with others. It would be helpful during those stressful moments. #sicklecellbetathalassemia #somethingsabouther (at Avondale, Arizona)