Tyson’s Health and School Update

Well, Tyson has been in Kindergarten almost two months and I couldn’t be more proud of him. As you all know he and Jordyn have been at home with me since they were born. Tyreke and I felt it would be best for their health if they stayed at home and because I’m a former educator, I knew homeschooling wouldn’t be a problem. 

Before school started Tyreke and I were pretty anxious about Tyson starting school. Not only were we concerned about all the new germs he would be exposed to, but we were really concerned about his teacher not recognizing certain triggers that could potentially throw him into a crisis. Needless to say we did a lot of praying and asking God to guide us through this process and to be with the teachers and administration at Tyson’s school. We chose to put him at the school my husband used to teach at because not only did we know a lot of the staff, we know they are amazing at loving and caring for the children.  We understood that with Tyson having Sickle Cell he needed to be in a school that wouldn’t mind going the extra mile. 

About a week before school started we found out that they placed Tyson in a classroom with a teacher that has a daughter with Sickle Cell. I was so overwhelmed and appreciative that I burst into tears. For the administration to think about us enough to make sure he was with someone very familiar with the signs of pain and the many complications Sickle Cell can bring, was nothing but a blessing. 

Tyson loves school and looks forward to going every day! He has had a very smooth transition from being homeschooled academically, however that has not been the case for him health wise. The very first day he came home with his hands hurting and it seems like there’s been a new pain crisis every week. He has even had to miss two days already, one from a low grade fever and one from a pain crisis. He is extremely tired all the time and he’s struggling getting adjusted to this new schedule. Heck, we all are. I’ve been trying to figure out what works best, trying new things and switching up our routine. And it seems, giving him a bath as soon as he gets home is helping with the germ issue. But now I’m trying to figure out what I can do about these crisis. I will say they aren’t nearly as painful as the ones he used to have and they only last a day if that. Also these last three weeks he hasn’t had any pain so hopefully the pain really was his body going through an adjustment period. I’d still love some advice, so if any of you have kids with Sickle Cell already in school I’d love to hear the things you all are doing to keep your children at their best health. 

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Vegan Lifestyle

Well guys the Wesley’s are VEGAN!!! For the past ten months my family has been vegan and I must say it has had an excellent impact on not only the kids’ health but mine and my husband’s as well (he’s lost over 35lbs).

Our journey to becoming vegan started back in 2017 after Tyson had that crisis and was in the hospital for 4 or 5 days. After that I sat down with my husband and told him that I thought it would be best for the kids’ health if they stopped eating meat. We believe we are fighting Sickle Cell as a team, so my husband and I decided to go vegan as well. I was aware that meat causes inflammation in the body and because of that it can affect the blood vessels and affect the flow of blood. I also knew we loved meat (especially me being from the Midwest, I could live off meat and potatoes) and would have a hard time cutting it out completely cold turkey. My goal was to be completely vegan by August of 2018. That way I would have just about a year to say goodbye to my beloved meat. So I started gradually by only cooking meat for dinner. Then I cut back to only cooking it a few times a week. We did this for a while and eventually I stopped cooking meat altogether. We did however still eat it if we would go out to a restaurant, or to our friends and family houses. But I began to notice that after not eating meat for a few weeks or even a month and eating it again the kids would have pain crises. So in September of 2018 we stopped eating meat completely. Yeah I know I missed my goal by a month, I told y’all that this was hard for me.

The kids went pain free for several months but, when the weather turned cold in January both of the kids had a crisis at the same freaking time. I was a little discouraged at first I can’t even lie. But then I began to notice that not only were they not in as much pain as before, their crisis were only a couple of days as opposed to 6-8 days. Again last month Jordyn had another one but it didn’t even last a full 24 hours. Tyson has been having them more in places he’s never had them, like his hands, the bottom of his feet and even shoulders ever since he started playing drums, so my husband and I are trying to figure out exactly what to do about that.

Other things I’ve noticed since going vegan is that the kids have more energy, even though I didn’t think that would be possible. My husband and I are definitely feeling a lot healthier as well. I have had more energy too. I used to get so tired around the middle of the day I could barely keep my eyes open but that almost never happens now. I’ll be sure to keep you all posted on how our vegan journey is going, but for more specific details on our diet go the Wesley Diet page here on my website. I’m also thinking of sharing some of my vegan recipes, so leave a comment below if that’s something you’d be interested in.

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I’ve Been Exhausted

I’ve been exhausted! I’ve been exhausted physically, emotionally, spiritually, everythingly. Yes I definitely just made a word up but stick with me on this. Having two children with a chronic disease is so hard. I’m constantly giving vitamins, monitoring water intake, reading labels, trying to make vegan food fun and delicious (oh btw we are vegan now, more to come about that later), homeschool them and so much more all while trying to make sure they live “regular” lives. Don’t get me wrong I love being a mom and I love being a stay at home mom even more so I’m not complaining. I know my babies are blessed and we have been able to avoid most of what Sickle Cell can really do to the body. I am so grateful for our experiences and the lack of experiences we’ve had or didn’t have. But I am tired! 

I want We Eat 4 Life to be helpful and inspiring but I don’t think I can do that without sharing with all of you how hard this journey has been for me. There are so many things I struggle with, mostly unanswered prayers and questions but the weight of it all is extremely exhausting. I am slowly making changes in my routine to help me manage it all much better because We Eat 4 Life is so much bigger than me or even my children. I want to help everyone with Sickle Cell live a life with minimal pain/complications. 

So with all that being said I’d love some feedback on things you guys would like to see more of. Maybe see some new things on here I haven’t done before. Please send me your ideas and thoughts so I can rebuild WeEat4Life to last a lifetime. Looking forward to hearing from you all. Thanks for all the love and support. 

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Family Update

Last year was a whirlwind of events for our family. We experienced some really high moments and some really low moments. We received amazing support from our friends and family. But we also had a couple heart breaking, faith shaking (but never broken) moments.

At the top of the year in January, Tyson was rushed to the emergency room with a pain crisis for the first time in his life. Every other crisis before had never been so severe that we couldn’t handle it at home. So needless to say my husband and I were very nervous. When we arrived at the ER and told them he was having a crisis and that this was his first time needing to come into the ER for pain the doctors were baffled. He was quickly attended to and given Toradol (a stronger Motrin) and Hydrocodone. After about 30 minutes, he was feeling much better and by the grace of God we were able to go home that night.
I would like to add that it was a little bit of a battle with the doctors on what medicine to give him. They initially wanted to give him Morphine but I wasn’t comfortable with that, so they begrudgingly gave me other options. If you don’t feel comfortable with something the doctors are doing or saying, you have the right to speak up and ask questions. No one knows your babies like you do!

Unfortunately, that was not Tyson’s only time going to the ER last year. In June a few days before Father’s Day Tyson was showing signs of a stroke. We rushed him to the hospital. When we arrived they immediately ran a bunch of tests on him and gave him a MRI. Luckily, the MRI didn’t show he was having a stroke but the doctors still weren’t sure why his speech was slow, they kept us a few days (yes, we spent Father’s Day in the hospital) to run more test and to do an MRA to get a better look at an artery that looked concerning to the doctors. After running a ton of tests, they determined that he was having a crisis in his jaws and that’s why his speech was slow/slurred. Five days later we walked out of that hospital with normal TCD results and full of joy.

Last year wasn’t all bad though. We received a tremendous amount of support from our family and friends at the Sickle Cell awareness walk in April. We had about 20 people come out and support us and it absolutely melted my heart to have so many people show my babies that kind of love. Jordyn also had a really good year, not one ER visit and her hemoglobin went all the way up to a 10.2!! And after that mess in June with Tyson we didn’t have to take him back to the hospital for any kind of emergences. We did start Tyson on an “herbal medicine” called Evenflo but I’m not sure if it has made any major changes for him, I’ll be sure to keep you posted on that.

Right now, the kids are doing wonderful. I’m doing my best to keep them bundled up in this cold weather, I am still giving them all their vitamins & minerals and folic acid every day. Jordyn’s hemoglobin did go back down to a 9.5 but I am hopeful that it will go back up again. Tyson’s hemoglobin went up to a 10.8!

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Our Story Pt. I

About a week after my first child was born my husband and I got some of the most devastating news ever. “Your son has Sickle Cell Disease SS”. In that moment I understood it was bad, reflecting on a project I had chosen to do in the 8th grade on Sickle Cell Disease. But I didn’t realize the magnitude in which this would shape and change not only my son’s life, but mine and my husband’s as well.

Right away the doctors wanted to start Tyson on medication every day twice a day and an additional vitamin to help with the reproduction of his red blood cells. And so we followed the doctors orders and quickly noticed that the medicine was causing him to poop constantly. I mean up to 8 times a day. When I expressed my concern all I got in return was ” Are you sure it’s not anything else? The medicine is known to help with bowel movements but nothing like that.” So me being the very attentive mother I am and knowing for a fact that it was without a doubt the medicine I started giving it to him only once a day. And sure enough he stopped pooping so much. I think this was the first time I realized that I would have to do things a little different than the doctors wanted me to in order to make sure my son wouldn’t have the typical Sickle Cell experience.

So right away I started doing research. I mean I read anything I could get my hands on about Sickle Cell Disease. And I’m not going to lie it was scary. From constant blood transfusions to early death. So immediately I started looking at cures. I knew from my project back in the day that there wasn’t one, but I was hoping that because so much time had passed that maybe they had found one. Unfortunately the only cure they had discovered was a bone marrow transplant. And in order to have a high risk of success it would need to be a sibling. Well that wasn’t happening anytime soon (so I thought) so I moved on to other options. The only thing that seemed promising was food choices and I had already decided to breastfeed my son.

So at our 3 month doctor visit (we go every 3 months to check his blood and run other tests) my husband asked about food and how it could play a part in helping Tyson’s experience with Sickle Cell Disease. And they told us “just eat a healthy balanced diet like anyone else.” Now I know what your thinking… Three month old babies can’t eat food! And you are right but we wanted to be prepared, extra prepared. So when it came time for him to eat, I decided to make his baby food at home. All organic!

At his 6 months check up Tyson knocked it out the park! His hemoglobin was still high (around 10.8) and he wasn’t having any complications. So again my husband asked about food and diet and how that could improve or positively affect Tyson’s experience with sickle cell disease. And again the doctors said “he just needs a healthy balanced diet like anyone else.” So I continued to make Tyson’s organic food and as he got older my husband and I decided to add or should I say not allow him to eat white sugar and or fried foods. And he continued to have a perfect bill of health.

Well at ten months almost eleven months Tyson got a sudden fever. And if you know anything about Sickle Cell Disease, that’s what you don’t want. And I couldn’t give him Tylenol and let him rest because it could be a sign of something really serious. If any child with sickle cell ever gets a fever of 101 or higher that is an automatic hospital visit. And I don’t mean a simple stick your tongue out and check your ears kind of visit. No it’s blood samples, IV’s, X-rays, catheters, test after test after test! And after being in the hospital for three days the doctors couldn’t find anything wrong. My mother said it was because he was teething but the doctors didn’t think so. They also couldn’t tell me what the heck it was and because he didn’t show any sign of being sick, I believe it was teething too.

Tyson continued to have a great bill of health. And in the midst of all this… I got pregnant!

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