December 16th Pt.2

That night I slept in ICU with Jordyn and Tyreke slept with Tyson on the 5th floor. My mom stayed with me so I could go back and forth between the kids’ rooms. I needed to know what the doctors and nurses were doing but I couldn’t be in two places at once, so I thank God for my mother dropping everything to be there and support me, Tyreke, and the kids. 

Because Jordyn had been unresponsive, she had lost some of her motor skills and needed to be put on oxygen. She actually stayed on oxygen almost the entire time we were at the hospital for those nine days. 

The next morning Jordyn’s motor skills were already improving by the time the doctors came in to check on her. They told me that both of the kids would need to have blood transfusions. Jordyn also needed a plasma transfusion because they needed to run some more tests on her, but her body wasn’t strong enough for the tests. They also told me that one of the tests would be a spinal tap but because her oxygen was so low that she needed to be put on a ventilator in order to perform this procedure. To say I was scared would be an understatement but I had this constant feeling that God was going to take care of my babies so I trusted in Him and the doctors and said ok to all the tests because at this point, they still couldn’t tell me what was wrong with my baby. 

While all this was happening to Jordyn, I was told that the blood transfusion Tyson had gotten that morning didn’t boost his hemoglobin up high enough (and it still to this day hasn’t gone up to where it used to be before all this happened) so he would need to get another one. The doctors also informed me that his spleen was enlarged. Now for those of you that don’t know this is actually really common in children with sickle cell and for Tyson to have been just a few days away from turning 6 it was really good that this had never happened to him before. I know quite a few children with sickle cell ss that have had to get their spleens taken out before the age of 5, so even in that moment I was able to count my blessings. 

A Splenic Sequestration is when the sickle cells block the blood vessels in the spleen and blood can’t move freely through and it causes it to become enlarged. It is very dangerous and the doctors were hoping that another blood transfusion would help Tyson’s spleen to go back to normal. Thank God after a few hours his spleen started to go down and his hemoglobin slowly started to come up as well. 

After all the tests had been run on Jordyn, MRI, MRA, Spinal Tap, and so many others with her blood and nasal passage. The doctors came back to tell me they thought it was the flu. They had already determined it was the flu for Tyson on the first night we were there but the flu test they did on Jordyn had come back negative the first time. The doctors still were not ruling out meningitis, but those results hadn’t come back yet because the spinal tap results needed more time than all of the other tests, so I was only told she had the flu for sure. 

The ICU doctor told me that he had only seen one other case like Jordyn’s. It was a little girl a few years older than Jordyn that didn’t have sickle cell but for some reason the flu caused her to have seizures and be unresponsive. He couldn’t tell me anything except that they were going to give Jordyn a bunch of antibiotics in hopes that it would help her to recover. 

Once she was able to get off the ventilator, they had to put her back on oxygen because she still wasn’t able to breathe on her own very well. But she was talking more and her motor skills were also improving. 

By this time, we had a massive support system at the hospital with us. Our family, our friends and even our church family had come through FULL FORCE with love, prayers, food and even financial support. I have no idea how we would have made it through without the support of our village. 

All of this happened on December 17th. The 18th was just a bunch of monitoring and running back and forth from room to room for me and Tyreke making sure we spent as much time with each child as we could. 

When we got up on the 19th the doctors told me Jordyn was doing so good that she could leave ICU. I was so happy to get off that floor because I felt like we were one step closer to going home. Or so I thought. 

The doctors were kind enough to give Jordyn the room right next to Tyson and I was so happy to have my babies close to each other again. They still haven’t seen each other (except on FaceTime) and this was the longest they had been away from each other their entire lives. So them being just a room away from each other made me feel so much better. 

A few hours after Jordyn was moved, Tyson’s liver started to shut down on him. His spleen had gone down almost to its regular size but for some reason his liver wasn’t working properly. The doctors told me that he needed to be rushed to get some tests because they were concerned Tyson would need to be moved to ICU now. I called my mom and we just started praying. The kids hadn’t been on the same floor for a full day yet and now they were saying they would have to be split up again. 

I went with Tyson while they did the ultrasound on his liver and held his hand. His liver problems were causing him pain and all I could think was Lord please don’t let this turn into a pain crisis. After running the test and speaking to the liver specialist we were told that Tyson wouldn’t have to move to ICU yet but they needed to monitor him very closely to make sure things didn’t get worse. 

And just like that, I felt that God was still blessing us. To say that I was being optimistic would be an understatement. I knew without a shadow of a doubt that God was going to bring us out and as long as I held onto my faith, we would be ok.

Read more

December 16th

You know I never thought it would take me an entire year to write this, but here we are a year later on the other side of two near death experiences and I’m just now ready.

It all started the third weekend of December 2019. My mom was watching the kids and called to tell me that both of them seemed to be under the weather suddenly. I immediately thought about the phone call I had gotten the Thursday before from Tyson’s teacher saying one of his classmates had the flu. Tyreke and I both decided that it would probably be fine to let Tyson go back to school because that child wasn’t going to be there and it was only one day left in the school week anyway. Well boy were we wrong. 

Sunday night after picking the kids up from my mom’s house Tyson and Jordyn just didn’t seem like themselves. They weren’t running around and playing like usual and they both were really whiny. In the middle of the night they both started crying about how bad they felt so I put Jordyn in the bed with me and Tyreke went to sleep in the guest room with Tyson. They both had pretty rough nights with Tyson having diarrhea and Jordyn having a low grade fever. 

The next morning neither of them really had appetites; they both were extremely sleepy and by then Tyson had a fever too. I told Tyreke as soon as Jordyn wakes up for real and not just to drink water (because that’s what she was doing all night) then we were going to take them to the hospital. 

While the kids were sleeping, Tyreke and I took some time to talk and just be in each other’s company for about 20 minutes. He gets up to go check on the kids and the next thing I hear is him screaming. SHAKEIRA, SHAKEIRA COME QUICK! I jumped up and ran to the room to see Jordyn in our bed knocked out and she had soiled herself. Now if you know me then you know I potty trained both of my children before the age of two and Jordyn has never had an accident since then. So I was immediately concerned. 

We tried waking her up and calling her name but she wouldn’t respond. I had Tyreke bring her into the bathroom so I could give her a bath. The entire time I was saying her name and asking her to talk to me but she only opened her eyes to look at me, she couldn’t speak. I sat her on the toilet to see if she needed to use the restroom again and she started shaking uncontrollably. I started screaming and called for Tyreke’s help. By that time he had already woken up Tyson and was getting him ready so we could head to the hospital. I gave Jordyn a bath but she still wasn’t talking to me. I was asking her my name and even her own name but she couldn’t tell me anything, she could barely stand and definitely couldn’t walk. We hurried and got dressed and left the house in a rush. 

We only live about a 15 minute drive from the hospital but Tyreke was zooming so I just knew we would get there in like 10 minutes. But then as he was changing lanes to get off the exit our car STOPPED! He tried to restart it and nothing happened. Tyson was in the back seat looking so sick and helpless and Jordyn was still unresponsive with her head just hanging to the side, eyes barely opened. Tyreke jumps out the car and starts waving down the passing cars trying to get help. I’m on the phone with 911 but I’m screaming so much the lady is having a hard time even understanding me. 

Out of nowhere this man, who I later find out is named Jose, stopped and told Tyreke he would take me and Jordyn to the hospital. Apparently he was on his way to see his grandson being born so he was headed in that direction. I hung up on 911, grabbed Jordyn out of her car seat and jumped into the front seat of the mans pick up truck. Tyreke stayed behind with Tyson because there wasn’t enough room for all of us. 

Jose gets us to the emergency room in no time. He was driving like he knew us and completely understood what we were going through. I jumped out of his truck with Jordyn in my arms and said thank you as I was running into the emergency room doors. 

When I got inside all I could do was yell out “ SOMEBODY HELP ME MY DAUGHTER IS UNRESPONSIVE AND SHE HAS SICKLE CELL”. They rushed us to this room and laid her on this big table. Nurses and doctors and so many people surrounded Jordyn that I could barely see her. I called my mom to tell her what was happening and texted my ride or die sister praying crew. The doctors were hooking Jordyn up to all these different IV’s and trying to get her to talk. She started grabbing at all the cordes and was screaming no no no. I was a little relieved because up until then she hadn’t spoken any words but I was still scared out of my mind.  I was trying not to show it because I felt like I needed to be in control to be the best for Jordyn and to make sure I knew exactly what they were doing to her. They did X-rays and rushed her down for a CAT- scan. By that time they have given her some kind of medicine and a ton of fluids. I looked up and my mommy came busting into the room. I have no idea how she got back there or how she got to us so fast but that didn’t matter. She was crying and asking about Tyreke and Tyson. She immediately anointed Jordyn and I told her I needed her to go get Tyreke and Tyson.

Tyreke and Tyson were still on the side of the highway this entire time. He was trying to call people to see if they could pick them up and he was trying to get the piece of crap (I want to say something else but my mommy is going to read this) car towed. Because we left the house in such a rush we forgot to pack the kids bags, so Tyreke was on the side of the road with nothing. We always and I mean ALWAYS pack a back for the kids. It consists of water, snacks, hand wipes and Clorox wipes. From what Tyreke told me, Tyson was extremely thirsty and looking sicker by the minute. My mom eventually made it to them and brought them to the hospital. 

By the time Jordyn got put into a regular room in the ER, Tyson was already in a room, so they put them in side by side rooms. My village started showing up even though I told them not to. They didn’t  listen and I’m happy they didn’t. It felt good seeing their faces. The doctor finally came in after running tests on both the kids and he told me he thinks Jordyn has meningitis and also had several seizures. He also said she needs to be moved to ICU. I walked over to Tysons room and he told me Tyson also has to be admitted but he doesn’t have to go to ICU. However it looks like he will definitely need a blood transfusion because his hemoglobin was extremely low. 

My mom was going back and forth from room to room praying over the kids and just before we were about to go to ICU with Jordyn I looked at her and asked her one more time if she knew who I was. She opened her eyes and said “ Mommy”. I broke down, I wasn’t sure if I’d ever hear my baby say that again. I went over to Tyson’s room to have Tyreke ask her the same thing and she recognized him too and my mom. I think it was in that moment that I knew no matter what we were about to go through God was going to be with us and we would make it out on the other side of this. All four of us!

Read more

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. 

Read more

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.

Read more

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. 

Read more

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!

Read more

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!

Read more