Benjamin’s Story

Site created on January 2, 2019

Our little friend Benjamin has showed some symptoms of some kind of a problem for the last 3 years. He’s 6 now. We didn’t know what was wrong but he would have spells of weakness and we thought it seemed to help to make sure he had protein for breakfast. Then About the fifteenth he got sick, but was a little better by the seventeenth.  And then on the twenty third he was fine in the morning but 15 minutes after breakfast he said he was just gonna go lay on the couch and then that seemed to be all he wanted to do. So then that Monday Eric’s took him into the emergency room in Nashville at the Monroe Carell Children’s  Hospital at Vanderbilt.  That was on the twenty fourth. He was there for almost a week. What they found out at that point was that they thought he had some kind of muscle disorder but didn’t really say what. And their goal at that point was the get the number of muscle enzymes in his blood down because they were way too high.  When they saw the numbers started dropping they were happy about that but didn’t really name the problem. They didn’t tell Eric’s anything to watch for or any diet tips or anything.  Sunday they told Eric’s they weren’t gonna do any more labs or anything so if they wanted to stay another night they could but really there would’ve been no  point since they weren’t gonna do anything anyway. So Sunday afternoon we went home. With a very limp little boy whose long dark eyelashes showed starkly on his white white cheeks. The only way we could get him to eat was grinding up food and feeding it to him through a syringe. He didn’t even have the strength to chew. Monday night at Pops and Nana Hibner’s House he had a spell and Eric had to start CPR. They called 911 and had them on their way. They did have to shock him and they loaded him up into the heli and flew him directly back to the hospital he had just been at the day before. So now most of you all have seen my statuses and that’s whats been going on since. 

Newest Update

Journal entry by Autumn Schafer

Hello to All,
   I'll try to give you an update on our Benji. While we were in the hospital a year ago, I (Dad), kinda hit a despair low. I sent a message of despair on the Tango2 Facebook page and waited for a response. Within a couple days i had a mom with 3, tango2 children😕 😟 , call me... She asked me about some of the supplements we were giving Benji and suggested that we try another kind or two. One of the supplements she said she gave her children was a B vitamin complex. As soon as we got out of the hospital we started with those supplements.Another thing this Mom of 3 did for us was call the Doctor in Texas that had discovered Tango2. Dr. Christina Miyake called within a week or 2 and we had a long talk. On the first call she also asked about supplements so we shared with her what we were doing and what we had started. More on that later. So  we came home from the hospital last year, January 10 with a very weak boy. Benji's Grandma Loewen came and lived with us for a couple weeks. We had a (PVC pipe and curtain room) in our living room for awhile because Benj was to weak to be upstairs alone, and we would have had to carry him up and down. Benj continued to get better and soon he was ready to get moving around a bit more. Jone' faithfully took Benj to many therapy sessions thru the spring and summer. Speech therapy is still ongoing it seems like Benji has never regained his speech clarity from the first time we had a crash, so we are still pursuing help there. During the summer we had a couple of Zoom meetings with Dr. Miyake, they asked a lot of questions about how it all happened for us ect. they are putting a natural study together to hopefully find some help. In one of those visits she said that they had found out that parents that had been giving a B vitamin complex had NOT had any life threatening episodes. She said they don't know which B vitamin is helping keep the muscles from breaking down, but it seems to help...😊 😊  As back to school time approached we wondered if Benji was strong enough to go. We decided to try it and just see how it went. A gracious youth girl volunteered to be Benji's tutor, Benji is currently working on a kindergarten curriculum. Our Christmas break was alot of fun we drove a motorhome to California to visit for the holidays. I didn't get all the naps Benj and Elizabeth got but, that is one reason we traveled in a motorhome, to keep Benj rested. It worked, but on the way home Elizabeth took sick. Then Benj got sick a few days later. Jone' took the children to the doctor January 4 because they both were running fevers. The Doctors looked at them and said there is nothing we can do, its a Respiratory Infection so you just have to get over it...😮 😟  Well that was what Benj had a year ago that sent him to the hospital and to the brink of Jordan... It was Tylenol and prayers around here for a few days... We went yesterday, the 22nd of January, for a Cardio checkup the Dr. said Benji's heart is working at 100%, all is well... It appears like Benj got sick and overcame the virus. We are very thankful. Thank you for all your prayers and support as we continue on the uncertain journey.      
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