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    #31
    Hello all. Seems like forever since I’ve been on this site. Kinda sad to see how few members still post. Where has everyone gone?

    Tyler is doing Ok. Hard to believe his is 26 already. Spent time in the hospital last month with his second bout of sepsis plus a UTI and aspiration pneumonia. They loaded him up with 4 antibiotics and sent us home on two. Responded really quickly and has been fine ever since. Trying to find the J&J vaccine for him, but not easy to get in our area. I need it as well due to multiple allergies to meds. My husband got his vaccine doses with few side effects. None of my grown kids are willing to get vaccinated. My son is a fireman for LA City and all of his crew got Covid last year. They are exposed on every shift but most refused the vaccines. Really a crazy world we now live in.

    Stay healthy!
    grandmother of Tyler (27): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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      #32
      ((((((Hugs to All)))))) ~

      Tamie ~

      How wonderful to see you here again! I'm so happy that you stopped by!

      I'm sorry to hear that Tyler has been in and out of the hospital, but I'm very relieved that he is responding to the antibiotics. How are his seizures? Isn't it incredible how much our boys can tolerate and still keep going? When I reflect on all that Michael and Jonathan endured, I'm just amazed that they did. Strong spirit and will.

      Were you able to stay at the hospital with Tyler, given the COVID situation?

      Do you have any sense of how Tyler might react to the vaccine? The potential adverse effects of fever, chills, joint pain, headache, and any potential of interaction with seizure meds, would be on my mind for Jon and Michael.

      John and his wife got the Johnson & Johnson vaccine here locally. I don't know how the vaccines are distributed, so every place could have a different one. And, the J&J may not be available here now, as that was about 2 weeks ago, when they got their shots.

      Why don't your adult children want to get the vaccine? Did your son, who is a firefighter, have COVID along with his crew? If so, he may have some antibodies built up. I think everyone should have follow up blood tests to determine whether their systems have developed the necessary antibodies to fight the severity of COVID.

      It is an awful disease, with some scary mutations/variants. The experts predict that we're in for another surge, with Spring Break and Easter, and opening up too soon.

      Please stop by more often. You ask where everyone has gone. They went wherever you've been, I guess. Also, I imagine Facebook is active.

      Many prayers, and lots of positive, healing energy on the way for you, Tyler, Jerry, and your family. Be well and be safe.

      Love & Light,



      Rose

      *Virtual Hugs Are Germ-Free!



      THANKS!


      Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

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        #33
        Tyler is back into his UTI a month mode. I fortunately it’s been causing him to become septic. No real symptoms other than a sudden high temp, low blood pressure and high heart rate. We see that happening and head to the ER. Just took his temp and it’s 100.1. Not too unusual, but will watch closely to be sure it doesn’t climb. Last ER visit, same symptoms. Spent the afternoon with Tyler being examined and tested. They would only allow me in so my husband went home. By 10:00, we were in a room and a man came in and told me I had to leave Chance. Told me the county wouldn’t allow me to stay. Told him not to tell the county then. Got into an argument with the guy and flat out told him “where Tyler goes, I go” and I had no way of getting home. The Kaiser doctor stepped in and told the guy I was staying and they would be happy I did. I stayed the night. During Rounds the next afternoon, the doctor asked if I felt comfortable dealing with Tyler at home. They really didn’t want him any where’s near a hospital. Took him home.

        Tylers seizures are on the uptick. Nothing is ever going to stop him from seizing. Between the seizures and the Autonomic Dysreflexia, we have been self isolating for the past four years. I was able to make appointments for Tyler and I to get the J&J vaccine on Easter Sunday. I dread the thought of putting Tyler through it and have no idea how he will respond, but don’t feel like we have any other choice. We’ll lose him if he gets Covid. Of that, I have no doubt.
        grandmother of Tyler (27): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

        Comment


          #34
          ((((((Tamie, Tyler, Jerry)))))) ~

          My heart is one with yours, and I am so sorry for all you are going through now. I understand completely how you had the confrontation about leaving Tyler. It was my fear for Jon and Jim should they have survived through the surges. That I couldn't be in the hospital with them. I'm grateful for the physician, who allowed you to stay and released Tyler to your care at home.

          Tyler's system is so delicate, and I understand how concerned you are about the vaccine and getting COVID. At this point in the vaccination process, most studies indicate that the vaccines will not prevent a person from getting COVID, but it should reduce the severity of the virus.

          I hope that follow up studies are in progress, as the vaccinations increase, to test vaccinated people for antibodies against COVID. It is new, so we need time to determine its efficacy among a wide range of people with varying medical conditions.

          You are all in my prayers, as always, and I send you healing, positive energy and strength and wisdom as well as Divine Guidance.

          I am thinking of you ~ Please keep us updated, Tamie.

          Love & Light,



          Rose

          *Virtual Hugs Are Germ-Free!



          THANKS!




          Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

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