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    Tamie ~ Please Check In When You Can

    ((((((Tamie, Tyler, Jerry))))))) ~

    You continue to be in my prayers. I am thinking about you and Tyler getting the vaccine, and I'm praying that neither of you had any adverse effects. I'm praying that Tyler's UTI has resolved. I'm praying for strength, healing, and rest for all of you.

    We have been sharing our journeys with our boys for more than 20 years, Tamie, and I just want to assure you that I'm still here, praying for and loving all of you.

    I hope that you will have a moment to briefly update us on how you all are. We're here for you.

    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.

    #2
    Hi Rose. Tyler and I got the J&J vaccine on Easter Sunday. Tyler ran a temp all day Monday and acted like he didn’t feel well. Tuesday his seizures were off the chart. He still has a bruised arm. I had absolutely no reaction whatsoever. Not even a sore arm. Have another week before we are supposedly in the clear for the blood clotting issue.

    We brought Tyler to a funeral today for a dear friend. He passed from multiple myeloma. Tyler actually did pretty well. It’s a start.
    It’s been so long since we’ve all been out of the house together.

    Thanks for checking in on us. How are you doing?
    grandmother of Tyler (24): 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


      #3
      Glad Tyler is vaccinated and so are you, but sorry Tyler had seizures. Nice to hear from you again Tamie.
      Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
      My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

      Comment


        #4
        ((((((Tamie, Tyler, & Jerry)))))) ~

        How relieved and grateful I am that you and Tyler are doing well after your vaccines. I'm so sorry that Tyler experienced and increase in seizures, and my prayers are with you that they will subside.

        I am so very sorry for the loss of your friend, but I am grateful that you and Tyler were able to attend his funeral.

        Thank you for asking about how I am. I am functioning, endeavoring to move forward each day with hope and love in my heart.

        I am coping, using all of the tools in my coping tool box. As you, Tyler, and Jerry are doing.

        Please stay close to us, Tamie. I always want to know how you all are.

        Sending healing, positive energy and prayers and much love to all of you ~

        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.

        Comment


          #5
          It's been so quiet here for so long. Feels like it did when my Yahoo Ohtahara site was abandoned to Facebook. I moderate and post on the Facebook site, but it just isn't the same any more. We've lost the sense of "family".

          Tyler has been doing well. No UTI's for about two months. A record for him lately. He gets these crazy, what we call, choking seizures that are puzzling. His face twists to the left cutting off his airway. Almost looks like he is having a stroke. He struggles to breath, choking, begins jerking his limbs and then coughs up saliva and mucous. Thankfully they are brief. Neurologist is no help whatsoever. We have simply learned to endure and accept what is. I know if these seizures lasted any longer, Tyler would simply stop breathing. Likely a progression of Ohtahara.

          I had my yearly checkup for my aortic dissection. Everything looks good, except they found what is called, a tree in bud in my right lung. Been going through testing to figure out why it is there. Had to have a covid test today in order for more testing to be done Thursday, Friday and Monday. They seem to think it is from some weird, obscure infection, or inflamation, usually found in third world countries. Yeah right. I'm lucky to go to the grocery store much less travel to a third world country. I worry about lung cancer. It is definitely in my family. I never smoked, but I am the only one in my family that didn't. My parents smoked in the houses, the cars, the cabin, the boat, the plane, and in my Dad's office where I worked when I turned 15. Had enough second hand smoke to take out a small nation. Hopefully it is nothing to worry about. Tyler and my family need me to be here. Getting sick is not an option.

          Hope all is well with whomever still posts here. Take care, all of you.
          grandmother of Tyler (24): 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


            #6
            ((((((Tamie)))))) ~

            Oh my! Your plate is really overflowing! I am so sorry, Tamie.

            Great news that Tyler has been UTI free for two months, and may it continue to be so! But, his new seizures sound quite concerning. Does his neurologist at least make an effort to try to explain or identify what is happening to Tyler during these seizures, or what could be the trigger for them? You know, researching medical journals, reaching out to other experts in neurology and seizure disorders and Ohtahara Syndrome?

            When did these seizures begin? Could they be related in some way to the COVID vaccine?

            There is still so little known about the adverse responses to the vaccine in people with assorted medical issues. I'm just tossing it out there as something to consider.

            Do you have O2 on hand, and a suctioning machine?

            I will be thinking of you as you undergo the tests to determine the source of this bud in your lung. I know this is very scary for you, and I send you my love and prayers for strength.

            Once again, I would wonder whether there is a connection to your COVID vaccine. It is worth asking your and Tyler's physicians if the vaccine could be connected to your symptoms.

            Yes, it has been quiet here on CN for awhile now. I miss our CN family too.

            Please keep us updated on you, Tyler, Jerry, and your family.

            Many prayers and healing, positive energy on the way ~

            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.

            Comment


              #7
              Tyler has been having these choking seizures for over a year now, so not connected to the vaccine. Thé new adult neuro could care less what happens to Tyler. Ohtahara is an illness of infants and small children. Kids just aren’t expected to live into their teens much less adulthood. Adult neuros have no clue because they haven’t dealt with anyone like Tyler. We just make do. We have a suction machine but have never needed oxygen. It wouldn’t help when the problem is positional. Tyler spent about 15 minutes this morning screeching in pain, then the seizures hit and he started sweating profusely. Gave him Valium and Tylenol and waited it out. Sent an email to his Primary Care doc requesting a complete physical. Seems like the best place to start figuring what is hurting him. Haven’t seen him that out of sorts in quite a while

              Went in today to do the sputum test. It was a complete bust. The breathing treatment was supposed to cause me to cough. Did nothing. They sent me home to try getting the sample here. No luck. Gonna try first thing tomorrow and if not successful, have to go back in for another treatment. Have no idea what plan B is. The doctor found the “tree in bud” in February and saw it again a couple if weeks ago in the follow up CT scan. Had the vaccine in April, so no correlation there. Life is never dull around here. Sure hope you are doing OK.
              grandmother of Tyler (24): 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


                #8
                ((((((Tamie, Tyler & Jerry)))))) ~

                It is so very difficult to find physicians, who are skilled and familiar with rare disorders. And, you are so right about adulthood physicians for our children. They are clueless, because, as you said, our children don't generally survive to adulthood.

                With Jonathan and Michael, I found that to be true throughout their lives. They were undiagnosed, so that complicated everything. They didn't have cohorts with whom they could be compared.

                Tyler's seizures sound very scary. I pray that you find an answer. I am so so sorry, Tamie. Hug and Kiss Tyler for me, please.

                I have never heard of the tree in bud, so I Googled it. There seem to be a variety of potential causes for it. Were you able to provide a sputum sample?

                Please don't worry about me. I am fine. Taking each day as it comes, functioning, planning for the future, grieving, coping, rebuilding, adjusting, adapting, letting go of things gradually, expanding my spiritual connection with Jim, Jon, and Michael.

                You are all in my prayers, and I send you healing, positive energy. I know you have so much on your plate, as always, and you are strong, resilient, and determined. Look at how many times you all have defied the odds against you. You are amazing!

                HAPPY FATHER'S DAY JERRY!

                God Bless You All and give you strength and healing.

                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.

                Comment


                  #9
                  Well, Tyler is back on two antibiotics for aspiration pneumonia. He’s been coughing for a week with no other symptoms other than serious sweating. Had an x ray and blood work done today to see what the problem was. Wasn’t surprised with the outcome.

                  Still waiting to hear plan B for my tree in bud. The sputum test was a complete bust. Supposed to hear this week what happens next.

                  Take care of yourself Rose. Don’t want to hear you’ve gone down. Thanks for the prayers.
                  grandmother of Tyler (24): 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


                    #10
                    ((((((Tamie, Tyler & Jerry)))))) ~

                    Oh, dear, I'm so sorry Tyler has aspiration pneumonia. My boys had that many, many times, and usually were in the hospital on a vent in ICU. Your description of his choking seizures leads me to think that is the culprit. I'm praying that the antibiotics will kick in soon, and the pneumonia will resolve. Are you giving him breathing treatments with a nebulizer?

                    It sure seems to be taking a long time to determine what to do about the tree in bud. It is so frustrating, when a diagnosis is difficult to obtain. I hope that your doctor(s) will have an answer or a plan forward for you next week.

                    John is taking me to get my first dose of the Pfizer vaccine next Tuesday. I have so many things, which I need to do for my health and tying up legal things associated with Jim's passing, that I need to get vaccinated to allow me to be safer in doing them. I will still and always wear a mask, because as far as we know, the vaccine doesn't prevent getting COVID. It reduces the severity of the virus if you get it. And, we can get it, be asymptomatic, not know that we have it, and still spread it. So, I'll be masked.

                    Prayers continue for you all ~ your family truly needs a break.

                    I love you and send you all extra ((((((HUGS)))))) ~

                    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.

                    Comment


                      #11
                      Tyler seems to be responding to the antibiotics. One seems to really irritates his seizures and causes him to cough more, but he is only on them for five days, so we will just bare with it. Only one day of a temperature, but the sweating and coughing is ongoing.

                      Have a phone appointment tomorrow morning with my Primary Care doctor regarding the "tree in bud". Not sure what she is going to say but hopefully there is a plan B. She requested the phone appointment.

                      I had no problem with the J&J vaccine, but my husband had the Pfizer. He had severe chills that night, and enough pain in his arm to keep him awake most of the night. The second shot left him so exhausted, he basically slept all day long and could barely function. After the first few days, he was fine on both. Hope you don't have any serious side effects Rose.

                      Thanks for the hugs Rose. I can always use a few. Sending them right back to you.
                      grandmother of Tyler (24): 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


                        #12
                        ((((((Tamie, Tyler and Jerry)))))) ~

                        How are Tyler's seizures now? Are his lungs clear after the antibiotics?

                        What did you learn about your tree in bud from you doctor?

                        My first Pfizer vaccine was uneventful in terms of side effects. My arm was a bit sore, but that was all and quite tolerable for a few hours. I'm sorry that Jerry's reaction was more intense. I have no idea how I will respond when I get the second dose. But I am prepared for whatever happens.

                        Sending more ((((((Hugs)))))) and many prayers for all of you ~

                        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.

                        Comment


                          #13
                          Tyler is still coughing, but nothing like last week. He’s back to grinding his teeth though. Really don’t like that sound. Like nails on a chalkboard. Still not getting much sleep. Got 4 1/2 hours last night. Had to reposition Tyler’s head all night to keep his airway open.

                          Have a phone appointment with the pulmonologist next week. Have no idea what to expect. My doctor is clueless. Hopefully the pulmonologist will have a plan B.

                          Glad to hear you didn’t have any major side effects with the first shot. Strange how it affects everyone so differently.

                          grandmother of Tyler (24): 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


                            #14
                            ((((((Tamie, Tyler, & Jerry)))))) ~

                            How is Tyler doing now? Are you getting any more sleep? How well I know about sleep deprivation and catching whatever amount of sleep you can get. Positioning is always such a challenge.

                            As always, my prayers are with all of you. I pray that the pulmonologist does have an answer for you. It must be so frustrating.

                            Holding you close and sending you positive, healing energy ~

                            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.

                            Comment


                              #15
                              Hi Rose. Tyler seems to be over the pneumonia, but for some reason has been desating several times over the past few weeks. Over the weekend he was at 43 for several minutes. Came up to 53 for a bit and then went up to 96. Found him several times in the low 70’s. Contacted his Primary to see about getting oxygen at the house. He referred me to Pulmonology last Tuesday and told me to call them. They put me off by saying they needed to review his medical record. Never got back with me. I called again on Friday and was told no oxygen until he got a breathing test. I wish them luck with that one. There are no appointments to be had in the near future for the test. Not happy. Gonna contact his Primary tomorrow and complain.

                              My pulmonologist put me on Muscinix and a breathing gizmo for two weeks to try and make me cough up something from my lungs so they can culture it. Will see if this helps.

                              Hope you had a nice 4th.
                              grandmother of Tyler (24): 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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