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Need Major Jingles PLEASE - Kian Update PAGE 7 STILL GOOD NEWS, AND BAD NEWS

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  • #61
    Thinking of you and Kian

    Jingles from TN!

    Fellow Horse-aholic,
    Amy

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    • #62
      Jingling for your little boy!

      I know you have an appt in a few weeks but this sounds serious (IMHO and limited experience working in an ER). Start calling them and asking if there are any cancellations and if they cannot get him in sooner. Squeaky wheel gets the grease and all that. Don't be nasty or hysterical - just be firm and insistent. It's true that the sweeter and more pathetic you are - it makes people want to help. If you're already doing this, well great!!

      Hope things improve soon or you find out what's up.
      "Cats aren't clean; they're covered with cat spit."
      - John S Nichols (1745-1846,writer/printer)

      Don't come for me - I didn't send for you.

      Comment

      • Original Poster
        #63
        Thanks for the many jingles!!!

        Shiloh- Thanks for the advice, I do appreciate it! We are on all of the cancellation lists, but Kian is not considered to be a severe case at the moment so there are MANY people ahead of him on those lists. Apparently they consider a severe patient to be a child that has 10's or 100's of seizures per day, and they are not being controlled by medication. Since Kian only has one seizure per day or less, he's not their highest priority case right now. But hey, Hopkins got him in a HECK of a lot faster than another hospital, who told me that they are booking for 8 MONTHS FROM NOW!!!! Anyhow, thanks again for the info because I really appreciate any ideas/info I can get!!!!

        KIAN UPDATE - He did well for a few days, and then we had another seizure last night (and also one a few nights ago). I think the meds are working somewhat because his seiuzures have been a lot shorter in duration lately, and they are happening less frequently....and they are also less severe in type. Hey, it's another small victory that I am more than willing to take! Last night's seizure was about 5 minutes long, fixated eyes, limbs flailing, etc. He was pretty much back to normal within a 1/2 hour and slept through the night (THANK GOD!). This morning, he is absolutely fine!! For the first time since he was born, he has been well enough for me to take him to church, and he had a blast. He's such a ham...was cooing at all the pretty ladies in church! Next step...get him to the barn!

        Another update soon, I promise, and I put new pics of Kian up on his site http://www.caringbridge.org/visit/kianremy not too long ago...feel free to take a look!

        Comment

        • #64
          More Jingles for Kian. It does sound like there has been some improvement.
          <HUGS>
          I\'m not crazy. I\'m just a little unwell.

          Comment

          • #65
            C'mon Kian!!!
            *************************
            Go, Baby, Go......
            Aefvue Farms Footing Inspector

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            • #66
              Prayers and jingles for Kian. He is just adorable.

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              • Original Poster
                #67
                Thanks guys, he was seizure-free again last night. I am not sure if the meds are working well enough or not because he continues to have small seizures, but I hope that we don't have to switch him to a stronger med. Stronger meds always mean more side effects. His 2 BIG Doctor appointments are Aug. 1 and then Sept. 12 (hopefully earlier if I can get in at another hospital) so I am hoping to hear good news. I will keep updating here, and on Kian's site.

                Thanks again! Keep jingling, it seems to be working for Kian!

                Comment

                • #68
                  I just saw this thread and will send major jingles from MD. Hang in there Kian.

                  Comment

                  • Original Poster
                    #69
                    P.S. I updated Kian's caringbridge (http://www.caringbridge.com/visit/kianremy) page today....will post 1-2 new pictures sometime this week.

                    Comment

                    • #70
                      How's it going?? Praying he continues to improve!!!
                      *************************
                      Go, Baby, Go......
                      Aefvue Farms Footing Inspector

                      Comment

                      • Original Poster
                        #71
                        Thanks for bringing Kian's thread back to the front page, Irish! Great to know people are still thinking about him...

                        Kian is doing ok, had another small seizure last night and continues to have night screams and some developmental delays. I am concerned about the weakness on his left side, and the fact that last night's seizure (although small) was more intense and a little longer than the last few. Hopefully Kian is not building up some sort of tolerance to this medication.

                        Mommy is also doing just OK...I have some sort of strange undiagnosed medical condition myself (PROBABLY just stress related I think, but maybe I am trying to convince myself I don't need a Dr.) Anyway we appreciate your continued prayers for both of us!!

                        The search for Kian's birthday pony is going great too, I found a CUTIE that the owner is willing to hold

                        Comment

                        • #72
                          Get it diagnosed, silly, or he'll be taking care of you!!
                          *************************
                          Go, Baby, Go......
                          Aefvue Farms Footing Inspector

                          Comment

                          • #73
                            <BLOCKQUOTE class="ip-ubbcode-quote"><div class="ip-ubbcode-quote-title">quote:</div><div class="ip-ubbcode-quote-content">Originally posted by Irish Ei's:
                            Get it diagnosed, silly, or he'll be taking care of you!! </div></BLOCKQUOTE>

                            Double ditto!!! Mommies don't get to be sick, too much rides on our shoulders!!

                            Comment

                            • Original Poster
                              #74
                              So, the Doc ran the last "normal" or "semi-routine" test he could think of today...Lyme Disease. He said it's a long shot that I would have it, but he hasn't been able to find any other cause. I don't care what it is, as long as I don't end up in the hospital again! Lord knows I can't leave Kian with Grandma for a few days or he'd never want to come back home! Anyway, I feel totally lousy...Heat Flashes (not menopausal..), low grade temp, stiff neck, sore throat, muscle aches and weakness, tiredness (to the point of falling asleep while driving), etc. I also am so lightheaded (and have been for nearly 10 months off and on) that I have fainted 2x and nearly fainted MANY more times. AHHHHHHH So frustrating, but putting the focus back on Kian........

                              Kian did well today, nothing to report on that front. He sees a different Neuro on Monday and I will update after that visit..may also be having an early appt with a Geneticist if the lovely people at Hopkins can fit us in We are taking him to see his first live pony ever this weekend...and if it all works out, we may purchase this pony for his first birthday (owner will hold until my barn goes up, which coincidentally *sp* is supposed to be finished the same week as Kian's birthday, possibly sooner). I am probably more excited about the pony than Kian (see Horseaholics anonymous thread)... I always wanted cute little pony! This one is a 13.3-14 hh chestnut flaxen Quarter Pony, and although he doesn't have spots (which even though Kian can't talk yet, he insists upon)...I think he might work out. If not, I heard of a black and white paint pony that might work out too...

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                              • #75
                                jingles from nearby NOVA...we're not too far away from Frederick if you need something more than jingles...just let us know...jingling unceasingly for you and Kian...

                                Comment

                                • #76
                                  More jingles!!

                                  Good luck with the pony, update us on how Kian likes him!!
                                  ~Former Disgruntled College Clique...recently graduated and out in the real world...

                                  Comment

                                  • #77
                                    Sorry to hear about Kian. My son has a rare form of epilepsy called infantile spasms. It is very difficult to control, so I know the frustration you must be feeling. I see a pediatric neurologist in NJ that I highly recommend (he is the director of NYU's epilepsy center). If you are interested, I will send you his contact information. Hopefully, Johns Hopkins will be able to help you. Good luck!

                                    Comment

                                    • #78
                                      I remember seeing something on T.V. about a kid that had seizures being put on a special diet. The diet was very, very strict, but the kid stopped having any seizures at all. As I recall the diet doesn't work in all cases, but in the ones where it does work some of the kids can come off the diet after several years and be fine.

                                      Comment

                                      • #79
                                        O jeez j21 I'm in total shock! I'm just reading this for the first time! I'm jingling like crazy and hope that everything will get better VERY soon!
                                        Marieke

                                        www.EquineFashionandTack.com
                                        www.Twitter.com/EquineFashion

                                        Comment

                                        • #80
                                          Oh, wow. Jingles for both of you!

                                          I'm sure your doctor has thought of these, but West Nile and mono come to mind as possibles. Jingling that both you and Kian get resolutions to your issues soonest.
                                          In loving memory of Laura Jahnke.
                                          A life lived by example, done too soon.
                                          www.caringbridge.org/page/laurajahnke/

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