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

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  • WOO-HOO...Just a Cold!!!
    Wishing you an organized, uneventful day tomorrow...Drama-Free...Jingles for moving day with a head-coldin', Mom-scoldin',Grampy-holdin and Butt-head-foldin' day.
    *************************
    Go, Baby, Go......
    Aefvue Farms Footing Inspector

    Comment

    • Original Poster

      Very quick update:

      Move in day is postponed until tomorrow...we got too late of a start this morning.

      Kian is ok, coughing a lot but otherwise actually looks really good.

      I had a greaaaaaaaat ride on the South Pacific mare (Her barn name is Zsa Zsa but I am looking to change that) today, and look forward to working with her more. She's definitely got a LOT of blood to her, which I like, but is sane (so far).

      More later

      Comment


      • <BLOCKQUOTE class="ip-ubbcode-quote"><div class="ip-ubbcode-quote-title">quote:</div><div class="ip-ubbcode-quote-content">Originally posted by Jumpers21:
        Anyone have any magical butthead husband remedies??? (ie remedies to cure onself of a butthead, leech of a husband?) </div></BLOCKQUOTE>

        Yep - more ice cream!

        Glad to know Kian's doing okay, but so sorry you had to do the dr./hosp/dr. thing. It can get so tiring...

        And just so you know you're not alone, two of my kids had/have the sore throat then cold thing, too, and we're down here in southern Maryland. Amazing how these little buggies get around, eh? Let's buy stock in the makers of Purell and Clorox Wipes!

        Wishing you and little Kian (and your whole family, too) a happy day full of health and smiles...

        Comment

        • Original Poster

          Hey Onward - Do NOT encourage me to eat more ice cream, LOL, I am trying to LOSE weight here!!!!

          Kian is still about the same this morning, coughing like crazy and I assume he has a sore throat because he is an ANGRY little man today (so far). More later

          Comment


          • jingles for Kian and the Move and everything- inc. a way for butt-head hubby to remember that he is married to you, the love of his life... And hope that everyone is recovering well from their various virus illness's

            Hope all goes smoothly today- Pictures would be great!!!!!

            Comment


            • And how is Jumpers21 and dear Kian this a.m???

              Comment


              • HUGE JINGLES FOR YOU! I too know what horrible feelings run through your body as you see your baby seizing. My daughter was placed on reglan for reflux at 2 months. I told docs that we were seeing signs of mini seizures and distonic reactions. It tokk serious seizures for them to realize i was not screwing around!I only read the first page of the post so I feel like i need to ask several more questions if you dont mind. Does he have reflux too? My daughter was also sevwerly anemic and had apnea till 8 weeks ago. We got off the monitor then at age 8 months. I am not sure where your located but we have a fab Pediatric team that treats our daughter monthly or as needed at Fairfax. We thought about childrens but loved there better. I hope and pray all is better soon for your family.

                Comment

                • Original Poster

                  Smallfries - Kian was on Reglan once, it's HORRIBLE. It made him scream (and I mean NON-STOP TILL YOU PASS OUT, WAKE UP SCREAMING) for 2 days straight. They took him off of it because there are too many adverse(SP) side effects, including seizures if my memory serves me correctly. Yes, Kian does have reflux, which is very well controlled by Prilosec and doesn't cause him any more issues. He also has a number of other problems.

                  UPDATE ON KIAN
                  Kian's Neurologist called me the other day with the results of his remaining blood test. His Lysosomes (SP??) came back abnormal, so he may have some sort of metabolic issue going on. I am in the process of trying to make a Metabolic Specialist appointment to get some more testing done, but it hasn't been easy He also may still have a genetic condition or syndrome too, the Geneticist sees him Sept 12.

                  In the meantime, he had 2 seizure free weeks or so, followed the other night with a semi-severe seizure that threw me for another loop. He's also teething AGAIN (can't they all just come in at once???) and battling some sort of eye infection/irritation?? I don't know, but his Right eye (the bad one) has been looking bloodshot for awhile. His Pediatrician said it's nothing, then it went away, now it's back again, so he'll go back to the Doctor tomorrow. In the meantime, he's soaking up as much attention as he can get (he's such a ham!)

                  We are doing Ok too...moved into the new house (watching the barn being built next to it) and it's really nice. Too bad the courtesy service forgot to turn on our phone/cable/internet so now I have to wait until Tuesday for someone to come out and install the stuff. Husband is being "ok" for the time being, but he's still a butthead and I'm pretty sure that if I wasn't so stressed right now (and didn't need him so much to help out with those stressors) I would probably have ditched him already. LOL.

                  Sorry it took me so long to update, but like I said I have NO INTERNET or phone (yeah, it's horrible) and I am typing this from my Aunt's house!

                  On a horsey note, I really really really love the South Pacific mare. She's phenomenal over fences and I am excited to get back in the show ring on her soon. Also, business has been going well, so at least SOMETHING is going right!

                  Comment

                  • Original Poster

                    UPDATE:
                    Finally, I have internet and phone access (thank ya JESUS!). Anyhow, I am finally able to update you all on Kian again, at least those who have not seen the new update on his webpage (http://www.caringbridge.org/visit/kianremy)
                    OK is the best possible word to describe Kian's current medical state. He's not any worse, but not any better. We're still dealing with intermittent seizures, night terrors, night screams, etc. We upped his medication again to 3ml in the morning, 3ml in the afternoon, and 4 at night. Seems like a lot of medication for a little guy, but it's better to keep him on THIS medication (very well tolerated, low amount of side effects) than to try something stronger at this point.

                    Kian has also battled some sort of eye infection (I HAVE THE BEST PEDIATRIC OPTHOMOLOGIST IN THE WORLD, IF ANYONE NEEDS ONE!!!) which the Pediatrician (not the one he usually sees, but at the same office) originally prescribed drops for. Those drops made him worse, to the point where his WHOLE eye was bright red and bloodshot and he was screaming his head off. So we went to the pediatric Opthomologist who was a TOTAL LIFESAVER and prescribed a better drop that had some sort of numbing agent....and all was well in Kian-Land.

                    Now for the last 2-3 days, Kian has just been really quiet (except when he's screaming) and reserved. I am thinking that he might have more teeth coming in (OUCH!)...or maybe some sort of other ailment bothering him? Either way, looks like we are headed to the Doctor again tomorrow.

                    Kian has 3 Specialist appointments (at least) this month, one to see the Neurologist (on the 7th), one to see the Geneticist (on the 12th, and she's actually the head of Genetics at CHOP), and one to see a Metabolic specialist (on the 22nd). I hope that this will get us closer to finding some answers...because I am sure it's going to be stressful on Kian (lots of bloodwork). I am also considering taking him to an Orthapedic specialist for his back, as he's having more problems with the left side of his spine than the right side. I am very concerned about this, and I think it's just about time to take him in for that ailment as well.

                    On a great note, Kian got a GIANT plush pony (because the REAL pony should be his birthday present). It's very sturdy (holds 140 lbs) and it sings all kind of different songs. HE LOVES IT...we have another horseaholic on our hands here! He's darn near 11 months old now, so the big birthday blowout is on it's way. Kian is having a GIANT talking pinata (talks and eggs you on when you hit it) and probably (you guessed it) pony rides!!!

                    More soon, I promise I won't neglect COTH anymore! I am doing well now that I am actually IN my house. Things are getting put together, straightened out, and it seems like I may be getting a business partner too (which will definitely be a great addition to my place).

                    Comment


                    • Glad to hear from you..i was just thinking about you guys.

                      Keep the good news coming!!

                      I cant wait to see pictures from this birthday blowout!
                      ~Former Disgruntled College Clique...recently graduated and out in the real world...

                      Comment


                      • Yay!!! Just getting back online, myself after big storm took out surge-protected puter.....
                        *************************
                        Go, Baby, Go......
                        Aefvue Farms Footing Inspector

                        Comment

                        • Original Poster

                          Irish - So, you too know what it's like to be in No-Computer hell! Not to mention that I also had no phone and no TV for awhile...and NO horses at home to mess with either (boarded out at the moment). But YAY that we are both back online and can chat again!

                          PS I am taking pics of Kian on his giant stuffed pony this week and will be sure to post them on his website or here (if I can figure out how!)

                          Comment


                          • Re-discovered some beloved low-tech entertainment...reading!!! And actually got to the barn at 10 am, and discovered that no one was looking for me....
                            *************************
                            Go, Baby, Go......
                            Aefvue Farms Footing Inspector

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