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| TOC jingles needed for Makena; I think Flashy's too busy to ask... | |
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| Tweet Topic Started: Nov 2 2010, 06:35 AM (5,117 Views) | |
| Fish Cheeks | Nov 18 2010, 07:33 PM Post #211 |
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You're BANNED!
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Continued jingles for the wee spicy one!!!!
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| MissBri | Nov 19 2010, 03:20 AM Post #212 |
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But, I don't care - it's 5:00 somewhere
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Oh Flashie I am SO sorry!! Spicey Kena needs you to be pushy, so keep on it. Be a Momma Tiger! and a big old sobfest pity party will relieve a lot of stressAbsolutely vent here. We all love you and care deeply about your saga. Wish there was something I could do for you. that the test come back with some answers....
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| FlashGordon | Nov 19 2010, 03:00 PM Post #213 |
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You're BANNED!
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Hey guys... just wanted to say thanks again for all the continued jingles. In talking with my mom the RN last night.... it seems as though Kawasaki's comes on sometimes as a result of an infection or internal issue. The body starts attacking itself instead of attacking the invading infection. This we knew, but attributed it to the cold she had prior to the onset of the Kawasaki's. However, now that she is having these new symptoms they are looking at other things like Mono and Lyme that might be the underlying issue. She had a couple really nasty bug bites this summer, in fact had cellulitis in her arm as a result of one of them. I've held it together REALLY well the last few weeks, mostly because I had to, but now I'm starting to get outwardly fried. Trying to maintain normalcy for her, baby and hubby... while caring for her, working, and still getting up with baby several times a night has made me a walking zombie. I'm also starting to get a little panicky internally as I thought we had this thing kicked in the butt and now I'm not so certain that the docs are sure about what is going on! I'm just kind of rambling here..... anyway hopefully they get it all figured out soon, it breaks my heart to see her like this. This is all SO out of character for her-- she is the child whose health I never worried about, she's so rough and tumble and robust and healthy. I'm sure she'll be back to bouncing around soon and then we need to plan our trip to Disney!! Edited by FlashGordon, Nov 19 2010, 03:00 PM.
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| FlashGordon | Nov 19 2010, 03:02 PM Post #214 |
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You're BANNED!
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And just wanted to say, I feel like a total freak between my colitis and crazy high risk pregnancy and now this weird episode with Makena. I'm sure people wonder what black cloud is hanging over us. I'm starting to think we need to take baths in holy water or have the house blessed! Seriously though I don't like the universe messing with my kid!! |
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| gunnar | Nov 19 2010, 03:11 PM Post #215 |
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You're BANNED!
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FG, sending continued jingles. I too wonder aout how peope feel about my black cloud and if they are tired of my tales of woe! You are a strong woman and I know you will survive. Hang in there my friend! and so will I!
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| Witchy | Nov 19 2010, 04:20 PM Post #216 |
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You're BANNED!
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Well, if things happen in 3s, you should be done Flashy. More jingles and hugs. Feel free to vent and tell us your woes. We won't think you are a freak. Shit happens.
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| Delia | Nov 19 2010, 04:28 PM Post #217 |
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You're BANNED!
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Silly Flashy -- EVERYBODY has a black cloud over them more often than not. When you get sick of yours, come on over and hang out with me under mine for a while. I serve stiff cocktails under my cloud! That's the way life is a lot of the time, unfortunately, and we're often defined by how we deal with it. And you, my dear, are strong, fierce and extremely graceful under duress! FWIW, we have one of those Turkish anti- evil eye thingies hanging over the inside threshold of our front door. With the caveat that I know next to nothing about Kouwasaki's, it does make sense to me that there was an underlyng infection that Kena's body went all wonky trying to fight. And since Lyme's symptoms do develop slowly in intensity, it also makes sense to me that it's a good candidate to investigage -- severe joint pain typically comes on after you have it for at least a few months. Fortunately if that's what it is, it's usually easy to treat with doxycycline. Hang tough, girl, and don't be afraid to let yourself have a good cry every now and again. But also try to do stuff like loading the kids up in the stroller, grabbing Shandy and Mr. FG and going for a nice walk around the 'hood in this pretty fall weather. It'll make everybody feel a bit better.
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| FrenchFryTheEqHorse | Nov 19 2010, 05:26 PM Post #218 |
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Weanling
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Hi FG. I don't post here much, but I read your thread a lot. I wanted to tell you I hope your daughter gets better soon, and that you're doing all the right things by following your own instincts when it comes to her. I was diagnosed with type I diabetes when I was 5, and it took my mom dragging me into the pediatrician 4 times in 5 days before they finally checked my blood sugar. I had lost 17 lbs at that point (had flu-like symptoms for a week or so before things went REALLY south), and the pediatrician kept telling my mom I had a stomach flu and that she should give me pedialyte and gatorade to keep my hydrated. Pretty much the opposite of what she should have been doing. Last year I had a seizure while I was driving and crashed my car into a tree. The ambulance took me to a terrible local hospital where after 4 days of MRIs, CTs, sleep studies, monitoring, adjusting my insulin, discussion of "brain lesions" or the possibility of a tumor, they discharged me having had a "probable diabetic related seizure". Nevermind that my blood sugar was 96 on the scene, and that I had eaten a full breakfast just minutes before the accident. Needless to say, my husband (who is a doctor and was extremely suspicious of the MRI images they took at the hospital) got me an appointment with a neurologist at Hopkins that diagnosed me almost immediately after seeing the images with having an abnormal amount of scar tissue in my temporal lobe. He said he had no idea why I laid in a bed for 4 days, as this was clearly the cause of the type of seizure I had. Bottom line is, if you don't like the doctor, they are working for YOU. Get another opinion. Get your mom involved, too- having my husband talk some sense into the rude or clueless intern helped me A LOT to be able to assert myself and be in charge of my care. I also thank my mom for having done the same thing when I was little and got the diabetes diagnosis. I'm sure my mom would like me to add that you should check to see if there are any support groups at the local children's hospital. Even if Makena gets better really quickly, participating in discussions with other parents that have been through the wringer at the doctor's/hospital can help you a lot emotionally and logistically. |
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| smorse | Nov 19 2010, 06:04 PM Post #219 |
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Shunnnnn the unbeliever. Shunnnnnnnnnnnnnnnn.
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OH Flash So sorry to hear this. Sending major jingles for the little one.
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| Onelanerode | Nov 19 2010, 06:16 PM Post #220 |
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Off visiting Candy Cave, be right back.
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Oh FG. I just now saw this. I am so sorry! I too think the additional testing is good. I really hope it sheds some light on what's going on. Please do take care of yourself. I can't imagine how stressful this is for you and your hubby. Do go have that drink and cry. Sometimes you just need to do that. Hugs to you and Kena.
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| MayaTy's Elf | Nov 19 2010, 06:24 PM Post #221 |
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Weanling
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Special Elfin Jingles for Makena. And for mom, too, who needs a stiff And lots of And maybe one of these to let off some steam Love, the Elves |
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| FlashGordon | Nov 19 2010, 07:45 PM Post #222 |
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You're BANNED!
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Oh man FF what a nightmare. Thank you so much for popping in and sharing your story. I can't imagine what you went through after your accident. A car crash is bad enough but to add in potential brain tumors etc. into the mix, my goodness talk about a disaster. I'm glad your husband trusted his gut and got you a second opinion, and that your mom did the same for you all those years ago. It is so hard with doctors sometimes, they are looking objectively and they are relying on science and tests and things of that nature. That is what they are trained to do. But as a mom, or a loved one, who is closest to the sick person... sometimes you have a feeling about what is going on, or that something is NQR, and it can be hard to make the medical pros take notice. My mom has definitely been an asset as she can bridge the gap... she knows Makena as well as I do, and she's also well versed in all the medical stuff, so she's been immensely helpful in communicating with the doctors and helping me to articulate what it is I'm seeing and/or concerned about with her. My husband, despite being in healthcare admin, is a big pile of mush over all this and just can't think straight. He's incredibly cerebral and analytical but in this case, all he sees is our sick little girl. Great suggestion too in regards to finding a support group or something via the hospital. I do have two friends with children who have serious, chronic conditions and they have been immensely helpful. On top of everything, we've been trying to get in touch with Makena's birth mom to let her know what is up. We've struggled with how and what to tell her but came to the consensus that she should at least be made aware of the situation. We didn't want to worry her but I keep thinking about it and if I were the birth mom, I would want to know. And who knows, we may need some additional medical history at some point while we try to figure this out. Delia thanks for the reminder to take a breath and do something fun and normal! We've been holed up in the house for almost a month now and I think we are all kind of stir crazy. I sort of envy Marc who gets to go to work every day! This weekend we are going to take the kids over to my mom's for the day, we figured the change of scenery would do us all good. I could go for a really long trail ride in this lovely fall weather! I always find them kind of... cleansing?! Don't have the time but I did sneak out and hug Win last night. I pray all day and night that she wakes up tomorrow and is back to being her usual wild child, spicy self!! I know she'll get there. I want nothing but for her to recover completely and have no lingering effects. Anyway I greatly appreciate all the responses and the suggestions. Really you guys are always amazing when it comes to difficult situations... always so much thoughtful feedback. Off to eat some oreo's. One thing this has NOT been good for is my diet! So much for losing the baby weight... |
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| JanM | Nov 19 2010, 08:06 PM Post #223 |
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Off visiting Candy Cave, be right back.
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Flashy-stop worrying about baby weight and eat the damn oreos already!!! And if you want an ice cream sundae have that too!!! You deserve some time to yourself, and if eating relaxes you then go for it. This is no time to worry about the potential size of your butt, and remember as a rider all horses make our butts look smaller. And if you want to feel tiny someone on here will find you a nice percheron to borrow. We are all our own worst critics, and this is not a good thing for self esteem, or for relaxation so just stop beating yourself up already. I think you and your mom are right about an underlying illness that allowed the Kawasaki to emerge, and the other illness is taking advantage of the situation. It is time for your doctor to consult the biggest names in pediatric tick-borne diseases and do it before everyone takes off for Thanksgiving vacation. Apparently the Columbia University Medical Center Tick Borne Illness Center is one of the first and most experienced centers for the diagnosis and treatment of tick and other insect carried diseases. Maybe they could recommend someone, or would consult on the case. Years ago I wondered why the Chinese saying about " May you live in interesting times" is considered a curse, but I think I figured out why it is. Hope the little one heals quickly, and you all have an uneventful holiday period. Edited by JanM, Nov 20 2010, 09:24 AM.
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| headlesshorseman | Nov 19 2010, 09:26 PM Post #224 |
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You're BANNED!
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| Little Diva | Nov 19 2010, 11:09 PM Post #225 |
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You're BANNED!
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FG, I have no wise words to say that have not been said already by all of the wise and wonderful women here. But I will echo the sentiment that you need to NOT worry about your diet right now. Eat what you want, when you want. And remember to breathe. You are a wonderful mom and are doing absolutely everything right.
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You are a strong woman and I know you will survive. Hang in there my friend! and so will I! 

Please do take care of yourself. I can't imagine how stressful this is for you and your hubby.


7:08 AM Jul 11