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TOC jingles needed for Makena; I think Flashy's too busy to ask...
Topic Started: Nov 2 2010, 06:35 AM (5,119 Views)
jillincolorado
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Monday ***JINGLES*** for Spicy and her team!!! Hope you are all getting some rest and feeeling better. I know Colton is certainly happy to have his Momma around again. :hug:
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Boston
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Continued :jingles: 's for Spicy girl and :hug: 's for you all!!
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Witchy
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Just wondering how the little one is doing? :jingles: :jingles: :jingles:
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RNB
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Guiding your way to Candy Mountain, since 1873.
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Still sending :jingles: :jingles: :jingles: :jingles: from VA!!

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FlashGordon
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Witchy
Nov 8 2010, 07:30 PM
Just wondering how the little one is doing? :jingles: :jingles: :jingles:
Hey guys... she's doing ok. She seems to be better in the mornings and as the day goes on she gets more and more rundown. She is wanting to play and is much chattier than she was last week, so that is a great thing! She doesn't seem as hydrated as I'd like, I'm really kicking myself for not giving her an extra day in the hospital. I've been pushing juice and popsicles at her non stop and luckily she's taking them, so we'll catch up eventually....

The exhaustion and anxiety has hit both hubby and I now that the adrenaline has worn off!! Luckily family and friends have been wonderful and I've got someone here to help me with the kids every day this week, plus meals lined up for most of the week too.

We are headed back to the doc again this morning for some bloodwork. Poor kid she's going to freak, she is not such a fan of needles!! (who is?!?)

Anyway thanks for the continued jingles. I still feel like she's in kind of a fragile state BUT I know we are on the upswing now.... just gonna take time!!
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Buryinghill1
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:hug:
Spicy needs one of BH2's cupcakes <;)
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Reynard Ridge
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Glad to hear that you real life community is so supportive! :clap: Meals and help with the children is invaluable. I am glad to hear you and hubby have been able to rest a bit and are catching up with the frazzled.

Continued good wishes for a return to perfect health for your darling daughter!
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FlashGordon
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I hate to revive this thread and dredge up negativity in the midst of all the fun SS and puppy threads... just need to vent really. My poor wee one is just not doing so hot. Right now she's laying on the floor watching a cartoon. That is what she has been doing 98% of the time since we've come home from the hospital. :( She is sleeping 13+ hours at night and napping 2-4 hours in the afternoon. She occasionally asks about preschool but doesn't want to go anywhere or do anything. I took her outside for 20 minutes on Saturday and she was a mess the rest of the night. She's also still developing some new symptoms from the Kawasaki's and we've had some weird swelling in her left foot for which she is seeing the Cardiologist on Monday.

I'm trying so hard not to worry about her but it is impossible. She is so far from her normal self. I checked in with the Ped on Monday but think I may call them again this morning. I know there is not a lot they can do, but I just want to be sure this level of fatigue is normal and that the symptoms we've seen come on over the last week are just par for the course.

Edited by FlashGordon, Nov 18 2010, 06:56 AM.
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onthebit
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Flashy I don't see how you couldn't be worried. More jingles for Spicy Kena!
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Trialbyfire
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:hug: :hug: :hug: :hug:
Don't be silly about reviving this thread....! Now I feel bad about posting puppy pictures - such a silly thing in compared to what you and your poor dd are going through! Huge TOC jingles to Kena and your family.

Do you have a specialist doctor now? As much as I'm sure your pediatrician is interested in the well-being of your daughter, I wouldn't necessarily depend on a general pediatrician to know about any specific disease or condition. That's just not what they do on a regular basis and you don't want to mess around assuming things are ok....I hope they are, but still.

Have you found any good internet resources for the disease? I know nothing about it, so I can't even imagine what it actually *is* but finding some other parents with kids who have the same thing might be really helpful just so you can compare notes.....

Don't be shy about asking for more information. You're Kena's best advocate -- it's impossible for the doctor to know if her level of fatigue is normal, but you know it's not. If they say "she'll be a little tired for a while" it's up to you to say "ok, on a scale of 100% being her normal level of energy, she's at a 30....or 50...or 75% of energy....is that ok?"

I always remember when my older dd would get strep throat the doctors would say (before doing the culture) "so, sore throat, lethargy, fever....that's why you think strep?" And I'd say "No lethargy, stomach ache, glassy eyes, low grade fever"...and they would always tell me it wasn't strep until the test came back. Even once when the quick test was negative....they called 48 hours later to say "yep, you were right."

You know her best...don't be afraid to be demanding. :)

Sending big hugs and jingles......

:hug: :jingles: :hug: :jingles: :hug: :jingles: :hug: :jingles:
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Black Tack
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^^^^^ Flashy, listen to Trial. She is wise :yes:


You are her advocate and you know what's not "her". Bug people. Until you get results.

And never worry about coming here and venting :hug: :hug: :hug: We would be upset with you if you didn't :hug:
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FlashGordon
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Thanks OTB and BT for the jingles, and TBF for the good ideas!! I agree that at this point maybe we need to be seeing a Pediatric Rheumatologist or something of that nature. With the Children's Hospital here in town, I'd think there'd be *someone* they could refer us to that might have more experience with the disease. I know the Cardiologist is a key player, as the Ped is most concerned about cardiac complications, but I think we need to address some of the other stuff too. The poor kid has such sore joints she can barely walk some day. :( Obviously I don't want her on a boatload of meds or anything like that, but I just want to be sure that the progression of things is normal... especially since she's had the recommended treatment of IVIG. I for some reason thought that would essentially kick the Kawasaki's in the butt and we wouldn't be seeing these other residual issues??

I've been doing some research online... I've been looking for a forum or such that would allow me to find more personal experiences with Kawasaki's. Initially I tried not to read too much on the internet because some of it is scary, and I didn't feel like I had enough info yet from the docs to be able to differentiate what online was truth and what was inflammatory, kwim?

The pediatrician did say my instincts are good and that they partially caught this so early because I was persistent about them addressing her "vague" symptoms. By the time the really bad ones came on we were already in the hospital. So you are right... Mommy Instinct is sometimes really spot on. I second guess myself occasionally but need to remember to trust my gut.....

And PLEASE do not feel bad about the puppy pics!!! I love them!!!! :) They cheer me up. ;)

Ahh babe is awak must run... thanks guys for letting me vent.....
Edited by FlashGordon, Nov 18 2010, 07:46 AM.
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stephjm
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Flashy, NEVER feel bad about venting to us here. :hug: You are Makena's mother and you know best when something is wrong. You are doing great at being an advocate for her and making sure everything is all right. As a mother myself, I would be worried if I was in your situation. Keep bugging the doctors until you get some answers.

:jingles: :jingles: that everything is back to normal soon, or that you at least find out Makena's present symptoms are normal for now! :hug:
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Indy
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:jingles: :jingles: :jingles: :jingles: for Kena and :hug: :hug: :hug: :hug: for you!
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Witchy
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Is it possible that there is something else going on too? A friend of mine has a daughter that has Mono and Lyme disease at the same time. They figure she had the Lyme for a long time, but the Mono reactivated it and she was insanely sick.

Do not be afraid to be pushy with the Drs. They are humans who tend to cut corners just like ever other person on earth.
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