Tag Archives hospital

IVIG received – much needed

On Tuesday, we headed out to our other new hospital – Huntsman Cancer Institute in St. George.  This is where Haven will get her port flushed every 4 weeks, and then every 6 weeks she will get her labs drawn, and then every 8 weeks she will get IVIG.  So, we actually get a one…
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Discharged!

Ava was discharged from CCHMC 🙂  Her EKG showed sinus tachycardia, and she now has to go to the cardiomyopathy clinic regularly and get echos every 6 months. She has to have an echo within the next week or so.  The cardiologist explained that since she has Mitochondrial disease, she has to be followed closely by…
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Johns Hopkins / MIX 106.5 Radiothon

WOW!!! We got our card from Hopkins thanking us for being part of the 2011 Radiothon. We’re so happy to be able to do this. We’ve met so many families being part of the Johns Hopkins family for almost 4 years. You can check out all the 2011 kids – HERE. Thank you to every…
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Hospital pictures

Just to show you that being in the hospital for 3 wks isn’t all bad for her.  (taken by my cell camera) Painting: Playing in a box:
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Missing Home

Ava is still inpatient and and has been having a grand ol’ time here.  She got her wheelchair today (pics coming!).  She’s meeting new friends and is turning into a very social girl. She’ll even hug a couple of her nurses!  She and her friend Derby have become the girls of A6 south!  They’ve been neighbors for…
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Ava’s new blankie!

I’m sorry I’m out of the loop this week.  Ava is sick again and we’re trying (and failing) to avoid the hospital again.    This Spring is being so rough on her, worse than Winter. My girl is struggling lately.   I did want to thank Lacey at Jaxson’s Blankies For Babes for her beautiful blankie they made her. …
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When everything stops

It has been a very long time since Jonah and I have made an update on our journey together. We have written several posts about cloth diapers, rice cereal, and homemade baby food, however when events took an unexpected turn two weeks ago, I could not find it in my heart to post any of…
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