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Here’s to a Healthy 2015! January 1, 2015

Filed under: Uncategorized — ryangrace11q @ 2:58 pm

Hope everyone had a wonderful holiday season!  We sure did!

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Festival of Lights

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Mommy helping Ryan make a gingerbread house at school!

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Ryan had a time out because she was being a “bad girl” with the ornaments!

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This was the Santa at Ryan's school.  He was so sweet with her and told her he loved her.

This was the Santa at Ryan’s school. He was so sweet with her and told her he loved her.

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Xmas Eve at Grandma and Grandpa’s.

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Happy kids

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Kisses for Mickey

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Kisses for Great Grandpa

Many people have been asking about Ryan’s IVIG infusions.  I’m not sure why I haven’t written anything about it yet, considering she’s already had 5, but sometimes time gets away from me.  Go figure.

Because of Ryan’s low immunoglobulins (AKA antibodies, AKA germ fighters) she used to get sick a lot.  A LOT.  After our trip to California where we got to talk to the 11q immunity expert, we requested to have Ryan’s blood drawn yet again to check her immunoglobulin levels while she was under anesthesia for her MRI.  Up until that point, even though her levels were low, her illnesses were pretty much under control because she was taking a prophylactic antibiotic.  After the round of blood work this summer though, we were told that her numbers were low enough to warrant starting IVIG.  IVIG = intravenous immunoglobulins = antibodies extracted from the plasma of over one thousand blood donors and it’s effects last between 2 weeks to 3 months.  Ryan gets her IVIG at the hospital every month.  It is a very long day.

Cincinnati Children’s has a “day hospital” for kids who are getting chemo, IVIG, and other stuff that hopefully we will never know about.  We get there by 8:30 and get set up in our room.  The first time we were in the tiniest room with a crib, a chair, a desk, and about a million pieces of medical equipment packed in.  It was awful.  The others took place in much bigger rooms with actual beds so we could climb in and snuggle up with Ry.  Several things have to happen before the infusion can start.  One is getting all her vitals.  Ryan absolutely HATES when people touch her and it’s not on her terms.  Oh, she’ll hug a complete stranger if they let her, but put your hands on her when it’s not for affection and she freaks.  The blood pressure cuff has to go on her leg – so she won’t see it.  And when they take her temperature (which is only a thermometer under her arm, mind you) it’s as if someone is torturing her.  These pictures are from the first round.

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The tiny room. We could barely fit.

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Seems like a good start…

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Nevermind.

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Physically and emotionally exhausted.

Then they order her some Advil and Benedryl for pain and just in case she has an allergic reaction.  Sometimes it takes a while to get that, which just prolongs the start.  Finally, the Vascular Access Team (VAT) has to arrive to get a good vein on Ryan for the IV.  Getting a needle in Ryan is miserable no matter who does it, but the VAT team will get it on the first try, at least… unlike the overconfident nurse that tried yesterday.  Why did we even let her have a go at it?  We knew better.  The VAT goes as fast as they can but getting everything set up takes a while… especially if they need to draw blood first.  Then finally, we are good to go…. by then it’s around 10:00.

Meds

Meds

She needs her Mommy

She needs her Mommy

I know this is a rough picture.  We have to hold her down while the IV gets inserted.

I know this is a rough picture. We have to hold her down while the IV gets inserted.

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They put this little protective thing over her hand so she doesn’t rip out the IV

The IVIG bag is set up and then it’s all about making Ryan as comfortable as possible for the next couple of hours.  Sometimes she sleeps, sometimes she watches TV, she rarely eats.  I know it’s different, but the closest thing to compare the process to is chemo (I’m comparing the process, not the purpose).  Ryan just needs to sit there while the drip goes.  But with Ryan, the IVIG may never come to an end.  This is very likely a lifelong process for her.  Only time will tell.

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What a little sweetie.

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Various stages of snuggle.

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After a few hours, the shit hits the fan again when the IV has to come out.  She hates getting the tape taken off of her arm – the process is just as bad as getting the IV in.  But when that is over we get to go home… and do it all again in a month!

Here’s to a healthy 2015 for us and for all of you too!

 

2 Responses to “Here’s to a Healthy 2015!”

  1. slimsully Says:

    So how will you know if it’s improving things and is it possible that you might be able to go less frequently in the future or is it one of those things where its just better safe than sorry to keep going monthly?

    • ryangrace11q Says:

      Right now it’s a better safe than sorry thing… but it will all depend on her blood work. It’s possible her own body will start to do it on it’s own, but quite possibly not. 😦 Thanks for asking!


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