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Where's Quill been?


GinaPagnato
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Aww, shucks, friends! It’s nice to know I have been missed. I am on a board break. I am trying to focus on some things IRL that are suffering from lack of attention. I do think about my cyberfriends every day; I wonder how Hornblower’s treatments are going and how Blessedmama is doing and little-big Benny. I read SWB’s Rethinking School and very much want to discuss it here!

 

If you’re into prayers/good vibes, my MIL suffered a fall and fractured her back. Things are not good for her right now and it’s hard on...well, everyone. My daughter is out of the country and - I know it sounds selfish. but - I pray MIL remains alive while dd is not here. My niece is also planning a wedding and it’s just pretty ominous having Grandma flat in bed while these happy things are going forward.

 

Thanks for thinking of me.

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Hi Quill - sorry to hear about your MIL. I hope things turn around for her. 

& I'm sure you're missing your dd. 

Thx for thinking of me! I'm still waiting to hear the team's chemo recommendations. I will find out on Feb 9th & will update then. I'm feeling fine & keeping busy :) 

 

:grouphug: to you my friend. 

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Prayers for your mil.

 

Did she fall while at your house?

No. She is staying with SIL who lives in another state, down south. She fell because of unstable bloodpressure. :(

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In some ways I am guessing that is harder because I’m guessing she’s in a hospital down there and most of the family is up this way.

Yeah; she is not in the hospital at the moment, but it is difficult in that the rest of the family lives here. But in a way, I am glad she was with this SIL, because SIL is retired and without kids, so she is the most able to provide the large degree of assistance needed at present. She also has a nurse coming daily to help as well. But the distance is a bit of an obstacle, yes.

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That’s a lot going on! Your poor MIL :(. I’ll be praying she hangs in there until DD comes home. And weddings are fun but it’s definitely hard to enjoy when a loved one isn’t well. Hugs :(

 

Benny is still working on sitting and not crawling. But the little stinker charms everyone to get his stuff for him. He has the entire household wrapped around his sweaty little baby fingers :p

http://vsco.co/mulverry/media/5a75da75b865596f143cf15e?share=MTUxNzY3MzA4Mg%3D%3D

Such a precious budgie. Was it determined whether or not he is having small seizures, after you posted the video of him in the high chair?

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He was having seizures, we think they are myoclonic seizures/spasms, not infantile spasms, which is good. They actually kicked up in frequency until we were have three dozen or so per day. So we put him on a seizure med (Keppra) that made it worse, and then switched to another med (Topomax) which has really helped. He is still having a handful per day but it’s much improved and the seizures, right now, are under control enough that they shouldn’t be affecting his development :)

Have they mentioned CDB oil as an adjunct? The myoclonic spasms sound like a friend of mine' s son, who was diagnosed with Dravet syndrome. He takes CDB and Topomax, which is very effective for him.

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