Bad phone camera pic. I also look a little beat. We didn't get our own room this time and my roommate was a little less than stellar. Apparently she is not on the same schedule as the rest of the world : )
We were once again admitted to Primary this week. We went in Thursday morning to see our amazing neurologist Dr. Filloux, he wanted to check in on our little girl to see how she is handling the high dose of steroids. I think we are all disappointed that she hasn't perked up. He decided to get blood drawn to test for horrible degenerative/regressive disorders and diseases. I really can't believe that this is happening...
After a three hour ordeal of trying to get some blood (they had to call the IV team down, apparently Lila has tough veins) we had to rush to the next department. My Pediatrician wanted Lila to have a swallow study. They hooked her all up while we watched on a screen her swallow some dye. She failed immediately. Lila has been having silent aspirations for who knows how long. Meaning she doesn't cough when liquid goes into her airway, and with every swallow a significant amount was going down her airway. They told us that we were being admitted and that Lila would need a NJ tube. Like our NG feeding tube, but this one had to be placed by a radiologist because it goes past her tummy into the intestine, it also connects to a continuous feeding pump. We are no longer allowed to feed Lila anything orally. The irony is that she had just perked up on her eating and was feeding like a champ.
While we were admitted Dr. Filloux suggested we repeat the EEG since we were already there and all. I was not hopeful in the slightest. Surprisingly though her EEG has improved!!! Dr. Filloux called us from his vacation where he had interpreted the results remotely. How nice, huh? So he decided to up her dosage to see if we can not just improve her brain waves but that we can hopefully normalize them. I am thrilled by these results but still a little frustrated by that fact that she is not perking up then. I hope her smile and coos come back to me soon. I am missing them so much.
Lila's new accessory.
7 comments:
love you little miss!
oh my word! I really cannot believe all you have been through. Does it ever end? you are going to one tough woman when this is all over. have you been seeing Dr. Wirkus? Is that who suggested the aspiration test? It sounds like you have an amazing neurologist! Isn't it amazing what a good doctor can do?
That is such great news about her eeg and I pray you are just around the corner to alot of answers!
best of luck!
xoxo
Danielle
I, too, pray that you will be getting lots of answers, soon!
"It is extremely important for you to believe in yourselves not only for what you are now but for what you have the power to become. Trust in the Lord as He leads you along. He has things for you to do that you won't know about now but that will unfold later. If you stay close to Him, You will have some great adventures. You will live in a time where instead of sometimes being fulfilled, many of them will actually be fulfilled. The Lord will unfold your future bit by bit."
— Neal A. Maxwell
know I love you all!
Back to Primary's again... I am so sorry! Although, that is so exciting about the eeg!!! You guys are in our prayers.
P.S. Quinn makes that backpack look good!
Kristi, I hope you don't mind that I have been reading. I am so sorry I haven't commented sooner. I think about you and the your sweet baby so often and I hope you know so many people admire the way you are handling this huge trial. Lila is SO gorgeous, sweet, inspiring and special. So are you!! Life is so hard sometimes, I know, I'm sure I have not handled anything like you are but know that you are such an example and that Lila and you and your Husband are amazing. Thank you!!
Kristi that was my comment under Gae (thats a my Mom.) I didn't know when I was commenting on her computer that she was still signed in. Sorry about that ;)
-Lindsey (baker) Thompson
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