I am so glad we did the sleep study, AND I am SO glad it's over! It was a very hard night. It was so hard on me because it was really hard on Chloe. She was covered in wires from head to toe - literally!
She did almost all of the weird things she does at night, so it was captured on film and monitors for doctors to see and evaluate. With my crash course in neurology, I'm pretty sure there was some seizure activity on the EEG. Of course I wish she weren't having seizures, but if she is, I'm glad they captured it so they can give her proper treatment.
The sleep lab assistant said she has never seen someone scream that much during the study. Needless to say, neither of us got much sleep. And fortunately there were no other patients on the floor that night! Chloe and I are still recovering from the rough night, and looking forward to the upcoming tests - two MRI's & an EMG - all under sedation. I'm so anxious to get all the results from all the tests. I've been doing a lot of research and have a few ideas of what is truly going on. I just need the tests to let us know for sure so we can get proper treatment. Of course I will keep you all posted, but don't hold your breath. All of this will take several months, but it will be worth the wait!
Update on the house remodel: We're coming right along! The windows are in, most of the concrete is done, some framing will be done tomorrow, then the roofing and siding will be done next week. And we plan on having the inside pretty much done in about two weeks. Wow, we can hardly wait!
14 comments:
So glad the sleep study was successful. Sorry to hear about the rough night, though. Hopefully you'll have all the answers your family needs so Chloe can continue to flourish and thrive. She's so cute, even if she is covered in wires! :)
Good luck with the remodel. I'm so excited for you and can't wait to see what things you'll do on the interior. I'd love to see some pics of the current progress too!
Glad the study went well?! I'm so glad that you will be able to get answers and proper treatment for sweet Chloe!!
I drove past the house last week. I haven't been that way in a while, but we wanted to see if the new roundabout was done, and I was trying to get a crying baby to sleep! Maybe we'll have to take the ride again so that I can see your exciting progress!!!:)
Oh I hope they can help you two!! I hope you guys recover from what sounded like a not so fun night!! The prayers will continue for little Chloe!!
I just watched your videos with grandpa at the skate park!! HOw fun for her!! Tucker now does that kind of stuff all by himself and it scares me all the time!!! Sometimes I can't even watch! But the smiles are always worth it!! SHe looks like she was having a ton of fun!! :) Excited to see your progress on the house!!
Bless her heart and yours too. I know she was miserable with all the stuff on her. Crossing fingers that it gives you and the doctors the information needed.
HUGS
Best Wishes on these next steps in Chloe's diagnostic workup. Her beautiful parents too!! Take good care, Tara, Chloe and Oby are Uber Lucky, Blessed to have you as the Mommy. Best Wishes on your new house too.
So glad that the sleep study went well for you.
Poor Chloe!
I hope the test results come back quick.
It sounds like your moving right along with your house that is so good.
I'm glad that the test was able to capture most of the "weird things" Chloe does. You are both troopers. It doesn't sound like a fun night, but like you said, it's worth it for answers. If you and Chloe were here in Boise, I could be your nurse for her MRI's And EMG. That's exactly what I do, and I take care of kids like Chole all the time. Are they using diprivan or nembutal for the sedation, or maybe something totally different? I like diprivan/propofol the best if you get a choice. You've probably been through sedations in the past though so you know what's up. Best of luck with everything coming up including the house. How exciting!
Ok, she looks too cute!!! Down right Yummy!!! I pray for continued progress for your little one:)
God bless you all:)
It must be nice to have the remodel to distract from some of the medical things. I'm glad that you are getting all these tests done. I hope they are truly helpful in Chloe's future.
I hope you get the answers you need. Been there and you have my prayers. Kiss her once for me.
The stroller wheelies were so cute!
I can't imagine how hard it is to sleep with all that going on around you!! Glad you got the sleep study done and even happier that you continue to fight for your daughter's needs!! I am giving you an award later so stop by!
So sorry to hear about how rough the night was, but glad there were able to get that stuff on record. Hope that they can give you some answers and some help! Hope you all sleep well tonight!!
Glad you'll be able to get answers!!
I didn't get to read your other post in time, but I understood what you were saying:) I'm glad she almost everything she's been doing at night. This should really give the doctors some ideas and help them understand more of what is going on. My daughter had an MRI a few years ago, and even with no sedation she did very well, so I think Chloe will be fine. Actually I had one years ago and freaked out but kids seem to do better than adults!
I know this will all take time, but I just know it will all be good and help Chloe.
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