Thursday, August 29, 2013


Here I sit in the Bronx, watching sweet Lu sleep in a giant steel crib. She's having an extended EEG to monitor her irregular breathing and staring spells. I'm anxious to know what is going on and what, if anything, can be done about it, but I also hate being here. Especially since we just got home from vacation and had to leave again so soon, and because only one parent can stay in the room at night so Chad has to go stay in a little "apartment" that's 95 stupid dollars a night. But, when we took Lu to Geisinger earlier in the summer, they were just like, "Yeah so what she has an abnormal EEG." And, "Girls with Rett Syndrome have irregular breathing, that's all it is." And here they are like, "Oh my something is going on, let's see what it is. We care."

Just to recap, here is what hasn't been going well for Lu this summer:

-near constant hyperventilation episodes throughout the day, occasionally being preceded by breath holding
-staring spells that include slumping over, drooling, and unresponsiveness
- she has lost the ability to remain sitting upright reliably and consistently
-has lost the majority of her remaining hand functioning
-has been having so much trouble chewing and swallowing that she has lost 1.5 pounds in about a month, has started needing to have her food puréed, is drinking Pediasure a couple of times a day
-painful hiccups
-increased muscle tone
-Lu has barely been able to use her PODD due to all of these difficulties

So, the doctor we saw today called it a regression, even though there isn't really supposed to be more than one regression period with Rett Syndrome.  But, I have been saying all along that was what was happening. It took us awhile to get it in order and to actually get here, but here we are, so they will see what they can see. 
Always a trooper! The bravest girl I know.



  1. I am praying for Lu and also for you and Chad!

  2. Prayers for all of you that the tests may show what's going on and perhaps even ways to begin to work to overcome any of the issues currently present. Peace, Julie -and Faith and Perseverance!

  3. Keep us updated on what they find! Hopefully this will provide insight to help Lucy get back to being Lucy AND to have her in tip top shape for when her Tobii arrives!

  4. Sending love, and hugs Julie!

  5. Thank you all for you kind thoughts. We are hanging n there this morning, even though Lu was up at 4:00am!

  6. Love you and hope you get some answers!