rettsyndrome.org

Image Map

Sunday, December 13, 2009

Time is flying!

Its been a WEEK since I have posted here-I have to try to be better b/c now I am trying to remember all the important things that have happened!
Here are a few:
Avery's eeg came back ABNORMAL here is what I got from my ped: "Epileptiform features:focal spikes bitemporal and left central. Clinical episodes were not seen. 

Impression: This EEG tracing, recorded in wake and drowsy was abnormal due to focal spike discharges. This tracing is suggestive of possible increased seizure predilection.
Recommendations: clinical correlation"
If anyone has any iea what that means besides "she might have seizures at some point, let me know!" We have requested an EKG as well to make sure her ticker isnt doing weird things too but we dont have an actual appointment and when I dont have deadlines I tend to slack off.

Kaiser is giving me trouble with the Rett clinic referral. The new neuro wont refer till he sees her in person (which I kind of get but she HAS RETT SYNDROME so shouldnt that be enough?) The ped wont refer either b/c Kaiser treats patients with Rett and therefore it isnt needed. Well, I have a road ahead of me with this one. What's one more stressor!?

I met Paige Nues in person because she happens to live like 10 miles away from us. Paige is the Director of
Family Support for the IRSF and the founder of Katies Clinc for Rett syndrome at Children's Hospital Oakland! We are so lucky to have Paige and her family so close by. We actually feel surrounded by amazing Rett families both in the real world and in the virtual one. I am so thankful for the internet and facebook b/c it has connected me with amazing parents who are helping us even when they dont know it! Paige and I had coffee and chatted and we are planning to get both of our families together for one big playdate after the holidays.

Wednesday night we met good friends in the city for dinner and Son Volt at the Fillmore. Good times. If you dont know Son Volt, google and listen to any song-you will enjoy it!

Friday I went to see Wicked in SF with two awesome ladies. We had a great time-even in the rain and trying to maneuver the city via iphone map. that was my 2nd time seeing Wicked and highly recommend it!

Last night was the husbands holiday party with his company. We had a great time hanging with some great people.

Today we took the kids to the club for breakfast with their Poppa and then to a party in Tiburon where we got to see an amazing Santa. This is the 4th year we have gone to this party (friend of Mother in laws) and its a great one. This Santa is seriously the real thing! Here are some pics of him with the kids!





Today for some reason I started to think about how many words Avery has b/c usually I just say 10-15 but I counted and its over 20! Some of course are approximations like "BUH" for BUS or "BAHPAH" for backpack but I count those too. She continually amazes us with the things she attempts. She gets up on the couch a lot now and is really getting after stairs. :) But it not all fun and games, She still really thinks its great to slap, scratch or knock over her brother. Which results in lots of crying. which is alway nice. right.

oh, we have FINALLY gotten a tree! Now if we could get it inside and decorated!!

2 comments:

Kelly said...

We were originally seeing a neuro that "said" she was familiar with Rett Syndrome - Brooklyn's eeg according to her showed seizure activity - we were on keppra for a year and a half before we met with Rett Specialists (Dr, Neul) who read the EXACT same eeg report and said it read like a typical rett syndrome report - BUT did not mean she was having seizures - we weened her off the Keppra and she is doing FINE! I hope and pray you can get into wonderful specialists = it makes all the difference in the world!

The MacDonald Family said...

Hi Erica,

What a beautiful family! and wow, that Santa DOES look real! I'm a rett mom too and saw your post on the FB discussion. Avery is absolutly adorable, she looks about the same age as my Annie. Merry Christmas!