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Sunday, December 27, 2009

Christmas!

I keep telling people Christmas just isnt the same when YOU are Santa! But it was fun and we made it through. We hosted Christmas Eve at our house again with 13 people! (Our house is about 1000 sq feet!) I had everyone bring something so I was just responsible for the main dish (Stuffed pork tenderloin-YUM!) and an appetizer. Avery was pretty good with all the people and excitement. She didnt want to go to bed so we let her come back out for dinner and she sat with us and had some tastes of our food. She couldnt have a lot of it though due to her allergies. In the morning she was excited to see the gifts under the tree and waited for Nolan to wake up so they could do the presents. Nolan was super excited. Neither of them cared much for the unwrapping though. Either way, they liked it all. After presents we went to the in laws for breakfast and more gifts. We took a long walk and then had to rush home to shower, get the kids napped and make an appetizer for dinner at Red's aunt and uncles. Luckily the kids did nap! And we made it to the dinner only 45 minutes late! Avery did great with her 2nd cousins (who she doesnt see that often). she mostly kept to herself but she was happy wandering around and finding books and magazines to flip through. There was also a toy stroller that she pushed around for a while. So it went well! phew!
This week will be interesting-Avery is off allllllll week! Tuesday we have our first meeting with her Regional Center Case Manager (which is what I used to do for a living!) And Im going to have her sitter/preschool teacher here to help out with the kids. Plus we have a few other things planned. We will make it through Im sure!
Here are some pics!







Wednesday, December 23, 2009

New Hubs

I've written 2 new hubs on hubpages about our experience since we have gotten Avery's Rett diagnosis. check them out here!
http://hubpages.com/hub/Rett-Syndrome
http://hubpages.com/hub/Rett-syndrome-part2
Enjoy!
PS: Lots of repeat info from the blog!

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!!

Friday, December 4, 2009

Great way to Donate!

Jeff and Sarah Canavan, whose daughter Kate was diagnosed with Rett Syndrome in March of this year, have started the Kate Foundation for Rett Syndrome Research. They have commissioned talented glass artist Michael Trimpol from the Little River Hotglass Studio in Stowe, Vermont, to create an exclusive collection of four glass ornament designs for Rett Syndrome research fundraising.
The ornaments are a breathtaking vortex of colors and make unique gifts for friends and family. Each ornament costs $35.00. All proceeds from sales of the ornaments will go to the Rett Syndrome Research Trust.

Go to www.katefoundation.org to see the beautiful ornaments and to purchase or make a donation!