Wednesday, September 29, 2010

quick update before the busiest weekend of my life!

I have barely had a second to think lately b/c my brain is in its normal protection shut down mode by not allowing me to think about ANYTHING because I have so much going on! that doesnt even make sense but Im sure you know what I mean, right?

This weekend is going to be absolutely nuts. Its crazier and more packed than my wedding weekend!
Friday night dinner with friends.
Saturday morning Avery has her study appt. which we are really looking forward to! We will get to see Dr Skinner who is awesome and it will be interesting to hear his thoughts on how Avery has changed since March. Plus we get to see our Rett family who in just 11 months we have gotten to know so well.
Saturday night another dinner with friends. A huge dinner party of 24. Im making butternut squash soup shots! The theme of the dinner party is a local organic harvest dinner. When I will will get to the farmers market Im not sure.
Sunday is the Strollathon. We have been planning for months and here it is. I think we have it all taken care of and that everything will go smoothly. I am warning any friends and family that will be joining us-I might cry when I see you or cry the whole day. Actually Ill definitely cry when I see you. Its highly possible Ill cry a lot. It's overwhelming to think of the support we have gotten and all the people that will physically be there representing Team Little Goose. I hope I have enough hats! It should be a really fun day. We have already surpassed $61,000 in fundraising-so Im REALLY happy with that. Team Little Goose has over 13K!

So anyway. We are up to our eyeballs in behavior therapy! PECS and puzzles and new toys and lots of hard work (and candy). Avery has been doing amazingly well. This week is the first real "work" week with her awesome therapist. She definitely is adjusting and there has been a lot of fighting and screaming but today went very well. Avery started the day by going pee on the potty! then when she got home from school she peed on the potty again! (we are taking her every half hour or so) and the next time she went she pooped! Its pretty exciting and the Starbursts dont hurt!
We had a visit from the AAC specialist from the district today too. She gave me some great ideas for using Avery's Step by Step in the community and for other situations than just back and forth to school and home.
i feel like now we have a better connection to what is going on at school and can do some of those things at home. Her new OT and PT seem wonderful and have been communicating with me so well. Her ST is the same and is still awesome. Of course-teacher Diane is the best as usual!
So still working out a few kinks with Avery, lots to learn and try and make part of a new routine...
I have a cute video of Nolan to post soon too-have to get it off Red's phone first!
thats all for now...more after the 3rd!

Thursday, September 23, 2010

so much going on

there has been a lot going on here. mainly me trying not to think about the stress that is the Strollathon! I'm actually really NOT stressed about it, but that is making me stressed. Im pretty confident that its all going to work out very nicely. plus we have over 54K raised! not too shabby. Im completely blown away by the amount of generosity in the world. team little goose is going to be at least 40 people strong. I might just sob through the entire thing!

A few highlights of the last week or so:

Went to an awesome couples baby shower for some good friends on the 11th. I thought it started at 7. We got there at about 7:45 and on the way there I realized I wasnt so sure about the 7 start time. Called the sitter to ask her to look at the invite. It started at 6. I was mortified. Luckily it was mostly really close friends and they were very gracious about it! it was a lovely party!

I got monday night off and went to dinner with two very lovely ladies and had three very delicious margaritas. It was a fabulous night.

Had a Stroll meeting with Paige, without whom this Stroll would be a complete disaster. Watched the Giants take first place in the NL West by beating the Dodgers.
Took Nolan back for another semester of Music Together.
The Buccaneers went 2-0. For the first time in FIVE YEARS.
Went to the lafayette art and wine festival. with the kids. Wait this is supposed to be about the highlights....
played nine holes and shot a 63. Thats REALLY good. for me.
ate delicious home cooked burgers at Gramma's.
Signed the docs (again) for our refi. Pretty sure thats over.
Saw Willie Nelson with fantastic friends at a beautiful venue.

And mixed in between it all-Avery went pee pee on the potty at home SEVERAL times. and pooped on it at school! She is saying mommy, daddy, and buggy again! Her medication seems to be working. she is no longer doing all the opening and closing of drawers and doors over and over. she has been trying to play with toys. she has been sitting with her books. she isnt drooling. this week marks the beginning of some behavioral therapy-we have been gradually doing some and using a new PECS book. She uses them at school so she is familiar-but Im so impressed with how she is using her book independently! next week the AAC specialist from the school district will be coming to observe her at our home and we are moving towards getting some sort of speech generating device!

MediCal was finally approved! IHSS is coming for a home visit tomorrow. If we qualify for IHSS, that will mean that I can be reimbursed for certain things I have to do to take care of Avery-basically things that a typical 4 year old would be able to do on their own. We will see. Here are some pics!

they made me do the beer bong!

Sunday, September 12, 2010

a pretty good day

Sissy and Poppa leaving the club!

Every so often we get brave and we go meet poppa at the club for breakfast. Ok, not THAT brave because they know us pretty well there and usually there aren't many people dining at 9am in the clubhouse so its pretty safe for us. Baby steps!!

It has been a while since we have been and I was nervous to go with both kids-its always a difficult juggling act trying to get food into mouths and not on the floor and eat your own food at the same time! The kids love to see Poppa anytime and they were both really happy to see him there.

I have gotten smart and I order the kids food as soon as we sit down so they don't have to wait too long. Avery and Nolan both used booster seats today-first time out of the restaurant high chair for Nolan! He dug it. And he was really good-and not too gross. Besides the time he dipped his bacon in the butter dish.

I bet you can guess what happened with Avery-- NOTHING! She was awesome. She was QUIET. She didnt drop a morsel of food on the floor. She didnt throw any plates or utensils. She didnt SCREAM. It was wonderful.

And later we went to Target and she was GREAT. if not for the arm brace, the constant tapping of the cart handle and the weird things she says (gy-yung gung! bung-ge-dung!) she seems like a regular old kid! We even ran into some friends and she was totally calm during my stop and chat with them. All in all, a good day. yay for that.

Tuesday, September 7, 2010

Three in a row?

It's really true. Avery has been amazing for the past three days. Amazing. I haven't once lost my patience. And that is a straight up miracle. It started on Sunday when we at the last minute decided to take the kids to the zoo. She was great in the car. Even though we stopped on the way and took forever getting there. she held our hands and walked the whole time we were there. She didnt scream once. We saw the alligators, the bats, the reptiles, the tortoises, the monkeys and the tigers! She tried to drop to the ground once while waiting for the train ride but we got through that without incident. She got a teensy bit antsy while waiting for the merry go round. But we got on and she waited patiently. She rode so nicely and then we headed back to the car. She giggled in the car home. Red and I kept looking at each other like "what"? We felt like a regular old family. It was awesome.

What is the difference? Is it school being back in session? Is it the medication? Is it just Rett syndrome letting up a bit?

What else is awesome? She is saying DADDY all the time again! And a few MOMMY's too! Lots more giggling. Lots of hugging Nolan. Lots of eye contact.

The behaviorist is getting to work with our new "behavior tutor" and brought us a new PECS book today with actual photos that I took of Avery's stuff. She used it already tonight to request goldfish and her sippy. And the bus-we will have to make sure that isnt always a choice! Im excited for this and excited to have someone to keep me on task and keep me honest about actually doing what Im supposed to do!

Im hoping for lots of more positivity!