Thursday, July 29, 2010

a few things

This week we heard from the summer school teacher that Avery said HOT and WATER in class the other day. HOT was not used in context but WATER was!?? WHAT?? I have not once heard her say WATER-not even WAWA. So that's pretty cool. She has been using her step by step communicator (small device with a large button that is capable of having multiple recorded messages played back) in school for snack and at home to "tell" us what she did at school. We then record messages back for her friends. She is pressing the button pretty well now and its nice to see her smile in reaction to the messages. We are going to keep it over the break and try to use it more at home everyday. Its the first step in a long road of communication devices!

Also when Avery got home today I looked over and I could tell she was going potty so I took her to the toilet and she went on the potty! She was pretty pleased with herself. I was REALLY pleased!

On Monday we saw Avery's guardian angel Dr. Mary. She suggested we increase the Tenex as she watched Avery zoom around the entire office nonstop. So on Tuesday we began giving it twice a day-so basically just one pill a day, 1/2 in the morning and 1/2 in the afternoon. She has been a bit sleepier at school but hopefully by the time the new school year starts, everything will be settled in. We do think it is working. Today the sitter told me that Avery was VERY good and sat for about 15 minutes twice. Once to read books and once to play with her little toy laptop that lights up and sings. Amazing. We still have a ton of yelling and screaming to deal with though. I may have to start thinking about the yelling being related to some kind of pain because it does come in spurts but who knows.

Tomorrow is the last day of summer school. Three weeks or so till the new school year-lots of pool trips in my future!

Friday, July 23, 2010


uuuuggghhhhh! I keep forgetting that I am also the parent of a typical kid. poor Nolan gets no love here! The title of my blog says FAMILY, not just Avery. So let me brag about Nolan for a minute. One thing that wont happen in this post-me complaining about the totally typical and annoying things kids can do. I relish those things. Sure I can roll my eyes and let out a few heavy sighs on a daily basis, but when it comes down to it, I love it. When I was pregnant with Nolan I had hoped for another girl. I knew what to do with a girl and we had all the clothes! I wasn't that jazzed about the possibility of it being a boy-so when we had our 20 week ultrasound and she told us "it's definitely a boy" I was in shock! Not bummed but totally shocked. I can say now that I love having a son. Im so glad this is the way it happened. (im still holding out hope for another girl but thats another post!)
Nolan is on his way to becoming a very talkative and active 22 month old. He is saying some three words phrases ("where'd it go?", "i get it", "i see it", and some funny things like "NO MINE" and "GO AWAY". too much. He is starting to try to sing the ABC's and tries to count too. he says 2, 5 and 9. He calls me and Red "hun" because he hears us call each other that. He pretends with is phone and plays instruments. He dances and JUMPS! He can climb up the rope ladder on our playset by himself. He is a cuddle bug and gives the best hugs ever. he kisses right on the lips. He can pull his pants down, take his jacket off and tells us when he has a dirty diaper. He knows over 10 body parts. He is super social and adapts easily to new situations. He throws the ball pretty well and we are working on that golf swing! Nolan loves his sissy-in fact it is usually the first thing he says when he wakes up "Sissy?" He is honestly a joy. It has been bittersweet to see how easily things come to him-especially language. It is making us realize how very delayed Avery was at his age. But, it has been so special to see a child just be typical. We got two pretty awesome kiddos-couldnt be more different-but equally awesome.

Wednesday, July 21, 2010

nolan makes us laugh


here is a video of Avery taking her cake down on her birthday! We wanted to feed it to her but she was shaking she wanted it so badly!

Thursday, July 15, 2010


IRSF is in the running for a 250K grant from PepsiCo in their Refresh Everything Contest. We are currently in 5th place with the money going to the #1 and #2 spots only. We were in 3rd and are now in 5th. The #1 spot is being held by a hip hop academy. Im all for music in the schools but this is crazy! Please visit and vote every day this month! Please help us get one step closer to a CURE for Rett Syndrome!
Oh and tell your friends!!

Wednesday, July 7, 2010

she's 4...

Four years ago tonight i was on this very couch-having contractions. Not real ones though. I was scheduled to be induced the next day and in preparation for it, a foley was placed in my cervix to dilate it to 3cm. Not a fun procedure and I was in pain-counting the minutes between my contractions like a silly first time mom. We woke up early the next morning and went in for the induction. I was 41 weeks 3 days pregnant and READY for this baby to come out. My poor little feet weren't used to carrying that load around-plus it was HOT. Many of you know the story of Avery's birth so I wont go in to detail here. I was basically on pitocin forEVER and then ended up with a C-section for failure to progress. Everyone there told me it was an emergency-but I didn't notice.
The nurses who had been working with me knew about my silly hatred of odd numbers and how bummed I was that the baby couldn't have come on her perfect due date: 06.28.06-all evens! I had hoped my Dr would let me be induced on june 30th but she wouldn't. So we had to have the 7 ruining everything. At least we got the 8th.
I'll always remember how cool I thought it was that they were cutting me open and I couldn't feel a thing. I was amazed. I also remember thinking-wait-shouldn't it be dark in here like the OR's on Grey's? Who knew operating rooms were so bright!?
Then she was here. And Red got to look and see that it was a girl and he told me with a cracking voice "It's a girl" because he knew how badly I wanted the baby to be a girl.
She didn't cry right away and I got concerned asking "is she ok, is she ok?" And she was. All 7 pounds 9 ounces. The nurse whispered to me that she was born at 8:44 (all EVENS!) yay. They asked for her name... Avery Anne! I announced through chattering teeth (from the anesthesia)
We stayed in the hospital an extra day (even though they tried to kick us out) b/c Avery lost 11% of her birth weight, wasn't latching well and was jaundiced. None of this sat well with me and refused to leave her there while we were discharged. So we stayed. 5 days. I was afraid to leave. What would I do without the nurses and the pain meds and... the nurses!?
We were both so overwhelmed when we got home and I couldn't look anyone in the eye without bursting into tears. Whose idea was this? What were we thinking?
And now she is 4. These past fours years have been wrought with heartache and tears and questions and googling. I lost my mom when Avery was 7 months old and part of me is so glad she never knew that anything was different about my Aves. She would have driven us all nuts if she had!
Anyway-I realize now that I have been avoiding the subject of her birthday in my own head. We aren't having a kid party for her this year. She isn't in her day care anymore and summer school just started this week-so there aren't any kids to invite. We could do a party with the children of our friends but then Im just throwing them a party and not one for Avery-but then am I? Even if she isn't participating in the fun is it getting in somehow? So I feel like crap. Im really sad. We are having family over for dinner and cake on Sunday. Everyone that loves her the most will be there so I guess there is something to be said for that. But I should be throwing her a huge princess frilly party with pedicures and tiaras. (When did that trend start? I didn't get my first pedi till I was in my late 20's!)
Most moms with kids this age are lamenting that their children are "growing up" and "getting so big" and "aren't babies anymore"...guess what? Thats the point. That is why we have kids-for them to grow up and move on and become their own versions of themselves.
I'd give anything to be sitting on this couch feeling sad about my baby growing up. Instead Im sobbing because my 4 year old still seems like a baby in so many ways. She has only a handful of words, screaming and crying are her main forms of communication, still wears diapers and sits in a highchair while I spoon feed her all her meals. I dress her in clothes that I pick out and put her shoes on and take them off. She should be dressing herself in hilarious outfits with two different shoes and sunglasses on her head.
Again, I have to say-please dont read this and think we are ungrateful. We know we are so lucky in many ways but sometimes I just need to be sad about it. I know it doesn't do me any good. Or maybe a good big cry every so often is better than tears everyday. yep, that's it.
Happy Birthday to Avery Anne, our hero. So many people love you little girl and you give us so much. You are getting so good at hugs and kisses. Those dimples are ridiculous (thanks Daddy) and that HAIR! I hope every day that we will be able to take this all away from you and we can know what you are thinking about. I hope every day that we are doing an ok job at being your parents-I know sometimes Im not a great mom and you might want to fire me and get someone else for the job-but you don't. Thanks for being patient with me as we figure out this new life.
Next year-princess party. Im starting the planning now.