Thursday, August 27, 2009
Tomorrow is my birthday but I'm thinking that this is the best gift I've ever gotten in my life. Who needs anything else?
Max is the best gift ever.
Plus - waking up with him looking at me like this is just taking my breath away.
I love that he was waving at papa while he took that photo!
He's getting on a schedule now which is so amazing. he has been sleeping through the night for the past few weeks now and we wake him up for his first feeding. ( if I already wrote about this I apologize...I'm still in baby haze )
Jerry always does the first feeding. 7am or 7:30.
Then He naps around 9:30 or 10
for about an hour or so.
Then I feed him again at noon
he naps about 2 hours after his nap.
then I feed him again at 5pm
again - nap around 7pm
Papa gets home at 7pm
and when Max wakes up, Papa feeds him again for his last feeding of the day.
Then I bathe him
Jerry dries him off
we put him in bed with us
and I read to him
or we just play
until he falls asleep in between us.
Usually around 10 or 11pm
I'm REALLY enjoying this schedule. It used to be that he would feed every 4 hours all day and night so I was getting up at 4am to feed him and wasn't able to get back to sleep.
The only thing that I'm still figuring out is when to workout.
I used to stay up after the 4am feeding and go walk around the rose bowl as the sun was starting to come up.
It's much to hot out for walking at 8am
and I don't want to miss the moments - like the ones above - when he is just waking up. It's too precious. So I don't want to get up and go workout while he is still sleeping because I will miss this.
So - I've been working out at night now which is totally different. I do enjoy getting up early and walking when the sun is coming up. But I REALLY love watching Max wake up even more.
I'd like to start a photography project - documenting what it looks like in our bed every morning. Just like I did when We were first married - only this time all three of us will be in bed. I think it would be great to do a series of images from over the bed - looking down on us - as we sleep. So Jerry is going to get out all the tripod equipment to make this work.
He also bought me some kraft paper and an industrial sized roll paper holder so I can have paper on the dining room table so I can start to make artwork more often. I'm looking forward to turing this table I am typing at right now into my studio area.
ok - need to go make breakfast while he is still napping.
Friday, August 21, 2009
We JUST got home from Dinner with Max's grandparents - ( my folks ) and we were showing them how excited Max gets when we pull him up to stand. This is the face!!
Thought you might like this.
Today was a pretty big day - actually this entire week was pretty big.
We had a speech consultation with Amy Johnson who everyone told us to go see. We really like her and got some great feedback on ways to exercise Max's jaw and mouth so he can gain more muscle tone for speech. Oral Motor Therapy is really important for kids with Down syndrome. They have low muscle tone in their mouths and - they also don't feel with the same intensity that we do - it's like they have a shot of novocain in their mouths. So they need more stimulation and more assistance to figure out how to use their mouths - and to give them opportunities to strengthen their mouths.
More info here:
Today my parents met us at Club 21.
They got to meet all of my favorite people. Monica, and her kids Tim and Laura, Olivia and her kids Grace and Sarah, Pat and her son Christopher, Audrey and her kids Ava and Estelle, Juli and Max best friend Brady, Cel and her daughter Thalia, and all the rest. Nancy came in and I was so excited that my parents got to meet her. And she gave them a tour of the place and share with them all the things going on with the resource center. My parents really enjoyed meeting everyone and learning all about Club 21. ( yes I took a bunch of photos and no I haven't downloaded them yet - more to come ! )
One thing I am really excited about is that Club 21 is doing a Walk a Thon on November 1st.
You should come be a part of it with us.
We would LOVE your support.
here is more info.
Save the Date!
Come join us on The Morning of November 1, 2009 - 'Together is Better' 5K Walk-A-Thon which is hosted by Flintridge Prep's Leo Club to raise funds for Club 21. This event is unique because it is initiated and supported by the youth in our community. Due to the success of last year's event, Flintridge Prep's Leo Club is again hosting this year's "Together is Better" Walk-a-Thon. This year they have added a twist, they are inviting all of the schools in the area to walk and put out a challenge to each school to see who can raise the most money. We are grateful and appreciative of their efforts to help strengthen and support our organization. They have been amazing! We have been thrilled and encouraged to see the response from these schools and organizations.
There are various ways you can be a part of this exciting day. You, your family and friends can come and cheer on a corner, walk with all of us in support and/or raise support. Any and all of this participation will speak volumes to the community. This will be a wonderful opportunity to spread Down Syndrome awareness to a community beyond those that are personally touched by Down syndrome. It will also enable Club 21 to get the necessary finances, resources, partnerships, and personnel to continue to meet the evolving and increasing needs of Club 21's community. We will be walking in the heart of Pasadena, starting at Central Park in Pasadena and walk down Green Street and then come back on Colorado Boulevard. Afterwards, you can shop, eat lunch, see a movie, go to Huntington Gardens. It will be a great day celebrating family and community!! More details will follow, but write November 1st on your calendar.
Friday, August 14, 2009
THis is Max and his AMAZING Dr.
Dr. Rivera is the third Pediatrician we have gone to since Max was born. The first took 8 days to return a phone call ( bye bye )
The Second made is feel bad that we had a lot of questions ( see ya )
and the third is our good luck charm!
He came in - washed his hands and greeted us with smiles and introduced himself and shook our hands. ( the other two neglected to do that - and it seemed they didn't really care about the parents of Max )
Dr. Rivera is gentle, Kind, thoughtful, highly prepared, patient, easy to talk with and ask questions, Max loves him, and that counts for a LOT, and he calls back right away! We have been blown away by his bed side manner, his attention to Max and to us, and his overall care of our child.
he works at
here is a little bio about him
Dr. Rivera has been practicing at Huntington Plaza Pediatric Group since 2006. He earned hisundergraduatedegree in Biochemical Sciences at Harvard University where he graduated with honors. In 1999, he graduated from the University Of California San Diego Medical School, and on completion of his internship and residency at Children’s Hospital of Orange County he worked as a locum tenens physician - a traveling doctor substituting for short term clinical needs. Over the course of the next two years he would cover clinics and neonatal intensive care units in northern California, Colorado, New Mexico, West Virginia and upstate New York.
Dr. Rivera has also done laboratory research in fetal gastrointestinal development, comparative neuroanatomy, DNA fingerprinting, bdelloid rotifer genetics and cystinuria.
YAY FOR Dr. RIVERA!!
Tuesday, August 11, 2009
this past weekend we got a chance to visit with our friends Kathleen and Bryan - who have an adorable little girl named Agnes.
She is 4 months old and has Down syndrome.....oooooh Max is so lucky! We put the two babies next to each other and I was just tickled by how fond Max was of her. Just watch their hands!!!!! Oh god. So adorable I cannot stand it. He is so obviously in love with her.
He couldn't stop looking at her with adoration. And the hands! I couldn't deal with how they held hands. Killing me with sweetness.
So glad to have the chance to see them again. They live on the other side of LA which can feel like a different state or planet because of how long it might take to get there. Luckily our journey there only took us about 25 minutes. Not bad at all!
Hope to see more of them.
I am so far behind with postings and photos and videos. Will I ever catch up?
I have photos from a pool party, from the NDSC, from all about town.
anyhow - it is what it is - as they say.
Jerry and I are having such a great time watching Max develop and grow. He is a charmer. He is sweeping me off my feet every single day. What a blessing he is.
I went to a meeting last night and 2 people used the word retarded to express how they felt about themselves in their lives at the moment. It felt like a sharp knife through my heart. I thought about educating them. However - it's not always the right time. This was - an AA meeting. They are there sharing because it's a safe place to do so. I didn't want to go up to them and tell them that what they shared was "wrong". especially since both were having a hard time. Not good. Need to learn how to be loving, and respect others and allow space in between when people say something like that - and when i choose to share my experience with them.
Eunice Shriver passed away today. I want to know more about her and the incredible service she did for people with disabilities. I'm already blown away by what I've been learning of her. I would like some of that to rub off on me. I want to come at this from a place of love - not of fighting people for saying a word. People are doing their best. A few people this weekend offered advice to me about being a mom to a child with Ds. They don't have children with Ds. What they actually said was more like a backhanded compliment. They don't really know what they said - they didn't really hear it or think about how it would feel if I said something similar to them. I do need to find out what feels right for me in each moment and speak up when I can come from a loving place. I am VERY GOOD at coming from an angry "prickly pear" place. But that doesn't work for me or anyone else.
I'm coming up on 22 years of Sobriety a week from today.
I feel like I know now why I got sober at 18.
Why I moved to Minneapolis to get more grounded in my recovery
Why I slowly made my way back to Los Angeles where I was born.
Why I have had the opportunity to learn how to be present in the world without harming myself - or running - or hiding.
It feels like - I am better prepared to be Max's mama. To learn to be his Advocate - and to get out of my own way so I can be of service.
I've done many things in my lifetime - but this certainly is the most meaningful.
Love you Max!!!
P.S. he loves Michael Jackson, Elton John, and his mama singing to him.
took this 2 days ago - this is what I see when I wake up every morning.
Waiting for the therapist to arrive for Max's infant stim.
He started his PT yesterday and I think he loved it. I know I did.
Joe from Dynamic Therapies is REALLY GREAT and funny too which means I am laughing the entire time.
Seems to really be helpful for Max and I am looking forward to implementing some of the things he suggested we do during the week. Joe will be over once a week which is wonderful.
We also started going to Music Together. A friend of mine offered the class to me so I could see if it would be something Max would like. I put him in the Ergo carrier and danced and samg to him and he giggled and smiled a lot. I'm glad he enjoyed it so much.
He slept for 10 hours last night and it was the very first night he was able to put himself to sleep without being in a carrier on one of us. We rubbed his back and he fell asleep. Amazing.
We actually had to wake him up this morning for his first feeding!
He usually gets up at 4am...not today!
Lots more to share - but just don't have the time these days.
Wanted to at least share a new photo with you.
Max is amazing. I didn't know what all those other mamas were talking about when they said " you won't know your capacity to love until you have a child." And now I know what they are all talking about....
He melts me.
Tuesday, August 4, 2009
This video was taken at the end of last week just before we headed up to Sacramento for the National Down Syndrome Conference.
I could post a SUPER LONG post of all the amazing things about the conference but I actually don't have time!
I will post about it this week though because I want to jot down the important points.
It's Max's Birthday!!
Can you believe it????
This morning we sang happy birthday to him.
He had his infant stimulation therapy session
He helped me find a new pair of pants at Old Navy
And we strolled around the Americana
He took a very long nap in the Ergo
He practiced sitting, standing, grabbing, reaching out, rolling over and playing with his toys.
And now he is with his papa who just got home from work. They are having a deep conversation about something over there on the couch while I type away.
I want to let you all know that the postings have slowed down because my time has been cut short due to something called the GAME ON! Diet that my friend Krista wrote. The book was just published this last month and 16 of us are playing the game together. You can find more about it here. THE GAME ON DIET
Basically we are on 4 teams and we are trying to get the most points.
The winners get a prize and for this round we have put a bunch of money into the pot.
Basically each day we get points for:
20 minutes of exercise
drinking 2 liters of water ( it's 3 in the book )
going to bed 7 hours before you know you need to get up.
changing a bad habit ( ie: not watching tv or something like that )
Adding a new habit ( like taking guitar lessons or something like that )
communicating with teammates
I must say that I wouldn't have done half of these things on a consistent basis if I weren't competing or on a team.
It's been life changing.
However - it also means that I only get 2 hours once Jerry gets home from work to be off from baby duty - and I need to make and eat dinner, any laundry, cleaning, nighttime stuff, and get my booty into bed so I don't lose points.
All that said - it's why I don't post as often. I usually stay up until 11 or 12 and can download photos, upload videos etc which all take more time than you think.
We are in the third week of the game and I'm on the 9th week of Jenny Craig. All together I've lost 18 pounds and 24 inches!
I've gained a new habit and lost an old bad one.
I'm more rested and more committed to my food plan.
I feel inspired by the team and everyone on all the teams
and we are going to play another round after this one ends!
Want to join us?
Let me know.
you can play from anywhere.
ok - back to MAX!!!
We are having a hoot with him and Jerry and I cannot believe he is 6 months old.
He is doing really great.
He starts Physical Therapy at our house once a week starting Monday and we are THRILLED about that.
I'm looking into going to something else during the week like a Music class - like Music Together
or Gymboree, or something else...still doing research on them all.
I'm still decompressing and digesting from the weekend conference and can't wait to tell you all we learned.
It was empowering, inspiring, exhausting, emotional and exciting. It felt like a bubble of normal ( our kind of normal )
everyone had a child like ours. I didn't have to explain or feel like Max is different - because he wasn't. And the unsaid bond with the parents was so great.
ok ok ok
more on that tomorrow when I can spend some time on it.
I must run and get my 20 minutes of exercise in and eat and get some other things on the list completed before i hop into bed.
HAPPY BIRTHDAY MAX - from your much skinnier and happier mama!