Wednesday, February 24, 2010

first hair cut and a post I don't want to write

on Friday I took Max back to Amy's Playground where he had his birthday party. They have a gal there who does haircuts for kids. His hair is just a touch over his eyes now and I thought I'd like a trim just above his eyebrows because I think it looks good a little long.....the gal I told this to had different ideas.....

Here he is just before getting it cut. So cute.

here is how he felt just after he had the hair cut. Upset because the gal didn't listen!

Here he is looking super cute after the hair cut - however the look only lasted 2.5 seconds and now it just looks terrible. His hair grows straight down and looks like crooked bangs that are too short and just makes him look....heavy sigh....I can't even say how I feel about this hair cut. I HATE IT. so there. HATE IT. AUGH!
I am now on the lookout for baby hair gel - seriously - so that it stays over to the side like in this photo because if it isn't like that - it's HORRIBLE.....

on a more seriously note

We took Max to the Eye Doctor last week and found out that he has Strabismus. Which basically means that his eyes are not lining up properly and they cross. Both eyes alternate so it's either the left one or the right one. rarely both although with Down syndrome it often looks that way.
The Dr. wants to do surgery within the next 4-6 weeks to cut the muscles of both eyes and re-align them.
I can hardly breathe when I type that out.
I am not breathing right now.
I cannot deal with this.

So - we went to another dr yesterday who is not into doing surgery unless it is very severe. This one says visual therapy is the way to go. Glasses with special lenses and therapy in the form of play with his PT, OT and who ever else does any sort of therapy with Max regularly. He would work with all of them to incorporate special therapy into the mix to help him work on how he uses his eyes.
his feeling is that just changing the alignment of the eyes isn't going to change the way the brain thinks about how to use the eyes. You have to train the brain or re-train it.
He says success rate is about 50%
The surgeon says surgery is 80% success rate and that some need more than one surgery. um oh god. not breathing again.

We are making an appointment with another dr.
and we are leaning toward doing BOTH the visual therapy - starting with glasses AND then doing the surgery so Max has a little time to get used to using his eyes differently even before they do the surgery.
oh god this just makes me sick.
The whole thing makes me sick.

Jerry and I have been telling our Pediatrician for MONTHS that we think Max's eyes cross. So the pediatrician pulls out a small flashlight and points them into Max's eyes. and then draws two eyes on a piece of paper and shows us that the light is hitting both eyes at the same point which means he is not cross eyed. he sent us to an eye dr. that said that kids with Down syndrome look cross eyed and basically made me feel bad for coming in more than once to re-check. This was all getting on my nerves because my gut was telling me otherwise. So that is when we decided to pay out of pocket for someone out of our insurance network to get another opinion. Then we hear SURGERY. and not only THAT but that this should have been taken care of 6 months ago.

I'm talking with everyone about this and I hear so MANY stories about surgery that corrected the problem and that everything was ok and it all worked out. I'm hearing about different doctors that people have gone to and who people really liked.

This all helps - but at the end of the day
I have to hand over my baby to someone so that he can be "put under" for surgery. No matter how much research I do - nothing can make me feel ok/good/better with this.

We will keep you all posted on what we decide to do - and how things are going.
All I know for sure is that Max is the most amazing human I have ever met and I want to do everything I can to give him all possibilities for the best life ever. Even if I am uncomfortable and feel like I might die just typing this all out here now.
It's terrible this surgery thing.

I'm off to eat another cookie - that's what I've been doing ever since I heard the news. Eating cookies and not breathing.

Monday, February 22, 2010

birthday party video

Ok so - we celebrated Max's birthday just the three of us - on his actual birthday. You already saw the photos and video we made posted earlier. Then our family had a party for him which I still need to post. And then a week later we had a party with all of his friends. Phew. Lots of partying.

Here is the video of the birthday party we had for Max at Amy's Playground in South Pasadena. It was a beautiful day the party was filled with his friends and it seems as though everyone had fun!
I wish I had taken more photos and I wish I had time to really use my favorite lenses and get into it more - but - I was busy partying with my baby and my husband and all of our friends. There were 17 kids who came to help us celebrate - and their parents - and some friends of ours we've known since junior high or high school. It was a great bunch. Thanks to all of you for coming. It meant the world to us. And thank you to the grandparents ( of course!! ) - for being there as well. the place was packed and all I could hear was happiness. If there is a sound for that - that is all I remember hearing, feeling and experiencing. I think Max felt the same way.

more to come soon!

Enjoy the video.


Sunday, February 21, 2010


I'm still working on getting Max's birthday party photos and video up here - so in the meantime - this video really needs to be watched - and then shared with everyone you might need some tissue!

it's really good.

Wednesday, February 17, 2010

Finnian's Journey - A great video!

I visit this blog regularly and LOVE reading how Lisa speaks about her journey as the parent of Finnian who has Down syndrome. What I didn't know - was how amazing her entire family is!

Just watch the video and see for yourself.
Then - pass this video on to everyone you know.
Spread the word to end the word.

here is her blog if you want to read and learn more about them.

and yes - there are more photos from Max's 2 birthday parties coming up shortly!
And a LOT of milestones happening around here
more soon!

Friday, February 5, 2010

Max's first birthday recap

Lots of photos so I'll just summarize here and you can scroll down to the video at the end.
We started the day lounging in bed like we always do. Lots of snuggling. I hung up the birthday banner that I made for him. I think it turned out great! Then off to Danny's Farm which is a petting zoo near our house. Max was able to see animals for the very first time and pet them. We've taken him to the zoo and wild animal park and he was basically sleeping or just looking at us! So this was a real treat. Watching him see a pig, goat, donkey, bunny, rooster all for the first time ever. Amazing to see. Then off to Marston's for lunch and then Dot's cupcakes for a birthday cupcake ( three of them - one for each of us of course! ) Then we went to Huntington Gardens. They have a special garden just for the kids and it is unbelievable! We bought a membership when we got there and plan on returning there often. It is a magical place. Art galleries, all types of gardens, cafe, trees, birds, just beautiful. Then we headed home and opened presents and ended the festivities with is little cupcake. We had so much fun. I'm so glad Jerry took the day off to spend it with Max. Oh - and we videotaped Max and I reading a book together - watch how good Max is at turning the pages. We did that before we headed out for the day.

and YES the guys wore matching orange sweatshirts. I didn't participate but they sure looked cute. I always hated seeing people do that - but when it's YOUR baby and YOUR husband and they are hanging out together - I must admit that it's pretty darn cute.

What a fantastic day his birthday was!

Thursday, February 4, 2010

Max! You Are ONE Year old TODAY!!!

It's midnight.
I just finished this video.
A review of Max's first year.
Max was born at about 7am on Feb 4th 2009.
I cannot believe a year has gone by.
But I have proof here in the images.
I don't have words right now to express all the thoughts and emotions I have.
So this video will have to do.

Planning on spending the day with Max and Jerry today.
Low key - all about celebrating Max -
maybe a ride on the swings at the park
Maybe a trip to a petting zoo
maybe a nap together in the afternoon.
lots of photos - for CERTAIN.
video - oh yes!

stay tuned people....more to come.

Love you baby Max.

You are my precious little angel.

Tuesday, February 2, 2010


The Regional Center just called us to let us know that Max will now be able to get Occupational therapy ( which helps with fine motor skills). And that it's going to be in home services!


EVERYONE has been telling us that he should get BOTH Physical therapy AND occupational therapy but we weren't approved to get OT and every time we talk with his feeding therapist who is the head of the OT department at the place she works ( going to keep that off the blog ) she told us that he really doesn't need it because he is doing really well.

That's GREAT of course to hear. WE LOVE that Max is doing great.

AND we feel that it can only benefit him to see an OT.

Even if just to give us suggestions on ways to help him develop his skills further.

So we start THIS FRIDAY!!

I feel renewed belief in the regional center!

We didn't have to fight, appeal, write letters, go to court, make any phone calls...nothing.

What a GREAT early birthday present for Max.


I'm just THRILLED.


Monday, February 1, 2010

help bring Sophia Home

Oh my gosh. Look at how adorable she is!
That's Sophia. She has Down syndrome and she is an orphan living in an orphanage in Eastern Europe.
There is a family here that is raising money to adopt her and bring her here.
They have a website where you can learn more about her and donate any funds you feel you can spare.
It costs something like $25,000.00 to adopt her.
She's spent the first 2 years of her life in an orphanage and I just LOVE that this family wants to help her have a better life.

Can you help?