Archives for June 2007

Dada

Nathan said his first word today – DADA!

Way to go Nathan!

Of course I am jealous..but thrilled taht he said it! I think he said it by accident and who knows when he’ll say it again but I did hear it and almost fainted with joy.

As for other news…He started at UCLA early intervention today. It was wonderful, we are so excited for him, I think that program will help him a lot. Also, we went to the beach and he was kinda tired but he enjoyed it.

Also, we are getting in the pool with him every day as we’ve noticed he loves it and it really helps him develop strength.

Here is a lot of footage:









LiteGait & Therapy

Nathan had physical therapy on the LiteGait today. It was great, he loved it!

Partial Weight Bearing therapy using a system like the LiteGait has been shown to help children to walk. We are excited to have the opportunity for Nathan to use it.

He also had PT with Julie and he wasn’t too happy with that one 🙂

Here he is on the LiteGait:







The famous lip we all hate/love

Reflections

Well it’s almost midnight and Nathan is spending the night with grandma. I should’ve been sleeping hours ago but it’s hard to wind down. When Nathan is not here there is a big void in the house and in my heart.

This started me thinking about all of the parents that have dealt with losing their children. I am part of a message group for parents of children with holoprosencephaly. It seems that every month we hear about a child dying. And it breaks my heart. How difficult this must be, how very very painful.

And it’s made me appreciate Nathan’s life even more. What a gift and a joy every minute with him is. How lucky we are to have him.

Sometimes it’s easy to forget what a miracle he is. Sometimes, in worrying about his future, I forget the miracle of the present, and those gorgeous smiles that fill your heart with joy.

So I thought I’d take a moment to celebrate his life. Celebrate his joy. And appreciate all of you who are sharing this journey with us. We are very grateful.

So True

I found this article online today:

What I learned from my 18 ounce daughter

That’s so close to how I feel about Nathan.

It’s so well articulated.

Father’s Day

Owen really enjoyed father’s day and so did Nathan and I! We went to see my dad and spent time there with my 3 brothers. Then we went to a park with a lake so Owen could play with his RC boats. Finally we went to see Fantastic Four. It was a lovely day and my boys had a great time. Nathan had the most fun ever in the pool and he is sleeping so soundly after all the exercise and excitement.

At grandpa’s pool



Loving it



Thrill seeker




Winding down and getting ready to go to sleep during the movie




Nathan and Pres went out on a date on Saturday night:

Playing in the pool

Pool fun w/ dayd

Chilling after a pool workout

With grandpa

The De Vivo clan

Playing with the RC boat

Going for a walk

The day ends at the movies

How is Nathan?

I’ll let these pictures and videos speak for themselves:










Sea Lions

I forgot to mention in my previous post.

Nathan saw sea lions at the fair. He was riveted to the performance. He even got to touch them!

Here’s our evidence:

Please Pray and Busy Days

I have bad news and a prayer request.

Nathan’s great-grandma, my dad’s mom, passed away this weekend. We are really sad and miss her very much. We would appreciate if you could pray for her safe passing and pure land rebirth.

This weekend Nathan went to his first birthday parties!!! Maddie and Aiden turned 1, so we went to their parties and had a wonderful time. The birthday babies were treated like princes and princesses, and they all enjoyed themselves very much.

We also went to the fair and Nathan of course loved the stimulation, lights and everything very much.

Ok enough chit chat. Here are a bunch of photos and videos:

















We abuse our animals


Sitting outside his brand new tunnel


At the fair


The dads and their babies


And the girls


Bday boy Aiden


Mommy can I have all those presents???


With Birthday princess Maddie


The boys chilling


Great grand-aunt Martha


With uncle Esteban


Uncle Esteban


At the fair


At the fair again

Baby Party

We had a wonderful time at the baby party today. The babys are getting more beautiful, mobile, engaging, and are starting to enjoy each other more and more. Nate sat by himself for about 2 minutes!

Here are some videos:







Here are some pics:

UCLA intervention program

We are SOO excited. Today we took Nathan to UCLA to have him evaluated for their early intervention program.

Of course the therapists fell in love with him, and he loved it as he was the center of attention for all of us.

I was thrilled at what I saw. They seem extremely knowledgeable and have all sorts of equipment and ideas on how to maximize his potential. They commented on how aware and smart he is, and the fact that the main problem is the connection between his brain and his body. He knows what he wants to do but his body doesn’t cooperate. So they were talking about finding ways of helping him experience lots of things to stimulate his cognitive growth while training to improve his movement problems.

All in all it was very positive and I left in tears feeling that we’d found the right place /program for him. Unfortunately we have to give up having Nate’s child development specialist Dena coming to our house, which I am bummed about as she is wonderful. But it was the only way to get the funding through Regional Center.

We are going to take him there twice a week and they are going to do a little bit of PT, OT, child development, music stimulation, aquatic therapy, and anything else that they have available. They have lots of equipment too and are going to give us advice on what equipmen to buy, positioning, helping him improving his oral skills, etc.

I will post photos next time we go.

Here are some pictures of the last few days. We went camping last weekend but I forgot the camera. So sorry no pics. But he enjoyed being outdoors a LOT and didn’t mind sleeping in a tent with Lucas and Lola and mom and dad. What a trooper.


At the circus


sad clown


At the audiologists office. They said he may have some hearing loss but it’s hard to determine as he still has an ear infection.


new feeding chair


practicing crawling!

Swinging all by himself!

Nate’s head control is getting better!

We put him in the swing and he sat all by himself!



He also practiced walking:



And he played with a balloon:


He also watched the sunset at the park:

But most exciting is…he was able to bear weight on both arms, in crawling position, for about a minute or two! Go Nathan!