Welcome to my blog! The posts are listed by date, with the most recent on top. Enjoy.

Friday, June 25, 2010

Road Trip

We are on a little family road trip up to Mill Valley, in the Bay Area. Yesterday we went to the Muir Woods to walk amongts the giant Redwoods and Miles was in Heaven! Though he's been feeling sick, he just couldn't get enough of the fresh air, the tall trees, and the sweet smell of the forest. He was exploring everything, from the tree trunks to the moss growing on the rocks. He touched the petrified wood, yelled at a banana slug and stared at a big, fussy centipede and all from one of his favorite places....the hiking backpack. It's exhausting to travel with a kid, but to see things from his point of view is so much more rewarding!

Miles loves his hiking backpack!

Miles and me having fun at Muir Woods

Poor little dude had a tough night last night! We think his second tooth is coming through and that's why he's been all out of sorts, but maybe he's just sick? He couldn't breath well last night, kept snoring like a freaking bear and waking up crying for no reason. Normally when he does that, we pick him up and soothe him until he gets back to sleep, but last night was different and we could tell he was in real pain. Maybe his tooth was cutting through?

At any rate, here we were in this beautiful hotel room with a view of massive Redwoods and a very comfortable king size bed, while Mr. Miles was tucked in a corner of his not so comfortable pack n' play on the floor next to us. Crying. Sweetie! Of course we brought him to bed with us! And we slept off and on through the night as he kept waking up in pain. But at least mama and papa were right there to soothe him.

There have been several times during Miles' life (almost 10 months now) that he starts acting like a typical fussy baby: yelling, screaming and crying for no reason and at times can be inconsolable, especially at 1am. Like this morning at a restaurant where Miles would not sit still. He was banging the table with a spoon and yelling every time it fell on the floor. He wouldn't eat his food and cried when we tried to wipe his nose and the constant stream of saliva pouring out of his mouth.

I looked around and thought, "oh my goodness, my kid's becoming a pain in the ass! Are we going to be that family that nobody wants sitting next to them on a plane?"

You see, we've been spoiled by Miles' mild manner and winning personality. He's an easy baby, rarely cries or throws fits, especially in public where he's usually hypnotized by the sights and sounds around him. So whenever he starts acting this way, I freak out and think that our "honeymoon" baby has been replaced by a "monster" baby. But the reality is that something is going on with him. He's either sick or teething or growing or all of the above. After a couple of days or a week, he goes back to being the funny little angel that he is!

It's unfortunate that he's not feeling well since we're on vacation. Our nights can be pretty tough. But all that being said, Miles doesn't have it in him to be a "monster" baby, even feeling so sick. After a little nap, he still wakes up and smiles at me because life is beautiful and fun and he loves it all. And so do we.....weary eyed as we may be!

Monday, June 21, 2010

Morning Slumber

I've been denying it for the last three weeks or so, but I need to just accept it now.....I can no longer sleep in!!

Miles has been a great sleeper since he was born. He would eat and sleep and sleep some more. We would have to wake him up to eat because all he wanted to do was sleep. He was sleeping 8-10 hours a night by the time he was 3 months and there was no sleep training involved, just a little routine. After his bath and bottle he would slip into slumber until around 5:30am the next morning. At that time, I would bring him to bed and nurse him for about 20 minutes and then we would all sleep for another 2 hours. Not bad! Wake up time was 7:30am and we could sometimes lay in bed for another hour before he got fussy or bored.

Not anymore!

Miles will still drift to sleep around 7:30pm, but for the last few weeks, he'll wake up anywhere between 4-6am and he will not go back to sleep!!!! I nurse him for a good 20-30 minutes and though he seems tired, he is wide awake and eager to play! If I put him back in his crib he will talk and yell loudly to get our attention. If I keep him in bed with us, he blow bubbles, smash our faces, yell, smile, laugh, talk....do anything but go back to sleep.
Don't get me wrong, he is so happy in the mornings that I can't help but kiss and hug him. But really, I want to sleep in until 7, 8, 9am maybe?

Sometimes I'll bring him into my office, sit him down with his toys while I lay on the couch and try to get another hour of sleep in. But even that's difficult. He wants me to look at him and interact, so after a while he'll yell for my attention. This morning I decided that if I have to be up at 6am with a noisy child, I might as well get some work done. So here I am, catching up on my blog since it's been over a week that I write! I've got a whole list of things to do but who knows how much I'll really get done.

Right now, Miles is playing with his little keyboard, hitting the same note over and over and over again.... Okay, it's gonna be a loooong morning!

Wednesday, June 9, 2010

Getting an EKG

I had to take Miles to Cedars Sinai Hospital today for a routine EKG. Nothing scary, they just wanted to make sure his heart is still working well. It just happens to be that the place where they sent us for the EKG was Cedars Sinai. So that's where we went. And although the actual EKG and the results were not so scary for me, being back at Cedars was. I kinda have a love/hate relationship with that place because of the memories that it brings up from Miles' birth. And I had no idea that fear was still so raw for me. I thought I was past it.....but ha, ha, joke's on me!

Anger is my "go-to" emotion when I'm feeling anxious and scared. I start building up a little wall of safety around me and I become humorless and hard. Well, I felt that wall coming up as I was driving around the Cedars maze looking for parking. I was cursing everything about the day and the fact that I had to drive round and round and make illegal u-turns and roll through the stop-signs to get to a parking lot that seemed to be miles away from the South Tower. As we were walking out of the lot though the ticket gate (because I couldn't find another way out), I yelled at one of the money collectors for putting my son in danger because they had no pedestrian walkways!

Yes...displaced anger is a ugly thing.

Miles and I walked around the whole outside of the lot and over another block, in through a building, up an elevator, through a bridge, down several hallways, down another elevator...I was distraught and angry, searching for room 5520. How do I get up to the 5th floor if the only elevators are staff elevators? Can someone point me to the visitor elevators. Screw you, I'm going up the staff elevators!

By this point my face was hard and uninviting. I was cursing under my breath loud enough for people to hear me. I was looking for help, but not asking for it. I was certainly not smiling....yet everyone was smiling at me. They were all commenting on my adorable little baby who was looking out at them with curiosity and wonder as he played with his toes.

"He is a such cutie."

"What a sweet baby!"

"Oh look at those legs, I want to squeeze them."

"Take a breather Loli," I told myself. "You're building up those walls, they are closing in around you. Stop it, you don't want to be this way. Miles will be fine, it's just a check-up. This is not a bad place, you're just reacting to what it represents. It's okay."

I looked down at Miles, and there he was, cute and happy, sitting in his stroller, opening his heart to everyone. He did it again, he reminded me that I can't let my fears control me.

That little pep talk lasted long enough to get me upstairs to room 5520 and to be nice to the receptionist and the intake person and the EKG technician. My wall was halfway down and I was feeling vulnerable, yet relieved. Now if I could just find my way back to the parking lot quickly because I could feel the emotions welling up behind that wall.

I was down in the courtyard level searching for that bridge again, everyone was very busy at this point, zooming past me. I asked a doctor if this was the right way to the bridge and all I got was a half-assed shake of the head. And that's when the walls came crumbling down while I struggled to hold them up.

"Well you don't know anything, do you?!" I yelled at the guy and kept walking.

I saw the bridge and I felt the tears coming.

"Just keep it together Loli, no crying". But people were staring at me (at least I felt like they were). "Take a deep breath, put on your sunglasses and walk over this bridge to the elevator, down the hall and around the building to the lot. Just keep it together for a few more minutes."

And I did. I kept it together. Phew!

It's not that I hate Cedars Sinai. It's just a place; IT didn't do anything to me. It's what happened to me there, the pain I felt 9 months ago when Miles was born. But in the last 9 months I have learned a lot about myself and I know that I am courageous because I can move past my fears to keep on living. And every time I forget or have a slip up, Miles is there to remind me that I have nothing to fear. God, sometimes I feel like the baby!

Anyway, Miles did great during his EKG. He let the technician place the sticky strips all over his tummy and legs and calmly watched her as she did her thing. She and I sang "Twinkle Twinkle Little Star" and "Row Your Boat" to entertain him. But he was already amused and entertained by the situation. We should be getting the results in a couple of days and I suspect everything will be A-Okay.

Monday, June 7, 2010


I was catching up on my TiVo tonight and I gotta say I love the show Glee. Not because of the singing and dancing (though I enjoy the singing and dancing and wish I could do it) but because of the message within each episode. And all the inclusion. They seem to deal so well with teen issues.....oh my God, I'm such a mom! But for real, they deal with stereotypes and labels and teen pregnancy and feeling different and on and on. They do it with humor and intensity.

Okay, so maybe I'm biased because they have two women with Down syndrome on the show and they are great. They make me smile and cry at the same time. And not just them, all the characters: Artie in his wheelchair wanting to dance; Kurt who is gay and wants to truly bond with his dad; Tina and Mercedes and everyone else just wanting to be free to express themselves!

When I think about my little Miles growing up and going to school and being taunted and treated like an outcast because he's different, I want to cry! I don't care that he has Down syndrome, he is the best thing that ever happened to me and everyone needs to know how awesome he is! But not everyone will, instead they will treat him unfairly and discriminate against him and the thought of that brings out the Lioness in me and I am ready to rip someone's head off if they hurt my child. Then the rational part of me knows that he will get hurt regardless and I can't be there to protect him all the time. And that makes me sad. Oh...so many emotions, I'm sitting here crying and just because of a freaking TV show!! So yeah...I think it's a good show.

Friday, June 4, 2010


I had a dream a few nights ago that I went to pick up Miles from his crib and there he was, surrounded by several blankets and toys. I asked Zach if he had put those things in his crib and he hadn't. I hadn't put them in either...so did he do it himself? I took everything out of his crib and walked out of the room. I heard laughing and walked back in to see him crawling out of his crib to pick up the blankets again. Holy crap! He can climb out of his crib!! I realized that I finally had to move the mattress all the way down. It was good feeling, which was still in me when I woke up.

A few weeks before that dream, I had another dream in which Miles was crawling. I've also had a dream about him speaking clearly and walking.
I've had several dreams of him achieving all these milestones that most people know their children will achieve at an average level but which I know Miles will probably achieve a little later than average. But he will get there, I know he will. I can see it in my dreams and I know from all the books and people I talk to, that he will be able to do it all.
I am so incredibly lucky that my baby with Down syndrome is healthy, capable and oh so smart.

It's so cool to watch him learn and make connections. It's like you can almost see the synapses firing and that "aha" moment take place. "Typical" children will make a huge step forward from one day to the next. It can happen so fast that the parents are taken by surprise. For children with D.S, it takes a little longer. For example, Miles used to just lay on his back without making any effort to move or roll from side to side. With the help from his therapists, we started guiding him, teaching him how his body can move. I would lift his leg and move it across his body, then grab his little hand and have it follow the same motion.
At first, he would fight me or just lay stiff. After several weeks of practice, he started understanding that his lower body could move independently of his upper body and that if he moved in either direction with a little impetus, he could turn over on his tummy. The whole process of teaching him this took about 2-3 months and there were times when I thought he'd never get it. But he's all over it now! That's old news. And I was able to watch him process all the information and literally put together the movements little by little. It was amazing!

So now we are working on teaching him how to shift his weight from one side of the body to the other in preparation for crawling. It's been about 5 weeks now and he has gained so much strength. I used to put him on all fours and I'd have to hold his arms and butt up and he couldn't maintain it for more than a few seconds. Now I just have to guide his booty up into the air and he knows to stretch his arms straight. And he'll hold it for several minutes!!!
They might seem like silly little steps to most people, but in our home these are huge leaps!

From what I know about most "typical" children, the hope is that they will be walking by their first birthday or soon after. Well, I give Miles another two months....maybe three and I am sure that by his 1st birthday, he will be crawling. And that will be the biggest gift ever!

9 Months Old

Miles turned 9 months old on June 1st! My little baby is looking more and more like a big boy...I can't believe it! No...he is not crawling yet! Trust me, you will know when he is crawling because it will be HUGE cause for celebration, so stop asking me if he's crawling!

I'll tell you what he is doing.
He's shaking his head "no". He doesn't know what it means, he just discovered that his head can move from side to side and he looks adorable doing it.
He has also recently discovered that his fingers can move independently of his hands. Pretty cool. Stares at them move for minutes on end.
He is rolling all over the place. We'll lay him in the middle of the carpet on his tummy and seconds later he is 3 feet away on the wood floor, laughing and playing with his toes.
He has waved "bye bye" about 3 times that I noticed. I almost fell backwards!
He can hold his bottle on his own, he just doesn't want to. He's "fresco" as we say in Spanish, meaning he's being lazy and totally aware that someone else will hold the bottle for him. Smart little dude!!
He does like playing with his spoons and try feeding himself. And one out of 3 times he actually gets it in his mouth!
He splashes around in the pool. He thinks it's the funnest thing ever.
And he laughs. He LOVES to laugh and smile and check people out....but that's been him since the beginning. He smiles with his eyes as much as with his mouth...and he looks like Heaven!

Happy 9 Month Birthday my Little Big Boy!!