overwhelmed ("Love what is ahead...")

I'm going to say it. I'm terrified.  I am so scared that I am not going to find the motivation a nd energy to do ALL the things I want to do with Liam.  Especially with Liam, but Lupe too.  I am reading reading. One awesome DS blog leads to another and I am getting overwhelmed with all the theories and ideas and therapies, etc.  I have the urge to sob and I haven't had that feeling in a while, since this was all still new. 
Can I share with you some of the important sites and blogs that I am tuning in to?  That way, if you're really interested in what is going through my head right now (and to a large extent Pedro's too, though he isn't doing the reading) you can get an idea.
First off, some great blogs by moms:
http://www.downsyndromeupupupandaway.blogspot.com/search/label/IAHP (This also talks about IAHP, a program we will be going to in June).
In fact, here is there site: http://www.iahp.org/Who.34.0.html
http://dsdaytoday.blogspot.com/ (OMG- vitamn therapy! ideas about food! so much to read here)

As I sat down to write this, I used my will power to make myself a cup of ginger tea instead of hot chocolate (trying to be healthier!) and this is what the teabag said (I needed this):

We are going to Philadelphia in June to a course for parents called What to do for your Brain Injured Child.  (http://www.iahp.org/Pro.72.0.html) It is 5 days. We will probably take my mom to care for liam, and Lupe may stay home with family and friends. We still have to apply, finish writing my whole history (1 yr prior to pregnancy, delivery, all devlopment till now), save/raise money for the program, tickets, etc.   I am reading the books by Glenn Doman.  My dad is going to help build a crawling track.  I need new sensory stilumation every day for Liam.  All issues he has or will have start in the brain, so we need to STIMULATE that brain as much as possible- tactile, visual, auditory.  It is pliable and cn grow and expand. And Liam WILL have a full life. He has the POTENTIAL to do anything.  He needs our support.

Bananas

2/2/12  Without too much forthought, we gave Liam food today.  Funny how different it feels with the second kid.  When I went to write the date in his baby book, I realized I hadn't written down first smile, laugh, and rolling over!
I have let him lick a few things, pear, carrot, but he wasn't interested. Today Pedro scraped a banana and gave him some in a spoon and he seemd to be into it!  Then he just grabbed the spoon and seemed to feed himself! Clever boy.  Perhaps he just wanted to gnaw on the spoon. Either way, it was exciting.
This seemed natural.  I didn't want to watch the calendar and give solids at a predetermined time, and have it be rice cereal from a box. That just didn't feel right. 
And Liam will be 7 months tomorrow.  This is going by way too fast.

Teeth. Therapy. Compliments.

January 19.
What Liam's been up to: Sucking on his own lip and tongue. In fact sucking and chewing on EVERYTHING! I was reading on a forum, www.downsyn.com, that many t21 babies get teeth late- sometimes first teeth at a year or more.
He's doing "rasberries" too- when he blows out through his lips making a farty sound.
These are both new developments this week. Going to start receiving occupatinal and physical therapy each month.
Wondering if Lupe's going to ask if all babies get home visits from therapists.

After I took this picture a woman stopped at the stop light rolled down her window to tell us we were a beautiful family.  That was nice. Gotta pay forward that random act of kindness.  Do you realize how a compliment can make someone's day?  ICAN mtg topic was letter writing this week (i.e. letters written to hospitals thanking them for supporting vbacs, etc etc). I'm going to write my OB and thank her for supporting my vbac. When I see someone with a great hair cut, or doing something nice, I am going to say something nice to them outloud instead of just thinking it.

excitement

...and sometimes I feel a little sliver of excitement for what's to come.

kids in bed, and stuff on my mind

I remember when we first took Liam in to his pediatrician.  He picked him up and looked at him from several angles, then back at us and said something to the affect of, "Have you received confirmation on his diagnosis?"  And for a moment I knew we both thought, "Maybe it's not true!  Maybe he doesn't have Downs after all".  But he does.
Our pediatrician is always so impressed with his progress.  His hospital evaluation at 5 and a half onths was awesome-he was showing off and got rave reviews, pretty muc on target with other babies except a little behind in gross motor.  So we think he will probably be "high functioning". 
Today we had our first evaluation from a physical therapist.  He already sees the occupational therapist once a month (Without going overboard I want to make sure we are getting as much early intervention as possible). Her evaluative scores were a lot lower than our previous evaluation.  And I wonder, what does it matter, since all babies/kids have such a range anyway of development?
I keep thinking, Will he be in a regular classroom? Will he have a girlfriend? Will he live on his own? We don't know any of this yet.  We have to find the balance between being very present with him (his big lesson for me) and thinking of the future.
This is what I know so far about his diagnosis.
He will achieve many things, but at a slower rate.
He may have early alzheimers.
He will not have children.
He may not be able to drive a car.
He will probably be in regular classrooms, but with extra help.

Down syndrome is the most common genetic condition. One in every 691 babies is born with Down syndrome. The most common form of Down syndrome is called Trisomy 21, because it involves an extra copy of the 21st chromosome.  http://www.ndss.org/index.php?option=com_content&view=article&id=55&Itemid=75

It was a while before I realized with a shock that the term "mentally retarded" would refer to my son.  I don't know how much he'll get intellectually and socially.  He may not be an academic intellectual but will he understand social cues?  And sometimes I can't help but think, why me? Why us?  All these babies being born, why did ours have to have Downs Syndrome? That's hard to admit, but it's true.  I'm not quite sure in this moment, after a long day and finally getting th ekids in bed, how to say what I know to be true without sounding cliche.  But there's a reason Liam chose us as his family. There's a reason why special eductaion will be one of the areas of life we will have first hand experience with, just like miscarriage, breastfeeding issues, being a bicultural family and all the other things that makes our family experience unique, and ours.
And then I came across this article: http://www.childrenshospital.org/dream/winter10/childrens_new_star_player_winter10.html
I teared up. And felt hopeful.

Women Infants and Children

This post is to thank the WIC PROGRAM for all the work they do to provide nutrition and breastfeeding education to families all over the country.  I worked as a breastfeeding peer counselor for two years and stopped when I had Liam.  Shortly after, funding was cut and all counselor jobs with it.
If I had the energy I would describe here in detail all the research about the benefits of breastfeeding, peer support, and talk about the state of the economy, and priorities and funding and... etc etc.  But I can't get to that right now. And Liam's starting to fuss in the background.  And I'd be preaching to the choir now wouldn't I?
Suffice it to say: Thank you WIC program, heres to you!

la playa en Diciembre!

It was a perfect day at the beach!  Late December, mid seventies.  Oh yeah. Lupe played in the playground, rode her new scooter (there were a few other kids with new scooters and bikes, just a few!).  Liam lay on the blanket, showing off how strong he's getting.  It was just a couple of weeks ago I think that I was helping him prop on his arms and elbows, and now he can do it!  This last couple days I've even noticed he doesn't arch as much, lifting his legs when he's on his tummy. Next goal: rolling over, and grabbing his feet.

Lupe.  Three is a real challenge, there's a real battle of wills happening sometimes.  Did I say sometimes? Feels like often.  She is a pretty good kid overall, I mean really good, but she saves all her whining for mom, and for home.  (Sound familiar moms?)  But three is also really cool.  To have her discover rhyming, to make up silly words.  To learn how to spell her name out loud. The curiosity, "What letter does Ariel start with mom?"  Last night she said, "Mommy you're the best cooker. Ever."  That was after she told me she didn't like spaghetti wth sauce. I guess she changed her mind.  Dancing in her underwear to Lady Gaga! Wobbling out to her playhouse in her new dress up shoes. This morning I heard her laughing in her sleep.  What were you dreaming about Lupe?  "Cucu" she responded (that's her grandparents neighbor- a good friend). 

We are planning  a trip to Mexico to see our familia- it will be interesting how our non-stop-talker deals with her Espanol.  She can understand but isn't talking much. A ver como le va!

merry christmas eve!

words and pictures cannot capture how beautiful my kids are.

in a high chair for the first time!

my little guy is sick for the first time (not bad- he's almost 6 months!) and has a racking cough on top of his normal congestion. but obviously in good spirits! just look....

lupe got to see santa again today.

she is now in the living room talking to santa about the scooter she wants. 

feliz navidad to all!

Infant Development Clinic

Five and a half months. Yesterday we returned to Sierra Vista for an Infant Development Clinic so that the doctors who saw Liam in the NICU and the physical therapist could evaluate his progress, his developmental level and to see if we were getting the services we need.
When I saw Dr Ochoa, the one who told us we had a baby with Downs Syndrome, the one who tracked his progress in the NICU, my throat got all tight with emotions.  It brought back lots of memories of last July and all we went through.  The PT said she sees that a lot.  Liam was fast asleep in the Ergo, but I got him  out and he wasn't ranky at all. Au contrair.  He started to show off!  On tummy time, he rested on his arms and lifted his head more than I've ever seen him do.  He tracked objects with his eyes, reacted to the bell, was interested in looking at himself in the mirror, and even passed a toy from one hand to the other!

They were so impressed.  And I felt good having my own intuition about his progress validated.  She said it was in large part due to our excellent work as parents in seeing he gets services, working (i.e. playing) with him at home, stimulating him and doing extra things like cranio sacral therapy.
On their evaluation sheet he was at a 5 month old level in everything, except the slightest delay in gross motor development (rolling over, etc).  I felt so good leaving the hospital.

The above picture is Liam sitting for the first time in a bumbo seat that the occupational therapist leant us and playing with a new toy.  SHe had brought it for him to play with telling us we could find them at Target if we liked them.  Liked it?  Liam had a little baby coniption fit of excitement when he saw it and could grab onto it.  So she said, "Merry Christmas, it's yours!"

...?

Throughout the day I think of good topics to write about. And then I forget them.  Thanks to grandparents who come over to distract the 3 year old and do the dishes.  Thanks to Robyn Berry Photography for our family portraits.  Thanks to my hard working husband, though I bitch and moan sometimes, yo estoy agradecida por todo que haces.  Thanks to Andrea Herron, lactation consultant who helped us so much at the beginning, and to the other NICU mommies in that group.
Thanks to my Lupe for her paciencia.  Sorry for losing my patience and yelling so much.

5 months old and so much changed this month

Where to start? I feel like so much changed this last month.  Liam, my little guy, you'll be 5 months old tomorrow!! How can that be? The other day I took a meal to friends who just had a baby and she was only 3 weeks old, and that was SO long ago for us it seems! Now it feels like: oh, 2 weeks in the NICU?, what a short time. But it felt really really long at the time.

Check out this picture below.  I put Liam on the blanket and came back to look and he had scooted off a bit.  I feel like each little thing Liam does is so big.  The picture above, the first one, is us on the beach in Cayucous after we had gone all the way there for a cranio sacral therapy appointment only to arrive late and miss it (Lupe has the most inconveniant times to use the bathroom sometimes!).  Estaba tan molesta en perder la cita, pero mira.... Our therapist called and offered to come to our house for Liam's sessions, as she is usually in San Luis on Wednesdays anyway.  Small blessings.

Twice I have dreamt that Liam surprised me by talking.  In the first dream I see a wet spot on the bed and ask, "Who did peepee on the bed?" and to my surprise he answers, "I did". And Pedro dreamt the other night that he was walking.  He was in Mexico with his mama and said to her, "Everyone told us he would be slow in achieving all these things/ Todos nos dijeron que el tardaria mas en lograr estas cosas..." Y empezo a llorar.

And Liam now likes sitting and standing. No more laying down for my guy.  Our neighbor loaned us a - como se dice?- round sit in activity center thing.  And....he likes it!  Lupe had one and never liked it.

Life is good. We are happy!

Comadres

Ok, well, just noticed the double chin, but....no importa!  This week I got to go out TWO TIMES with girlfriends!  And I kinda forgot how important it is to go out and talk with other women, without attention seeking kids around. I won't mention all the stuff we talked about - girl talk, helped along by the drinks. And speaking of drinks, I drank about one third of a margarita and felt tongue tied. That's how long it's been since I've had anything to drink, asides from a beer or two since Liam was born. 
The night pictured above, made me feel like I was with my high school girlfriends again, hittin' the divey bars of San Francisco.  Or small local bars in the East Village or Brooklyn.  We only talked about the kids a little bit.  And the husbands just a little bit. Mostly we talked about....well, again, I won't go there. (haha!). 
And, the Elks Club!  A little piece of SLO I didn't know about.  I drove there and it was kind of creepy foggy outside, maybe it felt that way cause the Elks Club is across from the cemetary and down the street from the Drive-in and a trailer park.  So, thick fog, a near deserted parking lot and a club that hasn't changed since 1972 or so.  Tina had to come let me in, cause it's private and you have to be a member (some friends are members so they can use the pool with the kids, and maybe the husbands can go and watch a game or schmooze).  And we were the only ones there besides the bartender.  I've only watched two episodes of True Blood, but it was very True Blood.  I expected to find a body in the bathroom, or meet a vampire if I left by myself to go out to my car.  And the new Hipstamatic app on my fancy new phone captured just the right feel for the night- nostalgia for things past.

But the first night I went out this week was on Thursday for the premiere of the latest Twilight movie, Breaking Dawn.  I don't know what was more exciting, the movie (eh.....) or going out for the first time with friends since baby (yes!).  My mom watched the kids, I managed to get Liam to sleep before I left, and luckily he is a pretty good sleeper (gracias mi amor!).  Lots of etrogen in the theatre that night!  We sat on Team Edward side.  And I succombed to peer pressure and went to Robyn's house afterwards where she had such a cool themed spread!  Decorations, drinks, and an Edward replica (see above).
So, thanks ladies!  Thanks for convincing me to come out and have a few moments to feel like someone other than a wife and mom...

Apples and mud

We picked apples the other day with friends.  Lupe inherited rain boots and she and her friends could not resist the mud puddles.  For a moment I thought, "Oh no, you're going to get all muddy, I don;t know if I have a change of clothes...."  But then I realized, it was only my own laziness not wanting to deal with the mess. Kids should get muddy in mud puddles when the opportunity arises.  So she did.  And I did happen to have a change of clthes in the car. It all worked out.  And since that day she has been asking to eat apples all the time.
Letting children play. Giving them opportunities to see where food comes frm. This is what it's all about.

Therapies

Stay tuned........... I'll soon be writing about our experience with cranio sacral therapy.  And I am reading the page of the Institute for the Achievement of Human Potential In Philadelphia, we have friends in Mexico that have taken their daughter there who has Trisomy 14.
Update- went to cranio sacral therapy today, good session i think. i'm excited about this.
From the website http://upledger.com/content.asp?id=26 "CST is a gentle, hands-on method of evaluating and enhancing the functioning of a physiological body system called the craniosacral system - comprised of the membranes and cerebrospinal fluid that surround and protect the brain and spinal cord.
Using a soft touch generally no greater than 5 grams, or about the weight of a nickel, practitioners release restrictions in the craniosacral system to improve the functioning of the central nervous system."

small steps

My little guy will be 4 months old tomorrow.  That's a third of a year! How did that happen?  I am having a little inner battle, which I am sure is quite normal.  I have friends having babies and I find that I am not as excited to hang out and see their new babies because I know that even the ones months younger than my Liam, will more than likely be reaching developmental milestones a lot quicker than my guy and that makes me just feel....weird.  I want to hang out and I will.  Perhaps it is human nature to compare things, people.  But I really want to concentrate on focusing on the positive and taking things a day at a time. So on that note, today Liam did something new!
To help him learn to roll over, I put him on his back and start to lead him to the side by pulling slightly behind his knee and bringing it over.  When I did this last week with him, his arm would stay stuck under his torso, but today.....he was able to pull it out from under him, several times!  These little things seem big.  And it's strange to be so totally conscious of every thing rather than just playing with my baby.  But, it is what it is. His leg and neck strength seems to be better in some positions than in others.  When I hold him facing me, he will push out from me and his head is up and strong, but when he is sitting in my lap facing out, he slumps it a lot. Our little guy is laughing more, with direct stimulation, asi que econtramos donde le da cosquilla. We found his tickle spots!
As for Lupe, this last week she surprised us with two things she seems to have learned on her own.  She spells her name "L.U.P.E." ( I am so certain she will be an early reader).  And she asked me if I wanted Ariel the mermaid's phone number and then said  my phone number (missing one # only). It's true, they are sponges.
"By the age of three, the toddler's brain has formed about 1,000 trillion pathways or synapses ­ about twice as many as his mom or dad have. The toddler's brain is super dense and primed for learning. When a pathway is used repeatedly, it becomes permanent; a pathway used infrequently is lost. Children whose parents speak, read and play with them during these early years have more highly developed brains with better language and learning skills.
Around age three, research indicates a growth spurt in a toddler's head circumference and a dramatic increase in activity in the two major language regions of the brain. At the same time, a toddler's vocabulary surges from about 900 words to around 3,000 words before age five." http://www.growupreading.org/toddlers/index.php?section=210
This is my update for now, it has been a long day and I am going to try and actually go to bed early, though it is so nice to have some mellow time without the kids!

Fairies and bumblebees oh my

 It has been a busy and over stimulating week!  Halloween, my favorite holiday. I love to dress up, I love to see others in costume. And I LOVE the fact that I can make my own kids costumes!  We went to Farmer's Market tonight, and while I saw a lot of very cute kids, I have to say, the home made costumes are the best. I also love seeing the whole family as a theme.  Parents as pirates, with kid parrot was a good one- we did the same thing 2 years ago.
We did a march through downtown, ending up at the park with a food drive for the Food Bank.  Muchos ninos.  Decided against returning downtown- I am keeping my 3 year old away from trick or treating for candy as much as possible.  Last year even the parents were pushy about it.  And Lupe already did trick or treating at preschool today (where as far as I could tell, she had the only hand made costume!)  And my Liam was also going to be a fairy, but I decided to put him in Lupe's first costume.
Below is Lupe as a flower fairy with her amiga Asiely in a photo taken by my friend Robyn Berry, a very talented family photographer who has been doing fun photo shoots at the park.
And we haven't even gotten to carving pumpkins yet!  In this town, Halloween is not just a night, it lasts a week!

Toys and Play

Here's my little guy grabbing toys for the first time!  He has been grabbing at clothes for a while, my clothes - or whoever is holding him- his own shirts.  I'll give him his new diaper to grab onto while I change him.  But toys are going to be our new thing.
The OT (occupational therapist) came yesterday and showed us new exercises and play things to do with him.  I had not been wanting to read much about DS, perhaps I was in denial (natural), but also, he is a pretty "normal" baby so far.  But I am starting to read and am now realizing that the more intervention, stimulation, therapy done with him now, the better for his development.
So our new vocabulary involves words like hypotonia (low muscle tone).  And we will probbaly arrange some cranio sacral therapy soon.  Anything we can do to aid his development.

National Down Syndrome month

http://www.parents.com/blogs/to-the-max/2011/10/06/uncategorized/having-a-child-with-down-syndrome-what-nobody-tells-you/

What to say

A friend came over the other day and at one point she started talking about Liam and if I was into being part of any support groups, or meeting other families with DS kids, etc.  Then she asked if it was ok that she talked about this stuff this way. And i said yes.  For the most part everyone has spoken to me in just the right way about my little guy.  I mean, for many it can be awkward, and people are not sure what to say.   But everyone in the beginning said just the right things, such loving support, it made me cry, in a good way.
Here is one mom's ideas:
http://www.parents.com/blogs/to-the-max/2011/07/25/uncategorized/what-to-say-to-parents-of-kids-with-special-needs/

Super Lupe

Realized Wednesday night at 11 pm that the next day it was Super Hero Day at preschool.  Good thing I am handy with a sewing machine!  So she put her new cape on over her Big Sister dress that I also made her.  The funny thing is that I also had to explain to Lupe what a super hero was.  It hadn't come up before.  So I started by saying how moms and dads were super heros because they do everything they can for their kids to be healthy and happy.  Then, I talked about how drs and firefighters save peoples lives, so they are super heros too.  Then I explained how some fun ones in stories have super powers: flying, being strong, running fast, etc.  And I asked Lupe, "What super power would you like to have?"  And she responded, "A princess!"  Ok then.