GOAL!

Well, not really.

Not as in... he scored a soccer goal.

But, at Anna's opening soccer game this morning, John Michael was all smiles as he showed off his latest achievement of standing unsupported and taking 2 to 3 steps. To that, I say

"Goooooooooooooaaaaaaaaaaaaallllllllll"


I'm guessing that by the end of soccer season, which will be John Michael's 2nd birthday, he'll be ready to kick the ball. That would be a fun goal to work toward!



John Michael loves to climb on Nic, who loves every minute of it!

Nic noticed that JM's ball, jersey and shorts are all Adidas. Now we just need to get Adidas to notice :-) I'm not sure if they have any kids with Down syndrome in their ads, but there's a first time for everything.

Wordless Wednesday (Late) -- My Oddballs

Starring...

• Nic as Bigfoot
• John Michael as the Magic Dwarf
• Anna as the Lizard Person, and
• Greta as Tahoe Tessie

ArtBeast!

We took the morning off from all chores and therapies and headed to midtown to check out ArtBeast Studio on the recommendations of three friends.

John Michael and Greta had a blast. Within seconds of letting John Michael try his hand at painting (I'm bummed I didn't get a photo), he grabbed the white paint loaded brush from my hand and put it in his mouth. If I didn't have to go wash out his white tongue and lips, I would've snapped a photo. He reminded me of some tribal boy or an old-fashioned black and white film actor.

Abandoning the art room for John Michael until he's a little older, we went out back to the shady courtyard. He quickly decided to (literally) try the sand and rocks. The next photo shows him trying to scrape sand off his tongue.

ArtBeast Studio is a dynamic, super-fun, new hands-on art exploratorium for children 6 and under. It is located in an old wooden house, maybe from the 1920's?, and boasts three stories of activities to encourage creativity, including music, pretend play, puppet theatre, a stage for the "actors", doll house loft and kitchen play area, art and craft tables with clay, paper, collage, paint, etc., upstairs dance studio with tumble mats for infants and a separate room for toddlers & preschoolers, and an outdoor courtyard for more water play to wash babies, scoop sand and gravel, and to bang these old pots and pans as loud as their heart's desire.

John Michael LOVED banging on the huge drum. I'm pretty sure he'll be a drummer some day! The metal structure behind him is made up of aluminum tubing, dryer hoses, large tomato sauce cans and other aluminum objects to make a cool hideout.

Greta loved playing the guitar and performing on the stage. I couldn't believe how much fun it was! We stayed 2 hours, left for lunch at a nearby restaurant, and returned for another round of play for Greta while John Michael napped in my arms.

Mt. Shasta Memories -- July 4th, 2009

John Michael and Daddy hanging out at Lake Siskiyou (Mt. Shasta, CA)with majestic Mount Shasta towering in the background.

Nicolas plowing the back acre with Opa's tractor.

Playing a little Frisbee with Anna...

Greta at the Mt. Shasta 2 mile Fun Walk

Nicolas, my super trooper, carried John Michael the whole way on his back because Daddy and Anna left with the car before we could get the stroller out!

Doug and Anna ran the 5 mile and 2 mile races. John Michael is hiding in the backpack. It was a hot, but beautiful day!

Gorgeous sky above Mount Shasta, a 14,162 ft volcano.

My patriotic bunch!

John Michael reaching for a blue butterfly that is just being released at Turtle Bay in Redding, CA.

(* No butterflies were harmed in the shooting of this photo)

An Erato butterfly. I've never seen something so beautiful! We followed it to see where it would land. What a beautiful rose it chose for a great photo.

The Art of the Brick was the title of this show. Very cool!

Here John Michael is stacking Mega Blocks, something he's never played with before. He continually shows me that kids with Down syndrome should be given the same opportunities as any kid!

An actual T-Rex named "Sue" from North America. No flash was allowed, hence the low light. This was quite amazing to see in person. * They don't really know if it was a female, but that's the name they gave it.

As you can see, we had a fantastic July 4th weekend.

I hope yours was, too.

God Bless America!

Almost Wordless Wednesday -- First trip to the zoo

Click to enlarge

Doug and I took the kids to the Sacramento Zoo on Father's Day (Nicolas is at Boy Scout camp all week). It was John Michael's first time at the "big" zoo.

The top right photo is funny -- John Michael is pointing to a lizard with his chubby middle finger. It was also his first carousel ride. We had a great day -- such a fun way to celebrate the Best Daddy in the World.

That night, John Michael had another first. He pooped in the bathtub (photo not included LOL)! I'm so not good with floating poop, so "Best Daddy in the World" took care of it and washed all the toys while I took JM in the shower to get clean.

Will ya get me outta here?!?!?

This was too funny. Greta climbed into John Michael's crib after he woke up from his nap. They were trying to kiss me through the slats -- nice, big, fat, juicy, wet kisses (top right photo). BTW, John Michael's shirt says "Miso Cute" -- a hand-me-down from his cousin, Cole. I agree!

Visit with the geneticist at the MIND Institute

John Michael enjoyed his time at the UC Davis MIND Institute this morning while waiting to see his geneticist.

Stacking is a big thing these days. I loved these huge Lego-style plastic blocks. So fun!

Ahhh, our favorite tank engine... Thomas!

Trains, trains, and more trains.

The UC Davis MIND Institute is an amazing place. Architecturally, it's a beautiful building of brick with the inside filled with glass and light beechwood. Artwork from patients with autism spectrum disorder line the walls, all professionally framed. Some pieces are so incredible, they look like master artists painted them and should be found in galleries. The waiting room for children is also very impressive. This place is primarily for children with neurological disorders, such as autism spectrum disorder and fragile X syndrome. However, John Michael's geneticist that he saw a year ago, also has an office here.

Doug and I with John Michael, along with Dr. M and two interns, crowded into the small room. Dr. M was immediately impressed by John Michael, having last seen him when he was four months old. At that time, we had many worries, concerns, and questions over what health issues may arise during his first year. As we all sat down, John Michael smiled, waved and reached to shake hands with her and the interns who were there to observe. He is very social and loves to interact with people. The purpose of the visit was to follow-up from a year ago and to see his development. It was also my one chance to ask an expert's opinion face-to-face about some treatments other parents are doing with their children, such as high doses of vitamins or taking them to the Institutes in Philadelphia, PA.

On high doses of vitamins, she said that there haven't been any conclusive tests to suggest that it is beneficial, but she has some parents that say they've noticed marked improvement with cognitive function and muscle tone. Other parents have said it hadn't had any effect. She said water-soluble vitamins were harmless in high doses, but to be careful for fat-soluble vits that could build up and cause liver damage. I asked her specifically about Nutrivene and she said a colleague of her said it's a balanced vitamin product and could be used.

As for the Institutes, she has heard of it and said it was highly regarded for children who are brain-injured. Down syndrome is a type of brain injury, according to Dr. Dolan of the Institutes and the children are given therapies based on that. Dr. M said that parents who've taken their children there are very happy with the intense therapies and use of oxygen for cell regeneration (I hope I said that correctly).

Even for parents who cannot or would not do the Nutrivene or Institiutes programs, Dr. M highly recommended daily multiple vitamins, such as Poly-vi-sol, for children with Ds. I can't recall specifically the medical reason, but something like their bodies don't absorb nutrients from food as easily. But don't quote me on that!

So, I will do my best to remember to give John Michael his vitamins... because it's good for his cells.

She noted that his height (50th percentile) and weight (75th percentile) are excellent and his head circumferance (3rd percentile) is typical for children with Down syndrome as their heads and brain size are smaller than the general population.

Finally, I asked Dr. M about Mosaic Down syndrome. It's been a question in my head for a long time.
She said that at first glance, she suspected Mosaicism due to his mild facial features. He could have a simple skin biopsy to find out. In the hospital, just after birth, they tested only about 20 cells. With skin cells, it takes about 2 months to grow and test about 100 cells to see if all or only some have the 3rd copy of the 21st chromosome. Of course, if he does have the Mosaic form, she did tell us that nothing technically changes in how we care for him as it is still Down syndrome. It just gives us more information about him. I'm not sure when that'll happen.

We don't need to follow-up with her since John Michael's needs will be taken care of by his pediatrician. But it sure was good to just have an expert take a look and say, "You're doing a great job... John Michael is doing fantastic." Sometimes we just need an extra pat to affirm all the hard work we do. And that was well worth the copay!

Snacktime! and a Turning Point for me

John Michael is almost 19 months old. He's drinking more from a sippy cup these days -- milk and OJ and sometimes diluted apple juice. He can use a straw very well, too, but these lightweight disposable cups are easier for him to maneuver. Psst, don't tell him it's an older girly princess cup of Greta's. He hasn't noticed yet. BUT! Yesterday, I gave him milk in a Dora the Explorer cup and I asked, "Where's Dora?" With his middle finger, he pointed to Dora and said Dih Dih. Another word! Yay! Now we have Dada, Bap for bath or water, Eh Duh for Greta, "K" for big brother Nic and Cat, and Dih Dih for Dora.

Check this out! He can reach and put his sippy cup in the cup holder of his high chair tray. We're beginning to work on simple puzzles now.

He loves snacking on graham crackers or baby Gold Fish crackers and orange juice. His pincer grasp is getting better. He used to pick up food with 3 or more fingers and shove it in. He's working on using his index finger more, although he still points with his middle finger more often than not.

It looks like he has a headache, but he's actually playing peek-a-boo and trying to hide his eyes from me. It's so funny, I can never keep a straight face! John Michael also will shake everyone's hand and give high-five's. He's very social and loves to get peoples' attention by forcing eye contact.

So here's my "Turning Point." I brought Anna to the racquet club this morning for summer tennis camp. BJM (before John Michael) I used to play tennis at least once a week, on a team or just fun doubles matches. Somehow as he's grown and his delays are more obvious, I haven't had the courage to put him in the play care room at the club so I could play tennis or exercise. As a result... well, I'm not physical enough.

On our way out, I decided to pop in the play care room and ask the woman there if there were slower times and whether they would take JM. It turns out that every morning from 9:30 to 11, the 4-6 year olds go outside to play on the basketball courts so the room would be quieter with kids more his size.

I went through the diagnosis, explained he's healthy as a bear -- just delayed in some areas. I was choked up and on the verge of tears the entire time I was talking with her. She watched him crawl over to the shelf, pull out some big plastic dump trucks and start pushing them around. She asked a few questions about whether he could eat Gold Fish (yes) and drink from a sippy cup (yes) and whether he was OK with strangers (not always, but a Binky will help). She remembered Greta from the past and asked if she would be joining him (yes!). After watching him play contentedly for a few minutes, she said he'd do fine in there and that it would be good for me and him. Before we left, she knelt down, looked John Michael in the eyes, and spoke directly to him and welcomed him to come anytime. I smiled, thanked her and said, "I promise!"

I left there with a load lifted off my shoulders. I'm still emotional typing this. It's been 2 years since I've played tennis. It's the only sport I thoroughly enjoy and I miss the physical and social aspect of it. Last year Nic and Anna got to play while I stayed home with a baby. Now it's my turn. I think this might be a great summer.

Met another new blogging friend...

Saturday was one of those super-busy, every minute of the day is planned, fun days where I really didn't lift a finger beyond vacuuming the living room and entry. We started with Greta's Trik-a-thon at preschool. She rode 15 laps around her school on her trike and raised some money for her school in pledges.

Anna joined us. The girls had fun "hanging" after lunch.

Anna adores John Michael. Seriously!

She and Greta can't get enough of him and

Greta gets jealous when Anna "takes over".

Below: Saturday afternoon, some local blogging moms met up with Chrystal and Malea of "One More, More than One" who were visiting Sheree and Gabby for the weekend.

L to R: Sheridan, Gabby, Malea, and John Michael

And us moms... Chrystal and Malea, Monica (me) and John Michael, Sheree and Gabby, and Lisa and Sheridan.

We're all going to the Convention. How 'bout you?

Come visit us at DS Bloggers so we can meet you at the Convention, too. You can also check out my previous post for more information.

John Michael's cruisin' in the kitchen...

Take a look at what goes on when I'm out of the room!

I just happened to walk back to the kitchen to find John Michael pushing a barstool and walking behind it! He'd already moved it from the other side of the island by the time I saw him! Lucky for me, the camera was close by and had ample battery power.

So awesome!

Respite -- a welcome break!

John Michael loves his "bap" (as he calls it).

What a ham!

I guess he thinks the red bowl is a top hat like the one Nic wore as the Artful Dodger in Oliver! LOL

At our last IFSP meeting, our regional center offered us 48 hours of respite services per quarter. That equals about 16 hours per month or 4 hours per week. My mind quickly turned to thoughts of "me time" and playing tennis and shopping and running errands kid-free. Mostly, I've used the time for dates with my husband, Doug.

The toughest part was trusting someone to watch my little guy. The first woman I interviewed was nice, mid-50's, but smelled heavily like cigarette smoke. If someone smokes, it's their business, but I don't want my child to smell like smoke when he cuddles with someone. The second woman I interviewed over the phone. Each time I called her, she sounded like she was asleep... in the middle of the day. And had no phone etiquette. OK, next!

Third time's a charm. On our third try, I asked her straight up if she smoked and about her experience. She's worked for respite 5 years and has an adult cousin who has Down syndrome. She takes him bowling and hangs out with him. She's pretty young, early 20's, doesn't smoke. Doug and I tested her out with a 2 hour dinner and art show date. All 4 kids really liked her and Anna said, "Mom, you can't judge a book by its cover," referring to her current make up and fashion style. We've used her several times now and I feel comfortable with her. Most importantly, she takes John Michael for walks and they ate lunch in the backyard and she really focuses on him.

Yesterday, we had another woman come over since #3 was spending the weekend with her cousin who has Ds. I'd interviewed #4 over the phone and she sounded great. She's 35, works in the medical field as her day job, and loves kids. We totally hit it off and she fell in love with John Michael (her words) within minutes. Of course, he sealed the deal when he layed in her arms and fell asleep while we were finishing up details.

So now we have two respite workers that we like and it's such a relief knowing our kids are happy and well-cared for while we're away, taking that much-needed break. Ahhhhhh, thank you to our Regional Center and UCP for your services!