Saturday, June 27, 2009

Brotherly love and Boy Scout camp

Nicolas made it home safely from a week away at Boy Scout camp. He's such a vibrant part of this family and we've all missed him very much, including Anna who has had to be the big sister all week and take on some of Nic's chores.

While at camp, Nic earned 4 merit badges -- Music, Wilderness Survival, Leatherworking, First Aid and he partially completed Environmental Science. Wow! For Wilderness, Nic and another scout had to spend a night outdoors and could only bring 3 things with them. He brought a towel, plastic bag and a flashlight. They made their own shelter from pine needles, wood and branches. He said he only slept for 30 minutes the whole night! For Music, he had to compose 12 measures of a song, sing God Bless America with proper posture and voice, name the 5 instrument groups and attend two live music performances (he used my vocal jazz concert and a music in the park we attended with our family recently). I love the short piece he composed for piano. There are some cool jazz chords in there.

All week, John Michael has been pointing to Nic's picture around the house and saying "K". It is so sweet to see them together again. He gave Nic big hugs and kisses and smiles.

While at camp, Nic said he saw a boy from another troop who had Down syndrome. He said he was about 12 or 13 years old. He didn't have a chance to talk to him, but I got choked up thinking about John Michael being a Boy Scout in the future. He'll be the best Scout ever. The BSA has a special allowance for people with different abilities. Where typical kids age out of Boy Scouts at age 18, there is no age limit for those who have developmental disabilities. Recently, I saw a video of a young man (age 40!) with Down syndrome who earned his Eagle Scout rank. That is so hard to do for any young man, so I was doubly impressed when I saw that (not to mention I was crying by the end of the video)!

Have a great weekend! Mine's already getting better :-)
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Wednesday, June 24, 2009

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.
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Tuesday, June 23, 2009

Book and Toy Recommendation

I love it when we find toys that do more than just entertain, make noise, and eventually collect dust. Here are a couple that recently caught my eye and have been a hit with John Michael.

We bought the Fisher Price Laugh and Learn Mailbox at Target after John Michael first saw it at Gabby's birthday party. It has so many great learning features such as putting the 3 letters in the thin slot, opening and closing the mailbox to put the package in, a snail shell for turning and a jingly spinning thing to manipulate little fingers. It has a music setting and learning setting as well. After a while I get annoyed by the little bird that makes noise every time you touch it, but you could also turn off the sound.

Another great find is the Slide and Find Words book. We bought this at Barnes & Noble off the shelf. On each page, children learn their colors, match pictures on opposite pages of different sizes, and the best part is the sliding door that reveals a related picture; e.g., a banana on the outside and a sliced banana behind the window. Each sliding window (4 per page) opens in a different direction (up, down, left and right) so there's lots of fine motor work on that as well. John Michael is working on that as well as pointing with his index finger (vs. his middle finger) 50% of the time.

We also really like these blocks. They are Parents brand from Target. The blocks are bigger than traditional wooden blocks and are rubbery in texture. They can be squeezed to make a sound, have numbers and pictures all around, come in different colors, have a "lip" or raised edge for easy grabbing and the texture makes it easier to stack on top of each other as well as balance on carpet.

Finally, there's no better playmate for John Michael than Daddy and his siblings. Sorry, Target doesn't carry these particular models anymore. ;-)

Friday, June 19, 2009

Sharing the Love...

It's gonna be another hot day here.
In a little while, we're going to buy a plastic pool for splashing. Here are some photos to make you smile.
Greta and John Michael sharing the love...

and kisses...

and the best hugs...

John Michael is showing off his new International Down Syndrome Coalition (IDSC) for Life onesie. Check it out if you have a chance.

Have a great weekend!
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Thursday, June 18, 2009

Honest Scrap Award!

Thank you to Edel (aka Squelly) of The Dreamer's Day in London for presenting me with the Honest Scrap Award. I am honored to have been chosen. How wonderful to communicate with people across the world with a few clicks on the keyboard!

In accepting this award, I need to do the following: 1) Say thanks and give a link to the presenter of the award. 2) Share "ten honest things" about myself. 3) Present this award to 7 others whose blogs I find brilliant in content and/or design, or those who have encouraged me. 4) Tell those 7 people that they've been awarded HONEST SCRAP and inform them of these guidelines in receiving it.

Ten things about myself:

1. Sometimes I am reserved and have difficulty making "small talk" in social settings, until I get to know you better. Then you can't stop me! I have found my voice through writing/blogging.

2. My first instrument was the accordion. I took lessons for 3 years, but secretly wished I could've played piano instead.

3. I love being in nature with my family but am not keen on camping.

4. I am very unfocused and easily distracted throughout the day. Also, Need More Sleep! (or is it 4 kids?!)

5. I was at the top of my class in high school (grade-wise, not socially), but struggled once I got to college. It took 7 years to finally settle on a BS in Applied Mathematics & Statistics. I sang throughout high school and college and would've loved to have a vocal performance degree.

6. I love blogging and meeting other moms through blogging who have a child with Down syndrome.

7. I am a terrible procrastinator, but can really get my brain in gear when the pressure's on.

8. My name, Monica, dates back to 4th century northern Africa or Phoenicia. St. Monica is the patron saint of mothers. She prayed for her son (St. Augustine) for many years who eventually converted to Christianity. My name also means "advisor", which fits since I like to help people and share what I've learned.

9. I was born on the Feast of St. Francis -- October 4th. Maybe that's why I love nature.

10. I would love to take classes in HTML, writing, and art to see where they might lead. I love doing graphic art on the computer, too. Sometimes I think about getting a teaching credential for math, but that desire usually fades away.

Now for the hardest part -- coming up with only 7 blogs that I love.

In no particular order:

Jennifer @ Three's A Charm
Lisa @ Genetically Enhanced
Sheree @ The Phamily Blog
Sharon @ Brennan's Beginnings
Ria @ Bill and Ria - Sharing experiences about life, parenting, and Down syndrome
Beverly @ Adventures of Home Schooling Noah
Debbie @ Three Weddings
Maggie @ Take a Walk on the Happy Side

and for a new blogger --

DS Mama @ Down Syndrome New Mama

OK, so who's counting anyway? I could easily add 10 more!

Monday, June 15, 2009

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!
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Friday, June 12, 2009

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!
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Wednesday, June 10, 2009

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.

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Monday, June 8, 2009

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.

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Sunday, June 7, 2009

"DS Blogger" ID Tags for bloggers going to the NDSC Convention

If you're someone who blogs about Down syndrome and you're headed to Sacramento this summer for the National Down Syndrome Congress convention, here's a fun way we can identify each other.

Check out our new blog, DS Bloggers.

If you send me your name, blog name and URL, we'll add you to our list and create a custom DS Blogger ID badge to wear to the Convention.

This will be an easy way to visually identify other Ds bloggers who we may not recognize in person. What a great way to strike up a conversation and forge new friendships!

Please share this link with your blogging friends, post to your own blog, add it to your Facebook, and grab a button.

We're also working on finding a time to meet. More on that in the coming weeks.

My team members are: Jennifer Varanini Sanchez of Three's a Charm, Sheree Pham of The Phamily Blog, and Lisa Lindsey of Genetically Enhanced. Come check it out and register your blog.
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Thursday, June 4, 2009

Life's More Fun with Friends and NDSC meetup

John Michael enjoyed having two of his friends come over to play yesterday. Gabby came with her mom, Sheree, and Sheridan came with his mom, Lisa. It was so fun to see them interact together. Sheridan was showing off his new sitting up moves. Gabby was the charmer of the group, smiling and clapping and occasionally knocking John Michael over. He didn't seem to mind, though. John Michael stood at the piano and played a couple notes for his friends. I just love seeing him with his buddies! Melts my heart.

On a separate note... we were discussing how to identify fellow Ds bloggers at the NDSC Convention this summer. If you have ideas from previous conventions, please share. I'll soon be making a separate blog for listing names and blogs of people who would like to meet or be identified somehow at the Convention. I was just thinking how cool it would be to have a special name tag or ribbon to identify us bloggers so we might strike up a conversation. Ideas welcome!
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Wednesday, June 3, 2009

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!

Monday, June 1, 2009

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!

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