With Auntie Caz

With Auntie Caz
Originally uploaded by sammi's mom

Steve's sister, Caroline, came out here from LA for the week over Christmas. This was the first time she got to meet Samantha, and, after two days of Sammi studying Caroline verrrrry carefully, she finally warmed up (she's suddenly developed stranger anxiety in the last few weeks). Here's a photo of the two of them in the Puma store in Georgetown, checking out a Christmas present for Steve, and Sammi's next pair of sneaks for the spring.
Samantha thoroughly enjoyed Christmas this year, tearing the wrapping paper and reaching for the gifts inside. Soooo different from last year, when she really could not have cared less about what was going on around her!

Oh, very exciting news--one of her molars is finally through! It's about time! I think the others should be following soon, but they're definitely taking their time.

Get Me Outta Here!

Get Me Outta Here!
Originally uploaded by sammi's mom

Hehehe. We took a nap-less Samantha to the DSANV holiday party on Saturday for 3 hours. She actually did very, very well, and didn't start to melt down until close to the end. I wonder if there are special classes for Santas to take on how to deal with smelly/cranky/active/snotty/aggressive/overly-inquisitive little kids. They have this amazing ability to handle just about anything, and don't seem to have any qualms about it. I think this guy was someone's dad from the organization, but ordinarily I'd imagine that the store/mall/town center Santas are just guys who need a job. Scary that we let our kids sit on their laps! I haven't heard of any Santa horror stories yet, though. And to the two people who actually read this, have you ever heard of any?

Smile!

Originally uploaded by sammi's mom

We got Sammi all bundled up today to go to a free children's Christmas concert at Wolftrap. It would have been outside and we were going to meet up with Michelle, Brian, Matthew & Nate, but right before we left we noticed that it was raining Sitting in wet grass, even on a blanket, for two hours with a baby that totally missed a nap and was bordering on very cranky, did not sound like such a good idea. We decided to take a short visit over to the mall just to get out of the house for a while.

Yesterday afternoon, also after having missed the better part of her afternoon nap, I took Samantha to Pia's housewarming party. Pia is a friend who had a baby boy, Grayson, 5 months ago and just bought a new house. Nicole was there with Ryan, and there were several other moms and babies I know from Pia's "Spaghetti Sisters" lunches (lunch gatherings of preggo/newly birthed moms that have been put on hold since everyone who was pregnant has now had their children and presumably are discovering that it is waaaaaay harder to leave the house with a child than they'd ever anticipated). Samantha, social butterfly that she is, had a ball. She was waving to everyone, and was particularly enthralled by the other babies. She patted their hair gently (finally, she's not pulling anymore!) and was so sweet! However, her recent explorations into her future as a softball pitcher gave a nice little red mark to the face of one baby when she threw the book she was reading. No permanent harm done. Whew!

Next weekend is the DSANV holiday party. I'll be sure to post again then, and I'll certainly try to make it more interesting reading. Not too much to say today, except that Samantha is the coolest little kid on the planet.

Little Devil

We had originally gotten a lion outfit for Samantha for Halloween, but unfortunately, it didn't fit well. It was way too hard to get over her head and to get her arms into, so Steve went out on Halloween day to Toys R Us and found this costume for about $3. I guess that's what happens when you buy stuff on the day of the holiday. The wings on the back attach with velcro--totally cool. You can't see her legs in this photo, but the outfit came down to her knees as shorts, and she was wearing a pair of black and white polka dot tights and red patent boots. We didn't have anything specific we were going to do that night, but we ended up just walking around the neighborhood. She was in her stroller, which wasn't exactly conducive to going up to people's houses (up steps and around cars in driveways) to trick-or-treat properly, so Steve took her out of her stroller to go up to one person's house. So she did have at least one experience trick-or-treating! It'll be different with her walking next year.

"One Of Us, Not One Among Us"

Well, yesterday was the Down Syndrome Association of Northern Virginia Buddy Walk, and what a fabulous day it was! The weather could not have been better, and Samantha could not have been more charming and adorable! She had a blast playing with her friends, Matthew and Bonnie.

The walk took place at the Fairfax County Government Center, where I'd previously attended the ARC picnic back in July. It's a beautiful setting-rolling, grassy hills surrounded by trees. There were a lot of people there, lots of activities for the kids, and great company. Our team, Sweet Pea United, consisted of me, Steve, Samantha, Grandma and Grandpa McKinley and their friend, Beryl, Connie (from work), and Crystle. Melanie, Sam's wonderful speech therapist, joined us as well for part of the time and for the team photo.

Samantha took a little nap in Steve's arms, waking during the walk when Steve was approached by the cameras for Telemundo to talk about the importance of the event.

Steve was recruited to coach and play in the Dads' soccer team against the men's Special Olympians. There was a moms' team, as well. The game was a lot of fun and everyone had a really good time. The moms' team won 2-1, and the dads' team won 2-1.

I would totally write more, but it's late (9:44 is late for me these days!), and I'm really tired. I have no idea if anything I've just written even makes sense or is remotely interesting, but maybe I'll go back and edit at a later date...

One Year Ago Today...

...Samantha had surgery at CHOP to repair her heart. I remember how terrified I was the day after she was born when a cardiologist (Dr. Hougen, the one we continue to see, and absolutely love) came into my room and told me that she had a congenital heart defect that would need to be repaired in 3-6 (I was waiting for him to say "years", here) months. Not like years would have been any better, but the immediacy of it was just so huge.

The night before the surgery, while staying in Ronald McDonald House, Samantha had her first all-out belly laugh. Steve had been making funny faces at her and blowing raspberries into her neck. I got a photo of it (below). I felt so guilty then, thinking about what lay in store for her in just a few hours. I was worried that maybe she would never laugh again. I'm glad to say how wrong I was! The surgery, done by the brilliant Dr. Thomas Spray, only took about 2 hours. And Sam's recovery time was very quick. We were out of the hospital in 5 days, and Samantha had to stay on oxygen for 2 weeks, but she bounced back beautifully. The photo at the top is the day of her surgery, and the one on the right was 8 days later.

We're all very, very grateful.

More Words!

Okay, I think a few posts ago I said Samantha was saying "ball" and "baby". Now she's much better at them, and you can distinguish between the two of them. She's also added "bear" (behhhh--kind of like she's saying it with an English accent, thanks to daddy), "kitty" (toto--her speech therapist said this is good--although she's got the wrong vowel, she's got the staccato sound of the "t" in kitty) and "more" (I haven't heard this myself, but Steve heard it twice the other day. This does not work when baby is hungry and impatient, however.) So, including mama (just smacking her lips together twice) and dada, this makes 7 words!! It's frightening how much of a sponge she's suddenly become.

We spent the weekend up in New Jersey visiting Mom Mom, Pops and Uncle Josh. It was nice to go up there, but it's so crazy to try to pack, even just for overnight! It's amazing how many bags we take up for Sammi--1 shoulder bag of toys, 1 diaper bag, 1 shoulder bag of feeding stuff, a pack and play for her to sleep in, and her clothes (several choices since we don't know what the weather will be like at any given moment), mercifully smushed into our own bag of clothes. And this time we returned with the addition of a rocking horse. It's beautiful--mostly cloth, covered with a hand-made blanket of sorts and a leather bridle--and was a birth gift from Mom Mom & Pops. Samantha's going to have so much fun on that when she's a little bigger!

It Figures!

London Heathrow Airport
Time Zone: GMT
Airport Code: LHR
Tel: +44 (0)870 000 0123
Fax: +44 (0)20 8745 4290
Distance from city: 24km (15 miles)

Okay, so daddy's not coming home tonight. Daddy lost his passport on the way to Heathrow. Fortunately, however, it was left on the bus that took him from Coventry to the airport, and hopefully by now they've returned it to him (he contacted them to confirm they had it). Virgin Atlantic (love them!) have changed his flight to tomorrow night so he's staying either in a hotel near the airport or perhaps has gone into the city center to wander a bit and find a bed and breakfast. Of course, I'll have no way of knowing until he arrives tomorrow. Samantha has an appointment tomorrow with her ENT, so I've taken the day off. I'm just excited for the excuse to spend another day with Sam and not have to put her in daycare. But I'm very, very sad Steve's not home. We're all seeing the humor in it, though, by comparison with everything else he's gone through lately.

First Real Pair of Shoes

I took Samantha to Shoe Train in Potomac, MD on Saturday morning to get her first real pair of shoes. Apparently, according to just about every parent on the DSANV listserve, Ed at Shoe Train is the best at fitting special needs children and at fitting shoes with orthotics. Samantha's orthotics arrived a few weeks ago, and Renee also suggested Ed. Shoe Train would best be called "Shoe Zoo." I got there only an hour after they opened, and the place was absolutely hopping. I signed in and waited about an hour to get seen by Ed, but Samantha wa as good as gold and totally enjoyed watching all the other kids there. She even got a few swipes in at other people's hair, which I deftly managed to deflect in the nick of time (yikes, what a disaster that would have been!). Anyway, the shoes are adorable and the cost was formidable, but if they help her to learn to walk, then it'll all have been worth it.

Later that day, Michelle came over with Matthew and Nate. It was wonderful to have them over, and Samantha, as usual, loved having other kids to play with, although Matthew's opinion of Sam must be getting lower and lower each time she pulls him down and grags his hair! I'm not sure hot to put a stop to this habit, but hopefully she'll grow out of it soon.

Daddy's coming home tomorrow night!!!!!!!!!!!!!!!!

In Loving Memory of Sidney Bates

Steve's father passed away this afternoon. The decline came very suddenly, but the end came very peacefully. He will be very, very missed--he was a good man who would do anything for his family. I'm so happy Samantha had an opportunity to meet him.

Sammi Loves Her Daddy

We went to the park on the Potomac River in Old Town yesterday. It was such a gorgeous day, and Samantha loves being outside. It also presented some wonderful photo ops.

Samantha is also practicing some new sounds. We're pretty sure she's trying to say "ball", or at least that's what we're telling her she's saying! It's just so cute how she purses her lips and says, "bouwwww". Then she'll say, "bouww bouww", so we're telling her she's saying, "baby". Only time (and Samantha) will tell.

The Cat Didn't Get Any

Need I say more? Cute and clever!

We just discovered what those disposable bibs with the pocket on the front are for, that Steve's sister gave us before Samantha was born. I'd forgotten all about them until this moment.
I was so excited at this new turn of feeding events that I tried the same thing the next day, and found out that trying new things does not work when baby is tired.

I'm So Proud!

I swear, every day brings us something new. I'm always so proud of Samantha, I could just burst!

On Thursday Sam's physical therapist brought us a walker to encourage Sam to move forward and, well, learn to walk! Well, she said that that was the best she'd ever seen any child use that walker for the first time, including her own typical child! It's totally just a matter of time before she really takes off!
We've been waiting for ages for Samantha to show some sort of interest in picking up foods or snacks and putting them in her mouth and chewing. Lastnight I gave her a peach puff and put it in her mouth for her, then put a few on the floor in front of her, and lo and behold, she picked one up and put it directly into her mouth! It was just about as shocking as the night I walked into her room and saw her sitting up in her crib. If Steve hadn't been sitting right there watching it, I would have been desperate for a witness.
Last but certainly not least, I had submitted a couple of photos of Samantha to the NDSS for this year's Times Square video. On the day of the NYC Buddy Walk, they'll show a video montage of people with Down syndrome interacting with friends, the community, or just having fun. I sent two photos--one of Samantha laughing on a swing (the photo that's on my first blog entry at the bottom of this page), and one of Samantha and Matthew playing together in a pool. Well, out of the over 2500 submissions, only about 215 were chosen, and Samantha on the swing got picked! So her picture will be plastered over this massively huge video screen and posted on the NDSS website in the video. I'm very excited about this! Of course, we won't be rushing up to New York (it's on September 30th) to see it live, but that's okay. Here's a link to last year's video: http://www.buddywalk.org/index.cfm/fuseaction/tsv.contentItem/contentID/09404688-78f0-475e-848a-242168cdf319

And speaking of the Buddy Walk, our team page is up for the Northern VA walk on October 13th at https://www.kintera.org/faf/search/searchTeamPart.asp?ievent=235179&lis=1&kntae235179=FCDE263D5CA64949829C5595C5B85CDA&supId=0&team=2046690&cj=Y

Samantha's First Childhood Illness...sort of

First of all, I should point out that Steve made it back from England safely. His father was stronger by the time Steve left, due in part, no doubt, to the presence of his family around him. They actually moved him home this past Friday so he can now sit in and enjoy his garden around him, rather than sterile hospital walls.

Yesterday Samantha woke up covered in a strange rash that seemed to be more concentrated on her elbows, knees and backside (although it's all over). But she didn't seem to be showing any kind of symptoms of illness. We called the doctor, who assured us she'd had her measles, mumps and rubella vaccine at her last visit. She told us that there are hundreds of viruses that cause rashes and that have few other effects and that we should just wait it out. Today the rash looks worse, but Samantha still doesn't seem bothered by it. I took her out shopping, mindful of the looks I was likely to get. As it was, no one looked twice, and I shooed one little girl away before she reached curious fingers out to her. I told her mother that Sammi was just getting over something, and boy did she pull that child away quickly!

Here's a photo from yesterday, with Sam not looking any worse for wear. You can't see the rash in this picture, though.

I totally forgot to mention that while Steve was in England, the day that the post below was written, Samantha started full-on crawling! No more commando-style! She especially likes to go after the cats (who have now learned not to take any moments of peace for granted). Oh, and she'll start heading in the direction of the cable box under the tv, and when I rush toward her, telling her "no!", she crawls even faster! Cheeky little thing. She has these 3 little colored plastic balls that she likes to pick up and throw, and if you ask her, "where's your ball?" she'll look all around her until she spots one and crawl over to it to pick it up! I'm really, really proud of her. Renee, her physical therapist, had her practicing her balance the other day by standing her up with her back against a wall and reaching out for things. Renee is amazed by Samantha's progress and said she's sure she'll see her as a star in the Special Olympics some day. I have no doubt.

"A Life Like Yours"

I had a conversation with an amazing woman named Jennifer yesterday. Jennifer is 39 years old, and has Down Syndrome. Samantha and I attended the picnic for the Arc of Northern Virginia in Fairfax. Jennifer came up to us and introduced herself and asked if she could sit on the grass with us for a while. I said absolutely. Now, I have never spoken to anyone else with DS over the age of about 1. Frankly I was a little nervous. I guess because I didn't know what to expect. I've wanted to speak to an adult, but there's always that fear of the unknown. Will I be able to understand them? Will I be disappointed in the glimpse into Samantha's future? Will it be awkward? I can only say how grateful I am for the opportunity Jennifer gave us yesterday. She is an amazingly articulate, bright, self-aware woman, and I was absolutely drawn to her. I was disappointed when she had to leave. She asked a lot of questions about Samantha's development, and spoke about some of her own. She said that she was glad to see I kept Samantha, as her mother had chosen to keep her. It makes me teary-eyed to think about that. I would never have had it any other way. She, too, had had heart surgery to correct a defect when she was young. I asked her if she works, and she said that she has been working at one of the government agencies (I think it might have been the EPA, but I can't remember now) downtown for the last 10 years (and just received her 10-year pendant!) and takes the bus and the metro every day to get to work. I wish I could remember more of the conversation, but just the overall feeling of 'fulfillment' for having spoken to her is mainly what remains. I told her and her mother about the DSANV picnic in 2 weeks, and hope to see them there. I expressed my happiness at having met her, but wish I had told her what an impression she had made on me. I hope she knows anyway.

The Single Mom

Well, not really. It's just temporary. Sadly, Steve's father in England is very ill and he left Wednesday night to go see him. I'm sorry Samantha and I couldn't join him, but it just wasn't possible. He should be back next Thursday night. My thoughts are with Sid.

I must say, though, the last 3 days have felt like 3 months. Not because anything's been a chore--on the contrary--Samantha's an absolute joy as always, and so much fun to be around. It's just because it's strange without Steve here and we both miss him terribly. And I'm not quite sure what to do with the power I'm afforded by holding that little mechanism known as a "remote control". And exactly how does that thing in the kitchen work? You know, the one that has the 4 pretty little fires on it and the cute little door on the front?

I am impressed with myself, however. On Thursday I took Samantha to the home daycare we used to take her to back before her surgery last year. Somehow I managed to get myself ready for work, get her up, dressed and fed, take her to Mrs. Yasin's house and still catch my bus and get to work on time! I was so worried about Sam, though. This was the first time she'd been away from us for any period of time since last September. Being the over-protective mom that I am, I asked my own mother to call Mrs. Yasin to see how Samantha was doing. Of course, I wanted it to look like I wasn't the one checking up on her. But before I could get the news from mom, I broke down and called her myself. The report was glowing, and apparently she did very, very well and played with the other kids. I'm so proud of her!

I took yesterday off because she had 2 therapy appointments scheduled that I didn't want her to miss, so I'm having a 3-day stay-at-home mommy-fest! I love it, but it would be better if the stay-at-home daddy were here, too.

Daddy, we totally miss you. Come home soon!!!

Birthday Girl

Birthday Girl
Originally uploaded by sammi's mom

Samantha celebrated her 1st birthday on May 30, 2007. We had a quiet celebration with Grandma and Grandpa over for dinner. Sam had very little interest in the presents (which were lovely) other than crinkling up the wrapping paper and throwing it. She ate a few little bites of birthday cake, but because she doesn't chew yet, we had to keep it to a minimum. The week before her birthday, she was invited to her first birthday party by Matthew Ray, a little boy who just happens to have the same birth date! I still can't believe she's 13 months old already. The last year has been really fast and I'm astounded by all of the changes she's gone through in such a short period of time. She's no longer a baby, but is every bit a little girl!

My First Blog

Welcome to the Bates Motel!

This is my first blog posting, and I hope that I can keep it going! My plan is to be able to chronicle our lives, as mundane as they may be, and to celebrate Samantha's life, growth and accomplishments. Feel free to contact me at any time, and feedback will be greatly appreciated!

Love,

Becca