Monday, October 26, 2009

The T21 Traveling Afghan

I haven't received a package in the mail that has made me more excited than when I opened the box that appeared on our doorstep, Thursday, October 8th. (I'm way behind in this post...I know.) Inside was the T21 Traveling Afghan and its travel companion, the journal. My eyes poured over every page and every word written in the journal by those who had previously played host. I knew I couldn't wait to add my words to it.

After stealing myself away from the journal I took the afghan over to Landon. He hugged it, played with it, and then, didn't want anything to do with it. I know the afghan's significance is lost on him right now.

We were fortunate enough to receive the afghan so early in the game because I requested it for our Buddy Walk (I'll post about that later).

The weekend went by so fast and before I knew it, Tuesday morning had arrived and it was time to send the afghan on its way. The Afghan's next stop? The Buddy Cruise! I took time to snap a few more photos before sadly making my way to the post office.

I am so excited for this project and can't wait to see where it goes. I think the afghan's travels will impart such unique insight and understanding to enhance support, acceptance and awareness for individuals with Down syndrome. For those who haven't yet heard, or don't know much about it:

The T21 Traveling Afghan was lovingly made by Chandos (CJ) Field, a mother of a child with Down syndrome. The afghan is making its way across the globe to families with a loved one with Down syndrome. After the afghan makes its ‘round-the-world journey, Ms. Field hopes to turn this project into a book to celebrate the afghan’s journey and promote acceptance and awareness of individuals with Down syndrome.

Fun Facts about the T21 Traveling Afghan:

- The afghan began its journey in March of 2009.

- To date, the afghan has visited 20 families in 10 different states.

- The afghan has attended 5 Buddy Walks, a Buddy Cruise and the International Mosaic Down Syndrome Association and National Down Syndrome Congress conferences.

- Over the next several months – maybe years – the afghan will embark on a journey across the US and around the world for brief stays with over 250 families patiently waiting for their turn.

Thank you CJ, for connecting the world together. One extra chromosome at a time.

Friday, October 16, 2009

Ballerina Girl

You are so lovely...

I can see in you my dreams come true...

The joy you bring me...

Every day and night, when I hold you tight...

I only want to say, "I love you."

If you didn't pick up on it, the words are adapted from Lionel Richie's song Ballerina Girl. I think of it every Tuesday when I'm getting McKayla ready for dance class. She has been going for several weeks now. I had been waiting for the opportunity to sign McKayla up for dancing. I even think that I was WAY more excited than she was when I first signed her up. I love dancing - though I'm not much good at it. But I love watching dance - all forms - and I hope that McKayla takes on and keeps that love. I hope that dance will be a part of her life as she grows. I'm looking forward to recitals and performances, parades and competitions. The good thing is that she enjoys dance class for now, and looks forward to going. She takes ballet and tap and LOVES those tap shoes. I can't imagine any child that wouldn't.

It was a rocky start for the first class. She didn't listen well, danced to her own tune and tried coming out of the classroom several times. However, progress is being made with every class. She is paying attention and trying the steps demonstrated, though I will say she is quite uncoordinated. Hopefully, dance class will improve her balance and coordination.

The pooey part is that the parents aren't allowed in the classroom. Completely understandable - we are too much of a distraction. Instead, we huddle together in front of a one-way mirror for 45 minutes while our little ones attempt to follow directions. Some moms immediately stake their territory at the window, others are more considerate for the one lady who brings her 19 month old son that reaches out to grab anyone within arms reach and is mostly NOT content to stand in his mother's arms while she watches her little girl dance.
Yeah, that mom is me. Landon is one curious kid, and if you are not right with him every second - stuff happens.
So the cool news is that McKayla gets to be in two parades in December and then her recital will be in May sometime. The little ones won't be dancing in the parades, they just ride on the float. I am interested, though, to see how she does with her recital. If she'll actually get up and dance in front of a bunch of people. She can be shy - but, we'll see.
I'll let you know how it goes!

Tuesday, October 13, 2009

Moving Right Along

So Landon surprised us this weekend by going beyond the few steps he was taking between objects to randomly walk in whatever direction he wanted to go. In the following video, I helped him stand (he hasn't yet figured out how to do that without something to pull up on) and then he started walking. His distance varies before he plops down, but hey, he's making progress!! Needless to say, Momma's back is VERY thankful for this progress!

Thursday, October 8, 2009

Walking on Sunshine

Okay, so we've been working on this a while. And Landon is building up the confidence to let go. To take steps on his own. You'll notice in the following video a coffee table. This is Landon's coffee table. We bought this coffee table at a neighborhood yard sale (actually matching my furniture quite closely) specifically for Landon. The idea had been stirring in my head after reading a post about Landon's friend Lois. Landon would take steps from one person to another. Then he would take steps from one couch to the other when the footrest was out - that would amount to about 2 or 3 independent steps. So, I thought giving him a coffee table might encourage him to take a few more steps. It has. And sneaky momma keeps scooting the table further and further away from the couch. He he.

Mary, the wonderful lady that takes care of Landon, reported that today, Landon walked across the living room - without holding to anything! That's pretty impressive for him! (And darn-it, I wasn't there to get it on video!)

Another mom recently posted a milestone reached by her son (who has Ds) on her Facebook status; remarking that her son's triumphs seem so much more victorious than when her two previous children reached the same goal. She's right. When you know how hard your little one has worked, tried anything and everything to motivate the action and worked so diligently on various methods to enable this action to take place - yes - this victory does seem significantly sweeter. The pride and sense of accomplishment, both for your child and yourself (hey, you helped him/her get there, right?), swells exponentially. I imagine marathon runners feel much the same way once they cross the finish line.

A little warning, Landon was quite the fussy monkey when this video was taken (yesterday). So you'll see a glimpse of his emerging temperament at the end.

Tuesday, October 6, 2009

Happy Birthday - To Me!

Today is my birthday. It isn’t a milestone birthday but it is the first birthday that I have felt the most peace and happiness with my age. I dreaded entering my 30’s. I hated the notion that I was getting old (I know some people would like to kick me for saying I'm old). But, in reflection, having the opportunity to have 33 years of memories - some good, some bad - is a celebration in and of itself. I can’t believe how truly lucky and blessed I have been in my life – for having parents, grandparents, aunts, uncles and cousins that love and care for me (and still do!), for wonderful friends that have made the sad times seem not so bad and the happy times even better; my husband whose love, generosity, dedication, devotion, determination and positivity know no bounds; and most of all for my two little wonders of magic and beauty that fill each day with insurmountable and indescribable joy.

Some of the little things that made this day special were: McKayla telling me “Happy Birthday” herself as she was leaving this morning. Landon’s big slobbery kisses. Working from home in my bedroom “office” with the scent of the Greenhouse Yankee Candle, cool breeze coming in the windows and good music in the background. Lunch with Dustin at one of my favorite restaurants – Howletts. My co-worker sending a video that had such perfect timing. Birthday wishes from so many friends, even some that I haven’t spoken with in such a long time. Dinner with my parents. Watching McKayla at dance class, saying to herself “tap little toe”. McKayla leaning over to tell me, “Guess what, Mommy?! I love you!” as we sat on the couch and watched TV. Sitting on the edge of McKayla’s bed while Landon and McKayla lay side by side (with no biting or hair-pulling!) for story time. My best friend sending me one of the best laughs I’ve had lately. My husband attempting to sing happy birthday to me.

I'm sure I'm forgetting some things - you know, old age setting in and everything...

Yes this was a good day.

Thank you all.

Saturday, September 26, 2009

Look at How We've Grown

Here are two pictures of McKayla, and her best friend Jordan. The picture on the left was taken in October of last year at the Chesterfield Berry Farm. This year, we had the opportunity to go again and of course, we had to get the same shot. When you see your child every day, you don't notice how they grow except when you could swear the capris she has on used to be pants... I hope to get this shot for many years to come.

Of course, now that Landon is big enough, we had to start his series. Here, McKayla and Landon were joined by cousin Aidan.

Sunday, September 20, 2009

the Buddy Walk

Hello friends and family!! I know I have been absent for quite some time. Four nights a week now, I am the single mom to two kids. Dustin is wisely using up the remaining college fund from his military benefits to get his bachelor's degree in IT management. Though this is an absolutely wonderful opportunity for him (and hopefully our family will reap the benefits of upon completion) it certainly is a trying time. This has given me an even greater respect for single moms. I love my kids, but wow, it's really nice to have that partner helping you out. It makes a big difference.

So, yes, I have a lot to catch up on, but I have some business to attend to first.

Put this date in your calendar - Saturday, October 10, 2009, 11am to 3pm. That will be the 3rd Annual Buddy Walk to benefit the Down Syndrome Association of Greater Richmond. It will be at the Richmond International Raceway. Want to know what exactly the Buddy Walk is about? I'll let you read.

We hope you can be there. We would love to have as many family and friends as possible come. We want to help show that the diagnosis of Down syndrome is not all that bad. Yes, your child will have challenges and may have serious health issues to overcome, but the joy that fills your life equals what comes with your "normal" child.

Besides, how could you not fall in love with this:

So, if you are ready to register - or if you are able to donate a few dollars - please go to Landon's page. There you will also learn why the Buddy Walk, and fundraising for the DSAGR, is so important to us.

Also, this year, I designed a t-shirt for our team to wear. Whaddaya think?

The quote on the shirt, "The difference between ordinary and extraordinary is that little extra" is from Jimmy Johnson. Sports fans should know who he is (I'm not), but apparently he had several motivational quotes from his career. When I came across it, I was struck. The "extra" part, to me, references that extra chromosome that makes up Landon's cells. And that extra chromosome has made our lives extraordinary. A difference that we hadn't anticipated, but wouldn't change for anything.

Our team name, the LANDon of PossABILITIES, is partially borrowed from the Buddy Walk. At the event, there is a vendor section called Advocacy/PossABILITIES. I borrowed it because even though we are living in the LANDon of Dreams, we are heading to the LANDon of Hope and most certainly expect to arrive in the LANDon of Opportunity, the LANDon of PossABILITIES is what I want folks to recognize most.

This beautiful boy came into our world just 19 months ago. Though sometimes I wonder when things will happen, I never wonder if. I know he has much to share with this world, even if world is only defined by those we know and love.

So please join us - we would love for you to be there!

Tuesday, August 4, 2009

Step by Step

Here is a video of Landon taking a few steps for Ms. Mary today. Right before I pulled out the camera, he took 7 (SEVEN!!!) steps for her. However, after I recorded this video, he didn't want to perform anymore. He'd had enough - of course, the camera was out! She would stand him against the wall and he would gain his balance. Then, when he felt confident, he would take one, two, three or more steps forward before plunging down into her arms.

My Big BOY!!!

Sunday, August 2, 2009

One of Landon's Favorite Activities

Here is a video of Landon throwing a ball (sorry for the poor quality - low light). He LOVES to throw the ball back and forth. In case you were wondering why the sofa cushions are on the floor - it was an effort to give him different obstacles to climb over. I was hoping to get video of him sitting on the edge of the cushion, standing himself up, then taking two, three, maybe four or more steps without holding onto anything. That's what he did for us yesterday! No such luck today...

Thursday, July 30, 2009

The Eye Surgeries (and more) Updates


It just occured to me that it has been six months since Landon had the surgery to remove the cataract in his right eye and have the implant put in. I don't think I'm ever going to get over how fast time passes by.

We had a follow-up appointment last week. All of the follow-ups have been going well. His eye healed just fine; at each appointment the amount of time to patch his left eye was decreased; and so far, the cataract in the left eye continues to remain unobtrusive.

This appointment was no different. The opthamologist was VERY impressed with how his vision has recovered. If you remember, the cataract completely obstructed his vision. I think light was getting in, but that was about all. And I know for sure that he had the cataract from about July 2008 (I was able to confidently identify it in pictures back that far), until his surgery on January 28, 2009.

Because his vision has recovered so well, the doc believes that he wasn't born with the cataract, or, at least that it wasn't completely obstructing his vision from birth. When his left eye is patched, he does the same things as when it isn't (at least until he figures out how to pull the patch off!). The doc estimates that he has good vision in both eyes and doesn't need glasses for the time being. Initially, we thought he would be in glasses shortly after the surgery, but that doesn't seem to be the case.

I am glad for that.

It was tough when McKayla got her first pair of glasses at 10 months of age. Landon will fling anything off his head that you put on it...hats, I can only imagine what would happen with the glasses.

And little Landon wasn't the only one who had eye surgery in January. The week prior to his, McKayla had surgery to correct the strabismus (aka eye alignment).

She recovered very quickly, with little, if no, discomfort. She still requires glasses as she is still farsighted, plus, the glasses still help correct the eye alignment. I do notice that her eyes aren't pointing in the same direction without her glasses, but the doc isn't concerned as long as it is corrected with glasses. I'm not sure if more surgeries are in her future or not. I do know that she is one clumsy little girl without her glasses.

I think it has only been a few months since we got her new glasses, but I'm ready to chuck these and get a new pair. The frames are much thinner than the ones she had previously so they bend much easier. Once bent, the lenses pop out. It is pretty much a daily aggravation.

Still, I breathe a sigh of relief knowing that time of our lives is behind us now.

From November when we first found out about the cataract; to Landon getting RSV which turned into and spending two weeks in the hospital only to come home on oxygen in order to keep his O2 saturation at an acceptible level; to keeping him healthy enough to have the surgery, to now - vision restored, lungs fully recovered no longer require oxygen. Phew.

And, I'm tremendously grateful that was the worst we had to contend with.

Overall, I believe that we have been very lucky health-wise considering the havoc an extra chromosome can wreak on a body. Landon only had three small holes in his heart when he was born, and at last check, two had closed. I think his breathing problems and low O2 sats were contributed to the smaller airways common to little ones with Down syndrome, as well as atelecstasis caused by the ravaging RSV.

Now that Landon has one-on-one attention during the day, his development has really taken off, both physically and cognitively. He is learning signs so quickly and amazes us each day with something new he has picked up or figured out for himself.

I just about explode with excitement and pride. Have I said lately how much I love this little guy?

Wednesday, July 29, 2009

Wordless Wednesday

Okay, I'm jumping on the Wordless Wednesday bandwagon. Enjoy!

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Monday, July 27, 2009

Big sister, big helper

Here's the big sister, helping Landon walk. This was not long after he bit her really hard on her arm. She is quite forgiving, but definitely not forgetful. No matter how many times he has bit her (as much as we try to prevent it, too!) she still loves to do things for him and spend time with her. I just love these two. More than words could ever express.

Saturday, July 25, 2009

The 4th of July and sibling love

Okay, it's a little beyond the 4th of July, but hey, better late than never. Right? Besides, these pictures were too cute not to post. 4th of July we were invited by friends to Dogwood Dell to play and watch fireworks. Usually, a band plays, there are food vendors galore and a great display of fireworks accompanied by the loud bangs of a canon. This year was no different.

Here are the kids donning their festive attire:

McKayla is wearing Mommy's sunglasses and Grandpa Bob's hat, that actually matches her dress almost perfectly.

Here they sit ready to go, in their new ride. This has been one of the best toys we could have ever bought for the kids. The seat backs fold down in case we need to lay one of the two down, there is a little extra storage compartment on the back for bags, toys, etc, there are cup holders for the kids' drinks and the canopy is removable. They both love going for rides. McKayla likes to pull Landon, and Elmo, and her babies.

Here, McKayla is hugging my friends' daughter. This picture was just too cute.
McKayla LOVES babies and younger children. She is drawn to them like a magnet. I think it is because she enjoys being the big sister. She loves to look after Landon, she is so very nurturing and sweet to him. She asks every day to hold him, though he doesn't always sit still, or he'll reach up and grab a chunk of her hair. She gets just as excited about his acheivements as we do. She'll say, "look Mommy! He has teeth!" or "Mommy, he's standing up!" She also watches out for him and lets us know when he is doing something he shouldn't be. She likes to feed him bottles and wants him to lay with her at night for story time. When he lays with her, she wants him to lay on her arm, so she can hold on to him. Sometimes it is so amazing to me to see the love that she, one so young, has for her brother. I was an only child, so this is all foreign to me. I hope the bond between them will forever remain this strong.

Some cute sister-brother moments:

Playing piano together

Hmmm...he looks like he is up to something...


Swinging on the hammock together this morning.

Landon, too, is very interested in his big sister and what she is doing. If she is within reach, he will move to be near her. He watches her intently, and I believe, she is the major motivating factor in how quickly Landon is progressing from learning to stand, learning to cruise and taking his first steps. He wants to run after her. He wants to go where she goes. And he is quickly learning how to do it.

Landon started standing himself up while we were on vacation, the first week of June. (That's part of the vacation I haven't gotten to yet.) After we got back from vacation, he was pulling up on things that were easy to reach, such as the sides of the crib or your hands. Here we are at the end of July and Landon has already taken a couple of steps, unassisted. Last week, he was fitted for shoe inserts to help with slight pronation. They are little more supportive than the Dr. Scholls you would buy at the drug store. We bought his first pair of walking shoes, and boy, did they seem HUGE on him. I was a little worried that the size and weight would slow him down a bit, but he seems even more daring in his attempts to push away from whatever he is holding on to, to balance before he plops down on his bottom. And he can balance for quite a bit of time.

Here is Landon right after putting on his new "kicks". He happened to be wearing his USA shirt that day.

McKayla, too, likes to help with this milestone for Landon. She likes to help him stand up and walk, though she's not quite as supportive as she thinks she is. Still, we never discourage her. Landon enjoys her attempts to help every bit as much as she does. And so, I'll leave you with some more cute pics from this morning's playtime outside:

McKayla, holding "brudder". This was one of those moments that he didn't want to be held.

Enjoying the pine needles. It is never the shiniest, most expensive toy that holds his interest.

My beautiful girl.

Playing in the house.