The Carpenter Chronicles

The T21 Traveling Afghan

2009-10-26T11:00:00.007-04:00

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.

Ballerina Girl

2009-10-16T23:00:00.001-04:00

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!

Moving Right Along

2009-10-13T16:28:00.003-04:00

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!

Walking on Sunshine

2009-10-08T23:53:00.005-04:00

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.

Happy Birthday - To Me!

2009-10-06T22:46:00.002-04:00

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.

Look at How We've Grown

2009-09-26T13:56:00.002-04:00

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.

the Buddy Walk

2009-09-20T07:39:00.004-04:00

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!

Wordless Wednesday

2009-08-19T20:38:00.001-04:00

Wordless Wednesday

2009-08-05T22:05:00.000-04:00

Step by Step

2009-08-04T21:27:00.003-04:00

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!!!

One of Landon's Favorite Activities

2009-08-02T16:57:00.003-04:00

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...

The Eye Surgeries (and more) Updates

2009-07-30T21:14:00.006-04:00

Wow.

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, sunglasses...so 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?

Wordless Wednesday

2009-07-29T20:39:00.000-04:00

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

Big sister, big helper

2009-07-27T19:55:00.001-04:00

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.

The 4th of July and sibling love

2009-07-25T21:51:00.008-04:00

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...

Gotcha!

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.

Look At Landon Go!

2009-07-11T09:02:00.003-04:00

I'm going to interupt the posting of vacation pictures to bring you a video of Landon's most recent accomplishment. My heart is just swelling with pride. Land began crawling, and I did promise a video, only I could never get the video to load. I may need to go through youtube or another site. In this video, Landon is showing two of his newest methods of transportation, the butt scoot and cruising along the couch. Landon is pulling up on anything he can and trying to walk along. He can push walking toys and loves nothing more than for you to hold his hands and help him walk. He still has to work on balance before he can't let go and walk completely unassisted, but he is well on his way!

Vacation - Part 2

2009-07-11T07:41:00.003-04:00

The next day we started out not knowing what we were going to do. But that is the great thing about vacation. It doesn't have to be planned out, you can do what you want, when you want and change your mind as often as you want. Oh, I wish everyday were vacation!

So as we drove down the main highway in Pigeon Forge, we saw something that just looked so cool. Elevated go cart tracks. Never seen anything like it before in my life, but I had to ride. And I knew McKayla would love it too!

Here are Dustin and McKayla getting ready to take off.

This is the big hill you come down, oh my, it was so much fun!

This is them cresting the top of the hill, McKayla smiled the entire way, for each ride. Dustin took her for a ride around the tracks and so did I. (You don't think I'd sit this out, do you?)

Here is an overall shot of the track. The track spirals upward to come down a big hill with a hump in the middle. We learned that this was not the only elevated go cart track in Pigeon Forge, so we gave all of them a test run. Everytime, too, that we would drive past one, McKayla would beg to go.

Next, after a couple of go cart rides, McKayla wanted to ride the train. She has been fascinated with them for a while and this was her first ride ever.

As you can see, she wasn't disappointed.

Landon seemed to enjoy himself, too, safely tucked in Dustin's arms.

Next, she wanted to fly the planes. I'm not sure she knew what to think, especially when it got off the ground. She mostly leaned over, watching the center of the ride and the other planes.

McKayla spotted the carousel and wanted a ride. You may recall from the previous post that she had her first ever carousel ride at the restaurant the previous night. Landon again, didn't care too much to ride on the horse by himself.

Next, McKayla rode a swinging boat...

And Landon passed out...

We went back to the hotel for the kids to take a nap. Since the kids were going to be down for a couple of hours, Dustin took off to one of the local golf courses. I think his golf clubs were the first thing he packed. When he got back, we went riding around and went to dinner at a buffet. That turned out to be a very big mistake. I'll explain in the next post...

Pigeon Forge Vacation 2009, Part 1

2009-06-30T21:47:00.003-04:00

Wow, is June over with already? It felt like it would never get here. Like I was never going to go on my much anticipated, 1st vacation in I don't know how long. And now, it has been almost a month since we went. Wow.

Upon a recommendation from a colleague, we set our sail for Pigeon Forge, Tennessee. I'd never heard of the place, at least that I could remember. But the more I talked to others about it, and researched it on the internet, the more it seemed like the perfect family vacation spot. It was. There was a lot to do, a lot to see, so much so that we have plenty to keep us busy should this be our vacation destination next year.

The first day, we decided to take the kids to the dinosaur museum, which contains life-sized replicas. McKayla loves books, and two of her favorites are, If the Dinosaurs Came Back and How Does a Dinosaur Eat Its Food? She did enjoy the museum, however I don't think she had any idea how big the dinosaurs really were. Boy am I glad that we don't live in the era of dinosaurs! Yikes! Too many teeth and claws! Here is McKayla with Dustin standing in front of T. Rex.

Here she is with Dustin touching the tail of an enormous crocodile. Again....I'm VERY thankful these animals no longer exist.

After the dinosaur museum we went to the Rainforest Adventure Zoo. Right as we got there, a tour bus arrived. We were told that we could join the tour bus for a demonstration that is only done for large groups. The show was really great. The zookeeper had many animals that he talked about and brought several out for folks to pet. McKayla was brave and petted a Moluccan Cockatoo, an aligator (which she said was "cute", as a matter of fact, all baby animals whether they had fur or scales she would say, "awww they're cute!"), a hedgehog and a tarantula. Yep, you read right, she held the tarantula! Here she is pointing at a turtle

Landon, too, enjoyed looking at the animals that were on stroller level.

McKayla got a big kick out of the snake sleeping in the pot.

McKayla showed Dustin where the bearded dragon was.

For dinner that evening we went to a place called the Flying Horse. Inside, they had a large carousel and each child got a ticket to ride with their meal. This was the first time ever either kid had been on a carousel. McKayla loved it.

Landon, well, he was a little skeptical. First, Dustin sat him on the horse by himself. You can see he quickly turned to Dustin to pick him up.

Dustin hopped on back, hoping this would settle Landon down a little.

Landon was finally okay with everything when he could ride facing Dustin.

Well, that was our first full day in Pigeon Forge. I'll post more, but I need to go to bed right now.

Open At Your Own Risk

2009-06-11T22:05:00.000-04:00

I love this little outfit!

Look What I Can Do!

2009-06-11T21:52:00.004-04:00

Vacation proved to be a much needed rejuvenation for all of us, and it seemed to spark Landon's development. While on vacation, he began consistently sitting himself up from laying down (the proper way, too! Unlike how he goes from sitting to laying - folding himself in half in kicking his legs out from underneath himself). He also began pulling himself up. Look at what he did when I put him in his crib!

I'll post a video of Landon's new, and quick, version of crawling soon.

My Grown Up Girl

2009-06-11T21:43:00.004-04:00

Here is McKayla, dressed and ready to go to preschool. This picture doesn't accurately convey just how grown up she looks to me now. My baby isn't a baby anymore...

She still loves being a big sister, and loves the opportunity to hold Landon and play with him. Even though he bites her and pulls her hair. She is a great big sister.

Extra Chromosome Provides the Impetus for a Mom's Successful Company

2009-06-08T13:23:00.003-04:00

I just LOVE posting postive articles and news about folks with Down syndrome and their families. Here is one such article:

Click here to read about an woman who, with her daughter in mind, has helped organizations and businesses enhance their services to folks with disabilites. She also employs many folks with disabilities as well.

I promise some updates on my own kids are coming soon.

Lots 'O Photos

2009-05-01T21:36:00.002-04:00

The evening proved to be a nice one, not at all what the weatherman predicted. McKayla begs everyday to go outside and would probably do so in torrential downpours or arctic weather if we let her. So after dinner, we ventured out, me with camera in hand, to enjoy the splendor and capture the beauty. Sorry for the multitude of pictures. I just couldn't narrow down the ones I wanted to post. They were all just too cute!

An Update On The Cataract

2009-04-28T15:03:00.001-04:00

We are now 3 months out from Landon's cataract removal and lens implant surgery. We visited the ophthamologist last week for a check up. She was very pleased and very impressed with the progress his eye has made. Shortly before surgery, we all noticed that his right eye, the one that contained the cataract, wasn't always tracking with the other eye. Since the surgery, we have had to patch his left eye to get the right one working again. The doc said that his eyes were now moving together as they should.

According to the doc, she believes the cataract wasn't present from birth for him to have recovered as well and as quickly as he has. She explained that if he had never been able to see from that eye, we would have had to work much longer and harder to restore his vision. She was very excited and relieved at his progress.

Landon still has a cataract in his left eye, however at this point it is not obstructing his vision. The doc said as long as she can see past it, so can he. We'll have to keep an eye on it (no pun intended!) and may need to take action if it becomes problematic later.

My Favorite Time Of Year

2009-04-24T23:35:00.000-04:00

Spring has arrived and so has the color in our yard. The trees are filling out and the landscape is transforming. I love walking outside each day and seeing a new blossom or another plant returning from its dormant winter state. I get absolutely no credit for all of the beautiful flowers you see in our yard. The kudos lie on the creativity and hardworking shoulders of my mom and dad. They designed and nurtured this beautiful oasis. I'm just trying to keep up.

The Army Crawl

2009-04-24T22:06:00.003-04:00

Landon has done it! He has taken his first movements forward! He does a very exaggerated army crawl, but look at him go!

Speech/Feeding Therapy

2009-04-23T20:57:00.002-04:00

I mentioned in a previous post that Landon has been making great strides in his development lately. The most impressive and exciting, at least to me, is that he is now feeding himself and eating "normal" foods. Prior to Easter Sunday, Landon wouldn't really eat anything other than stage 2 baby foods. We would thicken them with cereal, but if there was any texture, such as chunks, hunks or lumps, he would gag, choke and spit the food right back out. We offered things such as crackers, cheetos, puffs - anything that Landon could pick up - however he wasn't interested in eating them. Just playing with them by banging them on the tray or together. And, he didn't care to drink from anything but a bottle.

Because my 14 month old was still relying mostly on bottles of formula for nutrition and was having difficulty with any texture beyond a stage 2, I requested that he receive the services of a speech therapist. A speech therapist, you ask? For those not well versed in speech and language pathology, a speech therapist, ideally, works on all aspects of speech - to include oral motor development.

I think one of the most interesting topics that I have learned about since Landon's birth has been oral motor development. It is absolutely unbelievable all that goes into speech and the mechanics of talking. You and I take it for granted, but think about those times that you have been to the dentist, your mouth numb. It wasn't quite so easy to articulate then, was it? Well that is what Landon has to fight against, as well as other children with Down syndrome. Low muscle tone strikes again.

I attended a seminar on oral motor development last summer. It was presented over 2 Saturdays, 7 hours each day. It was probably the most valuable information that I've learned so far. And it wasn't just the information presented in the seminar. The most valuable wisdom I gained that day came from parents of older children with Down syndrome. Though their children were verbal and had the ability to understand others, their ability to be understood by others was impaired. They couldn't clearly articulate their words.

Think about your child at 2. At that age, they are verbal, but many words aren't clear. Most of the time, you as the parent understand what they are saying, however you find yourself "interpreting" for your child with other folks. The parents at this seminar found themselves still "interpreting" though their child was 12 or 24.

There is debate within the medical community, as I have read, to whether folks with Down syndrome have a large tongue. Some say, it is just the low tone that causes the tongue "thrust", the image of how you may picture a person with Down syndrome, mouth open, tongue hanging out. The tongue, just like the lips and the jaw, contain muscle that can be conditioned and strengthened. But, you can't really lift weights to tone up these muscles (however there are exercises that can be done, silly as they may look to do them!).

One thing I learned at this seminar is that the earlier you begin to condition the muscles, then it is that much less you have to work at it later. Which brings me back to speech therapy for Landon's feeding issues. Landon just eating stage 2 foods does not exercise his jaw, tongue or lips. He needs chunks in his mouth so that his tongue will move side to side, push food forward and backward. He needs to start drinking from a straw to work on his lips. He needs to chew food to strengthen his jaw. All of this eating is the foundation for speech later. Crazy, huh?

The Friday before Easter Sunday was Landon's first feeding therapy appointment. No, I don't think that she worked any special magic that day. But, I'm not sure what made him pick up the cheese puff I gave him two days later, take a bite, chew on it and swallow without gagging. In case you were wondering what took place during that session - I brought various foods with me and fed Landon. The therapist observed, offering suggestions on how to slowly incorporate more texture. Where I would set a cracker on the table and wait to see what Landon would do with it, she said crumble it up in his food. We tried that. As long as it was a pretty fine powder he was fine. If I tried to sneak in a larger chunk, he would gag and spit the food out. He would also vehemently shake his head no at me.

So over the next week, with wonderful Mary following these recommendations during the day, Landon became able to tolerate more texture. By the following Friday, our next session with the therapist, Landon shocked me by eating fork mashed green beans. Granted, they had to be mixed in with baby food, but he ate them! And guess what he did last night?! He ate the fork mashed green beans without mixing them. He still continues to pick up any kind of food we put down on his tray and try to eat it. Sometimes, the food works its way out of his mouth, but sometimes he swallows. And what a triumph for him to swallow and not gag. Sheer elation best describes how I feel each time I see him eat something I know he couldn't before.

I know Landon will walk. I know he'll reach his other milestones. But when I think about his future, and him being able to become a self-supporting, happy and independent adult, his ability to clearly communicate with others will be imperative. To be understood will help boost his esteem and confidence and open many more doors of opportunity. And that is why feeding therapy is so important to me, but especially Landon.

Cute Little Things The 3 Year Old Says...

2009-04-22T20:57:00.002-04:00

McKayla: "Mommy!! Come here!"

Me: "Yes, baby?"

McKayla: (as I walk around the corner) "Look at your son!"

*************************************

Landon: "dadada DA DA da da da DA"

Me: "say MOMMY!"

McKayla: "say Kayla!"

Me: "say Mommy"

McKayla: "Noooo, he needs to say Kayla first!"

*************************************

Along Came Mary...

2009-04-21T15:59:00.007-04:00

Landon, up until 6 weeks ago, was in daycare. Though I believed they cared for him to the best of their ability, I don’t believe they had the time or opportunity to really provide one-on-one time with him and work on developmental activities to the degree that he needs it. And when we brought him home in the evening, the few hours we had at night were not enough, when we could and when we would remember to do activities consistently enough to be effective.

Not long after Landon was hospitalized back in December, I learned about the EDCD (Elderly and Disabled Consumer Directed) Waiver. What it does is provide families of a disabled or elderly family member the ability to provide the care needed for the family member who would otherwise be institutionalized or put into a nursing home.

NO. Landon will NEVER be institutionalized. It breaks my heart to know that families do still make that choice. And that Virginia is one of the few states in the U.S. that still has institutions. Two of them.

My initial intention for the EDCD waiver was to hire a respite care provider to work with Landon maybe 2 or 3 evenings a week and some weekends. I found out later that he qualified for personal care – someone to take care of him in our home while we worked during the day.

You might have felt the ground shaking that day from my jaw dropping.

I had two strong, but horribly conflicting emotions – elation from what this opportunity meant for Landon and sheer terror that someone would be taking care of my child in my home alone, without supervision. I have worked in the criminal justice system for 10 years now. I know what people are capable of. I’ve heard the horror stories. I’ve seen the impact. Dustin and I had to make a decision, and we didn’t have much time in which to do it.

We went through a home health nurse program and Mary, a certified nursing assistant came into our home to take care of Landon. I find my expressive language skills failing me now to adequately explain what a positive experience this has been for Landon.

Landon’s development has shown so much improvement. Mary is present for Landon’s meetings with the infant educator and speech therapist and follows the instructions, activities and exercises given by the infant educator. Finally, someone is able to work with Landon on a consistent basis – and it is showing.

Now that this has been brought to our attention, Mary, Dustin and I make it a priority to point things out to Landon and we have taken more of an active role in showing him who is who and what is what. And Mary is persistently working on teaching “Momma” since Landon babbles “dada” all day long. I love it!

At his 6 month review, we set goals that we hoped Landon would have accomplished by this review. They included: Landon will eat some finger foods without gagging or choking (not met); Landon will finger feed himself a meal or snack each day (not met); Landon will sit independently for 5 minutes and free his hands to play with a toy (met); Landon will rock on his hands and knees while his big sister talks to him for 1-2 minutes each day (not met); Landon will crawl on his hands and knees from the family room to the kitchen to get a family member’s attention several times a day (not met); Landon will play in tall kneeling at a surface such as the sofa with a toy each day for 2-3 minutes (not met); Landon will combine toys during daily play time (not met); Landon will use gestures such as “up” and waiving both spontaneously and on request (not met); Landon will say Momma and Daddy to call his parents each day (not met); Landon will use sign or word approximations for “eat”, “milk”, “more” and “all done” to let his parents and providers know what he wants throughout the day (not met).

As of April 1, Landon had not met any of these goals, except sitting independently for more than 5 minutes. Now, he is eating finger foods without gagging or choking, he will feed himself a meal or snack each day, he is just beginning to scoot forward on his belly by pushing with his legs (his preferred method of transportation right now is log rolling), and he is waving. I believe all of this progress is due to the one-on-one consistent work that Landon gets from having Mary in the home with him. I believe, too, that he will accomplish the above listed goals by the time we review his progress in July.

Like I said, I have no doubt that he will blossom.

IFSP Review

2009-04-21T15:58:00.005-04:00

On April 1st, Landon had his annual IFSP review. For those not familiar with the terminology, it stands for Individualized Family Service Plan. Any child that receives services through the Infant and Toddler program (for ages birth to three) will have an IFSP. The purpose is to determine which services are needed for the child and then to evaluate the effectiveness of those services.

So, how did Landon fare? His skill level was evaluated in 7 areas of development: cognitive, expressive communication, receptive communication, gross motor, fine motor, social/emotional and adaptive. Generally, Landon fell into the 8-9 month range, with some noted exceptions. His fine motor skills were in the 10-11 month range and his receptive communication was in the 5-6 month range. It was explained that it is not common for children to have a lower receptive language skill than expressive.

Receptive language is what you understand when someone communicates something to you. If I waive to you, receptively, you know that I’m saying hello. If I shout, “No!” you know that I don’t want you to do something.

Expressive language is, in turn, what I listed in my example as my way of communicating. As we get older, we learn more sophisticated ways of communicating, and receptively, understanding.

In order to be able to express language, you have to understand it. That is why it is unusual to find that Landon’s receptive language skills are lower than his expressive. The infant educator gave us the specific example that Landon is not consistently responding to key words such as "Daddy" or "ball" or following simple directions. One reason, she thought, could be a hearing problem.

I took Landon in for a follow-up hearing test. He hasn’t had one since he was about 4 or 5 months old. The result? Landon can hear. The audiologist did say that the tube in Landon’s left ear was not working for him and she’ll discuss with the ENT on how to address that.

My theory on why Landon’s receptive language is lower than is expressive, is that we haven’t really worked with him on following directions, or really expressed to him who “Daddy” is or what a “ball” is. Actually, we haven’t worked on many developmental activities consistently up to this point, shamed as I am to admit it.

When I look back and think, "why haven't we done these things?" I have to admit that my focus with Landon has been completely different then it was with McKayla. When she was a baby, I followed What to Expect the First Year to a T. I kept up with each month of development and followed suggestions on how to help McKayla accomplish "milestones." I read parenting magazines and scoured babycenter.com for ideas. And many things, we didn't have to work on. McKayla just picked it up, as most children tend to do.

With Landon, I find myself researching and learning about Down syndrome. Instead of my focus being on just reading to your child, when to wean your child from a bottle, to what foods are safe for this age, instead, I'm reading about Transient Myeloproliferative Disorder and leukemia, hypotonia, hypothyroidism, cataracts and eye health, oral motor development. I also have to remind myself that it is going to take more work, determination and time for Landon to reach "milestones". That they don't come as easy for him as they did McKayla.

Actually, I often feel overwhelmed with all that I need to keep "in mind" for him. Remembering to schedule the appointments for the well baby checks, the hematologist, the ophthamologist, the pulmonologist, the ENT, the cardiologist, the infant educator and the speech therapist (I feel like I'm forgetting an ...ologist in this list). And when I schedule, making sure that Dustin or I can take him without missing too much time from work. And trying to remember the information and instructions from each appointment. And following through with the recommendations.

Though I constantly feel tired and overwhelmed, one thing remains true. I love the source of my worry with all my heart has to give. I don't question why I was given this beautiful gift. I also don't feel that I'm different from any other parent that strives to pave a full and rewarding road for their child. We may have to work harder, but it will pay off in the end. For I see us as not just weekend gardeners, but landscapers, laying out a foundation that will eventually blossom into a beautiful garden. And I have no doubts that Landon will blossom.

To be continued…

Birthday photos...

2009-04-19T16:48:00.002-04:00

So I have some catching up to do. I've been meaning to post these pictures for a while, but keep saying, "I'll get to it later". Well....it is now 2 months later! No one has to tell me that time flies...

I combined McKayla and Landon's birthday parties. Much cheaper and easier and I'll take advantage of combining their parties for as long as I can!!

Here is their birthday cake. I didn't realize when I ordered it that they would give me another little cake entirely for the 1 year old.

McKayla was encouraging Landon to blow his candle out:

As you can see, Landon enjoyed the feel and texture of his little cake. I don't think any ended up in his mouth. His hair got a good taste, though!

We ended up opening most of the presents later at home. McKayla opted for playing over opening presents.

Fly Little Angel

2009-04-08T11:48:00.003-04:00

Today marks an occasion for two parents that none should have to endure. I’ve never met these parents, at least to my knowledge. I’ve never seen their daughter Evie’s precious face. But I grieve for them. For today, Evie will be removed from the machines that sustain her life.

Evie is 2 years old and she has Down syndrome. She developed leukemia and began chemotherapy treament a couple of months ago. Her family is involved in the local Down syndrome association, as we are. The association sent word when Evie began her treatment, asking all members to pray for Evie’s speedy recovery, as the treatment entailed lengthy stays at the hospital.

Unfortunately, Evie developed pneumonia. Every day, I anxiously awaited news on Evie’s status, hoping that she was getting better, but her health continued to decline. Yesterday, her mother sent the word to the group that there just wasn’t anything else the doctors could do for her.

I can’t begin to imagine the impossibly difficult decision that Evie’s family had to make. My heart aches for them. Please, take a moment today to say a prayer for Evie’s family and the painful journey they have ahead of them.

I’ve never met little Evie, but she has made an impact on me and so many others. The show of love, compassion and support for Evie’s family from our group has been breathtaking. It is amazing the unity and allegiance that one extra chromosome has created. We are all beside ourselves, though, wishing we had the magical answer that would miraculously make Evie better, or ease the pain of her parents. Today, I have nothing to offer, other than spreading the word and asking everyone to celebrate the life of this sweet little girl.

Farewell Evie, fly little angel.

The Gift of Memory

(author unknown)

One gift, above all others

God gives to us to treasure

One that knows no time, no place

And one gold cannot measure

The precious, poignant tender gift
Of Memory...that will keep
Our dear ones ever in our hearts
Although God gives them sleep

It brings back long remembered things
A song, a word, a smile
And the world's a better place...because
We had them for awhile

My Mind, Finally Put Into Words

2009-04-01T16:15:00.001-04:00

I am not a creative writer by any means. In fact, I'm jealous of my blogger friends that are able to tell their stories that make you feel the emotion of the moment, or portray their thoughts in a completely comprehensible way. I found someone who often speaks her mind, and mine as well, little does she know. Here, she answers the Million $ Question.

Spread the Word to End the Word

2009-03-31T14:10:00.003-04:00

I've never given much thought to my use of the word "retard." As a matter of fact, I would say it to myself quite often when I had done something I felt was stupid. Since Landon's birth I have become quite fond of message boards for parents of children with Down syndrome. One clear message that I have gotten from those boards is that the "r" word is hurtful, derogatory and disrespectful to those with intellectual disabilities. Though I never inteded to be mean and hurtful, because I said it to degrade myself and/or my actions, it is clear what I was implying with my word choice. That only stupid acts are done by "retards". And that completely undermines any accomplishments and the many abilities of those with intellectual disabilities.

So friends, I am asking you to join others to pledge to never use the "r" word. Click below to make your pledge, or, make it to yourself.

Click here to read a message from John C. McGinley, actor, and father of a child with Down syndrome.

My pledge: For my son Landon, so that others may accept and respect him for who he is and for his abilities and not judge him for his disabilities.

The Irish Festival

2009-03-29T11:00:00.004-04:00

For the first time ever, we went to the Irish Festival in Church Hill. It is an event that celebrates the Irish heritage and proceeds benefit many charities. They have two stages of music and entertainment, from Irish bands to Irish dancers, vendors selling Irish wares and even better - Irish food (fish and chips anyone?)! They also had a childrens' area set up with fun activities for the little ones. It turned out to be a nice day, at least compared to the crazy weather we've had lately!

McKayla really enjoyed watching the Irish dancers, though she wasn't a big fan of the bagpipes. She definitely doesn't take after me in that regard, I could listen to them all day! Landon really enjoyed seeing the sites and listening to the music. He was happy and talkative and intently watched everything going on around him.

While McKayla and Dustin went to play in the children's area, Landon and I sat at a picnic table where I was able to get some really cute shots of him.

We had a great time and I'm really looking forward to going next year!

Danza Down

2009-03-24T07:46:00.000-04:00

Check out this amazing dance troop!

Let's Celebrate World Down Syndrome Day!

2009-03-21T12:57:00.003-04:00

First, I apologize that I haven't posted in such a long time. It's been nuts and I've been tired. More is coming, though, I promise!

Second, if not for my little Landon, I don't know that today would have held as much significance for me. It is not something I am proud to admit, but I am proud that I have a 13 month old teacher that shows me all people have something positive to give to this world, no matter what their abilities may be.

Today is March 21st, and is World Down Syndrome Day. March 21st was selected because it represents the scientific terminology for Down syndrome - trisomy 21. Since Landon's birth, it has been my mission to educate myself, for his benefit, but also to educate others, for the benefit of all. Unfortunately, time and energy (or lack thereof) tend to hinder my progress. I just read a friend's blog and she has offered up wonderful suggestions for ways to celebrate World Down Syndrome Day. They are simple and easy, yet imperatively effective in raising awareness about the wonderful people whose bodies hold an extra chromosome. Please take a moment to visit Hannah's Shenanigans. Hannah's mom is a great writer and you'll enjoy reading and learning about Down syndrome as well as her amazing daughter Hannah.

So I implore all those who read this blog, whether it is today, tomorrow or next month - show your support and post a comment about what you did to celebrate this day and the folks this day was created for.

It's Snowing!

2009-03-02T13:28:00.006-05:00

I was a little skeptical when it was reported on the news that we were going to get snow. We haven't had a good snowfall in several years. But last night, we were pleasantly surprised to look outside and see the snow floating down, big flakes flying everywhere!

Our poor cherry tree, however, may not be too excited about it, since it has already begun to bloom.

McKayla was VERY excited to go play in the snow. I was a little disapointed that this isn't good snowman making snow. We did throw some snowballs at each other, but couldn't even come close to making a snowman. If you notice the plastic bags on her feet, well...we haven't even thought about buying snowboots...because it rarely snows! Her makeshift snowboots worked quite well, though. Her feet stayed dry!

Landon didn't get to participate in the outdoor festivities but that didn't cause any frowns. I got some really cute pictures of him. For your viewing pleasure:

Home Again

2009-02-21T09:18:00.001-05:00

Okay, they are home.

The doctor seemed to think that there was a mucus plug in his lungs that was

causing his fever and high heart rate.

Right before Kelly and Landon left for the ER, Landon started to cough and gaged on something

and then spit up a lot of stuff. I am sure that if it was a mucus plug that he got it up at that time.

Everything seems to be better now.

We will let you know if anything changes.

DAD

Another ER visit for Landon - written by Dad

2009-02-20T23:23:00.002-05:00

Well, here we go again. Kelly and Landon are off to the Emergency Room. After returning home from the DSAGR meeting, where both of the kids had a wonderful time, Landon's heart rate started to rise and his oxygen levels started to decrease.

After talking with the on-call doctor from the pediatricians office, who said that if after 1 hour after giving him motrin, his heart rate did not go back to normal, then we needed to take him to the Emergency room. So after an hour, off they went.

The doctor was afraid that he might have, what she called, the begining signs of the Flu. She said that after battling RSV as long and hard as he did, that fighting the flu could be harder than usual. But, Landon has been a fighter thus far, I do not think he will fight any less this time, of course he gets that from his father.

Well, when I find out more news I will let everyone know.

I hope everyone has a wonderful and peacefull evening.

DAD

Happy 1st Birthday Landon!

2009-02-15T11:04:00.000-05:00

Dear Landon,

It is unbelievable to me that you are now one - year - old. The year has flown by, and like your sister, you have brought so much wonder, amazement and tremendous joy to our family.

The moment I first saw you, my thought was, "WOW! You looked just like McKayla when she was a baby". Actually, it is amazing the similarities between you and her. The expression on your faces; the way you tap on things with your thumb ,hand spread wide open; how you both said “dada” early on; your laugh. A not quite so fun similarity is that both of you spent your first year with never-ending congestion that left us trying all we could to clear you up. And alas, you both missed out on your father’s eagle eye vision. But...that's about all of your father's attributes that you missed out on!

Landon, your dad and I cherish and adore who you are, as you are. You are our creation and you are absolutely perfect in every way, even down to that extra little chromosome. When we learned you had Down syndrome, we didn’t cry, we weren’t upset, we just thought, “okay, what does this mean for Landon?” We knew that your future was as uncertain, but as open as it was for McKayla. We knew that you would face struggles and triumphs just like her, though they may be different ones. We believe that you will accomplish all you choose to do as we know she will. And we’ll be there to do all we can, and help in any way possible, so that you both will aspire to your dreams.

You have already been a tremendous teacher, and have opened so many doors that your dad and I never knew existed. We definitely view the world in a different way and appreciate the intricacies of life we would have never previously though twice about. We have met many new friends who have provided wonderful insight and support and we have marveled at the acceptance and love bestowed upon you from our dear family, friends and acquaintances.

Landon, we feel so immensely blessed and honored that you are our son. Happy First Birthday, my beautiful baby boy.

Love,
Mommy & Daddy

This is mommy and you just 2 weeks before you were born.

This is you just hours after you were born. See how much you looked like McKayla!

You looked so tiny in your daddy's arms.

McKayla adored you from the moment she first met you. She loves to help take care of you.

This is you at 2 months old and one of the rare pictures of you and mommy.

Here you are at 3 months, offering one of your rare, yet beautiful smiles.

4 months old and I managed to capture that smile again!

5 months old - look at you standing with Daddy!

6 months old - here you are with silly Mommy wearing McKayla's balloon butterfly hat!

7 months old and you are working on pushing up!

8 months old and McKayla loves for you to sit with her so she can read to you.

9 months old and this was your first Thanksgiving!

10 months old for your first Christmas. You love playing (and eating) the tissue paper!

11 months old - you love bathtime in the sink. You make such a mess splashing!

And here is the 1 year old.

Happy 1st Birthday, baby! We love you!

Valentines Day - Two Years Ago

2009-02-14T11:46:00.004-05:00

For Valentines Day, 2007, Dustin gave me a huge balloon that played an excerpt of "How Sweet It Is To Be Loved By You". McKayla loved it! This was the first time we ever saw her dance, so I quickly pulled out the cameral to capture it on video. The loud bang you hear in the middle of the video is me hitting the balloon so it would play the song again.

Happy Valentines Day everyone!!

A New Discovery and A Beautiful Day

2009-02-08T08:01:00.006-05:00

Landon's eye has been recovering well from surgery, we've just had to put about a thousand drops in it. Of course, he hates it. We have also begun patching his good eye to get the other eye working again. That too, he hates. He is a completely different baby with his patch on. He becomes very grumpy, less interactive and kind of mopey. So we have to work hard to keep him stimulated. We know he can see. If you put an object in front of him, he will reach for it. We just don't know what or how well. We'll find out more on Monday.

Oh, and I won't be able to call him a baby this time next Sunday. (His first birthday!)

This is the typical face that Landon has with the patch on:

What you are about to see is our attempt to comply with Landon's therapy. The goal is to sit him on something low to the ground, where his feet can touch. We are working on him bending over to reach for things, which will strengthen his abdominal muscles. We need to strengthen the abdominal muscles in order to work up to walking. Presently, Landon is sitting up and rolling over, however he is not going from sitting up to laying down (and the reverse). Shame we can't get him to do pilates...

Well, he tried to reach for the multitude of toys, but gave up for something easier to get a hold of:

First one, then the other:

We are also trying to work on feeding. He is still on 5 bottles a day and eating only baby food. If we try to introduce anything with texture (such as rice, soft noodles, soft fruit, etc.) he ultimately gags or just plain spits it out. One thing to encourage feeding himself is to give him a spoon to hold while you feed him. This is his new favorite toy!

And look what we discovered while we were feeding him! His first tooth!!!

Yesterday was a beautiful day. We had a visit from Debby and Jordan and went outside to enjoy the weather and take lots of pictures of three adorable kids. However, three adorable kids rarely want to stand together, look forward and smile at the same time.

Landon really enjoyed his time outside. All new things for him to see. Actually, this is probably the first time he's been outside and has been able to enjoy it. He was too little when the weather was nice before.

He really liked playing with the grass! (Shame on mommy for removing his patch so he could enjoy the outdoors.)

(Note: I had to stand him up here. He will stand up and hold on for a long time, but he's not yet pulling himself up.)

An Unlikely Player

2009-02-06T14:18:00.003-05:00

Take a look at this video and see what happens when you take a chance on the unexpected...

http://today.msnbc.msn.com/id/26184891/vp/29030653#29030653

I found myself getting every bit as excited as his parents. I only wish he had been given this opportunity more than once.

The Birthday and The Haircut

2009-02-01T20:46:00.005-05:00

To make life easier, we will be combining McKayla and Landon's birthday parties, since their birthdays are only two weeks apart. But, now that McKayla is older, and has been telling everyone lately that her birthday is February 1st, we decided to do something special for her on her birthday.

We headed out and went to Toys R Us so McKayla could pick out a present for her birthday. After picking up a couple of things, she decided on blocks. She loves to build things, especially "castles". When we got home this evening, this is what she built:

Me: "McKayla, what are you building?"

McKayla: "A birdhouse."

Me: "It's beautiful!"

McKayla: "It's not beautiful, it's just a birdhouse."

Me: "Is it pretty?"

McKayla: "Yep."

Brother enjoyed playing with the blocks as well. Take note of his hair in this picture. I will explain later.

After Toys R Us, we went to Cici's Pizza. Much to my surprise, McKayla ate over half of my salad. She LOVES tomatoes and though we loaded her plate up (and she ate every single one) she decided to try my salad, something she has never cared for before. I think she liked it because it was covered in ranch dressing. She loves ranch dressing. She doesn't like ketchup, mustard or really any other type of sauce. She also doesn't like chocolate milk - how weird is that?

After lunch we ventured across town to a place that has a bunch of large blow up bouncy things. She had so much fun. It is truly amazing, too, that she was able to climb almost all of them - they could challenge a Navy Seal. Or maybe I'm just r-e-a-l-l-y out of shape.

After dinner this evening I finally decided that I was going to give Landon a haircut. His hair was beginning to get very unruly, not to mention that it gets in the way of taping his eye shield on. I've been debating on taking him somewhere for a professional to do it, or just taking Dustin's clippers to his head myself. Tonight, I got brave. There may be a few stray hairs that didn't make it through the clipper, but his haircut turned out quite cute, if I do say so myself!! The funny thing is now his hair looks really blond (though you can't tell in these pictures)!

Happy 3rd Birthday McKayla!!!!!

2009-01-31T22:27:00.000-05:00

Dear McKayla,

It has been three indescribable years since I first laid my anxiously anticipating eyes on your beautiful little face. Since then, the time with you has been filled with fun, wonder, excitement, worry and absolute joy. I am so proud and honored to be your mother, and to have taken part in your transformation from a completely dependent and helpless infant to a thriving little girl. This past year you have grown by leaps and bounds. You have gone from saying only a few words to speaking in complex sentences. You've learned so many things and you constantly amaze your daddy and I with what you know. Each day, you astound us with a new phrase or saying. Some of it may be you regurgitating what you have heard us say, but it is so cute to hear in your voice and to see it take shape in your personality.

I think, though, what we find most wonderful about you is how nurturing you are towards your brother. You love to give him hugs and kisses; you ask every day to hold him or want him to sit with you; you like to help feed him, both his bottles and and his solid food; if he cries or fusses, you will pat him on the head or back and say, "it's okay brudder." If you are in a different room, you will yell out, "it's okay brudder, I'll be right there." You are a great big sister.

You are such a beautiful little girl. Definitely on the outside, but especially on the inside. We love you immensely, baby girl. Happy Birthday!

A walk down memory lane....

McKayla in the making...

Your first day in the world

Look at all that red hair!

6 months old

9 months old

1 year old

15 months old

18 months old

This is before we cut that beautiful hair...

(and you were just over 2 years old)

This is you now!

The cataract surgery

2009-01-30T22:15:00.000-05:00

Landon's surgery this past Wednesday went very well. The cataract removal and insertion of the implant went just as the doctor wanted it to. When we took Landon home, we were instructed to leave his eye as it was - covered with a metal shield over gauze - until we went for his follow-up the next morning. Landon had the shield off by the time we got home. I had to re-tape the shield back on.

When McKayla first saw Landon after she got home, she was speechless. Then finally, she asked what was on his face. I explained that Landon had surgery on his eye, just as she had and he had to wear the patch to make his eye feel better. Later, she told me she didn't want to see the patch.

Landon checked out fine at his follow-up appointment the next morning and we were given our instructions for home care. One type of eye drop medication 2 times per day. Another 4 times per day. And finally, a third eye drop - every two hours. Oh boy.

After I got home, I laid Landon down on the changing table and glanced at his eye, which was uncovered at this point. What I saw made me panic. A bubble floating in his eye. I ran for the phone and dialed the number of the opthamologist -which I know by heart now. I explained what I saw and was put on hold, my heart pounding, imagining the worst - they were going to have to operate on his eye again. BUT, the receptionist came back on the line and said it was perfectly normal. The opthamologist actually inserted the air bubble herself and it should dissolve within a few days. I was so relieved to hear that it was okay that I didn't even think to ask what the purpose of the bubble was.

So far this weekend he has actually done pretty well with both the drops and the shield. We only put the shield on him when he sleeps and rides in the car (since we can't keep him from rubbing his eye then). Monday, we see the opthamologist again for what will be one of many more visits to come as we get the newly seeing eye healed and working again.

Eye alignment

2009-01-24T07:42:00.004-05:00

In an effort to just get things done, we also scheduled McKayla's eye surgery for this past week. Hers was Wednesday and was to correct the misalignment of her eyes. The opthamologist had to clip a muscle and reattach it for each eye.

We arrived at the surgical center about 20 minutes early (I know, how did the "late shift" manage that?) While sitting in the parking lot waiting for the front doors to open, a little crack in my windshield made a pop! and extended tentacles out across the lower part. Oh yay - something else to deal with.

After we got inside, it wasn't long before McKayla was called back. Now, we were instructed no to let her have anything to eat and drink after midnight, but she was hungry and kept asking for something to eat and drink. This made my tummy growl harder. It wasn't long before she was whisked back to where they would put her under anesthesia and perform the surgery. No sooner than I get outside, sit down and Dustin makes a quick run for coffee at the Starbucks next to the surgical center, the doctor came out and said McKayla did just fine. We went back and she was crying, most likely confused.

The rest of the day was nice. She and I spent the entire day in "mommy and daddy's" bed watching the Backyardigans. We also took a nap (which mommy really needed as well!). She was quite tickled to eat lunch in bed on the tray that Dustin built for me. Lunch consisted of her favorites - strawberries, grapes and "tatoes".

Landon joined McKayla for breakfast in bed the next morning.

Minus the surgery, I could use more days like this!

Eye measurement and ear tubes

2009-01-23T17:08:00.005-05:00

I'm sorry it has been a while and that I have not done a good job at keeping everyone up to date. Let's just say that things have been, hmm...crazy is a good way to put it...and I've been, as always, tired.

So, by reading previous posts, you were aware that Landon was scheduled to be at the hospital bright and early this past Monday morning. 6:00 a.m. to be precise. The Friday before was Landon's pre-op check-up with the pediatrician.

So, wouldn't you know, poor little Landon started throwing everything up Friday morning. We mentioned it to the pediatrician, but he didn't seem concerned at that point, since the upchucking came on the heels of a coughing spell. Landon has remained congested, with periods of improvement, since he was 3 weeks old. Every now and then, he'll actually cough and get the mess up. But Friday, he would cough, gag, choke and puke.

This continued on Saturday. We knew the pediatrician's office closed at noon, and had no clue what would impact it would have on surgery if it didn't improve over the weekend. We put a call into the pediatrician's office and they recommended that we take him to the ER so he could have blood work done, electrolytes checked and possibly get some IV fluids if need be.

After being in the ER for a while, an xray technician came in to take Landon for an xray. She was met with two confused faces, tilted to the side, with the question, "what the...?" written on our faces. She had the doctor come speak with us, and he explained that it is for pre-surgery purposes? Well, we wanted to make sure he was okay for surgery, so, sure, why not? The xray showed that Landon had pneumonia and they wanted to admit him to "monitor" him for low oxygen saturation. So our hearts begin to pound - is he going to be okay? Will they still be able to do surgery? Why has the pneumonia come back?

Let me interject here that ear tubes and eye measurement are not procedures to correct a life threatening illness. However, Landon cannot see out of his eye. His eye has begun to wander off and tracts with the other eye only part of the time. I'm terrified of him loosing use, even though the opthamologist has tried to reassure me that we are not there yet, but the surgery needs to happen sooner rather than later. The surgery cannot happen without the eye measurement, and the eye measurement has been postponed twice because of Landon being sick. All of this information is to help explain the intensity of my frustration with the doctor at the hospital that I'm about fill you in on.

Saturday evening, Landon was admitted and we got settled in to the hospital room. On Sunday, the doctor came in and explained that he was mostly concerned about Landon being on oxygen and pretty much figured since we were there, why not wean him off. I promptly explained that a pulmonologist was looking into the issue and planned to address it once we got past the surgeries, knowing that was the pressing matter. The doctor seemed annoyed that we had Landon put on the oxygen Saturday night as soon as he fell asleep. He didn't know how long Landon stayed down or how low he went. The doctor called the pulmonologist and told us that the pulmonologist was on board with his decision. The doctor instructed the nurse Sunday evening not to put Landon on oxygen unless his sats dropped and stayed below 92. He also said he couldn't give his blessing for the surgery until he had figured out the pneumonia and oxygen saturation issue. Another xray would be done Monday (yes, the day of surgery) to see the status of the pneumonia.

Now, something that has made my blood boil since Landon's hospitalization with RSV is the number of medical professionals who explain that Landon's baseline oxygen saturation may be lower than most and that may be okay for him and that kids with Down syndrome may have lower baselines...blah, blah, blah. Knowing what low oxygen saturation does to a person does not make it OKAY to me, especially since he has Down syndrome.

After Landon fell asleep, his sats hovered between 88 and 92. The nurse tried and tried to do everything she could to get his sats to go up and stay up - to no avail. She had to put him on oxygen. I really wanted to scream, "I TOLD YOU SO!" But, I bit my tongue. She was just following orders.

Monday morning I awoke to a knock on the door. In walks the doctor (a different one from Sunday) as well as Landon's opthamologist. I explained everything that had been going on. The doctor had a misunderstanding of the situation and our opthamologist explained Landon's history. I could have kissed her. If she hadn't come in and interjected, the surgery would have never taken place.

They said Landon did just fine under anesthesia and when they wheeled him back to the room, he was sitting up and looking around. The ENT said that he was able to get tubes in both ears, though the left one gave him a bit of trouble. He had to use the smallest tube manufactured and it was a bit tricky as Landon has teeny tiny ear drums. The ENT said that the fluid behind his eardrums was thick and gooey.

After the surgery Landon had the xray. The hospitalist on duty at that time said that she didn't think it was pneumonia, but most likely atelectasis, or partial lung collapse. She knew we would be following up with the pulmonologist and that he had home oxygen and a pulse oximeter, so she recommended chest PT and sent us on our way.

I feel like it was a weekend wasted, but at least we got the result we were looking for on Monday - Landon's surgery happened. And, too, Landon is okay. The diarrhea continued for a couple of days, but now is gone and he is back to his playful, talkative little self.

Just a few pictures

2009-01-11T15:01:00.004-05:00

It was a nice day out, so we went out for a little bit. Landon really enjoyed it until the sun went behind the clouds and the temperature started dropping.

Yesterday was fun with hair - McKayla and Mommy with pigtails!

McKayla dancing with Landon.

McKayla trying to hold Landon up. "Oof, brudder's heavy!"

Last weekend when the weather was fairly nice out, McKayla and I went for a walk. One of her babies went with us. She is quite the nurturing little mommy!

Look at the big guy standing up! That nifty thing on his back is a little backpack that Dustin hand-sewed to keep the hose to the cannula in when Landon is awake. When we don't leave the cannula in and we have to try to put it on when he falls asleep, he gets mad, puts up a fight and nap time is over.

Next Friday begins the medical adventure for the next two weeks. Landon has his pre-op appointment and then Monday will be the eye measurement and ear tube surgery. We'll keep you posted on how everything goes!

Dreams in Reality

2009-01-07T13:00:00.002-05:00

When you have a couple of minutes, go to this link and watch this excellent video about adults with Down syndrome living in Sacramento, California.

Of Cases and Cows

2009-01-02T10:03:00.006-05:00

Yesterday, McKayla spent much of the day playing in her new "case", or cave for those of you who do not speak McKaylanese. I initially called it a fortress, so I don't know where she gets "case" from. Nonetheless, it was very fun for her. I'm not sure what it is about building a fortress out of random things with a blanket draped over, but I remeber staying with my Great Aunt Pattie as a kid and building one out of a card table over many weekend trips and summers.

For some reason, McKayla seems to like to bring every toy she owns into the "case". I hope this doesn't mean she will be a hoarder late in life. She even let Landon come in to play.

Later, McKayla went outside to play and Landon and I stayed in. It was the perfect opportunity for me to snap some pictures of him sitting up and the cute faces he makes:

"ahhhhhh"

"yeah!"

fishyface

look at those hands!

airplane!

maybe he's signing Daddy?

"yeah, again!"

airplane nosedive

So, last night, Dustin told McKayla that she is a silly girl. McKayla replied to Dustin that he is a silly boy. Dustin and I were so impressed that she made that distinction, so Dustin asked, "what is Mommy?" McKayla replied, "a boy." Dustin asked again, "what is Mommy?" McKayla replied, "a cow." What the...?!?! Dustin, of course, began laughing hysterically, while I began to think this is not the year to throw all resolutions out the window (since you never follow them anyway).

Enough Appointments Already!

2008-12-29T21:38:00.004-05:00

Well, today all appointments for Landon and McKayla's surgeries were scheduled. Yes, McKayla has to have surgery too. McKayla has strabismus wherein her right eye doesn't track with the left. As many of you may know, she has been in glasses since she was 10 months old to correct this and excessive farsightedness. Because her eye hasn't improved with the ever increasing strength of her glasses, the doc explained this was muscular issue which requires surgery to correct. Therefore, beginning Jan. 16, we will have 5 doctor's appointments and 3 surgeries to contend with - all within 2 weeks.

Landon's surgery will be done in 2 parts. First will be the eye measurement and ear tubes. Because the hospital does not stock the implants, the cataract removal and implant placement will take the following week. Each surgery requires a pre-op appointment with the pediatrician for medical clearance as well as follow ups the day after surgery (are you doing the math for the co-pays here?).

The bright side? These are all relatively minor surgeries and the kids can go back to daycare the following day provided they feel okay and, after the follow-up appointment, of course.

Last week, Landon saw a pulmonologist who cleared him for surgery, however until he is seen again in February (yet another appointment), Landon has to stay on oxygen while he sleeps. This means naps and nighttime. The doc said that Landon's O2 sat drops could be due to the lingering effects of the RSV, but the doc said we will investigate that issue further, after we get the cataract surgery taken care of.

So, hopefully this won't put too much of a damper on the celebration of McKayla's 3rd and Landon's 1st birthday (which will include - you guessed it - their well check ups with the doctor). Yep, you read correctly - McKayla will be three in 5 weeks; Landon will be one in 7 weeks. I can't believe it either.

Landon's 9 Month Portraits

2008-12-19T19:16:00.004-05:00

Okay, so I'm a month behind in posting them...it's not like I haven't been doing ANYthing...

Some Holiday Fun!

2008-12-14T23:55:00.002-05:00

Send your own ElfYourself eCards

Landon finally got his ' Get Out of Jail Free' card!!

2008-12-14T21:48:00.008-05:00

Okay, the hospital is probably much better than jail, but there are some noted similarities, especially for a contagious baby on a leash (aka oxygen tube and pulse oximeter). Landon was admitted to the hospital, as explained in a previous post for RSV which ended up turning into pneumonia. Here is Landon's cell within a cell, or the "birdcage" as I called it, that he resided in for 13 days:

Now, RSV, or RSVP as I kept wanting to call it, is VERY contagious. For that reason, everyone that came in had to wear a yellow gown and face mask so they would not get it and pass it on. The positive side to that is that we got the room to ourselves!

Rather than go into the lengthy sordid story, suffice it to say that Landon is doing just fine now. He, by all appearances, has recovered from the RSV and pneumonia, however, he still requires oxygen while he sleeps. So we were sent home with oxygen tanks and a portable pulse oximeter. We are quickly becoming our own medical supply company! You should have seen how large my eyes got when the home care nurse explained that oxygen tanks should be stored laying down because if they get knocked over, they can take off like a rocket (not likely to happen, but scary to think about nonetheless)!

Before checking out, Landon was seen by a pulmonologist who thinks that Landon may have sleep apnea. We will need to do a sleep study in the near future to confirm and find the best treatment plan. Sleep apnea is apparently very common in children with Down syndrome. The interesting thing is that Landon could have had this all along. Now, it may seem crazy to be thankful that my little dude got sick, however, had it not been for this hospitalization, we may never have known that his oxygen saturation was dropping when he slept. Not having enough O2 in your blood is not good for you. According to the doc, it affects IQ, memory, concentration, behavior, among many other things. I'm glad we know now, so it can be addressed.

For now, the cataract and ear tube surgery have been postponed until Landon has "completely" recovered from the RSV. I imagine it will take place sometime in January. I was getting worried that we were close to Landon loosing complete use of his eye since it sometimes doesn't track with the other eye. Fortunately, Landon's opthamologist stopped by and reassured me that we are nowhere near the threshold of complete loss, though she wants to get the surgery done as soon as possible.

And now, I'll leave you with some pictures...

This is when Landon had all three leashes on - IV, oxygen and pulse oximeter. It was not fun trying to hold him and not get tangled or pull and step on any of them! Take a look at his right hand, where the IV is. We dubbed this "the club" because they must have used a whole roll of tape and put a plastic "shield" to keep him from pulling the IV out (mind you this was his THIRD IV). That thing hurt when you got hit with it!

And here he is saying, "Yay! I'm finally home!"

Big sister McKayla was very glad for "Brudder" to be home, (but not enough to share her toys)...

And finally, the future Liberace...

Dear Santa,

2008-12-14T13:57:00.002-05:00

If you would please, I would like to you to thank the elf for me that asked you to send the kind and generous gift that we received in our mailbox last week. We are eternally grateful.

Love,
The Carpenters

Little Dude is in the Hospital

2008-12-03T22:36:00.001-05:00

Starting last Friday, Landon developed a fever, which over the course of the weekend, turned into RSV. Sunday night, though his fever had gone, Landon seemed to be struggling to breath. I did a breathing treatment and put him in a steamy bathroom, but those didn't seem to help. I called the on-call pediatrician who said to try the breathing treatment again and if I noticed no difference, then take him to the ER. Well at 11pm Sunday night we headed to the ER. Landon was tested for RSV and had a chest x-ray to check for pneumonia. The chest x-ray was negative, however he was positive for RSV and because his blood oxygen level was a little low, he was admitted.

Yesterday, he seemed to be struggling even more to breathe, despite the every-three-hour breathing treatments and oxygen mask. His fever would come and go and he would sometimes be happy and playful and sometimes sleepy and lethargic. The doctor ordered another chest x-ray which, this time, showed that pneumonia had set in.

Landon is now on an antibiotic, a steroid of some sort, the breathing treatments and oxygen. Today he seemed to feel better and, though sleepy, he was happy and playful. He also seemed to struggle less with his breathing. However, he hasn't been eating as well today, and, since the never-ending snot coming out of his nose was getting thicker, an IV was put in to make sure he was well hydrated.

Right now we don't know how much longer he will be in the hospital. Essentially, he has to be off the oxygen for 4 hours and maintain his blood oxygen level in order to be released. Unfortunately, this means he will not be having surgery to remove the cataract next week.

Flower Girl Dress Shopping

2008-12-03T22:14:00.004-05:00

McKayla has the proud honor of being the flower girl in my counsin Kristie's wedding next June. This past weekend, we went to the bridal shop to try on different dress styles to determine which would best suit her. It was quite amusing to watch her twirl, dance and prance in the fancy dresses! Here are some pictures of the dresses we tried on. (Just a note, none of these dresses are the ones she will wear, we just wanted to determine the size and style that looked best on her and the black dress ended up being our favorite. Pictures of her actual dress will come later.)

Photos by Debby

2008-11-28T21:30:00.002-05:00

Check out these really awesome photos that Debby took today. She is a very talented photographer and has just opened for business. Check out her website for some phenomenal examples!

The cataract

2008-11-28T08:19:00.005-05:00

Just about a month ago, we discovered that Landon has cataracts. In both eyes. The one in his right eye covers about 80% of the lens, completely obstructing his vision. The one in his left eye is miniscule and is not hindering his vision - but we have to keep a check on it.

Click here to see Wikipedia's definition of the lens and a diagram of the eye.

Because the cataract is obstructing his vision, the lens has to be removed. In order for him to be able to see, they will put an implant in his eye to replace the lens. If all this doesn't take place soon, Landon will lose use of that eye. Right now, the surgery is scheduled for the second week in December.

In addition to the cataract surgery, Landon will also have ear tubes put in. Now here is my question about this...the doctors have not been able to see the eardrum in his left ear...so how are they going to put the tube in? The doc said, "it can be tricky." Not quite reassuring and we know other that have had to try several times. The problem is that Landon has teeny tiny ear canals, which is a common trait of children with Down syndrom. Well, we'll see how it goes!

Back to the cataracts...I encourage those of you with infants, whether they have Down syndrome or not, to keep a check on the eyes. I think it is a routine screen for well visits, but, as in our situation, it can be missed. According to the doctor, if you live old enough, you'll eventually get a cataract, so they are just a part of life. The problem they present in children is that if vision is obstructed long enough in the eye, the brain begins to ignore the signals from that eye and it will become useless.

Here is the picture I took that made me think something wasn't right:

If you click on the picture you can see a larger image and notice the grayness of the right eye. Cloudiness of the eye can mean many things, and fortunately for Landon, the cataract is one of the least serious. Vision problems are more frequent in children with Down syndrome, however it is not exclusive so any child could be susceptible.

We'll let you know how everything goes after the surgery. At some point, Landon will also have to wear glasses, just like big sister McKayla!

Dear Santa,

2008-11-28T08:04:00.004-05:00

I have but one wish on my list this year. I know things are tight in this economy, but if you could see fit to bring me my one wish, I would just be so happy!

Love,

McKayla

P.S. Just in case you were wondering what to put in my stocking, I would love some Dora the Explorer decals to go on it!

My thanks giving

2008-11-27T06:35:00.006-05:00

When thinking about Thanksgiving and what I'm thankful for, a multitude of thoughts come to my head:

I thankful for my husband who is sweet, gentle and funny and for how great of a father he is. It is his devotion to me and the kids that makes my heart pound with love and joy.

I'm so grateful for the two beautiful babies I have been blessed with. McKayla constantly amazes me and makes me laugh. She has such a caring nature and it makes me soar when she wants to take care of "Brudder" by feeding him, holding him, covering him with a blanket or checking on him when he's fussy. It is amazing to me the level a compassion and caring that a 2 year old can possess, of course, two minutes later she'll be pulling the toy he was holding out of his hand!

I can't even begin to enumerate the ways that I'm thankful that I have Landon, and his extra little chromosome, in my life. I'm definitely grateful that he has been an easy baby to take care of! But, I'm also appreciative of everything that it means to have a child with "special needs". The education and reality that folks with disability are just people with abilities who care, love and feel just as every one else does. The new friends, a wonderful group of families linked by that extra chromosome, that have become a source of information, support and, well, fun! The fact that I have an infant educator to help show me how to enhance his development. But, most of all, I'm grateful for every little smile that lights up Landon's little face, that lights up mine.

My eyes well up with tears when I think of how truly thankful I am that my circle of family and friends has fully embraced Landon as he is, with no question, with no judgement. He is appreciated for who he is and not seen as different.

I don't think I'll ever be able to express how thankful I am for my parents and all they have done and still do for me, though I'm sure they know that I now realize their wisdom, being a parent myself.

I owe much gratitude to the rock in my life, Debby. I often feel that I don't reciprocate the level of boundless friendship as bestowed upon me, but she is there for me everyday, for everything.

I am also thankful for the wealth of friends that I have been blessed with. I'm truly fortunate for all of the wonderful people that are part of my life. I thank you all and wish you a happy, wonderful Thanksgiving!

Landon's Button

2008-11-26T22:37:00.004-05:00

So I had the kids in the tub tonight, and McKayla, as usual, likes to help clean brother. This consists of using the "bucket" as she calls it to pour water on him. Mom was in the bathroom with us and notice McKayla pouring the water on Landon's little boy parts. Mom asked her, "what are you pouring water on?" McKayla innocently proclaimed, "brother's button!"

The Ladybug, the Pea Pod, the Pit Crew and the Convicts

2008-10-31T22:08:00.002-04:00

Here are some pictures for your enjoyment. The are from the I mean Carpenter and Matson family Trick or Treating adventure.

2008 Buddy Walk

2008-10-12T21:30:00.000-04:00

We participated in our first ever Buddy Walk on October 11 of this year. The event takes place all over the country in an effort to raise awareness about Down syndrome. It was a beautiful day, set in the gorgeous landscape of the University of Richmond. The walk took place around the lake and many events were set up for both young and old. McKayla especially enjoyed the moon bounces and much to her delight, yes, her icon, Dora the Explorer was there! Landon, well, he was mostly oblivious to the goings-on.

I, on the other hand, was utterly excited all day to see so many families and their friends participating in this event. My only disappointment was that, because I volunteered to help with the silent auction, I didn't get to spend much time with, or take pictures of many of the folks that I have come to know from being a part of the Down Syndrome Association of Greater Richmond (DSAGR) and the playgroup. But, I did get a picture of all of the Buddy Captains with their families!I was also quite tickled to see many of the folks that I used to work with there in support of Neil Lent.

With so much negativity that fills the average person's mind about Down syndrome, it was uplifting to see a gathering of folks who recognize the beauty, ability and delight that an extra chromosome can be. I know my eyes have been opened to a world that I just would have been indifferent about and I'm thankful to my little dude for that.

I would like to thank each and every person that donated through Landon's firstgiving site. All of you helped to raise $530 for the DSAGR which contributed to the over $50,000 net for the entire event!!! A big, huge thank you to Rex, Joyce, Lora, Donna, Megan, Tammy, Kristie, Shannon, Pam, Mary, Nakisha, Cari, Mr. & Mrs. Sharpe, Krazy Kousin Kristie, Uncle Bob, Aunt Gail and Uncle Randy. Also, I want to say a big, huge thank you to Andrea, Aidan, Dave (Dad), Bob (Dad), Ms. Heather and Ms. Shannon for walking with us! I can't wait until next year!!