Nathan Daniel

Nathan Has A Gambling Problem Too....

2012-01-13T05:03:00.001-05:00

This video is too powerful not to share. Its message is clear and resonates deep inside a place I try to keep hidden because the pain is just too raw. It's hard to understand what it's like to have Ds or be the mother of a child with Ds ~ you simply can't understand and I don't expect you too. However, you can change your expectations, and that of others. You can be the person who lifts-up and inspires those who are constantly being demeaned and defeated by an ignorant society. Nathan is counting on you.

THE BIG 4 ~ Our week long celebration of Nathan

2012-01-12T10:49:00.004-05:00

On January 2nd, Nathan turned four years old, but the celebrations began on New Year's Eve and continued on for about a week! On the one hand, it seems like yesterday since Nathan was born, but on the other, we've been through so many changes in our life that it seems hard to believe that so much could happen in such a short period of time.

Like the Hebrew meaning of his name:

Nathan is truly a gift of God, so each year, we honor of our son and His precious gift to us.

On New Year's Eve, Nathan's Aunt Domenica and Aunt Charly honored him with his very first jello cake, which is also Daddy's favorite flavor! He even managed to blow out his own candle, which as most of you know is a major challenge for Nathan. We're still working on the technique for blowing bubbles, so he's definitely getting it!

On Nathan's actual birthday, we took him to explore the caves of Howes Caverns, which if I'm not mistaken, are prehistoric caverns about 150 feet below the earth's surface. Neither Danny or I, had been there since we were young, so it was a fun and new experience for us all.

Our math lesson for the day ~ we were in group 4 at the caverns. We got off exit 22 to get there (2+2=4). And, we took Nathan to 16 Handles for dessert that night after pizza (4x4 = 16) and if we purchase a specified number of sundaes, we'll receive $4 off our next visit. Just a little something we noticed along the way on his special day. :-)

This was the only stalagmite that any one's allowed to touch because the oils on your hands can damage their surface.

We were even treated to an underground boat ride, which I thought might be disastrous. For those of you have yet to visit the Caverns, at the end of your journey, you take a boat ride to the literal end of the public section of the caverns, where your guide, shows you how dark it actually is without the modern conveniences of lights. It was pitch black. There's no natural light in the caves, so your eyes never adjust. Creepy. She kept the lights off long enough to prove that point and I thought Nathan would have gotten upset, but he didn't. Thank God!

Do you see Nathan and Danny down there?

The next phase of the caves turned out to be Nathan's favorite part of the exploration ~ the very narrow and sharp s-turns. I'm not claustrophobic and it was a little unnerving. :-) Danny just let Nathan run, so he thought that was cool.

Good thing there are these areas that I'm not suppose to touch, so when I'm tired I can sit down! No oils on my butt! :-)

Given that Nathan's birthday was on a Monday, the day after a Holiday, we opted to plan a fun family night away the weekend after his official birthday, at the indoor water park at the Great Escape Lodge. Nathan's Grammie and Nonnie spent the day with him too.

We had signed Nathan up for sundaes with Spruce the Moose, but we waited so long in line to get our room, that he unfortunately missed the event. However, he was signed up for some other fun character visits, so we weren't concerned. Unfortunately, Nathan played a little hard and was too tired for them, so the Welcome Dance party and a quick visit with Scooby Doo were the only times he interacted with these silly friends.

I caught this picture while Nathan was in mid-dance.

He's got to keep all that hair dry! :-)

As most of you probably know, we are in the process of moving and have been for a very long time now. We should have moved twice by now, but have continually been delayed. To say this has been an inconvenience would be putting it lightly. We rescheduled our Christmas plans, our vacation plans, and Nathan's birthday plans. When we found out that we were yet delayed again, we put together a last minute family bowling party for him.

Look at his little bowling shoes!

Like his dad, Nathan loved bowling!! We're going to go more often, now that he's old enough to roll the ball and beginning to understand the cause and effect relationship of the game. Roll the ball ~ pins fall down.

Nathan's Sesame Street Cake

There were lots of candles on Nathan's cake, so he needed some help from his cousins!

I wasn't aware of the fact that Nathan was going to be given a bowling pin, but it made a nice personal keepsake. Everyone at the party left Nathan a little birthday message.

Nathan had a great time bowling and on all of his birthday adventures! Thank you to everyone for their birthday wishes, generosity, and for making yourself available on such short notice. Next year Nathan's going to be five ~ can you believe it?! We're already thinking about his big day, and if it's up to me, we'll be going back to visit Mickey.

Christmas is in the bag, or if your Nathan, it's in your pocket...

2012-01-03T20:59:00.002-05:00

Nathan's Christmas festivities began at school with ginger bread house decorating! The kids did such a great job ~ this is their delicious Christmas Village. The best part of this decorating event was that Daddy was Nathan's helper!

The teachers also took the time to make ornaments out of applesauce. Very creative!

Finally, Nathan's Christmas wreathe hung on our tree this season and has been saved for next year too. Thanks to the Violet Room staff for all their efforts.

Our family Christmas card this year was an ornament card of Nathan's school picture. I just love the ornament cards because you can add them to your tree year after year. We only sent them to immediate family because they're probably the only ones willing to place the card on their Christmas tree. :-) We didn't forget our other friends ~ we did something a little different for them this year, but that's in the next post.

Christmas Eve was another fun night and was capped off with a visit from Old St Nick!

Who's knocking at the door?

Holy Christmas! It's Ho Ho!! Run!!!

But, wait ~ he has presents. Ok, he's cool. I'll sit on his lap.

Thanks St. Nick and your awesome elf ~ you two are the best and we appreciate your spirit!!

Santa thought it would be fun for the kids to have blinking red noses just like Rudolph! How clever for our little reindeer. I really wasn't sure how Nathan would react to wearing this nose, but he loved it!

We had a very late night on Christmas Eve, so we thought Nathan would sleep in. Yeah, right! He was up at 6:00am, so the present unwrapping began! Santa wrapped all of Nathan's gifts in Elmo paper. Can you believe that? Those elves really know what Nathan likes and don't mind going the extra mileto see him smile.

Nathan loves is Llama llama Red Pajama book that his cousin gave him last Christmas, so we added another to his collection.

And, here it is ~ the most annoying toy of the season winner! lol. I think this would be a great toy for Grammy's house. I'll let you listen and decide. :-)

This was the most creative toy this season ~ it's a hide-and-seek elephant. We hide the elephant and Nathan uses a remote control to find it. Each time he presses the button, the elephant trumpets, which helps Nathan track it down. It's really cute and he loves finding it.

This next gift wins the surprise of the season award! Our music buff loves the guitar and the piano, so Grammy ordered him a real guitar! A black one. hahahaha

Nathan could care less that it was pink - he loved it, but Grammy didn't think it was so funny. She's returning it for the black one.
And, here it is. The toy of all toys ~ Rockin Elmo!!! Oh, I knew this was going to be the hit of the year! Elmo that sings and plays music. Priceless. Nathan also received a Grover microphone that sings some of Nathan's favorite songs together with Elmo. It's amazing how these toys all communicate with each other.

Another great gift idea and an even more creative solution to all that wrapping paper hanging around. Just put it in your pocket!!

Christmas was capped off with a dance party and reindeer rides!

Thank you to all those who generously gave of yourself to Nathan and our family. I couldn't begin to mention every thoughtful gift, but each and every one is greatly appreciated. From my Coach keychain with Nathan and Danny's pictures in it to Nathan's handmade backpack. For all the gift cards and Christmas wishes ~ thank you. We hope that your Christmas was a Holy and blessed day. xxoo

Tis The Season....

2011-12-20T15:41:00.005-05:00

...for giving back, for joyous celebrations, for lots of delicious cookies, for taking stock in our blessings, and for getting into the magic of the Christmas season, which includes lots of time with Ho Ho (as Nathan says).

Last weekend, we took Nathan to brunch with Santa and as much as Nathan thought Ho Ho was cool, he wanted no part of sitting on his lap, even if was giving him a present. He goes back and forth. I can't figure it out! :-)

Ho Ho gave Nathan an Elmo potty book that he absolutely loves! After brunch, we headed over to Santa Central, a.k.a., the mall, and had our official 2011 picture taken with the big man in the snazzy red suit. Nathan was happy to sit on his lap and take a few nice pictures.

Danny thought it would be fun to do a family photo ~ I guess we're never to old to ask Santa for a gift or two on Christmas! We believe....

Nathan and I also recently attended Disney on Ice. This was our first ice skating experience, so I wasn't sure how he'd like it. Well, he loved it! He sat in his chair the entire time and never moved, well, except for dancing and getting into the performances. We will definitely be attending future shows. I took a lot of pictures, no surprise there, but here are just a few.

This year's photo shoot was a little different than our traditional Christmas backdrop pictures. My sister wanted a cityscape picture and I thought the Capitol building would be perfect. I took lots of gorgeous pictures of my niece and a few of the two of them together. It was cold out, so we had to work fast. We were hoping for a little snow to add to the effect, but not this year. These are my favorites of the two of them together.

Tis the season for giving back. Nathan and I also worked the Make-A-Wish, Adopt an Angel booth, with two of my close friends, who are also Wish Granters for the Foundation. In just three hours, we we sold enough angels to raise almost $500! That is probably our record high. The angels are $3 for one or 6 for $15, so we sold a lot of angels! Thank you to all of those who came to visit us and help make the wishes of children with life threatening diseases come true!

Making wishes come true one angel at a time.

Finally, Nathan and I attended the annual Victorian Stroll in Troy. On top of it being a beautiful day, Nathan had the opportunity to make a Christmas tree ornament, a gingerbread house, see Santa, and meet Father Time.

The Habitat for Humanity students from RPI, sponsored the gingerbread house-making table. Fitting.

We hope you're enjoying your Christmas Season. Merry Christmas from the Terrys!

Bidding Farewell To Our Angels of Hope

2011-12-14T10:34:00.000-05:00

Nathan officially "aged out" of Early Intervention in August, and when we made the decision to send Nathan to Preschool, we had to say good-bye to Nathan's A-Team. It was one of the saddest days I've had in years and even after several months, writing this brings tears to my eyes.

For the first-time, I'm going to introduce them to you.

Miss Dale

This is Miss Dale, Nathan's Special Education teacher. Dale began working with Nathan when he was about 8-months old (I think) and she and Nathan had loads of fun learning how to play. It's hard to process sometimes, that Nathan had to be taught how to play, but he did and still does. Most children know instinctively how to play with toys, but Nathan needs more help in understand how things work and Dale made that happen. Dale would bring farm animals, dinosaurs, and loads of other fund toys. Dale has a sweet disposition and Nathan just loved her. When Nathan began toddler school, Dale would provide special education there, so he would have a familiar face and friend in the classroom. Plus, with Dale there, she was able to provide insight and guidance to Nathan's teachers, so they could support him and their efforts.

Dale recently came to visit Nathan at his new school and it took him a few minutes to remember her, but when he did all he wanted to do was hug her! He didn't want to let go. Broke my heart to see how much he missed her.

Miss Kathi

This is Miss Kathi, Nathan's Speech Therapist. Although, Nathan has had speech since he was 5-weeks old, Kathi didn't come to our family until Nathan was a little older, because we had to switch therapists. When you're trying to teach little ones language skills, you have to be over dramatic and that's what I'll remember about her sessions with Nathan ~ the fun and fiery exaggerations of words and play. Nathan loved it! Kathi was animated and so fun! Kathi used play as her primary mechanism of teaching Nathan language skills ~ both verbal and sign. She also was instrumental in helping Nathan with drinking, eating, and self-feeding skills. Kathi has a kind disposition, a caring heart, and always offered words of wisdom and inspiration. She still does.

Miss Kim

Miss Kim was Nathan's physical therapist and with him since he was 5-weeks old. Kim was a part of our family and saying good bye to her was unbelievably difficult. Kim can be summed up in one word ~ sweet. Nathan just loved Kim and when he did begin to verbalize, her name was the first he said. Like all of his therapists, Kim used play as a means of building Nathan's muscle strength. One of the things I'll remember about Kim's sessions was that she was like a big kid and really got into her work. I loved listening to them laugh and play ~ crawling through tunnels, jumping, stepping on fun blocks, bowling, throwing balls, and so much more. I'll also never forget that the toys and things Kim brought to each session probably weighed more than she did!

Today, Kim is expecting her third child and we wish her nothing but the best. She's an amazing therapist, person, and mother. We certainly miss her constant presence in our lives.

Miss Laurie

Miss Laurie was Nathan's Occupational Therapist and she began working with Nathan when he was about a year old. She worked on skills like coloring, cutting, eating, and all sorts of fine and gross motor skills. She would bring all sorts of fun stuff to play with too and she and Nathan made all sorts of fun projects. She also reinforced the goals of the other therapists while accomplishing her own objectives. They'd sing songs, ride on fun scooter toys, and swing around in make-shift hammocks. What I'll remember most about Laurie, is that she was as tough and no nonsense as she was upbeat and fun. When Nathan didn't want to do something because it was hard, she pushed him through it. I liked that. She knew he could do it or at least thought he should try. What I valued most about her approach was that she didn't see Nathan's disability as an excuse to not do something, but as an obstacle that could be overcome. Laurie and I are a lot alike, which doesn't surprise me because we also share a birthday. Happy Birthday Laurie!

I knew this day would come and we'd be forced to say good bye. I agonized for about two years over what I'd give them when this day would eventually come. I wanted to leave them with something that would remind them of Nathan and the love they gave him, the hope they gave us, and honored their dedication to all children facing such obstacles in their lives.

We bought each of them a Pandora bracelet with an Angel of Hope charm. We hope that each time they look at it, they'll be reminded of the "hope" that each life brings and of the "hope" that families such as ours desperately need. Each child with a disability has something to offer the world and it's our "hope" that the world recognizes it and embraces our children. Well, that's my hope anyway.

Kathi, Laurie, Dale, and Kim ~ We miss and love you. Thank you for being who you are and choosing to help children like Nathan, that face major obstacles and challenges everyday. Some people just know how to be mothers, others, like myself who have children with special needs, have a lot to learn. Thank you for helping me do everything in my power for Nathan at such a young age, and for your unconditional love and support. I am forever grateful and indebted to you. xxoo

A Macy's Thanksgiving Day To Remember

2011-12-04T21:23:00.002-05:00

As a child, it was tradition to watch the Macy's Thanksgiving Day parade in our house. Until Nathan was born, I never thought about driving to New York City to watch the parade live, but like most kids, we knew he would love watching those massive balloons, listening to the bands, and taking in all the other spectacular parade performers.

The primary obstacle to executing this idea has always been the people. This year, the parade officials anticipated an estimated 3.5 million people were going to line the streets of the parade route. That's more than New Year's Eve! Obstacle number two ~ Danny hates crowds. So, if we were going to attend this parade, I had better figure out how to get some bleacher seats. Yes, there are some sections along the route where people with tickets can sit and enjoy the parade away from the crowd.

Without getting into any detail, just days before the parade, I was notified that we indeed would have seats for the 85th, Macy's Thanksgiving Day Parade!! I seriously had tears in my eyes when I received the news. I knew Nathan would love watching the parade and so would I. What a dream come true.

The logistics of getting the tickets and getting there early were a little challenging, but where there's a will, there's a way! We spent the night at a friend's house in the City, and on very little sleep, headed to the parade at 6:00AM.

Nathan and Martha

It was a 30 minute drive in the morning, so we arrived really early for the parade, which was scheduled to begin around 9:00AM. We needed to park on the East side of the parade route, so we could leave without much fuss and we wanted to park on the street. If we had parked in a garage, it very well could have take an hour just to get our car out. We lucked out and were able to find parking two blocks from our seats!

We hung out in the car to stay warm for a while before venturing out.

The weather was nice considering it was the end of November, but we were bundled up anyway. Our seats were terrific - just steps from the parade; with an unobstructed view of the performers.

This is the start of the parade.

What I love most about this picture, is that you can actually see the floats as they're coming down the route. The pictures that follow, are a small selection of the collection I took.

He loved the balloons! They are enormous in person.

The cutest smile of the day!

Neil Diamond was on this float ~ taking pictures of the crowd!

look at how many people it takes to walk with these floats!

I love this picture.
I waited for the torch, that's carrying our service men and women, to be in front of these buildings.
They reminded me of the Twin Towers

The parade was amazing!! Having seats made all the difference. I would never go without them. There's far too many people to dodge and it's almost impossible to see everything unless you're in the front or standing on top of something. I did see people carrying buckets, so I assume that's what they were for.

We even made it home for Thanksgiving dinner! What a day!

The Polar Express

2011-11-22T20:26:00.001-05:00

~Tis the Season~

It's time to kick off our Christmas Season!

We had originally made plans to take Nathan on the Polar Express after Thanksgiving, but received an invitation to a family event that we didn't want to miss. Thankfully, the train station was gracious enough to reschedule our trip, but that meant going before the official Holiday Season.

The Polar Express is a train experience inspired by the book, and now movie, THE POLAR EXPRESS by Chris Van Allsburg. The train takes all its passengers on a two-hour round trip journey to the North Pole, where a special child is given the first gift of Christmas. The children wear their pj's and there's Christmas caroling, games, lots of Santa's elves, and the reading of the book on your way.

The below picture was taken at the Utica Train Station just before we boarded the Adirondack Scienic Railway, i.e. the Polar Express, to the North Pole. We bought Nathan an official train conductor cap for the ride and he's wearing his "Santa's Helper", Christmas jammies.

The train was festively decorated with lights and garland and they played Christmas music along the route. The only other draw back to going so early, was that very few houses were decorated for Christmas; it would have been fun to look at them with Nathan.

Nathan totally dug the elves! I don't know if it was because they were more his size or what, but the big guy in the red suit ~ forget it! He was terrified!

Don't let that cute little smile fool you. When Santa boarded our train, he sat right down with Nathan and he freaked out! He wanted no part of being on Santa's lap or even near him. The best we could do was a high five.

Just as Santa was leaving, we tried to get at least one picture. You would have thought he adored Santa looking at that smile. No way! :-) Santa even gave Nathan a little gift (a Christmas bell) and he threw it!

When we arrived back at the Station, we were greeted with hot chocolate and cookies. We had a nice time and will certainly do it again when Nathan's a little older. Next time, we'll head to the Saratoga station where they have triple-decker trains!

Halloween with the Monsters from the Street!

2011-11-08T06:28:00.000-05:00

Halloween was so fun this year!!! It was the first year Nathan was able to wear his costume to school, go trick-or-treating, and march in a Halloween parade with all his little friends!

As you might be able to tell, Nathan was Cookie Monster for Halloween. However, this wasn't the costume I originally bought him. That costume was Elmo, his bff, but he grew out of it by the time Halloween rolled around and I had to take it back. Thank God, I was able to find Cookie in his size the week before the big day at school!!

This picture is of Nathan and the owner of his school, The Cat in the Hat, I mean, Sheri. She is super sweet and is always genuinely warm with Nathan, as it evident by the expression on her face.

Nathan thought it was so cool to march around and collect goodies! He was even trying to say trick-or-treat. Look at that smile!

Nathan's teachers orchestrated an entire day of fun Halloween goodies, games, projects, and stories. Including making a pumpkin pinata'. Nathan was a little shy and not really into hitting the pumpkin. It may be time for some baseball toys. He didn't really know what to do and that's our fault for not subjecting him to the sport. Next summer.

We also attended our annual family Halloween party. This year, our party was at my Mimere's house. All the kids were super cute and in the hustle and bustle of life, it's nice to slow down and spend a little time with family. As always, the party was filled with fun, lots of Halloween goodies, and unique little touches.

I love this picture of Nathan and his cousin! It's definitely calendar quality.

INTRODUCING BIG BIRD & ELMO

Danny and I got into the spirit too!

My cousin took the time to put together a hay ride and campfire outside for us to enjoy. Thanks Mike!

The Crew!

Although Nathan was too tired to participate in all the crafts and pinata fun, my Aunt planned lots of fun Halloween activities for the kids. Thanks Aunt Kathy!!! Another fun Halloween season.

Autumn Leaves Are Falling Down, Falling Down, Falling Down....

2011-10-17T15:49:00.002-04:00

Our family has been trying to soak up every last ray of the Summer sun, while enjoy crisp cool Autumn days filled with leaf leaping, apple picking, and pumpkin patches.

Columbus Day weekend was gorgeous and we certainly took advantage of it! Nathan and I spent the weekend at camp and had a fun-packed weekend. We certainly have missed Daddy this summer, but he has been busy building our new house and it's looking amazing!!! Camp just hasn't been the same without him. Although, Nathan has been helping him as much as possible! :-)

We visited a local Pumpkin Patch in Saratoga Springs called Sunnyside Gardens. It's close to camp and Nathan's cousin Lily and his Aunt Niki joined us for some fun! The pictures that follow are a sampling of the displays they made from hay, a little paint, and a lot of creativity. It was very impressive.

Smurf Village

Puff the Magic Dragon

Wizard of Oz

Just over 3 feet!

this is just funny!

No day is complete without dancing!

These pictures are out of order, because we actually enjoyed lunch at an outdoor cafe' and then took the kids to the park before heading to the pumpkin patch. Ah, it's ok.

Duck watching

Nathan also enjoyed jumping in the leaves with his camp friends. It may be the first time Nathan has actually jumped in a pile of leaves. I wasn't sure if he would like it or not, but I couldn't get him out! He seriously loved it.

We also spent time picking apples with a few friends. Nathan loved picking apples and couldn't pick them fast enough. Problem was ~ every apple he picked ~ he bit! Just like when we went blueberry picking. We had a lesson on picking the apples and putting them in the bag. The pictures tell the whole story!

I love the light coming through the trees in this picture

Yep, this picture says it all! lol!

Thanks for stopping by!

Adirondack Balloon Festival ~ The Third Time Was A Charm!!

2011-09-28T14:37:00.002-04:00

After three years of trekking to the Adirondack Balloon festival, Nathan I are were finally able to watch them launch! As you'll see it was an amazing sight! Every time a balloon launched, people would applause and we'd wave bye-bye to the balloon as they sailed just over our heads!

This was actually the first balloon we saw upon entering the festival. It was taking passengers on a tethered ride just above the ground. I tried to take Nathan, but the flame and noises scared him, so we'll try it another time. Hopefully, not in another three years! lol.

This balloon was just pretty.

This is a big funny looking fish! It was gigantic.

How crazy is this guy? His gas tank was strapped to his back!

The Passino Family joined us at the festival! I love this picture.

Balloon Gazing!

My favorite picture of the day!!

Thanks for stopping by!

The Children's Hospital at Albany Medical Center: The Not-So-Typical Surgery

2011-09-13T22:29:00.003-04:00

Two days after Nathan enjoyed hanging with his favorites at Sesame Place, he underwent surgery for the removal of his tonsils and adenoids. He also had his ear tubes replaced. We understood this procedure to be routine for many children. We were told he'd be sore after, but once he came out of the anesthesia, we'd be able to take him home. Our instructions consisted of administering pain medicine, making sure he drank, and serve him cold/soft foods until he recuperated, which would take about a week. YEAH RIGHT!

Here are a few pictures taken prior to the procedure. Thankfully, Nathan's Aunt Kathy let us borrow the iPad because Elmo helped Nathan through the pre-op phase.

Elmo, Daddy, and Nathan on their way into the operating room.

After surgery, which went fine, Danny and I went into the recovery room just as Nathan was waking up. It was a really heartbreaking experience. He was so upset. There are no words to accurately describe watching your son in that state and unable to communicate with him. It was obvious he was groggy, hoarse, disoriented, and in lots of pain. It took a long time and some morphine before he calmed down, but then his oxygen levels began to fluctuating.

We were told that normal oxygen levels measure at a minimum of 92, and Nathan's levels were dropping into the low 80's. Doctors made the decision to give him oxygen and keep him overnight for observation.

It wasn't long before Nathan's next obstacle reared its ugly head. With his oxygen levels fluctuating and his pain becoming more apparent, Nathan began refusing to take medicine or drink anything orally. Trying to give Nathan his Tylenol with Codeine was like trying to put a square through a round hole ~ nearly impossible (unless the square is smaller than the circle).

Things reached a breaking point, when in the middle of the night, Nathan held his breath rather than swallow the medicine and his face turned dark red. The nurse had to tip him over and begin forcefully patting him on the back, so he'd spit the medicine out and breath. That was the final straw - we had to find another approach. Our saving grace was the IV Nathan had been given during surgery. His meds and fluids would now be administered intravenously, until such time that he could begin to take them orally and drink on his own. He also began to run a temperature, which was expected with this type of surgery, but just added to his list of complications.

Nathan was released a few days later after drinking a bit and eating some apple sauce. He really seemed to be on the mend. This was late Saturday afternoon.

We made the decision to discontinue the Tylenol with codeine because it tasted so terrible and he had such an adverse reaction to it. Instead, we opted for the every four hours of alternating regular Tylenol and Motrin.

Once we arrived home, giving Nathan his medicine proved to be yet again, a major challenge. It took two people to administer the medicine (one to hold his hands and head and another to squirt the dropper of yummy white grape Motrin into his mouth). He was completely uncooperative and the ritual became a traumatic experience for us all. Problem was ~ without medicine, he wouldn't eat or drink. From late Saturday afternoon until Monday morning, Nathan had one wet diaper (not counting his bath where he may or may not have gone pee). Dehydration was setting in. I knew it.

On Monday morning, I made the decision to bring Nathan back to the ER, but then Danny suggested taking him out to eat. He thought maybe a change of scenery would be enough of a distraction that he might actually eat and drink. So, off to the Cheesecake Factory we went and guess what? Nathan ate and drank more than he had since before the surgery (cheesecake, french fries, and Sprite with Cranberry juice)! YEAH!!! It worked! Daddy's a genius!!!

Unfortunately, it was short lived. By midweek, Nathan had begun to develop a thick mucus in his mouth. He had been having thick discharge from his nose, but we were repeatedly told this was all normal. The doctor just kept stressing the importance of Nathan getting enough fluids and that we should really push them. Yeah, sure. How do you "push" fluids on a three-year old child with Down syndrome that doesn't have the ability to understand what's happening to him? We didn't have the luxury of communicating the consequences of not drinking. We just had to do the best we could, hope for the best, and deal with the consequences.

When Nathan woke up from his nap Friday afternoon, I made the decision to immediately take him back to the hospital. The mucus in his mouth was so thick I was afraid he was going to choke from just breathing. This wasn't normal and I was beside myself with worry and furious with the nurses at his doctor's office who seemed to be complacent to what was happening with Nathan.

It was the right decision. Nathan was dehydrated and at first glance, they thought the mucus may have puss from an abscess that in his throat. Nathan had also lost five pounds since his surgery, which for a child who only weighs 30 pounds, is a lot of weight! It turned out that Nathan was only dehydrated (only - uhg), and after some much need fluids, the mucus disappeared. Thank God. Nathan was again admitted into the hospital for fluids, meds, and observation.

Three days after we arrived for our second stint at the Children's Hospital, Nathan seemed to be on the road to recovery. He wanted out of bed, he was happy, began eating and drinking, and overall seemed to be feeling better.

The Terry Family would like to thank all those that offered and showed support for our family during this very difficult time. Thank you for making food for our family, so I didn't have to worry about cooking and without, I probably wouldn't have eaten. Thank you to those who came to visit and my sister and mother-in-law that stayed with us some nights until Nathan and I both fell asleep. Thank you to all those who consistently checked in on us, prayed for Nathan and our family, and for those who brought/sent thoughtful gifts and cards.

We've closed the book on this chapter of Nathan's life. In hindsight, we would have gone through this again, but would have just more prepared. Nathan's tonsils were so large they were almost closing off his throat and his enlarged adenoids were causing him to stop breathing while he slept. The surgery wasn't an option.

Since his surgery, Nathan is sleeping better than he has in his entire life. He went from waking up at 5:00AM or 6:00AM after a restless night to sleeping soundly until 8:00AM or 9:00AM! I have to wake him up in the morning now! It's so weird and awesome all at once!

The Adventures of Nathan...Sesame Place (Take Two)

2011-08-28T20:32:00.002-04:00

Nathan loves everything Sesame Street, so it was a no-brainer to take him back to Sesame Place this year. Danny didn't have much time to be away on this trip, so there weren't any fun side trips, just lunch, dancing, and hanging out with Nathan's bff's!

Nathan is really loving Cookie Monster these days and if you ask him what Cookie Monster does, he puts his hand up to his mouth and makes the eating cookies sound that we all associate with this big blue guy!!

My favorite picture of the visit!

Last year, we scheduled a breakfast character experience, so this year it was all about lunch with Elmo and friends, which turned out to be a great decision. The major difference with the lunch experience, besides the food, was that the characters all sang and danced. There was even a Congo line at the end where all the characters and lunch goers got into the act - including Nathan!

Nathan was mesmerized by seeing all his favorite characters, we couldn't get him to eat! No way!

His face is beyond priceless!

That expression says it all!

Do you think Cookie thought Nathan was a chocolate chip? :-) He's giving him a kiss, but it looks like he's trying to eat him!

Here are a few video's from lunch. Super cute!

Nathan even got to dance with Elmo!

After lunch we were once again able to go backstage with the characters before the big street parade!

Hugs

Elmo was playing peek-a-boo with the Cookie balloon ~ it was pretty funny. He was standing all alone, so apparently he needed to entertain himself!

In full disclosure, we have no idea what character this is, but he's super colorful!

Hugs

and more hugs!

This years' parade was really cool (much better than last year) and Nathan sat on Daddy's shoulders and danced the entire time!

Thanks for stopping by!

Pickin Berries, Meeting Super-Heroes, Exploring a Castle, & Hanging With Some Cool Pirates!

2011-08-18T10:16:00.000-04:00

This summer has seriously flown by! Our family has been so busy, I feel like Nathan has gotten the short end of the summer adventure stick. Last year, we were traveling all over, but with selling our house (2 or 3 showings a week), building our new house, training for my triathlon, and therapy sessions (that just ended - I'll blog about that soon), we haven't been on as many adventures as I'd like.

In spite of our busy schedules, we have had a few fun Summer adventures and are scheduled for a few more before school begins.

First, Nathan and I went on our first blueberry and cherry picking adventure! We drove about an hour and a half, to an orchard that borders Vermont to pick some of the yummiest blueberries I've ever eaten! Nathan thought so too! I've frozen the blueberries, so we can enjoy some delicious muffins during the winter months. The cherries were ok, but I'm not sure I'd pick them again - they were a little tart for my liking. Here are a few pics and videos from that day.

Nathan is actually standing inside the cart to reach the cherries.

Nathan had a lot of fun picking, but really enjoyed eating the blueberries!

Beyond spending as many days as possible at camp, we've also spent a few days at the Great Escape where Nathan went on the swings and a roller coaster for the first time! Last week, we decided to venture out and took a trip to Six Flags New England. This park isn't unlike the Great Escape, except it has lots of super cool adult roller coasters, Super-heroes, better food choices, and an awesome water park! The kids really enjoyed the pint-sized lazy river and we'd love to go back before the season ends to spend an entire day in the water park.

Nathan was fascinated by Wonder Woman, scared of Batman, and indifferent with Robin ~ sounds about right! :-)

Last weekend, Nathan and I drove seven hours round-trip to Alexandria Bay in the Thousands Islands of New York, to attend the Captain Bill Johnson's Pirate Invasion!

The first order of business was to take a ferry to Boldt Castle and go exploring! We had purchased our tickets and were on our way to wait for our boat to arrive when Nathan decided to throw his shoe into the water!!! Oh, man! What was I going to do now? What any mom would do ~ lay down on the dock, bend over into the water and get that shoe! :-) I can't believe I didn't fall in. Thank goodness his shoes float! Stinker.

We explored the inside of the castle, but really enjoyed the grounds and watching all the boats. Every time Nathan saw a boat he said, "Da da!" He thought daddy was going to arrive on his own cigarette boat for lunch!

The castle was just beautiful and we enjoyed lunch on the grounds in the middle of the Bay.

We could have stayed a lot longer, but we had to get back for the pirate invasion ~ a reenactment of pirates sailing in and taking over the Bay. A battle ensues that includes cannons, gun fire, and sword fights, and concludes with the Mayor eventually handing over the keys to the Bay. It was fun and so many people were dressed up! I wish we had more time to enjoy the Island. It was so beautiful. We'll definitely go back again and stay for a few days.

Thanks for stopping by! We have a few more adventures on tap before summer ends, so stay tuned to the Adventures of Nathan. :-)

The Ultimate Anniversary Gift ~ Dedicated To A Little Star

2011-08-07T21:51:00.001-04:00

When it's time to leave the day behind and enjoy a little down time, Danny loves watching some very interesting television programs.  His new favorite show, NY Ink, just finished airing its first season on The Learning Channel (TLC). New York Ink is owned by famed tattoo artist Ami James, of Miami Ink, previously on TLC.   For those of you who have followed our blog, you know that Danny already has one tattoo of an angel with Nathan's name underneath it. Since his first ink, Danny has been itching to go back, which is why he loves watching these types of shows!

Now, I always thought that Danny would have wanted a tattoo from Ami James, but when I asked him who he thought was the best artist in the shop, he said Tommy Montoya ~ "the guy with all the tattoos on his head." Oh yeah, that guy! I still didn't know who he was.

Well, I knew our wedding anniversary was coming up and I thought it would be super cool to make an appointment for Danny at the NY Ink shop ~ aka. the Wooster Street Social Club. How hard could it be?  Yeah, right. Much harder than I thought.

First of all, this place doesn't have a phone number! You can't just call the main number and make an appointment ~ the website gives their hours and says ~ first-come-first-serve only. Crap. That's not going to work. How am I suppose to know when Tommy's there?  What if we show up and he's there, but there are like 10 people ahead of us? This isn't turning out to be that easy, but as most of you know, I'm pretty determined.

In the beginning of July, I attended an event in Long Island and on my way home, stopped to visit one of my closets girlfriends in the City, who agreed to take me over to NY Ink to see what I could do.

Think about this ~ it was Saturday night in New York City, I'm in now one of the most famous tattoo shops in the world, and it was crazy busy ~ people were everywhere!    When you enter the shop, there are small windows down a long corridor leading to the main desk that allow you to watch the artists at work. On my way in, I asked some random people who Tommy was and thankfully he was there ~ working right along side Ami James. How cool!

I truly believe that timing is everything in life and this trip was no exception.  When I walked up to the roped-off artist area, Tommy had just finished a tattoo and the guy was checking it out in the mirror right next to me (tattoos normally take hours and he just happened to be finishing up when I arrived). Just as I'm standing there, Tommy walked out beyond the ropes and I knew ~ this WAS MY CHANCE!  I seriously had about 2.2 seconds to make my case for a definitive appointment for Danny with this guy and I had to make it count.

I told him a little about Danny, a little about Nathan, and that I'd like to have an appointment for a portrait for our anniversary.   That was all it took! He walked me over to the counter and told the guy to make me an appointment. At this point, the guy behind the counter pulled out two composite notebooks and put them in front of us and said, "this one's for the people who want tattoos from you and this one's for the people who you've said can get tattoos. What do you want me to do?" Tommy said, "put her in on August 1st at noon." I wish I could have saw my own face when he said that date. I never told him when our anniversary was, but it's August 1st.   This was all overwhelming, but I wasn't done. How was I going to tell Danny? I knew and just needed a quick picture with Tommy to put the icing on this anniversary cake!

When I walked out of that building and told my friend Becky what happened, we were both in tears!  I have no doubt that God didn't provide me with some heavenly intervention. It couldn't have worked out any better.

Now, I had to keep this a secret and wait for the right moment for the big reveal. I always make Danny a very special anniversary card, filled with pictures and usually a nice poem I've written. This year was no exception.  After spending hours searching for just the right card ~ I found it. It seriously could not have been any cuter or fitting. This was the card:

If you click on the card it will increase the size, so you can read it. It's cute.

Needless to say, Danny didn't even know what the card said until about 10 minutes later! All he saw was that picture of me with Tommy Montoya! He lit up like a Christmas tree and had the biggest smile on his face when he opened this card. It was awesome!!!

Once the reality of the appointment set in, I broke the news that he had about 12-hours to pick a tattoo! He wanted to hug me and kill me all at the same time! hehehe These aren't easy decisions to make, but I knew he'd do it.

We left early the next morning {our anniversary} with pictures in hand. We had a great day. Danny chose to have Nathan's portrait done on his left arm. The below picture is Danny's favorite and was the inspiration for his tattoo. It's of Nathan on the beach in Ocean City Maryland, when he was about 18-months old.

Here we go!!!

Once the portrait was finished, Danny wanted to have stars put around it for two reasons ~ first, Nathan's favorite song is Twinkle Twinkle and he is, and always will be, daddy's little star.

The finished product.

Danny & Tommy Montoya

So, Danny wants to know how I'm going to top this next year? He'll just have to wait and see.....

Over the Edge for the Special Olympics

2011-07-28T21:07:00.003-04:00

At the beginning of May, Danny and I received an email from Nathan's Aunt Charly, about starting a team to raise money and awareness for the Special Olympics.

Team Nathan was born.

The fundraising event is appropriately named ~ Over the Edge, because once you've raised $1,000, you'll have the unique opportunity to rappel down an 18-story building! The event takes place on September 16th, at the Crown Plaza in Albany, and it looks like I'll be heading over that edge sometime around 11:00am.

There are several different activities in the weeks to come that will help Team Nathan members reach their goals. Charly is hosting a fundraiser on August 13th, at Savanna's in Albany, at 8:00PM. If you're interested in joining us, just come down! It's sure to be a fun night, filled with lots of pretty awesome raffles!

There is also some fundraising happening at Carvel, Planet Beach, and Two Cousins fish market in Loudonville, thanks to Johanna Lyon. She has also arranged a hot yoga fundraiser for our team that will take place on Sunday, August 14th at the estudio in Latham. I don't have a specific time for the class yet, but should soon. My guess is around 7:00PM. The studio will ask for a $20 donation from all attendees and proceeds will go to Team Nathan! If you've never tried hot yoga ~ now is the time!

I also have to thank my friend Lisa, who stepped up to help the Special Olympics and our Team. She has organized a really fun competition that will draw a huge a crowd on September 16th, and get lots of press for this great cause!

For those of you who may not be aware, Lisa is among many things, the only female boxing promoter in the State, and she has had the amazing opportunity to work with some of our areas best fighters. A few years ago, she held an ESPN, Friday Night Fights event at the Saratoga City Center. The headline fight was the heavy weight bout of Shannon Miller and Vinny Maddalone of Brooklyn. It was a great fight! If you were there ~ you remember it! Shannon put everything he had into that fight, but lost to Vinny.

Well, Vinny and Shannon will meet again, but this time it's for the Special Olympics and this event!! Now, it's a race to the bottom!!

Team Pugnacious has also asked Mike Farragon to participate and he's on board! For those in the boxing world, you know who Mike is ~ an awesome fighter who usually headlines on Lisa's cards.

Check out this poster! It was created to just for this event!

Thank you Lisa, Vinny, Shannon, Mike, Johanna, and everyone that donated!

Every week, the Special Olympics puts out a newsletter and guess who was the first edger in the spotlight? You know that little face! Nathan Terry and his mommy. This was the article.

Edger Spotlight

Kandi Terry is going Over the Edge for more than just the thrill of rappelling over an 18-story building – she is doing it for her 3 year old son, Nathan, who has Down Syndrome. Her son Nathan already loves sports, whether it’s kicking a soccer ball, swimming or riding his horse. Kandi knows that her son Nathan will one day participate in Special Olympics, and she has already taken initiative to give back to the organization.

To Kandi, going Over the Edge is symbolic – individuals with intellectual disabilities face challenges and have mountains to climb every day. She believes that when Special Olympics athletes achieve success and have those medals to be proud of, they are on top of that mountain. Kandi is going Over the Edge of that mountain to bring Nathan and the other 51,809 athletes in New York State to the top.

The thrill of rappelling is still part of Kandi’s motivation, though. She remembers cliff jumping in Jamaica, like it was yesterday and the rush that came with it. She also loves to exercise and train at the gym and will be competing in her first triathlon. According to Kandi, “this event is a blending of my favorite things - my son, helping those in my community, and a new adventure! Everyone deserves a chance to know what it feels like to train for an event and then cross the finish line. There's no feeling like it!”

Thanks to our generous supporters like Kandi, Special Olympics New York athletes will have that chance.

All of this is a testament to the power of one ~ thank you Aunt Charly.
xxxo Nathan

From An Elegant Garden Party To The Down & Dirty Stock Car Races

2011-07-20T08:52:00.000-04:00

This weekend was full of lots of parties and a little stock car racing. We began our weekend at my Aunt's annual Friendship Garden Party, which was, as always, perfect. There was no detail left undone. The theme surrounded the recent Royal wedding ~ we enjoyed English punch, played Royal wedding trivia, the center flower pieces were in English tea cups, and each attendee was given a little royal gift. We were entertained by a guitarist and a lovely and funny quartet. My Aunt even took the time to make all the little girls their dresses with matching hair pieces. Simply adorable! I really love that we have this "girly" time together and appreciate all the work that goes into the planning. Most people live by the adage of "don't sweat the small stuff," but when it comes to planning an event ~ I don't and neither do my Aunt's.

Thank you Aunt Dorothy!

After a long nap, Nathan and I drove to Fonda Speedway to watch my dad do laps in the antique cars division. I wasn't sure how Nathan was going to fare given how obnoxiously loud the cars are, especially, those modifieds!

When we first arrived at the track, he tried to run away! I thought, "oh, no. This isn't good," but we forged ahead anyway. As we walked through the stadium, we were pleasantly surprised to see my Aunt Dorothy and Uncle Ivan, so we sat with them.

Nathan did really well with the noise and enjoyed watching the cars go around. Here are a couple of videos from the race. Nathan was too cute. When he was standing by himself between my Aunt and I, he would turn and duck when the cars went by and then clap as they went into the back stretch. The second video is a little off center because I'm trying to hold my phone, but was guessing as to whether or not I was actually getting us in the picture.

Our 4th of July Vacation

2011-07-12T21:16:00.000-04:00

The Terry Family spent most of the past two weeks at our camp. We celebrated Nathan's half-birthday, enjoyed lots of sunshine, swimming, and outdoor fun! We also spent time with family and friends and ate way to much! What follows are the pictorial memories of this time. Oh, and a few videos too! Enjoy. Thanks for stopping by!

picture fun with Daddy!

Mommy's helper!

He was great in the boat!

These are blue chocolate candy cups I made and filled with birthday cake flavored ice cream. Topped off with store bought whipped cream (mine didn't survive the ride to the lake) and decorated with red edible ink and 4th of July candy. These are literally ice cream cupcakes. Perfect for a hot day!

Notice Nathan is all by himself? Daddys not holding on! Yeah, Go Nathan!!

Nathan & Blake riding in the bike stroller! They both ended up falling asleep on the ride.

Cousin Tommy and Lisa came for a visit! YEAH!

Happy 1/2 Birthday Nathan!!

Craft time ~ Nathan made a dinosaur and a monkey!

Nathan can't keep up with the big dogs when he's partying with the Night Owls!
Nathan was awake from 11:00PM until 3:00AM one night at camp.

Playing on the beach with the Bruno Bunch!

Nathan and Daddy spent this weekend together while I was away for an event with friends. On my way to dinner one night, Danny sent me this video. Way to go Nathan Daniel Terry!!!!

Our Father's Day Fish Tale

2011-06-23T11:06:00.005-04:00

We had a super fun Father's Day, complete with hanging out at the beach, fishing, playing at the playground, watching an old family movie, and enjoying lots of food!

Fishing was always on the agenda for today. I'm going to let you in on a little secret ~ Danny has never caught a fish in his life! That fact has always saddened me and on some level bothered Danny too. Although, I have it on good authority that he and Nathan will make up for this deficit in no time, I still prayed that God would give him a BIG fish on Father's Day.

In typical Danny fashion, there would be no fishing for Daddy until Nathan had had his turn and how cute is he? These first three pictures are actually from two weeks ago, when we took Nathan fishing for the first time. The other pictures and video are from Father's Day. Our son is a natural fisherman.

As you might imagine, Nathan thought the worm was weird! We would hand Nathan the worm and he'd take it every time, but as soon as the worm would move, he'd drop it and freak out! No surprise there ~ his Daddy does the same thing! hehehe Just kidding.

The first person to catch a fish on Father's Day was Grammy! Well, it was her day too, so why not! It was also the first catch of her life. Thankfully, Danny took a picture of this little guy because when they placed him in the water for Nathan to see (we were on a bike ride) he swam away!! He said, "adios folks! I'm out of here."

Well, it wasn't long before Daddy had a bite too! YEAH!! Daddy would get his first fish and Nathan would get to touch him. And, he did! Although, this little guy doesn't really count as the catch of the day or his first "real fish." It would do for now. My prayers were bigger than this and I knew God wouldn't disappoint!

God was just teasing him with this little guy!

So, here's the fish comedy tale. After his little guy was tossed back into the lake, Danny wormed up and threw the line back in. After a little bit he decided to grab a beer. When he turned his back, his bobber went down. I yelled, "Danny your bobber's going down!" He immediately turned when it popped back up and didn't move. Figures. So, after another minute he turned again to grab his refreshment and once again that bobber went back down! I said,"babe, it's doing down again!" Now, I'm totally cracking up because it's like this fish is totally toying with him. I said, "just turn your back and pull the line! hahaha Let's see if that works!" Well, he turns his back and that bobber goes back down. I felt like we were on some funny prank television show. He pulled the pole up and we weren't really sure if he caught the fish or not, but my dad said, "reel it in ~ you got him." He didn't know if it was another little guy or what, but I'll tell you this ~ God answered my prayers! What a Father's day present!!

That is one proud papa!

After Danny caught his first big mouth bass, it was like we were at the casino - he packed it up and was done for the day! That's it - he hit it big and hit the road!

We enjoyed such a nice day together and I wanted to end it with something special. I decided to make my own pictorial cupcake wrappers. These are a little bigger than they should be because I had planned on making my own cupcakes too, but simply ran out of time and the cupcakes I bought were a lot smaller.

The bonus of buying cupcakes was that everyone got their favorite ~ Daddy enjoyed a Guinness cupcake, Grandpa had carrot cake, Grammy had smores, and Nathan had cotton candy!

Nathan & Grandpa (or Papa as Nathan calls him)

Happy Father's Day!

Bye Bye Toddler School ~ Hello Preschool

2011-06-09T09:45:00.000-04:00

Miss Cole ~ Nathan's Toddler Teacher for the past two years!

Nathan officially graduated from toddler school Tuesday!!! I know most don't consider this a graduation, but I certainly do! Nathan has spent the last two school years with the same teachers and with a few of the same kids. We're so thankful for the love and support that his teachers have provided him these past few years and we're certainly going to miss them, but it's time for Nathan to move on. He's ready to be challenged in an educational environment that is better suited to meet his needs. Nathan will be embarking on a new journey with new teachers and new friends.

Thank you gifts for Nathan's Toddler Teachers

I've been researching and visiting preschools since Nathan was the ripe old age of one - no kidding! I could go on and on about what I liked about each school and what I didn't, but it would take too long! I'll just say this ~ there were schools that didn't believe in Nathan's abilities and schools that didn't provide him with enough support. One school in particular refused to teach Nathan the alphabet or his numbers because they felt that without understanding the "context" of such exercises, it would be meaningless and pointless. And, "it wasn't their responsibility to prepare children for kindergarten." WHAT? I knew instantly, that this school wasn't the right fit for our son. Nathan has great potential and the ability to learn. We will not send him to a school with such low expectations right out of the gate. Quite honestly, with that kind of attitude, I'm surprised they're even in business and so well respected. Everyone raves about this school, which is the only reason I looked into it. I guess we all have different opinions about the abilities of our children and what's best for them.

The school we ultimately chose is amazing!! I made several visits, as did dad and Nathan's therapists. The classrooms are small ~ perfect for little ones. They even have little doors, toilets, and sinks! The school uses a creative educational curriculum, they offer therapy on site (therapists are employed by the school, which means there's more accountability and the Director is a no-nonsense type of person. yeah!), there is a lot of in-class support services offered by both a Special Education Teacher and an Early Childhood teacher (both hold Master's degrees in their respective fields), and the school has a College of St. Rose Special Education component (this was very important). The school also has a kindergarten class, which Nathan may be enrolled in, but we'll cross that bridge when we come to it. The school seems to have just about everything I was looking for! I'll blog more about the specifics of the educational curriculum, therapy services, and St. Rose component when Nathan officially transitions from Early Intervention into the CPSE system, which will happen in mid-August.

Thanks for stopping by! We hope you all have a great summer!

What Has Been The Hardest Part?

2011-06-04T08:05:00.003-04:00

The day before Mother's Day, I found myself in the company of a woman that I hadn't seen since I was pregnant for Nathan, which was actually the first and only time we'd met. She recalled that I worked in the Senate and that I was pregnant, so she began asking typical questions about work and motherhood.  I explained to her that our son was born with Down syndrome and when he was eight months old, we were forced to make a life-altering decision ~ resign from my job and take care of Nathan or put him into daycare.   It wasn't much of a decision. We knew what the right thing to do was - it just wasn't an easy leap to make. Anyway, after going through the story, she asked me a question I had never been asked before, "what has been the hardest part?" Huh? The hardest part? I never thought about it.

Within seconds, I was thinking all sorts of things: is it the juggling of 5 different therapists schedules injunction with our own family schedule and my school schedule? Is it Nathan's cognitive and developmental delays? Is it the doctors appointments and health concerns? Is it the continual grieving over Nathan's syndrome and worrying about what awaits us in life? Is it dealing with an ignorant society?  Is it that Nathan has to be watched every second unless he's in his playroom? Is it staring at the same walls day in and day out? What is it? It's none of these.

These questions all represent facets of my life and present their challenges, but none have been the hardest part of being a mother of a child with Down syndrome. The hardest part has been purely personal. It has nothing to do with being Nathan's mom and giving him the support he needs. I would do anything for my son (just like lots of moms) and my sacrifices have proved that. I challenge you to find one mother that hasn't faced hurtles and challenges with raising their children.  They don't exist. I could sit here and delve into what I feel has been the "hardest part," but it wouldn't change the facts or serve any positive purpose.  So, I'm going to leave it where it belongs ~ in the past.

On another related note, a few months ago, I received a really nice message from a friend that I've been meaning to share. It read, "I am one of your blog followers and I am so completely amazed by you and Danny. Your son has no idea how lucky he is! Your involvement in his life and development and education is truly a blessing! I'm so impressed by you! I've thoroughly enjoyed watching Nathan grow! The picture of him at sesame street was so priceless and completely melted my heart! Be so very proud of yourselves for being awesome parents and infinite advocate for him! You make us moms proud to be parents! Congratulations!"

My reply: "It's so rare that a mom gets such an out-of-the-blue message like this. thank you so much!!!! I can't tell you how blessed I am to be Nathan's mom. I was just thinking today how imperfect we all are and how loved we are by God in spite of it. I love my son and his disability means little to me. We're a move-forward kind of family. Thank you for reading his blog. It means a lot!"

My Mother's Day gifts from Nathan

The greatest part about being Nathan's mother is the love we share and fun we have everyday. I couldn't have been more blessed and that's all that matters.

The Mother of All Video Posts!

2011-05-31T06:49:00.018-04:00

Summer has arrived in New York!! Now, let's hope it sticks around for the next 4 months without too much rain. I recently upgraded my phone to the new 4G iPhone, which means I have all sorts of new features; including a video camera and the ability to take pictures in HD! So, I've been putting it to good use. The only drawback, if there is one, is that the video doesn't fill the screen unless I turn the phone sideways.

Here are a few videos from hippotherapy. Nathan's doing very well - his stamina on the horse is improving, he's sitting up straighter, and able to do more, like play basketball from the saddle!

A few weeks ago, Nathan and I went to the Greek Festival and he was terrified of the Gladiators! hehe.

Summer means spending lots of time at the Lake and enjoying the company of friends and family.

Last week, Nathan's cousin Lily came up for a visit and it turned out to be more than just fun. As you may recall, Nathan has never like the swing - ever. Well, that all ended the moment he saw his cousin get on and go for a ride. Now, he likes both the tire swing and toddler/baby swing. Super cool!!

Last year, Nathan also didn't have the motor plan to climb up the ladder on the jungle gym and go down the slide without the support of an adult. I remember how heartbreaking it was to watch him struggle with what other toddlers found to be "child's play." This season, he's doing it by himself! I tried to get a video of him climbing, but as you'll see, it didn't quite work out that well. :-)

The commencement of summer, also means the start of a few of Nathan's favorite things ~ dance parties and swimming! He does a lot more running than dancing and a lot more jumping than swimming, but it's all good!

A Tough Lesson Learned

2011-05-14T07:04:00.007-04:00

Our family has returned to our summer home and this year we secured some prime real estate, where Nathan can just be a kid and I don't have to worry about the road every second!! There's lots of room for him to play on our site and we can head over to the park anytime. I'm going to take some video of Nathan during our next visit; he's grown so much since the end of last season and has accomplished tasks he was unable to do just six months ago.

We spent four days up at the Lake this week getting ready for the new summer season, which includes Daddy building a new deck, cleaning up the site, and bringing up all of our supplies, golf cart, furniture, and toys.

On our final night this week, chaos and terror struck our family. Nathan and I were preparing dinner in the camper while daddy was out finishing up the deck. I needed to put the food on the grill, but didn't want to carry Nathan with me, so as soon as I stepped out of the camper I said to Danny, "watch him, he's right by the door." Danny walked over to the camper door about two seconds later, and discovered Nathan had LOCKED the door! With the keys inside!!! HOLY CRAP! Talk about panic-stricken parents. Not to mention, all the windows were closed and locked too.

Danny tried to get Nathan to turn the lock back without success. I'm running around the camper trying to figure out how to get in without much luck. Danny says, "come here and talk to him. Keep him by the door." In the meantime, Danny runs to the truck and grabs his drill and decides to try and drill through the lock of the bathroom door. Not sure if it would work, but decided to try. Once he began, he instantly knew it was a lost cause. As soon as he acknowledged this, I knew I had to try something. I began to pry open the window next to the front door with my hand. At this point Nathan was hanging out on the couch reading a book! He's having a grand ole time while we're freaking out!!! Once I got under that window and really pulled, it began to open! I yelled to Danny that it was working!! He immediately came over and took over. He busted that window right from the lock and its hinges! :-) As he's pulling it open, he says, "you'll never fit through that window." I said, "oh, yes I will! Watch me." Once he got it all the way open, he was actually able to stand on something and reach inside and unlock the door!!!

It was a tough lesson to learn and we've taken steps to make sure a similar incident doesn't happen again. We also have to buy a new lock for the back door and a new window, but in the grand scheme of things, who cares! It's a small price to pay.

Nathans hanging out enjoying some juice and cartoons. We're super excited to be back up at the Lake and look forward to a fun-filled summer.

Health Check

2011-05-07T05:11:00.004-04:00

For our regular readers, you know Nathan's had a tough winter, but there are a few things we haven't shared. When Nathan was brought to the hospital for what turned out to be the early stages of pneumonia, the doctor handling his case kept asking Danny about Nathan's lungs and whether or not he was born with any lung abnormalities. We insisted that he wasn't and that the doctors performed all the necessary tests in the NICU to determine this, but she was so persistent that we became concerned. Did they miss something? Is Nathan now three years old and we're just figuring out he has a problem with his lungs? Not the line of questioning or news we were expecting.

During our follow up visit to Nathan's pediatrician, we told him what had transpired at the hospital and voiced our concerns that something may have been missed early on. I asked for a follow up x-ray in about a month, to be absolutely sure we weren't missing something. He said that it wasn't normal procedure, but in Nathan's case he'd make the exception.

A few weeks ago Nathan developed yet again, another chest cold, fever, and vomiting. Given his tumultuous winter, I didn't take any chances and off to the doctor we went. Well, we got another shock at this visit. Nathan had developed a heart murmur. CRAP! What is that? Why would he have it? How was I going to tell Danny? It will break his heart.

Before leaving the pediatrician, we made an appointment with our favorite pediatric cardiologist ~ Dr. Harm Velvis. The appointment was two weeks out. Dr. Velvis is the President of the Down Syndrome Aim High Resource Center and has a beautiful daughter with Ds.

At this point, we still don't know if Nathan has a problem with his lungs and now we may have just added a heart condition to the mix. You could probably imagine how we were feeling. Helpless and heart broken. It was a rough time.

I decided it was time to get that chest x-ray and Nathan's blood work done, to begin ruling out health issues. So, off to Albany Medical Center we went. For those of you with little ones, I found out at the hospital that your pediatrician can prescribe a numbing cream, so the kids don't feel the needles. I'm not sure why I've never been told this before, but Nathan just experienced his last needle without that cream. Thankfully, the chest x-ray came back fine!!! As did his annual blood work (we always have that cancer concern)! YEAH! Now, we just had to worry about his heart.

When we arrived at the cardiologist's office, Nathan immediately had an EKG and then a full exam by Dr. Velvis. His diagnosis ~ Nathan was FINE! He believed the murmur was caused by the illness, which is apparently common in children, but to be sure he performed an echocardiogram. We were able to see Nathan's little heart at work! It was so cool. And, the end result was the same. His little heart is perfect! THANK GOD!

To say that we're ready for summer, would be an understatement.

Here are a few fun pictures from the last week. Nathan's cousin celebrated his first birthday (the theme was bunnies) and Nathan is loving spending time with Babe! By the way, Babe just celebrated his 31st birthday!!

Nathan and the birthday boy hanging with the bunny who came to visit!
This is my Mimere with a some of her grandchildren.

Nathan's helmet is bigger than his head, which is why it rarely stays on straight! hahaha

Thanks for stopping by and for the prayers for Nathan. When I gave Nonnie the news she cried tears of joy and said, "Oh, God he answered my prayers. I'm so glad." Amen to that.

Easter Eggstravaganza!

2011-04-29T20:20:00.012-04:00

We had a wonderful and busy Easter this year. We kicked off the festivities with our annual Easter candy making session. The kids had all sorts of chocolate molds to paint and a variety of colored chocolates to choose from. Emily showed Nathan just how to paint those chocolate covered eggs.... ...and it didn't take him long to get the hang of it!What I loved most about this decorating session, was that I didn't have to worry about Nathan. It didn't matter if he put the paint brush in his mouth or painted his shirt and jeans instead. It was only chocolate and wouldn't hurt him and was washable! Plus, it tasted great too! You can only imagine once Nathan got a taste of it how challenging it was to keep the candy out of his mouth. More than once he tried to bite that big egg!

Both of the kids had a great time and their Easter candy wasn't only good, but beautiful! As they say, we eat with our eyes first.Peanut butter filled eggs...yum! A few of these eggs are also filled with jelly beans. We decided to go outside the box a little.Emily even helped with the packaging and ribbon! We hope you all enjoyed your made-with-love Easter candy! The next annual tradition was Aunt Sandy's Easter Egg hunt! The kids had such a great time collecting their Easter eggs, hanging with the Easter bunny, enjoying pizza, and spending time with family. Thanks Aunt Sandy, for the memories and all your hard work! And, thank you Mr. Easter Bunny, for always being such a great sport and taking the time to stop by and entertain us!
Aunt Sandy is a big kid too! We love that about her.Nathan and Uncle Casimiro. Great picture!
These are the cupcakes I made for Aunt Sandy's Easter egg hunt. I have to admit, I spent all day working on them! The cupcakes were vanilla and I added sprinkles to the batter and then filled them with a fresh strawberry mousse. The grass is actually buttercream frosting and the carrots and Easter eggs are made with modeling chocolate. It was the first time I had used modeling chocolates, so to say there's a learning curve would be an understatement and it's why they took all day. I now know how to make modeling chocolate, color it, and mold it. The rest is just practice. The baskets were also cut by hand. My sister thinks I have too much time on my hands! I disagree - I don't have enough time! I just seem to fill every available nanosecond with something to do and it's all worth it! :-)Although, daddy couldn't be with us at the Easter egg hunt, Nathan waited until he got home to open all his eggs.
Easter morning was all about coloring his eggs. As soon as I saw the dinosaur egg coloring kit, I knew I'd struck gold! Nathan loves dinosaurs and if you recall, he was one for Halloween this year. Our coloring session was not without incident. Nathan decided to grab and dump the red bowl of die. Yep, it made a mess and his shirt, that we love so much, is now in the trash. Aren't they adorable?

I'll end with this funny little story. On Easter morning, toward the end of mass, the priest finished praying and said, "amen." Just then, Nathan yelled out, "bye bye!" lol!! Not sure where that came from, but it was funny!

A little bit of this and a little bit of that...

2011-04-18T20:24:00.007-04:00

I just love the "get-your-hands-dirty" kind of fun Nathan has at school and that his teachers make the effort to capture these moments for all of us to see. I leave a digital camera in Nathan backpack every day for just this reason:

After I saw these pictures, I thought, "HOLY SMOKES! I'm so glad he does this stuff at school!" No way he's doing that at home. Outside at camp sure, but not at home.

A few weeks ago, Nathan returned to hippotherapy and to his horse - Babe. It was a super sweet reunion. The minute Nathan got on his horse, he yelled ~ "GO!" We all started cracking up. Last year, the therapists were working really hard to get Nathan to verbalize "go" and this year, it's the first thing he says! Now, that's progress!

The weather has started to break, so we're taking advantage of it! These are a few pictures from the park this weekend. Nathan really loved watching the big orange gold fish in the pond.I'm pretty sure this is a family tradition! Nathan won't eat his olives unless they're on his fingers! It's too funny.

Thanks for stopping by!

Come On Summer: Nathan's First Swimming Lessons

2011-04-10T20:09:00.010-04:00

In anticipation of spending another summer at camp, Danny and I wanted to sign Nathan up for a basic swim program. The stumbling block was choosing the right program and then knowing when it was the right time for Nathan. The last thing we wanted to do was frighten him.

Nathan is attending swim lessons from the varsity swim team at RPI, (the College where I received my graduate degree). From the moment I saw the advertisement, I knew immediately it would be the perfect fit for our family.

He wasn't a big fan of the water temperature, but he quickly got used to it and we had a great time at Nathan's first swimming lesson! Daddy was on hand to take all the pictures. We started our lesson by kicking (like crazy)! Oh, he loved this part! Then the instructors gave us these balls and Nathan swam to them, pick it up, throw it, and start all over. He actually doggy paddled! It was awesome! Jumping in like a pro! He loved jumping into the pool and kept signing "more." Learning to blowing bubbles with our mouths was tricky. We need to keep practicing. And, finally learning how to floating on his back. Yeah, he wasn't a huge fan at first, but he's doing great now! Daddy took him to swimming this week and is taking him again next week. Last week, they practiced going under water! YIKES! Thanks to a former coworker, who's little boy is also taking lessons at RPI, we have a few pictures to share. Thanks Cindy!!

I love this picture! Nathan's getting ready for sunbathing too!

Only a few more weeks until camp opens! Summer, here we come!

Liberty And Justice For All

2011-04-04T20:12:00.007-04:00

Our final days in Washington were spent touring the United States Capitol, the Supreme Court, the Pentagon, and other sights. We had guided tours at all locations except the Supreme Court, where we were treated to a lecture in the courtroom! We were limited to where we could take pictures, but I managed to snap a few along the way! The United States Capitol I just love this picture!What was so unique about our Capitol tour, was that each of us wore a headset that allowed us to hear every word our guide was saying. The United States Pentagon is a city in and of itself. If you can name it, you'd probably be able to find it in the Pentagon. They have candy stores, hair stylists, markets, a gym, restaurants, and much more. Our guide said, the only thing missing was child care and a bed. Otherwise, he'd never leave! The 9-11 Memorial was very emotional. Standing in the exact location where the terrorists crashed a plane into the building, looking down the long hallway that was destroyed by the impact, and reading the names of those who were lost in the tragedy was sobering. It was sad. The United States Supreme CourtOur final night in D.C. was all about Nonnie! We celebrated her 71st birthday!! Carmines restaurant in New York City is her favorite, so we tracked one down in D.C. and enjoyed a great dinner. The servers even sang a big ole' happy birthday to Nonnie!

Nonnie is a very special part of our lives and she's loved beyond measure. This trip was something she's always wanted to do and we're thankful to have shared this experience with her.

Born and raised in Italy, she immigrated to the U.S. on June 18, 1964. On March 20, 2011 she finally visited the country's capital that welcomed her with open arms. God Bless America & God Bless Nonnie.

Honest Abe & Gift from the U.S. Secret Service

2011-03-31T21:32:00.011-04:00

Did you guess that we visited the Lincoln Memorial following the Arlington National Cemetery? He's was not only HUGE in life, but also in stone. Although, he was tall, I'm not just talking about his height. He was without a doubt one of our country's finest Presidents.

World War II Memorial

Nathan was running around like crazy! Having a great time.

The Korean War Memorial

The Vietnam Memorial

The following day was super busy and just awesome! Early in the morning, we headed for the Washington National Cathedral, to see the church and pray for Mario, a family friend who was nearing the end of his journey on earth.

What a beautiful Church! It's actually the 6th largest Cathedral in the world and was just breathtaking. Our first stop was to light a candle and say a little prayer for Mario, which we did together as a family. This was Nathan's first candle lighting experience and he handled it pretty well. After we prayed, Nathan found a book he wanted to read! So stinkin cute.

As we walked into the main part of the Cathedral, a Reverend came up to us and commented about how nice it was to hear young children in the Church. Well, say no more! Nathan was all over it! He put his arms right out to her and she picked him up and they hugged. It was cute. Nathan is such a love bug! She said, " he knows a grandmother, when he sees one."

Less than two hours after our prayer, God took Mario home to be with him. We are honored and blessed to have known him and pray for his family now.

Our final stop that day, was the White House, where Nathan received a very special gift from one of the President's Secret Service Agents! Before I reveal that story, I'd like to tell you about the arduous tour process, incase any of you are considering a visit to the White House. It's very different today, than it was prior to September 11th. You must now receive security clearance and apply for admission through a Member of Congress, at least 6-months in advance of your arrival and you won't find out if you're approved until two weeks before your scheduled tour. Even though this is the "people's house," not everyone that applies is approved and not because they don't pass the security screening. They're very selective. I applied last year for security clearance for the four of us and was denied, but when we applied this time, we were approved. Timing is everything.

When we were entering the first set of gates at the White House, a Secret Service Agent tapped Danny on the shoulder and said, "this is for the little guy" and handed him this official Secret Service pin!! This is a life-long keepsake. What a cool memory for our family and what a nice gesture on the part of that agent.

Danny and Nathan also received the backstage tour and I'm so jealous! Because we had Nathan's stroller, Danny was unable to take the stairs, so was taken into the off-limits sections of White House to the elevator. Lucky dogs!

You're not allowed to take any pictures inside the White House. I can tell you it was beautiful, but I would have like to see more, namely the Oval Office! I like the behind the scenes tours. Looks like the only way I'm getting that tour, is to work there! :-)

This picture is from the back of the White House. Another memorable day!

The Torch Has Been Passed to a New Generation of Americans (D.C. ~ Part I)

2011-03-28T08:22:00.016-04:00

Our family has just returned from a week long trip to Washington D.C.. It was Nathan's, daddy's, and Nonnie's first trip to our nation's capital. Exploring D.C. is a moving, and at times, sobering experience. We were in awe of all of the sights, buildings, and attention to detail. Our sense of nationalism is off the charts! We're so proud to be Americans and live in the greatest country in the world!

Our trip began on an Amtrak train ~ Nathan's first official train ride!! Thanks Aunt Kathy for letting us use the iPad and for downloading Elmo and Barney video's! We arrived around dinner time, ate, and went to sleep! On our second day, we went sight-seeing on a mobile touring trolley. The trolley took us to any of 40 sights. We were able to get off and on as much as we'd like. It was so convenient, the bus dropped you off and picked you up every 20 minutes. Our first stop was Arlington National Cemetery. Our form of government, and the freedom it provides, would not be possible without the sacrifice of the men and women in uniform and their families. Therefore, it was fitting that we began there. Tomb of the Unknown Soldier Eternal Flame Memorial, in honor of former United States President, John F. Kennedy. Guess where we went next? Here's a clue: "With malice toward none, with charity for all, with firmness in the right as God gives us to see the right, let us strive on to finish the work we are in, to bind up the nation's wounds."

Streaker Terry...

2011-03-14T09:23:00.004-04:00

This winter has been hard on Nathan and it seems like every time we turn around, he's coming down with a cold or the stomach bug. Before Nathan started toddler school, he was never sick ~ not once in 18 months. And, as much as we value his experience, we're looking forward to summer, just so he won't be sick anymore.

Our family is very fortunate that when Nathan's not feeling well, I don't "have" to send him to school. Many parents that don't have that luxury, which is probably one of the reasons there's so much sickness in these child-centered facilities. I don't keep Nathan home for just his sake, but for the sake of the other children and their families. The kicker to all of this, is we recently added another day to Nathan's school schedule, in preparation for his 5-days-a-week preschool schedule in the fall. I don't think he's been there for a full 4-days yet! Murphy's law.

On one of his sick days, Nathan got quiet all of a sudden. Oh, no! He was up to something and I knew it! If you're a parent you know what I'm talking about. And there he was ~ no pants or diaper! Running around free as a jay bird; loving his new found freedom. Little turkey!

In other news, pending Nathan's chest cold he'll be returning to hippotherapy tomorrow! I'm sure he's going to be thrilled to see his friend Babe and ride on his horse. We've also signed Nathan up for swimming lessons!!! I've wanted to for sometime, but the right opportunity hadn't presented itself ~ until now. We'll be taking Nathan to my alma mater for lessons with the varsity swim team and I couldn't be happier! I'll blog more about it when he starts in a few weeks, but it's perfect timing ~ summer and camp are right around the corner!!!

We have lots of other exciting things happening in our lives, but that's another story for another time! Have a great day and thanks for stopping by.

Sesame Street Live!!

2011-03-01T07:59:00.008-05:00

Nathan was off from school last week and as much as I tried to get us out and about the snow made that a challenging exercise. I was able to take Nathan and Emily on their first, and probably last, visit to Chuck E Cheese. It was ok, but I'm just not sure we'll return.We also took a long ride up to Lake George one day and Massachusetts another for a little shopping. We also went up to the bouncy bounce place in the mall and out to lunch a few times. We had planned two other outings to play and learning centers around the Capital Region, but the weather prevented those from happening.

We had some fun with stickers from Grammy and then capped our week off with a Sesame Street musical at our local theater. Thanks to a friend, we were able to buy special seats that allowed Nathan a little one-on-one time with his favorite friend ~ Elmo!!!

I can't articulate the joy in my heart as I watched Nathan see Elmo coming into the room ~ he was so excited! It was like his t.v. friend was real and it was the greatest thing in the world! It seriously brought tears to my eyes.

This picture sums it up! I took it from our seats the moment Bert came out onto the stage! These are the ahhh moments you never get back and I was waiting.

Now that's an Elmo HUG!!!Here are some pictures from the actual show.

Come On!

2011-02-27T15:33:00.001-05:00

This is what Nathan and Daddy do while Mommy's at work! :-) It gets "good" around 1:58.

All Talk!

2011-02-25T08:40:00.002-05:00

This video is of Nathan telling us about his day (we think). It's bittersweet because on the one hand we love hearing him talking, even if we don't know what he's saying. On the other hand, he has so much to say, we wish he could tell us in a way that we could understand. His verbal communications skills are improving everyday and it's only a matter of time before we'll be able to really listen and understand what he's saying. Danny said Nathan looks like an Italian Priest blessing everyone with the sign of the cross in this video. This kid is definitely Italian! :-) Enjoy.

For the love of food....

2011-02-21T14:31:00.004-05:00

As a mother of a young son, I take every precaution I can to provide Nathan and our family with healthy and pure meals. To that end, I buy only all natural chicken, 100% wheat bread (not that fake wheat bread), organic eggs, organic carrots, organic milk, pure Italian nectar juices, all natural and no sugar added foods, foods made without high fructose corn syrup, and some other organic fruits and veggies. I try to stay away from the processed/prepackaged foods and provide my family with sweet treats and "junk" food from our own kitchen. I'm not against eating cakes, cookies, ice cream or pizza, especially when I've made them and know exactly what's in them. Beyond the health benefits this provides, it's also much safer. For instance, two weeks ago my husband and I were enjoying lunch together on a Saturday ~ just the two of us! We went to a little place called Laney's and I ordered a chicken quesadilla. I ended up taking most of it home and when I went to eat it the next day, I bit down on a medium sized staple that was cooked into the food! No lie. I thank God I bit down on it and didn't swallow it. Not even a week later, Danny ordered a piece of pizza from an establishment by his office and ended up biting into a piece of sharp metal that had adhered to the bottom of his pizza from the oven! Another time, we were eating a salad served family style and I found a child's plastic dog bone in it (Great Escape Lodge)! Can you believe that? How does stuff like that even happen and thank you God again, that it was us and not Nathan. It's a shame. Eating out is expensive and we do it so infrequently ~ this is why. We get better and safer food at home.

Anyway, I read this great article in this month's edition of Women's Health, that I'm going to share and talk about. It really made me think about of my relationship with food and how it affects my family. Martha Brockenbrough, in the article, Food: the love/hate story introduces us to how "sweet memories and our tough struggles revolve around what goes into our mouths." I would recommend you read the article and have hot linked it here.

For me, what really stood out was how important food choices are early in life and the happy memories that are build around the dinner table. The memories that we associate with certain foods, people, and experiences. She talks about a study that determined 45% of our food choices are biological; they're determined by genetics. However, the other 55% is learned, and learned early in life. She goes on to say, that babies tend to pick up their parents eating habits and food preferences. It goes without saying, that parents are the primary influence on a child when they're most impressionable. Parents exude the most influence because that's who the child is exposed to on a daily basis. As we age, there are other agents of socialization that will eventually influence our eating habits, but none like our own family. That's why the food choices I make for our family are so important and they always have been. From the day Nathan began eating "real" food, it's never been packaged or processed. It took a lot of time and energy to prepare his foods and it still does, but I wouldn't have it any other way. Even when I was in the office and working a second job, my family ate well. Food has always been important to me an I think it probably stems from having home cooked meals every single night growing up. We never ate out and rarely ordered in. My sister is the exact same way with her family.

Another part of the article that struck a cord with me, was that foods has the power to not only conjure positive thoughts, but also negative emotions. There are certain foods that I eat that bring me back to my ethnic roots ~ hummus, tabuli, Lebanese dressing, and lots of others I can't spell without looking at my great-grandmother's cookbook. I've learned to prepare and cook these foods because they make me feel happy and I can't help but to think of my family.

Since I've met my husband, I've come to discover the foods from his childhood that invoke positive emotions in him and I've done my best to learn how to cook those too. For example, he loves his Aunt Sandy's cookies ~ I mean loves them! So, one day I asked Aunt Sandy if she would come and teach me how to make them, so Danny would always be able have them. She did and I'm so thankful. I've tried to do that with almost all the foods that bring him comfort (homemade pasta, sauce, soups, breaded chicken). He's gotten to the point now, where he tells me: "hey, you need to learn how to make this." I'll never have the incredible talents of these dynamic ladies, but I'm trying and they're awesome about teaching me. Plus, I love just hanging out with them.

Given this is a women's health article, Brockenbrough also talks about our negative associations with food that stem from our childhood and how eating is just an emotional experience (good or bad). I have negative issues with food too and I'm very conscious about not passing them onto my son. I can't eat oatmeal. There was a time where if it was even put near my mouth I would gag. When I was a young child, I didn't want to eat my oatmeal and my mother's boyfriend put his dirty socks in my face and told me that if I didn't eat that oatmeal he'd stick them in my mouth. The thought of it even now repulses me. I have no idea how old I was, but that moment has never left me. I ate my oatmeal that day, for the last time. I've tried repeatedly to eat it, but I just can't. At least now, I'll taste Nathan's to make sure it's not too hot, but that's about the extent of it. I know this is my story, but I'm sure many of you reading this could probably give your own account of a life altering food experience that haunts you. I'm trying to move past mine. I hope you can too. I refuse to pass this onto my son ~ he eats oatmeal many mornings and loves it. I will not make him eat anything he doesn't want to. I will never make him eat food for breakfast that he didn't finish for dinner or make him sit at the table until he eats his what's on his plate and neither will anyone else. Ever.

With that said, I find comfort in the knowledge that he'll pick up our eating habits and preferences, so he'll be just fine. What three year old do you know that loves smoked salmon, green salad, and extra sharp cheddar cheese? :-) Our son has a very established palate!

Now, what am I going to make for dinner?

Transitioning into CPSE

2011-02-17T15:14:00.007-05:00

As I've blogged about before, Nathan is moving into a new educational program for children with disabilities. The Committee on Preschool Education (CPSE) will now determine Nathan's services and supports. Let me tell you a little bit about the "committee" and the decisions made at these annual CPSE meetings.

The CPSE team is made up of lots of people, including the Chair of the Committee, the parents, special education teacher, ed psych evaluator, Parent Member, your therapists, and your service coordinator can be there if you'd like (if your child is like Nathan and enrolled in Early Intervention). There are four different types of meetings, but I'm going to focus on the initial meeting where eligibility is determined. Before I get into the specifics, I have to admit that I've taken a bunch of seminars on the CPSE/CSE process and need to thank the Down Syndrome Aim High Resource Center and the Parent Network of the Capital Region for their invaluable resources. I'd recommend you sign up for emails and upcoming events. Knowledge truly is power.

The first step in the process is the Introductions ~ who's sitting at the table. Often times a parent may know a few people, but not all. It's important to know who is privy to your confidential information and their role in the meeting. Secondly, the child's present levels of performance are discussed ~ i.e. Nathan's strengths, needs, functioning levels, and any parental concerns.

The next step is eligibility. Part 200 of the New York State Education regs, prescribe 13 classifications that a child must fall within to qualify for services. They include: Autism, a Learning Disability, Hearing Impairment, Deafness, Multiple Disabilities, Deaf-Blindness, Visual Impairment, Traumatic Brain Injury, Orthopedic Impairment, Other Health Impairment, Intellectual Disability, Emotional Disturbance, and Speech or Language Impairment. Each is defined in the regulations. I suggest you take a look if you're interested (look in section 200.1 (zz)). Nathan is automatically eligible and falls under the category of Intellectual Disability.

Once a child is deemed eligible, an Individual Education Program (IEP) is developed. An IEP includes annual goals for the child, that are specific and measurable. There's a new IEP process for 2012, so everyone is trying to get used to it. Decisions on the appropriate services, supports, and placement is based off of these goals. A key element is that these services MUST be provided in the least restrictive environment.

Prior to our meeting, I spoke to each of Nathan's therapists and other providers about best practices and Nathan's needs. Going into our intial meeting, I knew that Nathan's services were to automatically decrease. What I mean is, Nathan now receives therapy sessions that last anywhere from 30 to 50 minutes. Some provide 30, but most provide 50 minutes or more. When Nathan transitions into CPSE all of his sessions will be 30 minutes, which equates to an automatic decrease. I knew the level of services I was looking for and whether or not those services would be provided in a group setting or individually, and if in a group, with only two other kids. Specifics are important in an IEP (it's basically the rule book). I had also pre-determined that Nathan would transition into a formal integrated program at the end of August rather than keep his current therapists and attend the same preschool. I'll explain how we came to this decision in another post.

Our first meeting went rather well! Although, Nathan doesn't officially transition for another six months, we have a preliminary IEP in place and our school district authorized all of the services and supports our family was looking for! By law, we have to go back to the table in a few months to finalize the plan for the 2012 school year, but I don't anticipate much changing.

During my seminars, I learned a lot more about the role of the Parent Member on the CPSE and CSE committees. A Parent Member is required by law, and serves with both committees, unless the family signs a waiver requesting the person not be present. A Parent Member is literally just that ~ a parent who is also a member. This person brings another perspective to the team tasked with making these decisions ~ we've been there! We're not advocates for these families, but help them understand the process and ask appropriate questions during the meeting when they sense trouble or frustration on behalf of the families.

It's very difficult for school districts to find trained Parent Members, who are willing to volunteer at the school district during the day. Knowing the value of personal relationships, I stepped-up and am now certified by the State as a Parent Member and approved by our school board to participate in meetings.

I was scheduled for a full day of meetings last Monday, and then Nathan got the stomach bug, so I was unable to attend. I'm now scheduled for other upcoming meetings and am looking forward to not only helping families in my community, but also Nathan.

An Act of Desperation...

2011-02-09T16:38:00.004-05:00

Sunday morning Nathan woke up at 5:00am vomiting. The poor little nugget was so sick, he literally slept on me all day and slept all night. No playing. Nothing. He also wasn't interested in eating; a yogurt was about it. When you're a little peanut like Nathan, not eating is troubling, but not half as troubling as when Monday came and he ate nothing but a yogurt and fruit and then Tuesday when all he would eat was some toast, apple sauce, and half a yogurt. Three full days with little food was really unsettling. He looked so pale and tired. It was breaking my heart. I tried everything! My kitchen was seriously a little restaurant and Nonni even brought food over. All his favorites ~ even ice cream. He just didn't want to eat. His little belly was so sick. Our saving grace was that he was drinking, so he wouldn't get dehydrated. He wasn't alone. Daddy was also very sick, Mommy was sick, and so were the majority of his little friends at school.

Last night, we were desperate for Nathan to eat something, so Danny went to Wendy's and bought him french fries and a milk shake. To most of you, this isn't a big deal, but to our family it is. I'm dead set against eating fast food at McDonald's, Burger King, or Wendy's (among other things), but we had to give the french fries a try. Nathan also loved milkshakes over the summer, so we thought we'd give that a whirl too. As much as I wanted him to eat something, I was secretly happy when he took one bite of those fries and threw them on the floor! And, spit up the shake after two sips.

Today's been a little better. He's eaten yogurt, toast, Kixx (I think that's how you spell it. I don't buy this cereal. He ate it at school.) and some of his lunch. We're about to eat some lasagna Nonni made for us - yum! We'll see how he does. I have pasta and sauce too. If those don't work, I'll try a few other things. I'm hoping his appetite will return with a vengeance! I'm sure he has some weight to put back on.

These are some fun pictures from school the past few weeks. Nathan gets tired toward the end of the day and has fallen asleep a few times. hehehe

A Full Bucket

2011-02-03T14:54:00.004-05:00

Our book club is reading the book: How Full Is Your Bucket. It talks about the benefits of being positive in as many moments in life as possible and how each encounter is an opportunity to fill our own buckets and those of others. It's definitely worth a read. Nathan's beautiful smile and his little giggle fills my bucket every minute of every day. Just this morning, I happen to be making some homemade blueberry muffins while Nathan was in his toy room watching Mickey Mouse. As soon as the batter was put together I went in to check on him. Look what I found!I hope you can make out what's happening here. Nathan rocked himself right over! Thank God that exercise ball was there or he'd have gone completely over. Funny thing is, he never fussed. I have no idea how long he was stuck there watching television. lol. I'm still laughing about it!

So what else have we been up to? Well, we've been snowed in for two days, so we've been playing in the snow, coloring, playing with play dough, watching movies, eating pasta, singing into turkey basters and just hanging out!

Nathan also got a super cool birthday gift from his Aunt Charly and Aunt Domenica last week. Look at this!! His first (and last) Harley! :-) Now, he can be just like Daddy! He's actually just a hair shy of reaching the pedals, but keeps trying and hopefully by Summer, he'll be ready to bring his new ride around camp!
I have to end with this picture ~ I just love it! Daddy must have taken it because I happen to find it on the camera. Nathan and Grammy! So sweet!

You Are Three, But How Can That Be?

2011-01-20T15:20:00.041-05:00

Parents of a three year old? How can that be?
It was just yesterday,

that God entrusted Nathan to thee.

He's as cute as a lamb and as daring as a lion.
His cheese face will stop ya, without even trying.

His hugs are the sweetest and kisses divine.
He loves to ride horses, play music, and sign.

Pasta and pizza he loves to eat,

but not when compared to his favorite

ice cream treat!

He watches Mickey and Manny, and lots of Elmo,

but Choppers his only true aficionado!

He says dada, opper, izza and ool

we know what he's saying and think it's so cool!

He's happy and healthy and strong like an ox

He loves his weebles, his books,

and stacking his blocks.

He's our buddy, our bubba,

our bean, and our Nay Nay

He's the most awesome son and he's celebrating a BIRTHDAY!

Nathan's big day started with some yummy Mickey inspired pancakes! He loved them! We also took Nathan to see his very first movie ~ Walt Disney's Tangled! We weren't sure how well he'd do in the dark or in the loud environment, but he was fine! He was mesmerized by the big screen and couldn't get enough of the popcorn and Sprite we shared! The only problem was it happened to almost be nap time and he ended up falling asleep. We enjoyed the movie and can't wait to take him back!

We also celebrated Nathan's birthday with a family gathering. This party was all Elmo! We enjoyed pizza and a creamsicle cake!

This blanket was handmade for Nathan from the Harris and Eglin family. He loves it and now sleeps with it in his crib. It's definitely coming to camp this summer!

We'd like to thank everyone for thinking of Nathan and celebrating with us. We certainly brought his third year in with a BANG!

Christmas ~ Celebrating Our Savior's Birth

2011-01-17T12:09:00.010-05:00

This post is late, but Nathan's inaugural trip to Disney was so cool, I had to post about it! We had an amazing Christmas season filled with the love of family, silly projects, Santa and amazing food!We began this years' Christmas celebration with my side of our family. Our family is growing so large that we decided to take our annual celebration on the road! We enjoyed an entire day together at the beautiful Edison Club. The kids opened gifts, created their very own snow globes, played Wii, listened to music and had an all around great time! Garbage trucks were a huge hit this year!

Nathan created a Handy Manny snow globe. Some of the other globes included a farm theme, horses, a winter theme, an ocean theme, and dinosaurs! They were all super cool! It was a fun and easy project and the beauty was that each child was able to make the globes their own. Nathan loves watching Handy Manny and his tools on Disney, so the theme was perfect! This is a collectors item now and we'll be enjoying it for years. We'll definitely being doing this project again.

We spent Christmas Eve with with Aunt Sandy and Danny's side of the family. Guess who stopped by for a visit? The BIG guy ~ SANTA!! He brought Nathan new Sesame Street toys. We didn't even send him a letter this year, but he knew just what Nathan liked. He's pretty amazing.

We always have a great time with Aunt Sandy and the family. They're all a bunch of big kids and we love that! Not to mention, she's one of the best cooks I know and always goes above and beyond to celebrate Christmas. This year, Danny and I worked together and brought a Happy Birthday Jesus cake! Not bad for our very first two tiered cake! We've never made a bow before and working with fondant is a really new adventure for me. It was fun working on this together.

Aunt Sandy wore a hat that sang and danced! It freaked Nathan out! Not in a bad way, but he was super curious. Who wouldn't be?

Nathan was so fun on Christmas morning! He loved opening gifts and playing with one of his favorite toys ~ a dancing and singing Mickey Mouse! The below video was taped just after he opened Mickey. As you'll see, Mickey kept invading Nathan's space. At one point, Nathan literally fell over trying to get out of his way, but after a while he just couldn't take it anymore. :-)

Nathan received so many fun and thoughtful gifts. For our memory ~ Grandpa gave him a kitchen, Grammy brought him a trampoline! You should see this kid jump now! He's a pro!! Mommy and daddy bought him a train table and train with lots of Chuggington trains from Aunt Kathy. Did I mention the trucks? He loves his trucks and we now have a parking lot full! :-) What a blessed little boy!

Celebrating Nathan: The Final Disney Chapter (Part VI)

2011-01-12T10:15:00.012-05:00

We spent the remainder of our family's ~ Celebrate Nathan Vacation, at the Islands of Adventure in Universal Studios.

Nathan had a blast in Seuss Landing and checking out the dinosaurs in Jurassic Park. All-in-all it was a fantastic and busy trip. We only scratched the surface of the parks and look forward to returning in a few years.

Nathan had fun dancing with his Grammy and a few friends to some cool music!

Up next ~ Christmas and Nathan's birthday and Elmo celebration! Following that post, I'll get serious and discuss Nathan's transition, the various trainings I've been taking, and my newest venture into understanding everything there is to know about special education services in New York.

Let There Be Light!! (Part III)

2011-01-07T06:22:00.010-05:00

The remainder of our Nathan celebration was spent at Epcot Center, Hollywood Studios, and Islands of Adventure in Universal Studios. Each park has its own flavor and fun! Nathan loved meeting all his Mickey Mouse Club House friends again, enjoyed the Nemo and Toy Story rides, and Christmas light extravaganza! Wait till you see the lights! Amazing!

HUGS
HUGS AND MORE HUGS!
Nathan gave Goofy, his signature dog pound - no hugs! lol Very appropriate little man!

When darkness set up Disney's Hollywood Studios, the magic began! There were literally millions of lights lining the streets of the park. I can't even imagine the work that went into putting this show together. Way to go Disney! Make sure you watch the video. It was so cool to be right in the middle of this show. Nathan was mesmerized!

There is so much to see and do at Walt Disney World, it's impossible to do it all in one trip. We didn't even scratch the surface of the parks or Orlando in general. We'll be returning to Disney in a few years. I'm sure this will become a Nathan favorite and life long destination location for our family. We're ok with that! We enjoyed going on the rides too!

A few other favorite pictures from this day.

Up next ~~ Seuss Landing, Jurassic Park, and dancing through Islands of Adventure!

Celebrating Three Years of Nathan (Part II)

2011-01-04T06:35:00.009-05:00

After leaving Chef Mickey's, we took the monorail to Magic Kingdom. Nathan's really into trains these days, so he loved this ride!

As soon as we entered the park, we were greeted by Pinocchio and then the infamous Disney Princess Castle! As we approached the Castle, we were entertained by the Magic Kingdom Welcome Parade, on Disney's Main Street. It featured all the Disney characters, fun music, and a conga line!

As we approached the castle, we watched the Disney Princess: Where Dreams Come True performance. It was very cute.

As this performance concluded, it was time for the Walt Disney Holiday Parade, which was an addition to their regular lineup for the Christmas season. There was so much going on, that we never actually ventured into the park for two hours after entering the gate! These are pictures from both parades.

Once we entered the park, it was all about the rides! Unfortunately, it was after noon and Nathan had fallen asleep as we were waiting in line for It's A Small World. We knew this would happen, so we decided while Nathan was asleep, we'd go on the grown-up rides. It's very difficult to take pictures on the rides in Disney, but I was able to snap a few. These pictures are from It's a Small World, which features dolls in traditional garb from all over the world and then a few from the Winnie The Pooh Ride.

As darkness set upon the Kingdom, we were blown away at the beauty of the lighted Princess Castle.

We ended our first day rather late and Nathan was exhausted!

Celebrating Nathan (Part I)

2011-01-02T07:32:00.010-05:00

Happy Birthday Nathan!!!!

Today, is your third birthday Nathan! This past year has been filled with a lot of fun and new experiences for you and our family. This years' birthday celebrations will reflect the characters you have grown to love over the past year ~ Mickey Mouse & Elmo!

Our family, including Chopper and Grammy, began celebrating your 3rd birthday on a long drive to meet your newest best friend at Walt Disney World, in Orlando, Florida ~ Mickey Mouse!

Under normal driving conditions, it would have taken us about 20 hours to get there, but we ran into a huge snow storm and were delayed for a day in North Carolina (not far from where Grandpa lives). We left on Christmas night to try and avoid the storm, but it spanned the entire east coast. We also wanted to leave at night so that you'd be asleep for a most of the first leg of our drive. Mommy brought movies, games, books, your Buddy the Dinosaur, and coloring books and crayons to keep you busy during the day. We packed all sorts of goodies, your favorite pear juices, and hit the road! You were great in the truck and we made it to Disney in two days instead of one.

Our first celebratory event began with Chef Mickey's at the Contemporary Resort in Walt Disney World. We almost didn't get the chance to have this experience. When I called to make the reservation, the dining experience was full. It seemed as if nothing I did was going to change this fact, but your mommy doesn't take no for an answer (especially on your birthday). It took a few letters and our reservation was secured in about two days! :-) Anything for you Nathan!! It was really important to mommy that you had a more intimate experience with your Mickey Mouse Club House friends and the folks at Disney made it happen. Thanks Disney!

We enjoyed the breakfast experience and the food was terrific! Our favorite part of the meal was the Mickey Mouse shaped waffles; they were super cute and very tasty. All of the Mickey Mouse Club House characters came by for a visit and delivered your birthday cake!

Toward the end of the breakfast, the Disney Characters and all the guests participated in the celebration song! It was super fun and our day had just begun!!

Elmo Visits the White House (and some other stuff)

2010-12-18T06:00:00.007-05:00

It's extremely rare when I'm able to combine some of Nathan's favorite things with mine, but this week, on my birthday, Elmo visited the White House to talk about healthy foods in school!
As you might imagine, Nathan was elated to watch his favorite character talk with Chef Sam. I love this level of creativity in policy delivery. It's genius actually. Look, I've put it in Nathan's blog and you've just watched it. That's preciously what you want when you're marketing your victories in policy making.

There isn't much to report from the past week. Nathan's been sick the entire week and we've not taken him out to do much of anything in this weather. He even missed his last two hippotherapy sessions because of the cold. Last Sunday, we were scheduled to have brunch with Santa, but Nathan slept through the entire window of opportunity, which was fine. It's always better that he rests when he's not feeling well. We'll have brunch with Santa another time.

He did manage to make some Christmas cards for some special people in his life.

This is Nathan's favorite Christmas book. It was a gift from his Occupational therapist last year and we must read it and open the flaps 10 times a day! :-)

In our next post, Christmas snow globes and an update on Nathan's transition from Early Intervention to CPSE. Mommy's taking on a new role.

Ornament Cupcakes Sprinkled With A Few Tears

2010-12-11T07:54:00.012-05:00

The Christmas season is upon us and we're busy preparing for our multi-day traditional celebration and beginning a few new ones. Last week, while Emily was creating her Wishing Spool, she was having a hard time figuring out what she wanted and said to me, "Aunt Kandi, Christmas isn't all about presents. It's God's birthday you know." I can only imagine the smile that crossed my face at that moment and just thinking about it now brings joy to my heart. I said to her, "you're right Emily and this year we're going to make Jesus a birthday cake." And, that's exactly what we're going to do! What an amazing little girl.

Danny has been craving funfetti cupcakes, so this week we made Christmas tree ornament cupcakes. I made the cupcakes and the ornament tops out of fondant and Emily was the official decorator. She did an amazing job! She used practice sheets before attempting to pipe the frosting onto the ornaments and if you've ever used fondant, you know that you have to use water to attached anything that's not frosting. That means, Emily had to use a small decorating brush to attach each of her Christmas tree lights onto one of her cupcakes. She learned how to properly hold a frosting bag and make stars.

Speaking of ornaments, each year we buy an ornament that reminds us of something special in Nathan's life. This year, we welcomed two new additions to our collection. The first ornament was purchased during our trip to Sesame Place and the second while we were volunteering for the Make A Wish Foundation.

Our Christmas season has also been sprinkled with a little sadness. Nathan is almost three and doesn't "get" Christmas or know who Santa is. The moments are fleeting, but they serve as a reminder that our son will always be different and struggle to understand life. We're sad that he's missing out and so are we. On the flip side, Nathan might just believe until he's 15, and we'll have many more years of genuine Santa Claus fun during the season.

As difficult as it may be at times, we can't allow Nathan's challenges bring sadness into our lives. It's not sad ~ it's just a temporary state of being. This year, Nathan's enjoying dancing to Christmas music (he loves the Chipmunk's songs) and tomorrow he'll have brunch with Santa. As I write this, he's dancing around the kitchen to Jingle Bell Rock. Our life is just as it should be ~ perfect in every way!

Thank you for stopping by. We hope you're enjoying your Christmas season.

Holiday Kick-Off, Make-A-Wish & Photo Shoots

2010-12-06T17:06:00.011-05:00

Nathan and I officially began the Christmas season with some Black Friday shopping at Toys R Us! Don't judge, but Nathan was the only child in the toy store at 5:30am and he was an angel! He sat in the cart and played with a truck we bought for one of his cousins the entire time. Danny had to work out of town and that morning, so Nathan and I hit the sales, enjoyed breakfast, and sang Christmas songs all morning. He is such a great kid and I'm so lucky that he's so easy going!

After shopping, Nathan had his official Christmas card photo shoot. Here's a sneak peak ~ isn't he adorable?!! Santa's little helper....

I won't get away with dressing him in these outfits much longer, so I took advantage of it! These are actually his Christmas Eve jammies. I'll post more pictures after the Christmas cards have arrived.

Following a well deserved nap, Nathan and I headed to my families Holiday Kick-off party! Nathan made his 2010 Wishing Spool and his hand print Santa card. Both are keepers! We've decided to do yearly Wishing Spools. It will be fun to see how the wishes change from year to year. Next year, I'll paint them green and use red ribbon.

(Notice the card is backwards? Yeah, that was my fault! lol I turned it over to write his name on it and forgot to turn it back around. Oh well, it just makes it that much more special!)

As I mentioned last week, Nathan and I participated in the Make-A-Wish Foundation's, Adopt an Angel campaign yesterday with friends. For those of you who don't know about the Make-A-Wish Foundation, it "grants the wishes of children with life-threatening medical conditions." I am truly blessed to have so many friends who have a genuine compassionate heart for others and believe in giving back.

We also had another photo shoot with Emily. I can only share a few pictures because they're also for Christmas.

It's our sincere hope that your Holidays are a blessing....

Counting Our Blessings

2010-11-28T09:46:00.006-05:00

I know this may sound like cliche', but this is the really the most wonderful time of the year! It's that time of year where we count our blessings, think of others first, and spend time with our families. We also recognize that it's a difficult time for many. As is tradition, we delivered meals on Thanksgiving morning. This year, we welcomed two new additions to our crew ~ Nathan and my friend Maria's daughter Sarah. Nathan served as the official door knocker and he did a great job! It was quite funny to see the surprised faces of those who opened their doors to this little guy in his wagon! Not just any kid, but Nathan Terry. An adorable little boy with Down syndrome delivered their Thanksgiving dinner because he and his family are so thankful for their blessings and believe in giving back by serving of others.
This year, I also spent time volunteering at the Capital City Rescue Mission for the homeless. What a wonderfully humbling experience. I've told the Executive Chef that I'll return to help with their Christmas dinner and can't wait! I'll be adding this organization to my regular volunteer activities. Nathan and I will also be volunteering for the Make A Wish Foundation a week from today! We'll be helping with their Adopt an Angel campaign in Wilton Mall with a few of my friends.

I'm thankful to now share these experiences with Nathan.

In preparation for Thanksgiving, Nathan and Emily made some yummy Pilgrims hats. They had a great time dipping their marshmallows, liking their fingers, and eating cookies! It was such a simple, fun, and delicious idea!

Nathan spent Thanksgiving afternoon at his Grammy's, where we enjoyed dinner and the company off family.

We hope that you had a blessed and Happy Thanksgiving as well....

The Doorway to the Soul.....

2010-11-17T05:19:00.008-05:00

Some say, that music is the doorway to our soul. Others contend it's the medicine of the mind. Either way, the influence and benefits derived from music are immeasurable.

Like most children, Nathan loves music! We are a musically inclined family. I grew up playing musical instruments and singing in choir, Danny listens to every musical genre available, and we attend Broadway musicals like it's our job! :-) It's not unusual to find us having a kitchen dance party while we're preparing dinner or doing dishes. And, we love singing silly songs for no reason at all.

Nathan loves to dance, sing, and play with toys that make music. He has loads of musical instruments: a floor and upright piano, a guitar, musical bath toys, electronic and standard drums and much more. If Nathan becomes upset, is struggling with an activity, or just needs help learning something ~ we use music.

We currently use music when our unruly toddler doesn't want to brush his teeth, have his diaper changed, or sit on the potty. We use it to help Nathan learn his ABC's and letter sounds and increase his language skills. We sing all the typical toddler songs and a few that we've been taught by his therapists. Songs like his new favorite: Twinkle Twinkle Little Star, Itsy Bitsy Spider, Wheels on the Bus, Old McDonald, Open Shut Them, On Top of Spaghetti, If You're Happy and You Know it, and Amazing Grace (just to name a few). We also make up our own songs ~ we have a song for brushing his teeth and one for going on the potty. Additionally, we always try to incorporate sign language into our songs.

As a result of the positive impact that music has had on Nathan's life, it made sense to place him in a regularly scheduled individual music therapy session. That process was easier said then done, but he now receives music therapy at home once a week and is really enjoying it. They sing, play musical instruments and work on increasing his language skills. As you'll see from the below pictures and the video that accompanies this post, his therapist also works on increasing his muscle tone. There is overlap in all therapy sessions at this stage of development.

Nathan will have the opportunity to receive these types of sessions at home until next August. Once Nathan officially transitions into CPSE, I'm not sure if he can continue to receive music therapy. Good thing is, I have about nine months to figure it! Until then, we're going to keep getting our grove on!

Our Little Cowboy

2010-11-14T07:34:00.006-05:00

For the past few months, Nathan has really been enjoying his hippotherapy sessions (physical therapy on horseback). He and his horse Babe, have become fast friends. It's amazing to see the improvements in core strength that have been made since the beginning of his sessions.

Take a look at Nathan's posture in this first picture. Notice how poor it is? He is literally sitting at an angle. That's what they're working on correcting. The goal is for Nathan to have enough core strength to sit up straight and the therapist uses a lot of different techniques to accomplish her goals. As you can see from this picture, they've turned Nathan sideways to give him a little added challenge. Notice his posture? Not so great. He's not yet strong enough to sit completely backwards, but it's coming. But look at his posture here ~ he's sitting up great and even holding on properly! Way to go Nathan!! You should also be able to see he's wearing a special belt. His therapist holds on to this belt from behind, which help him to remember to sit up straight and stay on the horse. He's still a little boy who likes to just jump off things without thinking. Yeah, he tries! When he's "all done." When the weather is nice, they take Nathan and Babe outside the barn, which is a nice change of scenery and it presents Nathan with an added challenge ~ uneven ground. Although Nathan absolutely loves riding Babe, it's very fatiguing and he's not a fan of his riding helmet. It's bigger than his little head!

Funny story ~ a few weeks ago, Nathan and Babe were outside and the therapist stopped walking, which happens frequently (it's the communication component of the therapy). The therapists and I began talking and after a few minutes, Babe scraped his left foot twice on the ground. The therapists started to laugh because this was Babe's way of saying, "let's go!" However, before they begin, they make Nathan say, "go" or have him do their sign, which signifies go (he taps Babe twice). When they asked Nathan to say "go," he imitated Babe and rubbed his left foot twice along the saddle! I didn't even know he was paying attention! It was super cute and we all got a chuckle out of it. At the conclusion of each session, Nathan feeds Babe a treat of carrots and apples. He's always a little skittish at first when his big horse comes in for his snacks, but calms after a minute and enjoys the experience. Nathan's sessions end in mid-December and won't continue until Spring. He'll miss Babe, but I'm glad he won't be riding in the winter!

Nathan, Daddy came to see you ride Babe this week and you kept waving to him and throwing both arms up in the air like when we do "hip hip hooray!" He was so proud of you up on that big horse!

Halloween (Part III) ~ The Final Chapter

2010-11-08T16:35:00.006-05:00

On the actual day of Halloween, we attended a great party hosted by aunt and uncle, for all the kids; big and small. It was a great party! We played Halloween BINGO, made spider lollipops and finger bats, read a Halloween Mickey Mouse story, listened to some festive music and enjoyed lunch.

I'd love to show you all the pictures!!! I have tons of them, but I'm not so sure that Wonder Woman, or the rest of our cast, would appreciate their pictures on Nathan's blog for all to see! When I turn Nathan's blog into a book, I'll be sure to add them!! I really want him to see how awesome everyone looked!! Aren't these the cutest kids!!!!

Yes, even Mommy & Daddy got into the spirit! We really wanted to compliment Nathan's costume and I think we did a great job! Every little dragon needs some cave parents!

We have such a competitive family ~ next year we're having a costume contest! The pressure is on!!!

We ended our day in Oz ~ the Wizard of Oz that is. We stopped by to pay a visit to the cutest Dorothy this side of Kansas! And, would you look at that ~ Nonnie was there too! What a great day!

So cute!

The Great Pumpkin (Halloween Part II)

2010-11-02T08:06:00.006-04:00

On Halloween morning, we enjoyed breakfast and Nathan had his first experience with pumpkin carving! We had two pumpkins and given my Type-A personality simple pumpkin faces just wouldn't do. I had two ideas and Daddy acquiesced by free handing two of Nathan's favorite characters ~ Elmo & Mickey Mouse!!

As you may suspect, Nathan wasn't the biggest fan of the slimy pulp and seeds inside the pumpkin! We all thoroughly enjoyed watching him have this new experience.

In this picture he's asking me for help! We was a little trooper and as grossed out as he got, he kept going back for more! Way to go Nathan!!

I really have to tip my hat to Danny, he did a great job free handing these two designs. The only tools he had were a picture and a single cutting tool. He doesn't even recall the last time he carved a pumpkin! Way to go Daddy! Next year, I'll be more prepared with instructions and better tools.

Roaming the Earth....(Part I)

2010-11-01T08:26:00.005-04:00

Over the summer, Nathan began to love dinosaurs. We have two enormous dinosaurs at our summer camp and every time we drove/walked by them, Nathan would roar. It's super cute! It made the selection of his 2010 Halloween costume easy!

Our first stop on our Halloween Weekend Tour was a party at the New York State Museum. We arrived a little early, so decided to take Nathan into the museum and visit a real dinosaur! We also took him on a carousel ride and then hit the party!

It was our first Halloween party at the Museum, so we didn't really know what to expect. It was ok. The party was planned for ages 2 to 10, so their was one activity for each age group. We helped Nathan complete crafts that were for the older children because the only activity for him was a coloring table. He wasn't really into the crafts or coloring, but we participated anyway and he made some really cute things.

This is a spooky tree! He also made a spider. Both crafts served as our Halloween dinner table centerpieces.

He also tried on this really cute pumpkin costume.

Halloween Cupcake Night!

2010-10-27T20:56:00.005-04:00

It's official! It was Halloween cupcake night in the Terry house! We listened to Halloween music on Pandora and decorated one of the best cupcakes I've ever eaten! And, that says a lot because I'm not really a cupcake fan. I was fortunate enough to be given a fabulous cupcake recipe yesterday, and an icing recipe today from a local cake shop. Just in time to add our pumpkins, witches and head stones!

It's so much work putting these fun projects together, but worth every minute! I went to three different stores today looking for cupcake decorations, before I finally found some at a specialty candy/cake store near my house. Apparently, I'm a little behind the 8-ball with buying simple Halloween "edible" decorations ~ the stores were cleaned out!

I wouldn't call the first batch of cupcakes prize winning. This recipe isn't like any other I've come across, so I was a little out of my comfort zone and had to wing it. Round one went into the trash! I filled the cupcake liners with way too much batter and cooked them about one minute too long. No problem ~ I've made lots of batter! The second batch were heavenly! These cupcakes are as delicious as they are adorable. Nathan and Emily really did a great job with them and had a lot of fun in the process. We even tried our hand at a little edible spray painting for effect! It was really cool!

Emily is wearing Nathan's hat in this picture. He refused to wear it, so she did! It looked so adorable on her. After she went home, Nathan found the hat and kept putting it on! I wasn't able to snap a picture (imagine that) but I will!

I love these moments.

Down Syndrome Awareness Month (Part I)

2010-10-25T07:15:00.003-04:00

October is Down syndrome awareness month and many in the Ds community are blogging about it everyday, in a campaign called 31 for 21 (31 days for triosomy 21, the medical term for Ds). I'm not one of them. However, I didn't want the month to go by without acknowledging it's importance in our life.

When Nathan was born, it was my experience that all the available literature either painted a rosy picture of having a child with Ds, or provided us with a "worst case scenario" glimpse into his world and ours. I've come to learn that ~ there is no substitute for personal experience and like every other child, each is a joy and each presents their own challenges. Our life isn't easy ~ my schedule is insane but how's your life going? Is it easy? Are you busy? We all have a choice ~ to look at it through rose colored glasses and make the best of it, or be consumed by the worst case scenario.

With this said, there is a reality that a family and a child with Ds must confront ~ the possibilities. The good and the bad. I'd like to give you a glimpse of what that may be ~ a glimpse into our journey. Some bridges we've crossed ~ others are yet to come.

Individuals with Down syndrome may have a few or all of the following characteristics:

Flattened nose / flat facial profile (90%)
Upward slanting, almond-shaped eyes (80%)
Low muscle tone / hypotonia (80%)
Increased flexibility (80%)
Excess skin on back of neck (80%)
Small, simple ears (60%)
Poorly developed 5th finger (60%)
Small head
Brushfield spots on the iris of the eye
Skin folds of upper eyelid covering inner corner of the eye / epicanthal folds
Short, broad hands with short fingers
5th finger curves inward
Single crease on the palm of the hand
Wide gap between 1st & 2nd toes / sandal gap
Short stature
Fusion / syndactyly of 2nd and 3rd toes

Medical Complications Associated with Down syndrome
Early-Onset Alzheimer Disease (11% by age 50; 77% by age 70)
Dry, Hardened, Flaky Skin (75%)
One or More Abnormalities Present at Birth (50%)
Heart Defect Possibly Requiring Open Heart Surgery (40-60%)
Thyroid Disorders (up to 50%)
Obstructive Sleep Apnea / Pauses in Breathing During Sleep (33%)
Atlantoaxial and/or Atlanto-occipital Instability (10-30%)
Blockage in Stomach or Intestines Possibly Requiring Surgery (12%)
Autistic Disorder (5- 11%)
Seizures / Epilepsy (10%)
Increased Risk of Childhood Leukemia (2%)
Cataracts ~ Vision Problems
Hearing Loss ~ Ear Problems
Breathing Problems
Increased Susceptibility to Infection
Increased Susceptibility to Dental Problems
Increased Risk of Autoimmune Disease
Problems with Muscles & Skeletal System
Tendency for Obesity / Weight Gain
Males are Unable to Reproduce (this is debatable)
Increased Risk of Testicular Cancer in Males
Intellectual Disability & Developmental Delay for Individuals with Down syndrome
Variable Range of Mental Disabilities can range from Mild to Moderate
Mean (Average) IQ of 42 Range of IQ from 8 to 67
Developmental Delay in Achieving Milestones
Need for Physical Therapy
Need for Occupational Therapy
Need for Speech Therapy
Need for Early Intervention & Case Management

Long-Term Prognosis for Individuals with Down syndrome
Participate in Community Sports, Activities, & Leagues
Participate in Special Olympics & Therapeutic Recreation
Inclusion in Regular Classes
Complete High School
Attend College or Post-Secondary Education
Employed Competitively
Employed in Workshop Setting
Live Independently
Live in Group Home
Have Friends
Have Intimate Relationships
Get Married
Drive
Life Expectancy (age range of 50s-60s)

Persons with Down syndrome are ~ "More Like Other Children Than Different"

Thank you to Mommy With My Special K's for this list. It originally came from NDSS a few year ago, so thank you to them as well!

Picture of the Week!

2010-10-17T19:10:00.004-04:00

I've been meaning to give an update on hippotherapy and have lots of pictures to share. Nathan now has his own riding helmet, which is bigger than his head and they've been doing some fun activities that are really helping Nathan become stronger. I'll post some specifics in the coming days.

Danny took this picture of Nathan today and I just had to post it! He climbed into his toy box and decided it was a nice place to play with his toys!

This & That

2010-10-12T14:59:00.007-04:00

Last week, we took Nathan shopping for his Halloween costume. It's funny how much I can stress over little things like Halloween costumes. The choice for this years' costume was actually really easy, once Nathan provided us with a great clue! Tracking it down was another story.

Off we went to the costume stores and Nathan ran into some pretty shady characters while we were out. We were actually surprised at how well he handled these scary looking scenes. You can't avoid them, they're in all the stores. Nathan thought this clown's nose was pretty spooky and he wasn't a big fan of him.

Nathan gave this half box of bones a high-five and nearly knocked him right over! We thought we were paying for that one! Daddy's fast too! He caught it before it hit the floor.

This weekend, we closed up camp and took Nathan to a local pumpkin farm for a little fun. Nathan met his second-cousin there and they tooled around a little together. Some of those pumpkins were bigger than these two little cuties!

Nathan and Daddy enjoyed a crazy cow ride! It wasn't one of those rides, that's on a nice track, these cars are attached to a pretty fast golf cart and everyone got there $1 worth!! It was also one of those rides that you can squeeze into but may not get out of! It was tight quarters!

Nathan ended his day, by riding this big bad cow (while Chopper looked on)!

Thanks for stopping by!