WELCOME TO NATHAN'S BLOG!

Nathan is Hebrew and means "gift from God" - we couldn't have been more blessed than to have been chosen as his parents!

Thank you for keeping up-to-date with Nathan. We hope you visit often and enjoy experiencing our son's journey as much as we do. Please feel free to leave comments.

We love hearing from everyone!!!!

Monday, December 28, 2009

Our Christmas Celebration

Santa stopped by!!!
Our family had a wonderful Christmas and made memories that we'll cherish for years to come. Nathan's second Christmas was really fun! He was into playing with his new toys and opening his gifts.

Oh, the gifts! It was really sweet to see Nathan so into opening his gifts ~ when he'd finish opening one gift he'd sign "more" for another.
Nathan is not a fan of hats but he looks so cute in them!
He loved the wrapping paper...

but not as much as he loved his new motorized quad! We can't keep him off it! I had no idea they made them so small.
He's mastered how to make the quad work but steering is another thing. He pushes the throttle and ends up just running into things and holds it until we move him. We're working on it!

Nathan is always up for a challenge ~ backwards on the second day! It's time for a helmet.

Saturday, December 26, 2009

Rock-A-Bye-Baby

One of the first things we did before Nathan arrived in our family was buy a nice rocking chair. We've rocked Nathan to sleep from the day he was born, and it's still one of my favorite parts of the day.

About a year ago, Nathan's cousin, gave him her little rocking chair and he's never really thought much of it ~ until today!

I happen to be in the living room downloading Christmas pictures when Danny called me over to look at Nathan in his playroom. What I saw was as cute, as it was funny! Nathan rocking himself to sleep ~ standing up!!

We're both standing there watching him and silently giggling about it, Danny says: "I think he's falling asleep." Yep, that's exactly what he did!! Out like a light!! haha He had a very busy Christmas day and was up late two nights in a row!

Christmas pictures and highlights to come. Hope you all enjoyed celebrating Jesus's birthday!

Monday, December 14, 2009

The Gifts I'll Treasure This Christmas

Most children write letters to Santa for Christmas, some even write short books, depending on how big their hand writing is or how long their list is! :-) Some of those children sent their letters to the North Pole while some tucked them under their pillow in hopes that Santa might just know what they want.

Most of these children will probably receive all that their little heart desires but there will be some that won't. I've been thinking a lot lately about those children ~ the children who today are sitting in orphanages with no mommy and daddy to love them, children who are in abusive families, children in families that simply can't afford gifts, and those battling life threatening illnesses. Although, it breaks my heart, it also keeps me humble and thankful for the blessings and "gifts" in my life.


This year the gifts I'll treasure most on Christmas can't be purchased from any store or come wrapped in pretty paper. They're so much better!!

I'll treasure the gift of waking up on Christmas morning next to the most wonderful husband in the world. I'll treasure the gift of my son and experience the joy of watching him open up his gifts. I'll treasure the gift of my niece; I can hear her little voice already when she calls me on the phone, "Merry Christmas Aunt Kandi ~ When are you coming over? Santa came!!"


I'll treasure the gift of family as we gather together for Christmas coffee, with our singing mugs, and again for Christmas dinner as we share our peppermint punch.


I'm going to treasure these gifts and much more as we celebrate one of the greatest holiday of the year ~ the birth of our Savior, Jesus Christ. The reason for the season....May your Christmas be filled with the spirit of Christ and His blessings.

Double Trouble

As I mentioned in a previous post, Nathan wasn't feeling well last week ~ we thought it was the H1N1 booster. Turns out, he has a double ear infection. When I took him to the doctor last week and they shared this delightful news with me, I decided since this was ear infection number three since November, that was quite enough. We had to do something else.

Nathan never experienced a single ear infection until two weeks after he began school and it's been hanging around ever since. The pediatrician informed me that the normal course of treatment is: "once a child has six ear infections in six months they recommend a child see an ENT." We're not waiting.

I explained my concern that Nathan's ear canals are very small because of his Ds, and waiting could cause permanent hearing loss and that's just not an option (if we can help it). He's on his last round of antibiotic and we've scheduled an appointment with the only pediatric ENT in our area. Nathan may need tubes in his ears ~ we'll see in January.

On another note, Danny took Nathan to the doctor again Saturday because we found a lump on his neck. When I spoke to our nurse, she thought it was just a swollen lymph node because Nathan's been sick, but wanted to have the doctor check it to be certain. We explained the lump was soft and movable and when the Doctor saw the lump he agreed. Nothing to worry about! YEAH.

Nathan is getting to the age where he needs to be tested for Leukemia, and Danny and I are on heightened alert. We're watching his balance, his infections, his sleep patterns, and much more. We'll deal with what comes but are praying like crazy God spares Nathan of having to go through this. It's our Christmas wish this year.

Saturday, December 12, 2009

Spit Happens! Will it ever stop? We've Found Something That Helps!

If you have a child with low muscle tone, including Down syndrome, than you know spitting up is a normal occurrence in your daily routine. Nathan is going to be two in January and I recently began wondering, "when is this going to stop?" Plus, this can't be good for his little body to be spitting up his juice and water every day (not all day).

I decided to speak to his pediatrician about this and if there might be some underlying health condition we were missing.

I explained to the doctor that Nathan doesn't throw up his food, just his water and clear juices (if he has too much). He said that because it appears Nathan is only spitting up the light clear liquids that there isn't too much to be worried about. Although, for our peace of mind he gave us a script to have a swallowing study done at the local Children's Hospital, but advised us to consult with our speech therapist first. Speech therapists are involved in the evaluation of these studies. Our speech therapist has seen this before and has gone with other families to have this test done and the diagnosis was ~ they'll grow out of it.

So what did we do? We're not taking Nathan for any invasive and unnecessary tests. We've taken another route ~ switched his morning juice to Yoga Italian juices. They are expensive but because they're so thick he doesn't throw them up! These juices are pure nectar's shipped in from Italy. You can pick them up at your local Italian deli and they are super yummy! They have lots of different flavors ~ pear, peach and apricot.
Not having Nathan spitting up every morning is a nice change for both of us. I won't buy the regular, organic or not, juices. They're also pricey and if they come back up, a total waste of money. Not to mention, how Nathan must feel having this happen to him. I wouldn't want to be sick every morning from drinking juice or water.

Nathan still has issues when he drinks too much water. We just try to monitor his intake and balance his need for fluids and the amount he can really take at one time. I also give him sparkling water. Life certainly is a great balancing act (thanks Dr. Seuss).

Wednesday, December 9, 2009

Picture of the Week!

Doesn't he look so happy to be wearing his beautiful white scarf that his Nonnie made him? Such a boy!!

Monday, December 7, 2009

The Hearing Test that Never Was and Other Updates


Nathan was scheduled about a month ago to get his annual hearing test and we had to cancel the appointment due to an ear infection (first ever!) and rescheduled for last week. The facility that where Nathan gets his test is about 35 minutes from our home and when you arrive you're required to check-in in another room, which is quite far from the actually office.

Because of this process we ended up being about 15 minutes late for our scheduled appointment. The receptionist checked us in and about 5 minutes later came back and informed us that because we were late we'd need to reschedule again! WHAT? I kindly informed her that that wouldn't be necessary because we wouldn't be returning after driving that distance and being delayed at their check~in counter. I'm going to call Nathan's ENT and see whether or not his office does these basic tests. I'm not overly concerned that we're a little behind ~ Nathan's not exhibiting any hearing loss issues.



In other news, Nathan received his second H1N1 booster on Friday, and as with most vaccines, he's running a fever, has a runny nose and some chest congestion. If we don't see any relief by tomorrow, I'll call the doctor.

This picture is of Nathan and his cousin while decorating our Christmas Tree last week.


Nathan is signing a lot of new words and yesterday he spontaneously signed, "I love you!" I was so excited!! He doesn't have the fine motor skills to bend his two fingers but he tries and it's adorable!!! I attempted to take some video last night but Nathan wasn't interested in performing. Nathan also said "popper" today!!! Which is his way of saying Chopper for our dog!!! He's going to be talking up a storm shortly, I can just tell.

Lastly, the Terry Family just purchased property to build our new house!!! We're over the top excited and are planning to begin construction in the Spring. It's going to take a few years because we're going to do most of the work ourselves. We're planning a beautiful Mediterranean style house with floor to ceiling windows and Roman columns! What's really interesting about this process is planning for the future ~ not just ours but Nathan's too and anticipating his needs as an adult is like sailing in unchartered waters. It's one thing to build a room for a child up until they're 18 or 20 but being conscious of the needs of our adult son is another story. It's important to us that if Nathan chooses to live with us, he has the little luxuries that we've come to cherish ~ walk in closet, his own bathroom, and a large bedroom. The design is now in the hands of our architech ~ we'll see what he comes up with. I'll be sure to keep you all posted on our progress.
It's time to give Nathan a bath ~ Have a great day everyone!

Wednesday, December 2, 2009

Picky Eater ~ Not So Fast....

Nathan has been very busy lately ~ his social calendar is amazing. So, we've been absentee bloggers once again! Let me give you a little update.

Nathan is beginning to become a fussy eater at dinner (not lunch or breakfast ~ just dinner). It's been going on for a few weeks now and I'm really anxious for him to move past it because I'm becoming concerned he's not getting the nutrition he needs. Dinner is our meat and veggie meal and he wants no part of it. He didn't even want food at Thanksgiving!!

What's interesting about this picky eating situation, is that Nathan isn't taking a "no thank you, I don't like that, bite." He's looking at the plate and determining it's not what he wants right from the onset and turning his head.

At first, I was making him a grilled cheese sandwich or anything he eat for that matter but then I stopped. I'm not really interested in allowing Nathan to control what he eats every day and I'm not crazy about him eating only a few select foods for dinner until he determines otherwise.

So, I've gotten creative.

My first move was to be stern about him eating what we are and that seemed to work ~ to a point (sometimes). I started making him super protein soy shakes with organic fruit to give him some protein and fruits. Really easy shakes and Nathan loves them! I've even frozen some for dessert.

Yesterday, the game changed. Because Nathan looks at his food and then determines it's not what he likes ~ I tried to hide the evidence and make eating dinner fun. What parents do to get their children to eat.



Monday, November 23, 2009

The Latest in Medical Research ~ Reversing the Learning Delay

There have been articles popping up all over the web about some exciting research happening at Stanford University, that involves the learning abilities of mice with Down syndrome.

Scientists have given genetically modified mice (that have three copies of chromosome 21) a drug that boosts the chemical production of norepinephrine levels that are responsible for memory and learning abilities and the study has produced positive results.

According to Laine Stewart over at the Examiner, "When the brains of these mice were examined under a microscope degeneration was evidence in the locus coeruleus, a region at the base of brain responsible for production of the norepinephrine, which promotes memory and learning in the hippocampus region of the brain. The genetically-modified mice were given drugs that boost norepinephrine levels and subjected to a memory test a few hours later. Without the drugs they performed very poorly, but were as successful as regular mice after receiving the drugs."

Study can be found here. Stewart's article is easier to digest.

I've known about this research for sometime and have been awaiting an update. Advancements in medicine, whether for a person with Down syndrome or not are exciting! But I've thrown out the caution flag here and am taking a wait and see approach. Like any new drug, especially one that can be considered unnecessary because it's not a life threatening ailment, it's up to the parent or person to choose what's best for them. If these drugs come to the market, families will have to make that choice. I'm not personally against anything that may provide benefits for Nathan but I can tell you this ~ he won't be the first one test driving the car. Safety will always be my first concern.

I'm thankful for those in the medical community dedicating their lives to research that has, and will, one day benefit Nathan. God bless.

Wednesday, November 18, 2009

Our Little Jokester!

You're going to totally love this little video! Danny has taught Nathan a little trick and it's so cute! I took Nathan to school last week and he started doing this to his classmates as soon as we walked it! I had to explain to his teachers what he was doing and they busted out laughing! They couldn't believe he was playing this joke on his classmates and they couldn't wait to test it out!

Nathan kept doing this at Grammy's birthday ~ we were laughing so hard we were all in tears! This kid is too cute for words! Enjoy. And, the next time you see him ~ watch out! :-)

Saturday night is dance party night in our household but because we were celebrating Grammy's big day we switched it to Friday this week. We also do a weekly dance party on Wednesday afternoons too when my niece is here. We all love to dance and we have so much fun!


Nathan made this great turkey yesterday at school! It is so cute!!! I know just what we're going to do with it ~ it's going to be the centerpiece for our Thanksgiving table! What do you think Grammy? Won't it look great with some flowers? We think so!

Friday, November 13, 2009

HAPPY BIRTHDAY GRAMMY!!

Have a great day ~ I'll see you later!!!
Love you,
Nathan
Happy Birthday to Cousin Alphonzo too!!

Wednesday, November 11, 2009

What's Up Doc?

Diagnosis ~ Nathan isn't sick anymore!!! He's kicked the ear infection and the cough is gone now too! School tomorrow and then Grammy's BIG birthday is on Friday!!!

We've had some really beautiful weather lately and Nathan visited the park yesterday with his Aunt.

Nathan has also resumed getting back into everything and giving Chopper rides in his dump truck!

Poor Chopper! hahahahaha He doesn't look happy at all! What a good sport he is.

Friday, November 6, 2009

H1N1 ~ The Mercury Connection

Hi all! It seems like forever since I've authored an update on Nathan ~ we've been very busy (ok, I've been very busy). These past few weeks Nathan's been experiencing some sickness and with the swine flu going around we've been on heightened alert and visiting the doctor almost weekly. I'm happy to report he's doing just fine and is just teething!

On Monday, we visited the doctor because Nathan was experiencing all of the flu like symptoms except for a fever. Please visit the CDC website for more details on what to look for. Turns out he had a nasty irritated throat and an ear infection, which was causing his congestion and discomfort. The H1N1 vaccine is almost impossible to get in New York. Nathan's pediatrician began a waiting list the Saturday before and two days later Nathan was number 352. We found out today that number is over 1,000.

While Nathan was at school, I received a phone call from his pediatrician, completely out of the blue. They had received 20 doses of H1N1 vaccine and the doctors determined Nathan was at "high risk" and that he should receive one of the doses. Problem was, it was the vaccine that contained the mercury. I couldn't make the decision and needed to call Danny.

I was devastated that we had to make this decision. Give Nathan the H1N1 vaccine and risk possible life long complications from the thimerosal (mercury), which is banned in New York for children under three. The federal government relaxed the requirements due to the outbreak thereby allowing doctors to administer these drugs to young children. If we chose to not give Nathan this vaccine, he'd have to go back on the list and there was no guarantee that he would receive the preservative free option. Seriously? I called my husband in tears. What a terrible decision to make ~ pick your poison.

We were both doing research when Danny came across an H1N1 clinic about 40 minutes from our house. The website said they only had the nasal mist and mercury injections. Nathan's too young for the nasal mist because it contains the live virus and the other option wasn't really an option at all. While I was picking Nathan up from school, Danny decided to call the clinic and speak to one of the nurses. It happened to be the right choice!

Danny explained our situation to the nurse and she put him on hold. When she returned she asked, "how fast can you get here? Can you come now?" Danny said we could. She said, "ok. We have a few doses of the preservative free vaccine but I can't guarantee it will last. So hurry." Enough said.

When we arrived they asked if we had an appointment? I explained that we did not but that my husband spoke to a nurse and she said to come over now (I used her name). They were wonderful. They gave us the paperwork ~ no questions asked. Nathan received the preservative free vaccine and I was vaccinated too. I figured we go through it together. Thank God it all worked out and that Danny was on top of this situation because I was spending way too much time worried about "what if." Daddy had his head in the game and executed perfectly. Go Daddy!

We return in one month for the second dose. Thank you God. What a day.

Tuesday, October 27, 2009

Active Parenting Can Produce Unwanted Results

Grammy came with us for Nathan's second day of school ~ she was worried and wanted to be sure the school was everything I said it was. It didn't take long before she felt as comfortable as Daddy and I do. It's just a wonderful loving environment. Not to mention ~ fun! When I picked Nathan up... his teachers asked if we would ask his therapists to come to the classroom so they could learn how to help Nathan do things like climb the slide. Isn't that great!!! They care enough to want to know how to help him develop these skills. Nathan's team has agreed to visit but in the meantime......
I decided to get Nathan a slide so we could work on these skills at home and that's where the trouble began (yikes!!).

This was the first time he tried to climb on the slide ~ Daddy taught him and we've all reinforced the climbing action....

Nathan loves his slide and one week later is doing really well!! He climbs up the stairs and is able to get his feet under his body to slide down...

As you'll see from this little video ~ he still needs some support but is doing amazing. I can't tell you how wonderful it is to have everyone on the same page and working together to help Nathan. With that said, I never imagined what these lessons would produce....


Yesterday I put Nathan down for a nap and he was playing in his crib, which is not unusual for him but all of a sudden I heard a loud BANG!! I never even looked at his camera ~ I just ran!! I knew that a noise like that could have only produced one thing ~ a baby overboard!

When I entered the room, I looked in the crib. NO BABY! Oh no! Then I saw him ~ crying and sitting in this basket next to his bed!

No way, he fell out. I found Nathan butt down in this basket, which means he CLIMBED OUT and then fell! I can laugh about this now but I wasn't laughing at the time. I was scared to death ~ I didn't know if he was hurt internally or broke any bones.

I immediately calmed him down and made sure he was alright. We're not sure what to do at this point. Until we figure it out, Nathan has been sleeping in our room in his pack and play. I'm just thankful he's ok but I'm not interested in a repeat episode.

Sunday, October 25, 2009

FAO Schwartz ~ Nathan's First Trip to New York City!

On a complete whim, we decided to take Nathan to one of the coolest toy stores in New York City, on Friday ~ FAO Schwartz! Daddy took his first full week of vacation this year and although, he worked around the house the entire time (because we're getting ready to sell our house), he decided to dedicate the day to us and we made it memorable!!!

As soon as we entered the store, I asked where the floor piano was. As most of you know, Nathan loves music and I knew he would love running on the keys while they lit up and played notes.

I took some video with my digital camera.


Nathan met a few new friends and had wonderful conversation with Big Bird and Elmo. In fact, it was such fun that Grammy brought home smaller versions of these guys ~ Nathan loves them! We gave him big bird in the car on the way home and he kept laughing and yelling in delight. Thanks Grammy!!
Some coloring fun with Grammy. These are crayons that go on the tips of your fingers. They were actually pretty neat. Nathan thought stacking them was more fun than coloring with them.

We found some very cute puppets ~ Nathan really loved them. I'm thinking it may be a puppet Christmas!
This was the make your own Muppet section! We found it as we were leaving the store, which was disappointing because they make the puppets while you shop. If we had known we would have had one made for Nathan. I'm sure on our next trip, it'll be our first stop.
After leaving the toy store with a few goodies, we headed for lunch.

It wasn't long after we arrived at Trump Towers, that Nathan got FIRED!! It's why he's running out of lobby! Donald's a pretty scary and serious guy when he's giving someone the boot! Good thing for the doorman ~ otherwise, Nathan would have plowed right through the glass! just kidding (I'm an Apprentice fan).

We actually had a very nice lunch!

Wednesday, October 21, 2009

A Few More Buddy Walk Pictures



I just received a few more Buddy Walk pictures and the one of Daddy and Nathan is my favorite!!!

Monday, October 19, 2009

St. Judes Children's Hospital Discovers Link Between Leukemia and Down Syndrome

If your a regular to Nathan's blog, than you probably know that I am very afraid of the higher than normal occurrence of Leukemia in children with Down syndrome. As Nathan approaches his second birthday, he'll be tested.

With that said, there is was a news report today that St. Judes Children Hospital Researchers have "identified a new chromosomal abnormality in acute lymphoblastic leukemia (ALL) that appears to work in concert with another mutation to give rise to cancer. This latest anomaly is particularly common in children with Down syndrome."

To read the article in its entirety please see: New Chromosomal Abnormality Identified in Leukemia Associated with Down Syndrome

Each medical discovery has the potential to yield exciting new treatment options. This is no exception.

Friday, October 16, 2009

My First Day at Toddler School

In preparation for Nathan's big debut at toddler school, he got his hair cut, mommy bought him lots of new school clothes, and Mommy & Daddy made him his very own school bag! When I was looking for patches to put on his new bag I discovered, there was almost nothing for boys!!! I was able to find some sport patches but that's it ~ there were two aisle of patches for girls!! I'm going to go back and see if I can find some music patches. Nathan loves music so that would be fitting. Daddy did the hot gluing and burned himself more times than he'd probably care to admit! :-) It was a fun family project for our big boy!!Daddy met us at school and had the honor of taking his little boy to his first big day!!! I love this picture. When we arrived at the classroom, Nathan walked in and walked away from us! He was like, "see you later mommy and daddy ~ I've got friends now!" We stood there talking to his teachers for quite some time while Nathan played with the other kids in the classroom. At one point he turned and noticed us, ran over to his daddy and when Danny picked him up, he wanted to be put right back down and off he went. He was interested in playing with the other children ~ it was awesome!!

After about 10 minutes, I returned to the classroom and heard his teacher correct him for throwing toys ~ yep, that's a problem! Nathan throws everything. I'm glad to have his teachers working on this too.

After we left the school, I went home picked up and then hit the gym!! At about 11:15am, my phones rings ~ it was school! Not good. I was totally frightened. What could have happened? Did Nathan choke on his apple (snack for the day)? Did he fall in the indoor play area? Within seconds my head is swirling. No, he fell asleep!!! Oh thank God that was it!

My first motherly instinct was to go pick him up but then I thought, Nathan needs to get used to this and if I go get him he's only going to wake up anyway. Knowing how this would all play out, I asked his teacher to wait a few minutes and wake him up ~ see how he does. If he's still cranky ~ I'll come get him. We can ease into this slowly. No problem. Then I asked her if she had a camera? Yep! I could resist!! lol

Sleeping beauty...


About 30 minutes later my phone rang again ~ it was the school letting me know Nathan had woken up on his own about 15 minutes later and was "happy as a clam!" YEAH! He just needed a power nap. He gets up to darn early. It's almost 6:00am now and he's been stirring in his room for about 20 minutes now. How is he going to get through today? His teachers also took a few more pictures of his first day!! I was so excited! They are doing colors for the month and this weeks color is yellow ~ Nathan actually needs to wear something yellow to school today. How cute! This is exactly what I wanted for Nathan ~ little friends and a fun learning environment.When I picked him up he was very sleepy and a little upset. His teachers shared with me that he had a great day. They also shared the cutest story~ when Nathan was very tired and a little upset during the morning another boy came over to him, (while he rested his head on the teachers shoulder) rubbed his back and began singing twinkle twinkle little star!! The teachers were really moved by the show of compassion for their new fellow classmate. So sweet.

I'll keep you posted! So far ~ so good!