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.
WELCOME TO NATHAN'S BLOG!
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
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.
Saturday, December 26, 2009
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
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.
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
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
Monday, December 7, 2009
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.
Wednesday, December 2, 2009
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
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
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
Wednesday, November 11, 2009
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
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.
Sunday, November 1, 2009
Tuesday, October 27, 2009
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
I took some video with my digital camera.
We actually had a very nice lunch!
Wednesday, October 21, 2009
Monday, October 19, 2009
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
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
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!