Sunday, October 31, 2010

31 for 21, Day 31!!!!

Wow, I can't believe that this is the last post for 31 for 21. I certainly wasn't perfect at this and didn't post every day as I had hoped to. But I am really thankful that I participated. Mostly I am thankful for all the other blogs I have found. I have read many uplifting stories this month. I have also seen some amazingly adorable children from around the world!

My ultimate goal for participating this month was to help people realize that those with Down syndrome are more alike than different. They love, they laugh, they hurt, they cry, they learn, they teach, they have friends, they go to school, they work, they often get married. In other words, they are just like everyone else. Tyler is just like everyone else. Yes he has his struggles. But who doesn't? Everyone has special needs in one way or another. His just happen to be more noticeable.

Not a day goes by that I don't feel humbled by the fact that God chose me to be Tyler's mom. There are many times that I feel unworthy of such an incredible blessing. I am overwhelmed with love for this amazing child. Being his mom is more than I ever could have hoped for in life. He makes me want to be the best person I can be. He makes me want to work harder, to be kinder, to enjoy the little things in life. He helps me remember to smile more, to laugh more, to sing and dance more. He can make me smile in an instant, no matter how blue I may be feeling. His love and compassion for others never ceases to amaze me. His spirit shines through in all that he does. I am simply in awe of this sweet, sweet boy!

Friday, October 29, 2010

31 for 21, Day 29

Emmalee and Tyler were playing today and Ty was really enjoying it. They were getting along so well. Emmalee looked and Brent and I and said, "we're best friends; I just know it." I looked at Brent and we both had tears in our eyes. I am truly thankful that our children love each other so much and that they really are best friends.

Wednesday, October 27, 2010

Tuesday, October 26, 2010

Monday, October 25, 2010

31 for 21, Day 25

Tyler had surgery on his left eye today. They replaced the lens in his eye with a synthetic lens. He did great, as usual. (He had the right eye done a few weeks ago.)

Here are some fun pictures of him before surgery. Enjoy!

Sunday, October 24, 2010

31 for 21, Day 24

Sorry for the lack of posts the last few days. Our laptop decided to get a virus. I think, (fingers crossed) that we got it taken care of. Whew! I was able to check email and Facebook on my phone but trying to post to the blog from there was just not working for me.

Thursday, October 21, 2010

31 for 21, Day 21

Okay, this post is for all of you out there who have happened upon our little blog. I have seen folks from all over the world in my status feed. So, I am challenging you, dear readers, to put a quick comment and tell me where you're from, how you found the blog and anything else you might like to share. Thanks in advance!!

Wednesday, October 20, 2010

Tuesday, October 19, 2010

31 for 21, Day 19

Every so often I'll run into pictures or videos of the kids and instantly I am transported to that moment in time. It's incredible how much our children have grown and changed. The days go by so quickly and the kids seem to be changing before my eyes.

I found this video just now and it instantly brought tears to my eyes. This was taken April 21, 2008. Tyler was just about eight weeks into his leukemia treatment. He had lost his hair and the steroids had puffed him up so much that he was almost unrecognizable. He was miserable during those weeks. There were days he wouldn't move off the bed. He wouldn't eat. It was torture to watch him and know there was nothing we could do to help him.

Tyler would barely interact with people when they would come in the room. That is, except for one person, his music therapist. As soon as she would come into the room, he would sit up and smile. He would sign "music" and wait for her to start getting out the instruments. He would interact and be happy and for the thirty minutes that she was there each day, he was himself. To us, she was a miracle worker.

I will be forever thankful to everyone who took care of Tyler during his cancer journey. We simply could not have made it through without all of them.

Monday, October 18, 2010

31 for 21, Day 18

Click HERE to read one of the most incredible birth stories ever. Grab some tissues first. When you're done with the birth story, peruse Kelle's blog. She is an incredible writer, an awesome photographer and has two of the most beautiful children ever. Her youngest, Nella, happens to have designer genes.

Sunday, October 17, 2010

Saturday, October 16, 2010

31 for 21, Day 16

Update on Nate's Appointment

Well, we met with the gastroenerologist and the surgical team on Wednesday. The good news is that Nate does not have Hirschsprung's disease. The bad news is that Nate does not have Hirschsprung's disease. Why is that bad news? Because it means there isn't a definitive answer as to what is going on.

Dr. Rossi from GI is at a loss. Based on all the tests we have done, there just isn't an answer from a GI standpoint. He said there is one more test we can do but we'd have to go to Boston for it and in his opinion it probably won't show us anything different.

Dr. Pegoli is the surgeon. He believes that Nate's constipation issues are neurological. He thinks that there was probably neurological damage due to Nate's extreme prematurity and intracranial hemorrhages after birth. It is obvious by Nate's extreme developmental delays that there are neurological problems. We had no idea that they could also cause issues with his colon and bowel system. It makes perfect sense but it just wasn't something we had thought about.

So what does this mean? Dr. Pegoli says we have two options at this point. The first option is to continue doing what we're doing and see if eventually Nate will be able to have a bowel movement on his own. The problem with that is not knowing if or when it will happen or how long it may take.

The second option is a colostomy. This would give Nate relief now and may allow his colon and bowel system time to recover. The colostomy would not necessarily be permanent and, as Dr. Pegoli stated, "it wouldn't burn any bridges." In other words, we could eventually reverse it and start over to see if Nate could go on his own.

At this point we are simply not sure what to do. We are going to try giving him large amounts of Miralax again to see if this will make any difference. It hasn't really helped in the past but Dr. Rossi says it is worth a try.

I was really prepared for them to tell me that Nate has Hirschsprung's. If he did, the colostomy would be absolutely necessary and not just optional. The thought of having to put him through a major surgery is daunting.

Right now we are going to pray about it and try to make the best decision for Nate. Please continue to pray for him and pray also that we will make the right choice.

Thursday, October 14, 2010

31 for 21, Day 14

Some of Tyler's Favorite Things

  • Apples
  • Goldfish Crackers
  • Eating! He will eat pretty much anything.
  • MUSIC!! Right now we are listening to Train and he LOVES them!
  • Barney
  • The Doodlebops. It was a sad day when Disney stopped running their show! Thank goodness for DVD's.
  • Riding the bus
  • School
  • Making people laugh
  • Playing outside
  • Swinging
  • Dancing
  • Singing
  • The Hokey Pokey
  • Vacuuming
  • Sweeping
  • Taking off his shoes. As soon as he gets home from school he gets his shoes taken off and always says, "Oh, that's better!"
  • Starburst
  • Throwing things down the stairs
  • Turning the TV up way too loud and then yelling "TOO LOUD!"
  • Pushing the button to open/close the garage door
  • Learning a new word, sentence or sign and then repeating it a million times
  • Blowing raspberries on someone's arm or neck
  • Playing 'Rock the Baby' with me. He will say that and then lay in my arms like a baby while I rock him. Then he laughs and says, "again!"
  • Playing with Emmalee & Nate
  • Dancing while daddy plays the piano
  • Drumming on anything and everything
  • Corners on fabric. He always finds the corner of blankets when he is tired. My friend Camberly made him a gorgeous quilt for his birthday with a corner border all the way around.
  • Firetrucks, ambulances and police cars
  • Saying "HI!" to everyone
  • Books

Wednesday, October 13, 2010

31 for 21, Day 13

Today is a big day for Nathaniel. I know many of you have kept up with our posts regarding his possible diagnosis of Hirschsprung's disease. (You can read them here and here.)

This has been a very long, very frustrating process. In a nutshell, Nate doesn't poop. Not on his own anyway. I'll spare you the specifics but suffice it to say, it takes a great deal of help for him to be able to have a bowel movement. He has had several tests done....barium enema, rectal biopsies, rectal pressure test, etc. The gastroenterologist has been back and forth about whether or not it is Hirschsprung's disease. I think he's been hesitant to make the final diagnoses because of what that will mean for Nathaniel.

After the last test, (rectal pressure,) the doctor has decided that it is time to consult the surgery team. We are meeting with our favorite surgeon today, along with the GI team.

I am nervous but hopeful. Hopeful that we will get a diagnosis. Hopeful that we will get a plan. Hopeful that it will be something that will most benefit Nate.

Please keep us in your prayers.....I'll update later today.

Monday, October 11, 2010

31 for 21, Day 11

I LOVE this story!!

Player with Down syndrome Scores Touchdown


Posted on September 30, 2010 at 11:11 AM

SNOHOMISH, Wash. - By most accounts, Ike Ditzenberger is different.

The 17-year-old junior at Snohomish High School has Down Syndrome. He takes special classes during the day, but after school Ike is just like one of the guys.

He’s a varsity football player.

“He gives it 100 percent every time he’s out there,” says Head Coach Mark Perry. “On the sidelines, he likes to crack jokes, and sometimes he’ll eat a cookie or two.”

The players embrace Ike as one of their own. Every night at practice, the team runs a special play. They call it the ‘Ike Special’.

“Ike runs it up the middle and the guys pretend to tackle him,” says Perry. “Everyone loves it and Ike gets to play.”

On Friday night, Coach Perry pulled the ‘Ike Special’ out of the playbook. He told the opposing Lake Stevens High School Football players what was about to happen and he called number 57 out on to the field.

“I told them if he gets 10 or 20 yards, that’s great,” Perry says.

The play call was a surprise to almost everyone in the stands, including Ike’s mom.

“I heard a lot of commotion and then I saw my son Ike run out onto the field,” says Kay Ditzenberger. “My first thought was, ‘I hope he doesn’t drop it!,’” she laughs.

4th quarter. 10 seconds left. Quarterback Taran Lee hands the ball off to Ike.

“I dropped back to hand it off, and Ike ran backwards a little bit,” says Lee.

Over the next 18 seconds, Ike ran a zig-zag pattern around the field, every step still inching closer to the goal line. Then he straightened out his run. The opposing players for Lake Stevens made admirable attempts to dive for Ike, but came up short, knowing Ike was going all the way. Then magic happened.

After a 51-yard run, Ike Ditzenberger crossed the goal line for a touchdown.

“I was bawling and everyone was screaming. It was such a special gift,” says Ike’s mom.

After a short celebration with his teammates in the end zone, Ike ripped off his helmet and ran toward the sideline with a grin from ear to ear. Thanks to both teams, Ike got his moment.

“To see the players and fans react the way they did was special,” says Coach Perry. “They went nuts. I’m glad it could happen.”

Snohomish High School lost 35-6, but the score didn’t matter. Already Ike is thinking about the future.

“He wants to play for the Huskies,” says mom. “But first, he says he wants a date for homecoming.”

31 for 21, Day 10

Okay, I didn't get a post done yesterday. My sweet family gave me a much needed mom-cation.

I love you, Brent, Tyler, Emmalee & Nathaniel!!

Saturday, October 9, 2010

31 for 21, Day 9

First Day of School -- 2010

Tyler started 1st grade. Doesn't he look thrilled?!

Tyler LOVES the bus and he was very excited to meet his new bus driver and aide.

Bye, Mom!

Emmalee started kindergarten. She really didn't want to stand still long enough to take a serious picture.

She was also very excited about riding the bus. Her bus driver is great!

Nate started his first year of pre-k. Sadly, this is the only decent picture I got that morning.

Friday, October 8, 2010

31 for 21, Day 8

Down syndrome Myths and Truths

Myth: Down syndrome is a rare genetic disorder.

Truth: Down syndrome is the most commonly occurring genetic condition. One in every 733 live births is a child with Down syndrome, representing approximately 5,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome.

Myth: People with Down syndrome have a short life span.

Truth: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.

Myth: Most children with Down syndrome are born to older parents.

Truth: Most children with Down syndrome are born to women younger than 35 years old simply because younger women have more children. However, the incidence of births of children with Down syndrome increases with the age of the mother.

Myth: People with Down syndrome are severely “retarded.”

Truth: Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability (formerly known as “retardation”). Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

Myth: Most people with Down syndrome are institutionalized.

Truth: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.

Myth: Parents will not find community support in bringing up their child with Down syndrome.

Truth: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome.

Myth: Children with Down syndrome must be placed in segregated special education programs.

Truth: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.

Myth: Adults with Down syndrome are unemployable.

Truth: Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.

Myth: People with Down syndrome are always happy.

Truth: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

Myth: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.

Truth: People with Down syndrome date, socialize, form ongoing relationships and marry.

Myth: Down syndrome can never be cured.

Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

Thursday, October 7, 2010

Wednesday, October 6, 2010

31 for 21, Day 6

21 Things I Love About Tyler
(In no particular order.)

1. I love Tyler's facial expressions when he is trying to get a laugh out of someone. He sort of raises one eyebrow and then stares at you and waits for you to crack up. No matter how hard I try to keep a straight face, he can get me every time.

2. I love that he can walk. It took him a long time to finally get enough strength and courage to start but once he did, there was no stopping him.

3. I love how much he loves Emmalee. I really believe she is his best friend. He gets super excited when he sees her and LOVES it when she plays with him.

4. I love how much he loves Nathaniel. There was a time when he wasn't so sure about Nate. Now that they share a room they have really bonded and play so well together.

5. I love his enthusiasm when he sees someone he knows. He'll call out, "HI DADDY!" (or whomever it happens to be.) It is awesome! It makes you feel like the most special person in the whole world.

6. I love listening to him pray. I only understand a couple of the words he says but I know that Heavenly Father understands him perfectly. It touches my heart and renews my faith. It is the sweetest thing.

7. I love how much he loves music. All kinds of music. He loves to sing and I am constantly amazed at how many of the words he knows to different songs. Sometimes I will hear him singing when he doesn't realize I am listening. He really loves listening to his dad play the piano. He has always loved that. Right now his favorite song is "Hey, Soul Sister" by Train. He asks for it several times a day by saying, "Hey Hey Hey...." We listen to it quite often.

8. I love watching him dance. He dances with his whole body and really gets into it. It is so fun to watch him! Watching him break dance is the best!

9. I love how much he loves his daddy. He has been a daddy's boy from the very first day we met him. I love watching the two of them interact and seeing the bond they have. It makes my heart melt to see them together.

10. I love how much he loves me. As much as I know that he is a daddy's boy, I also know that he loves his momma.

11. I love seeing him interact with animals, especially dogs.

12. I love how strong willed Tyler is. He is determined and stubborn. I'll admit, sometimes that can be frustrating. But I know that it is because of his determination that he accomplishes things. He will be able to accomplish anything he sets his mind to. He has a can-do attitude and never says that he can't do something. If he can't do something the first time, he doesn't get mad, he just says, "oops, try again," and works harder until he accomplishes it.

13. I love how excited he gets about things that might seem mundane to anyone else. He truly embraces life and sees the joy in everything. That is one of the greatest lessons I have learned from him.

14. I love that he loves to eat and is always willing to try new foods.

15. I love his giggle.

16. I love it when he says, "again" and then grabs your arm to blow raspberries on you. That's one of his favorite things.

17. I love hearing him talk! He seems to learn a new word every single day and it is amazing! Today's new word was gross.

18. I love his empathy for others. If one of us gets upset or cries, it breaks his heart. If one of the other kid cries, he gets so upset for them and says, "you okay?" He truly hates seeing someone else who is in pain or upset.

19. I love that he accepts EVERYONE. It doesn't matter who they are. He loves everyone. He is completely unconditional.

20. I love how he yells "HI" to every single person he sees. It is fun to take him shopping or to any public place. He does tend to get irritated if people don't say hi back. :)

21. I love that he is always willing to share.

Wow....I could go on and on. I may have to do 21 more things sometime later this month. There are just so many things I love about this boy. I am truly blessed to be his momma!

Tuesday, October 5, 2010

Monday, October 4, 2010

31 for 21, Day 4

I love the pictures that I posted yesterday. They are so Tyler. My friend Shelly took them and she truly captured his personality. Tyler LOVES to make people smile and laugh and he has several facial expressions that he uses to get a response. The first and second pictures are so "Classic Tyler" -- one eyebrow raised, a bit of a goofy grin. I love it!

When I made the appointment for these pictures, Brent and I really debated about whether or not we should get Ty's hair cut beforehand. His hair was pretty wild, as you can see. It was uneven and super messy. In the end, we opted not to cut it first. Why? This is the most hair Tyler had had in two years.

For those of you that don't know, Tyler was diagnosed with Acute Lymphoblastic Leukemia, or ALL, on March 2, 2008. He started losing his hair pretty quickly after treatment began. His hair began falling out in giant clumps. I finally ended up shaving his head in the hospital. It was one of the most heartbreaking things I have ever had to do. When his hair started falling out, it was the first physical sign that he had cancer. It finally started to sink in that he was sick. His hair loss was much more difficult than I imagined it would be.

Thankfully Tyler is now cancer free. He is also finished with treatment. His hair has finally started growing in properly and he has had several hair cuts since these photos were taken.

When I look at these photos I am so happy that we decided not to cut his hair first. His hair is a sign of how far he has come. These pictures will always be a reminder that Tyler triumphed over cancer.

Sunday, October 3, 2010

Saturday, October 2, 2010

31 for 21, Day 2

I think one of the greatest myths regarding people with Down syndrome is that they are always happy. I can be completely honest here when I tell you that that is not true. Tyler is not always happy. He is just like any other six year old. Granted, he is happy much of the time. But he also gets frustrated, angry, sad, scared, disappointed, overwhelmed and every other emotion you can think of.

The fact is, people with Down syndrome are more like everyone else than they are different. They love, they hate, they have fears, they have joys, they laugh, they cry. More than anything, they want to be included and treated fairly. As Tyler's mom, I want that for him more than anything else.

On my sidebar I have the Down Syndrome Creed posted. I think of this often. I know that Tyler will do all the things that other kids do. I know he is capable. I know that he will succeed. I also know that he will do it at his own pace. It may take him longer and that's okay. I am excited to enjoy the journey right along with him!

Friday, October 1, 2010

Happy Down Syndrome Awareness Month! 31 For 21, Day 1

Hooray! 31 for 21 is here! I am really hoping for two things by committing to blogging each day this month.

1. That I can help to make others more aware of Down syndrome in general.

2. That I don't bore everyone to death.

The rules of 31 for 21 are pretty open. You don't have to blog about Down syndrome specifically every day if you don't want to. I'm glad for that rule but I am really hoping to have something pertaining to Down syndrome every day, even if it is just a picture of Tyler.

I would love topic ideas from all of you. Is there anything about Tyler that you'd like to know? Are you curious why we chose to adopt a child with Down syndrome? Do you have questions about Down syndrome in general? Please, ask away!

I am really looking forward to this month of posts. I am also looking forward to reading the other blogs that have also committed to 31 for 21. I LOVE connecting with other families.

Wish me luck!!