Monday, December 10, 2007

Reece's Rainbow

It was not so long ago in our country that children born with disabilities were routinely institutionalized. Parents experienced incredible pressure to give up their children to mental institutions. They were told things like "you child will be a vegetable" and "he will only be a burden on your other children and family." It is so obvious to us all today that this is not true! Children with Down Syndrome and a host of disabilities enrich our lives in ways that make life seem so much more precious. These children do not grow up to be "vegetables" but to be valuable members of society. Every child, no matter how many chromosomes, no matter how many talents or challenges, are worth the investment, time, and care found only in a family with people who love them.

Unfortunately, there are places in the world where children with disabilities such as Down Syndrome are not yet seen for the treasure they are. There are places where parents are encouraged to give up their children with Down Syndrome for adoption. Unfortunately, in societies where Down Syndrome is not valued, there are not many people willing to adopt these precious children. Children with disabilities stay in orphanages for 4 or 5 years, at which point they are often transfered to mental institutions. The institutions are often horribly understaffed, and under funded. Children are neglected. Left alone in cribs, or tied to beds. They do not receive attention, interaction, or love.

Reece's Rainbow is a Christian organization that seeks to help families adopt children with Down Syndrome internationally. In many cases, adopting a child with Down Syndrome from another country is not just a wonderful way to add to a family, but is a mission to save a life. I just want to encourage those reading this to consider donating money to the grant funds set up for adoptable children in Reece's Rainbow Angel Tree Gallery. These grant funds are intended to help families who adopt these children with the financial commitment it takes to adopt a child from overseas (from 10k to 30k). If you cannot give money, then PRAY for these children. Pray for the families who are seeking to adopt, and for families who are considering it. Pray that the social situations that make having Down Syndrome so detrimental in so many of these countries changes, and that soon children with Down Syndrome will be sought after for adoption in the same way they are in the United States (Yes! There are waiting lists of people hoping to adopt babies with Down Syndrome in the US!). Thanks for thinking about this. It breaks my heart to think of children just like our Charlie living a life without a family to love them.

To view these links, copy and past them into your browser. I couldn't figure out how to make them into direct links.

http://www.reecesrainbow.com/

http://www.reecesrainbow.com/angeltree.htm

Monday, November 5, 2007

"Fall Dress Up Party"

Well, our family is not really that into Halloween, so instead of Trick-or-Treating on the 31st, we usually go to a "dress-up" party sometime toward the end of October. This year Charlie went as a Fireman. Here's a little picture of Charlie and daddy.

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Tuesday, October 30, 2007

Hearing Test

Charlie's first diagnosis when he was a baby, before we were even aware that he had Down Syndrome, was a moderate bilateral sensorineural hearing loss--a.k.a. a permanent hearing loss in both ears. We recieved this diagnosis when Charlie was 6 weeks old, and learned at that time that he would need hearing aids. At 5 months old Charlie finally got his hearining aids.

When Charlie was 10 month old we began to notice that he became agitated in noisy environments. We brought this up to the audiologist wondering if she needed to tweak the levels on his aids, but she felt it was probably just a kid thing. At that time he was testing right around the level of hearing we thought he had.

During a routine hearing test at 15 months old (April) Charlie suddenly began to react to even the quitest sounds. Baffled, the audiologist said we would need to do more testing. She said his type of hearing loss just doesn't improve... We took his hearing aids off after that visit, and they sit in a box in the top drawer of Charlie's dresser, unused.

In May of this year we switched audiologists to a team of Doctors that have experience treating children with Down Syndrome. They explained that while babies with Down Syndrome often do hear the sounds, they often do not react by turning to the sound right away. They were able to test Charlie by having one audiolist running the test while another sat right in front of Charlie to watch for his reactions. They found his hearing to be even better than we thought. Totally normal hearing.

Well, today we had a follow up test to check and see how things are going. Charlie was a very good boy, and let them do all the tests they needed to. He knew just what to do, and he passed with flying colors! We don't have to go back until he is 3!

Bottom line is, this is a MAJOR BLESSING! Ray and I were devestated when we learned that Charlie was hearing impaired. When we found out he had Down Syndrome we were doubly worried about how a hearing impairment would set him back. We never expected that his hearing would improve, especially to the point of being completely normal. I know my parents and grandparents prayed fervently that his hearing would be restored, and I can only think our Charlie was given a miracle. We couldn't be happier with the recent results, although we were not surprised at all. He hears every little noise, and his speech and language is coming along great. By the way, his newest word is "pot."

Sunday, October 28, 2007

Imagine

Today at church we were asked to imagine what it would be like if everyone in our town reached their full potential. Imagine if every kid who was abonded by a father, or left alone by a mother... Imagine if people with disabilies were able to overcome ridecule and judgement... Imagine if every person who has ever been told they "can't" was able to overcome the obstacles, issues, and fears... Imagine if we all were able to reach everything we could be. Imagine.

When you are a parent of a child of special needs, you think about potential a lot. We are all told "you can't." We are told "you can't" over and over in our lives. We even tell ourselves we can't. When your child has special needs, "can't" is multiplied. Down Syndrome and "can't" are so synonymous in our society that 90% of babies diagnosed with Down Syndrome prenatally are aborted. "Can't" haunts me when I think about my son's future...

Have you ever heard of the story of Dick and Rick Hoyt? Rick Hoyt was injured at birth. He was strangled by the umbilical cord, and is thus paralyzed and unable to speak. Doctors told his parents he would be a vegetable. They told them they should institutionalize their son. They didn't.

When Rick was in high school, he told his dad Dick Hoyt (through a special computer he uses to write his thoughts) that he wanted to participate in a 5k benefit run. Dick agreed to push him in the race, even though he was out of shape and didn't know if he could make the distance. After the race, Rick told his dad that when they were running he didn't feel disabled. Dick knew then that he needed to provide his son with every possible opportunity to have that feeling. Here is a short video of their story:



Dick could have said, "son, I'm just not in good enough shape to do a 5k run." He could have said "we can't." He could have passed up that opportunity to give his son the feeling of not being disabled. But that is not the job of a parent who has a child with a disability. When your child has a disability your job is to be an enabler, because you just may be the only person who will believe in them. You may be the only person willing to go the distance with your child... to give them the opportunity of "Can."

I want to be that parent for Charlie. Down Syndrome has so many judgments, so many negative ideas about what it means. I confess that even having come to feel like I am lucky to have a child with Down Syndrome, I still have a lot of "cant's" for Charlie. I realised this Sunday that it really does not matter what Charlie can or can not do, or will or will not do now or in the future. My job is to say "Yes." "Yes, I will do that with you," "Yes, I think you can," Yes, I will help you with that," "Yes, I will teach you." It takes a lot of courage to be a person with a disability. It takes a lot of courage to parent a child with a disability. I know many people will doubt my son, but I need to have the courage to never doubt. Imagine.

Sunday, October 21, 2007

21 Things About Charlie

October is Down Syndrome Awareness Month. I've noticed in honor of this month and of their children with Down Syndome many other parents have posted a list of 21 things about their kids (21 being the set of chromosomes that our children have an extra). So, here are 21 Things About our Charlie:

1. Charlie is 21 months old this October. He was born 1/8/06, 11 days before he was due.

2. We did not find out Charlie had Down Syndrome until he was 2 1/2 months old.

3. Charlie's first diagnosis when he was a baby was a moderate bi-lateral sensorineural hearing loss. We found this out when Charlie was about 6 weeks old. It was supposed to be a permanent condition, and Charlie wore hearing aids for 10 months. We believe it is a true miracle that he is no longer hearing impaired.

4. Charlie does have low muscle tone associated with Down Syndrome. Although it prevents him from progressing in his gross motor skills at the same rate as typical children, he is progressing none-the-less. He learned to sit at 8 months, to crawl at 14 months, and we're hoping walking comes soon.

5. Charlie is often shy around adults, but is NEVER shy around kids. He goes to daycare a couple hours a day on Monday, Wednesday, and Friday, and is very popular. His best friend is Molly. Molly's mom says Molly talks about Charlie on the weekend.

6. Charlie only likes to drink milk. He tolerates water, and hates juice. He thinks juice is YUCK!

7. Charlie will eat anything if he sees mommy and daddy eat it, even vegetables!

8. Charlie takes medicine for acid reflux three times a day. The medicine is extremely bitter, but Charlie 'takes it like a man.'

9. Charlie has many extra-curriculars. He sees an Occupational Therapist every Tuesday at 10:30, a Speech Therapist every Tuesday at 1pm, and Speech and Language Pathologist on Wednesdays at 4pm and on Thursdays at 10:15. His infant teacher visits him on Fridays at 10am. He enjoys each of these appointments.

10. Charlie has an unique tongue. Instead of one line down the middle, Charlie has two lines down the sides. His Speech and Language Pathologist says she has never seen this before. She thinks it may be due to the tone of the muscles in his tongue. We think it is pretty cute. Especially when he sticks his tongue way out to show it off!

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11. Charlie both signs and says words. Combined he has about 40 words he knows. This is more words than some of his peers at daycare have!

12. Charlie loves music. He loves to 'help' his daddy play the guitar.

13. Charlie is very flexible. Sometimes he sleeps on his tummy with his feet up by his head. Don't ask me how. It looks pretty painful to me!

14. Charlie's favorite toys are balls. He can say and signs ball, and does so when he sees anything round. He likes to throw balls and crawl after them. If Charlie is feeling naughty he throws a ball in the direction of somewhere he knows he is not supposed to go, like under the tortoise cage where he likes to mess with the timer that controls Boris' heat lamp.

15. If you are eating something, Charlie expects you will be willing to share. He will ask you for a "bite" and will sometimes even say "please" (weee).

16. Charlie wakes up every morning at 20 minutes to 6. We can sometimes get him to go back to sleep for one more hour, but most of the time he is up for the day at that point. Did I mention that mommy and daddy are NOT morning people?!!!

17. Charlie likes hugs and cuddles. We will often take a short break from whatever he is doing to come climb into our laps for a cuddle.

18. Charlie adds his own sound effects when he plays with his cars--like a true boy!

19. Charlie does not have any of the more common medical issues many children with Down Syndrome face. No heart condition, no GI tract issues, no thyroid issues, and he has a healthy immune system.

20. Sometimes Charlie wakes up on the 'wrong side of the bed' after his nap and is grouchy for the rest of the day! Humpf!

21. Charlie is going to be a big brother this coming March! We think he will be very excited to have a brother to play with at home!

Friday, October 19, 2007

A Boy and His Daddy

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Eating solids and accomplishing independence

One of Charlie's major struggles has been with learning to eat. He has been an excellent nursling from the start, in part thanks to a great lactation consultant and a good friend (thanks Tracy) who both helped us work out the kinks that come with learning how to nurse a sleepy newborn. Charlie's trouble with eating began when we started solids. Or rather, *tried* to start solids. We started trying solids when Charlie was 7 months old with no success. When Charlie was 10 months old we sought the help of a wonderful Speech and Language Pathologist (SLP) who specializes in helping children eat when they have trouble with their oral motor coordination. We continue to see her 2 times a week.

Every meal used to be a huge struggle. Most the time both Charlie and mommy would end up frustrated and in tears. A major breakthrough occurred when we started Charlie on a trial of medication for acid reflux. By this time Charlie was 15 months old, and ate only a couple bites of puree food twice a day before refusing to eat more. He would act as if he wanted to eat, but then would cry and cry when we gave him a bite. Immediately after we started the meds he began sleeping through the night. Then he began napping better. After six weeks when the medication had a chance to allow the erosion in his esophagus to heal, he began to eat! Soon after that he began using a sippy cup. He has recently mastered drinking from a straw. In the last month he has learned how to chew and mash solid foods.

I can't express how it makes me feel to see Charlie improve so dramatically in this area in the last 6 months. We had struggled for 10 months trying to get Charlie to eat pureed foods and to drink from something other than mommy. Treating the acid reflux was, and still is, a huge key to all of this recent success. Working with Deb, our SLP, has been invaluable to provide Charlie with the oral coordination and strength to learn to use the sippy cup and straw, to move food from the front to the back of his mouth, and to give him the skills necessary to learn how to chew and mash solid foods.

With all these new skills, Charlie has now become very discriminating about his tastes. Basically, he wants to eat whatever mommy and daddy are eating, and he wants to do it himself. Just last week he began to refuse to eat puree foods unless he can feed them to himself! This is a major accomplishment! Here is a cute picture and a short video of Charlie feeding himself like a big boy:

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Friday, October 12, 2007

IT'S A BOY!

We had an ultrasound done early this morning and found out we are going to have another son! We are glad to have had the chance to peek in on this little guy and see that everything looks well.

Interesting fact about our family: It has been over a century since anyone in my husbands family (paternal side) has welcomed a baby girl. I was really sure I would be the rebel mommy to have a daughter. Instead we are holding up this 100 year tradition of sons in my husbands family! Pretty cool!

Now, if we only had a name for this little booger. Any suggestions?

Sunday, October 7, 2007

A few thoughts about my Charlie

As I was nursing Charlie to sleep last night, looking down at his soft, sweet face, I was struck by how rare and special it is to have him as a son. How many mothers have the opportunity to parent a child with a gift. I would not say it is easy parenting Charlie. We have had many struggles. We have worked really hard on things, sometimes for months and months before having success. We currently are trying to figure out how to teach Charlie what things are not okay to do. How do you do this when your toddler thinks every attempt you make at discipline is funny!?

The thing is, Charlie has given us something so sweet. Something we never thought to seek after. Something we never knew we would champion. Charlie has given us a bigger world. A world where it is ok to be exactly who God made us to be. Charlie has taught us to live in the present. I never intended to form so many dreams for my child before he was even born. When we learned Charlie had Down Syndrome, so many dreams felt shattered. How could two people have already developed so many expectations and desires for their child who was only 8 weeks old. He has taught us that indeed, there are no guarantees in this life. There really aren't. So, we've learned to smile more. To laugh every day. To celebrate accomplishments that may seem small--things like swallowing a spoonful of rice cereal, or reaching to the side to get a toy.

It is rare to have a child with Down Syndrome. I am filled with gratitude that God gave us our son Charlie. That he gave us the opportunity to raise this little boy who has enriched and challenged our lives. I wake up every single day smiling ear to ear, because that is what I first see when I open my eyes: two chubby little cheeks, two navy blue eyes, and one bright smile hovering oh so close to my face.

Sunday, September 30, 2007

Live Long and Prosper

As we learn more and more sign language, we tend to use it more and more in our regular family life. It is common for Raymond to flash me the 'I love you' sign as he heads out the door for work. Well, like in spoken language slip-ups, sometimes the wrong sign comes out. A couple days ago as Raymond was headed out the door he turned to me and said "I love you," while flashing me the 'live long and prosper' hand sign from Star Trek! Ha ha ha!! Oh well, it was a nice sentiment!

Friday, September 28, 2007

Words

I just posted about Charlie's latest word, "No!" and thought I would post a list of words and signs Charlie knows.

Words:
Ball (ba), Bubbles (ba ba), Balloon (Boooooo, or Bababooooo), Moo (as in the cow says 'moo') (Boooooo), Blue (Boooo), Baby, Bye Bye, Hi, Night Night (na nei), Dada, Mama, More (mo), Three (eeeee) and of course No! Wow, that's 16 words!

Signs:
Ball, Hat, More, Shoes, Socks, Mom, Dad, Cat, Bird, Dog, Fish, Eat, Water, Brush Teeth, Sleep/Sleepy, Milk, Wash Hands, Medicine, Play, All Done, Bath, Car, Train, Bear, Baby. There's probably more, but I can't think of them right now. I think 25 is pretty good!

I should say that at first Charlie learned many of these signs by watching his Baby Signing Time videos, and did not necessarily know what all the signs meant. That is, he would repeat the sign if he saw it on the video, or if Ray or I signed it, but didn't know the connection. In the last month and a half or so he is really connecting his signs with the object or action or person they signify. It is so cool that he can tell us when he needs medicine, or when he is sleepy, or when he wants more of something. He is excited to tell us when he sees a dog or a cat, and likes to point out when he sees mommy brush her teeth or wash her hands. We are communicating, and it is trully wonderful to see his satisfaction in his ability to participate in the exchange.

"No!"

Charlie has learned a new word. "No!" He says "no" to almost anything we ask him or tell him these days. Just this afternoon as I was sharing some bits of my sandwich with him I asked him if he would like more, he looked at me and shook his head and said "No!" and signed 'more' at the same time! He also seems to know the correct context for saying no as he emphatically tells us "NO!" as we carry him to his room to change a diaper, get ready for bed, brush teeth, and other annoying little chores we do in life. I am very proud of him learning a new word. He is getting pretty good about learning new words. But I've got to say, I often wish it was "Yes" or "Okay" or "Yeah" in stead of NO! Oh well. He's making some great progress.

Monday, September 24, 2007

Buddy Walk 2007

We went to our second Buddy Walk this past weekend! We had a really great time. Charlie's new friend, Brooke, and her family was there. A bunch of our friends from our weekly playgroup joined us, as well as Grandma, Grandpa, and friends from church. It was a beautiful day, and there was lots of fun stuff to do before and after the walk. It was great to celebrate our son in such a special way with so many special people with us. Here are a few snapshots from our day.

Here's a picture of Charlie and Brooke (6 months old--isn't she sweet!)
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The walking part was a good time for a nap!
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Our Family
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Our group of walkers
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Aaron and Sarah
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They had balls AND streamers to play with!!!
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Tuesday, September 11, 2007

Diapers on the Line

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There's Just Nothing Like Dirt and Rocks

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Happy 90th Grandpa!

I just have to post a big HAPPY BIRTHDAY to my Grandpa who turned 90 on the 3rd! We went down to a big family bash Labor Day Weekend. Grandpa and Grandma hosted a wonderful party at their home with most of the extended family there, as well as close friends from over the years. It was wonderful to celebrate my Grandpa. He has had a very full and interesting life. I love listening to him tell stories from his youth: Working in a dairy making butter. Meeting a beautiful young woman named Phyllis in a little church where his brother was filling in as preacher. How he earned the nick name of "Chilly Chalmers" among his fraternaty where he had the job of keeping the books, and so kept the boiler turned down low to cut costs. Serving our country during the second World War. The illness that ultimately brought him and his young family to California where he worked for Lockhead. Living the American Dream...

Happy Birthday, Grandpa! Have a GREAT 90th year!

Thursday, September 6, 2007

Signs that Charlie is a Big Boy!

Here are three signs that Charlie is now a Big Boy:

1. This morning the phone rang, and Charlie answered it. No joke! The phone was on the coffee table where Charlie was standing. It rang, he picked it up, pressing the on button as he did, then put the phone to his ear and began talking!!! What was really cool is that it was his Grandma on the phone, so she got a special treat!

2. Also this morning, Charlie went poop on his pot! (Okay, I know you moms of young children can appreciate this!) We are not working on potty training formally, but if I think he needs to go number 1 or 2 I put him on his little pot and we read a book. Well today Charlie did a two!! We were very excited about that!

3. CHARLIE IS GOING TO BE A BIG BROTHER!!!! Yes! It's true! We are very excited to announce that we are expecting a baby in March! What an honor for Charlie to become a big bro. He is going to be so excited to have a playmate, sibling, and friend.

Tuesday, August 21, 2007

First Day of School

Charlie and I had our first day of school yesterday. I am taking 6 units at the University to finish up my degree in Psychology. Charlie gets to go to the campus children's center for two hours while I go to classes.

My day was okay. I'm not thrilled to be back in school, but need to get this degree squared away. I'm taking two psych courses. Family Relationships in Contemporary Society (by choice), and Evolutionary Psychology (by requirment).

Charlie's day was fantastic. The minute we walked into his classroom he lit up. Toys, kids, FUN! First we washed his hands at a sink that was at his level. He stood on the floor while I helped him wash up. He thought that was pretty cool. Then we applied the sun screen, put his stuff in his cubby, and before I could even say good buy he had crawled off to play with another little boy. "See ya mom! Don't hurry back!"

He played outside for quite a while, and when I returned to get him he was sitting in a toddler size chair at a toddler size table drinking his milk. The teachers told me that he just had the best time. They said he did great. I knew he would. This is exactly the type of stimulation I was feeling he needed. I am very proud of him!

Monday, August 13, 2007

Back in Cloth

After a one year break from wearing cloth diapers, Charlie's back on the wagon! We switched from cloth to disposables last September as we noticed Charlie was having a hard time learning how to move around with all the bulk between his legs. Well, he doesn't have problems moving around anymore, so we thought we'd go on the hunt for a trimmer cloth diaper that has plenty of room for his "Santa Belly." We are trying out our first brand today. They are called "bum Genius" pocket diapers. Pocket diapers are cloth diapers that have a inner and outer layer of cloth. The outer layer is waterproof and the inner layer is made of fleece. You stuff a special absorbent liner between the two layers. The fleece helps propell the pee into the liner and keeps the skin dry. A must for our rash prone boy. I have to say I love these little diapers. They are perfect for people who have been spoiled by the convenience of disposables. They are one size fits all so we won't have to buy more than one size, and will work for Charlie's future siblings as well. We are expecting a "Mommy's Touch" one-size pocket diaper in the mail this week to try as well. I know most folks who haven't tried cloth will never understand this, but I feel like it is Christmas. I love cloth diapers! There is just something about a baby in a cloth diaper, and diapers hanging on the clothes line.

Saturday, July 28, 2007

Shopping Cart Yoga

Tonight at the Co-op Charlie decided to entertain the crowds in line at the register with some Shopping Cart Yoga. He had his feet way up by his ears, bending and flexing his legs in ways only a veteran yoga-ist would dare. He drew quite the little crowd as the woman working the register kept calling over her coworkers to check out his moves.

Ya know, for a girl who never liked being the center of attention, this child of mine sure has brought us to center stage in our community. It's wild how much people are crazy for our little Charlie.

Tuesday, July 24, 2007

More Signs

Charlie has begun to sign 'Dad' and 'Mom.' He can also say 'dad,' but 'mom' comes out more like "Bup." It is very exciting. He is now up to 17 signs, and 6 words he can say.

Here's the list of signs:
Hat, Ball, Bear, Car, Eat, More, All Done, Shoes, Sleep/Sleepy, Bath, Dad, Mom, Dog, Shoes, Socks, Book, Play

Here are the words he can say:
Hat, Ball (Bau), Dada, Bubbles (Bubbu), Bath (Bas), Book (Budabudabuda)

He is so excited about learning new signs. And he often tries out new words. One thing is for sure, the kid has a lot to say. When he is playing by himself I hear a running 'commentary' of all he is doing. It goes something like this:

"Uh!....Weoweoweo...Ah!....We!....Ohhhhhh....Dadadadada!...Ch!...Muayda.....hmf!....Ba!..." And so on.

What a sweet and clever boy he is!

Friday, July 20, 2007

Flash Back Friday

After spending a week with my folks and watching "Baby Stories" on cable (Discovery Chanel - didn't know there was such a thing!), I felt reminiscent of those first few days after Charlie's arrival. Here are a couple pictures of tiny, newborn Charlie.

A picture of 1 day old Charlie
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Mommy and 4 day old Charlie
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Thursday, July 19, 2007

Anniversary

Well, it was four years ago today that Raymond and I celebrated our marriage. I was remembering our vows today as I was on my morning walk. "With all that I have, and all that I am, I honor you." Four years seems like a big milestone, yet in many ways I feel as if Raymond and I have just always been together. I never imagined that marriage could feel so comfortable, so safe. I feel so much gratitude toward this amazing man. He is an excellent husband and partner. He honors me for who I am and what I bring to our relationship. I hope he feels the same of me.

Raymond, Thank you for these four years. My prayer is that the Lord bless our marriage before Him, and keep us in His will. With all that I have, and all that I am, I honor you today, and everyday. I love you.
Your Kimberly

Arizona

Yesterday we arrived back home from a family vacation to Arizona to see Nana & Papa (Kim's parents). We had a really great time. We flew there and back, and Charlie did great. He enjoyed looking out the window of the plane, and "reading" the emergency preparedness card over and over and over! It was hot in Arizona, but the dry air makes it feel bearable. We were in the Sonora Dessert area, a short drive south of Tuscon in a town called Sahuarita. Nana and Papa have a beautiful veiw of the Santa Rita Mountain range. The valley is very green, surrounded by mountains on all sides. It was not a dessert like in Nevada. It was dry, but filled with mesquite trees, cactus, and other native plants. We had a great time taking walks in the early morning and looking at all the beautiful dessert vegetation. We also came across Jack Rabbits, Road Runners, Quail, and even a lonely Coyote. Very different from the Pacific Northwest, but equally as beautiful and interesting.

Here are a few shots of the wildlife we saw at the Tucson Desert Museum.

Coyote
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Javalinas
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Mexican Wolf
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Here's Daddy and Charlie enjoying the heat at the Museum
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Here's a few pics of our time at Nana & Papa's house

Nana and her boy
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Prickly Pear Cactus we saw on our morning walk
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A Saguaro Cactus and the Santa Rita Mountains - beautiful view on our morning walk.
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Our Little Family
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Wearing Papa's hat
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Reading with Papa
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Cooling off
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Friday, July 6, 2007

Lightbulb Parenting Moment

I had one tonight. A "Lightbulb Moment of Parenting." Charlie has had a hard time getting to sleep these past couple nights. Tonight, like many nights, Charlie needed a hand on his back to help him get to sleep. He could be sawing logs, but as soon as I removed my hand from his back he would begin to stir. Teething makes everything so hard. Poor Guy.

Anyway, as I was standing next to the crib in the dark with my one hand lightly placed on Charlie's back I began to think a bean bag might do the trick. If he is just needing the sensory input of a little bit of weight on his back to keep him calm, why not try a bean bag? Well, we don't have any bean bags laying around, but... We do have a Beanie Baby! The Beanie Baby, a little dog, was near the crib. I was able to grab it quickly and place it on Charlie's back. He settled right down again and I haven't heard a peep. GENIUS! Oh, and he looks pretty darn cute with that little puppy dog on his back;-)

Forth of July

We had a packed day this 4th. First we went to the Fair on the Plaza and enjoyed some live music, Mexican food, and browsing the booths set up. After that we headed to a BBQ at our pastor's home. But the highlight of the day was going up to Uncle Ryan's house to BBQ with Family. Uncle Ryan lives on a horse ranch. He and his Fiance have lots of dogs, horses, goats, chickens, and geese. Charlie had a really fun time getting aquainted with all the animals. We didn't get any good pics of Charlie with the dogs, but I tell ya, by the time we left he was one of the pack!

Here Charlie sits with Grandpa Robinson
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Here's Charlie with Uncle Russell and Duncan the horse
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Here's a picture of Charlie and Ricky Bobby, the Gander
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Flash Back Friday

I saw this idea on another blog to show pictures from the past once a week. Thought it was a good idea.

If you've read our "Meet Charlie" story (our first blog entry) then you know that Charlie's first smile came during the three weeks we were waiting for the results of the blood test that would tell us if Charlie had Down Syndrome or not. We were sitting in Church when we saw those first smiles, and were able to get him to do it for us again later that afternoon. Here is a picture of Charlie's first smile. He was 9 weeks old.

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Friday, June 29, 2007

Sickies

Charlie has been sick, and so have I. Actually it was last week we both had a cold. Charlie got a bout of conjuctivitis with his cold - that is, goopy eyes. Poor guy has to endure eye drops 4 times a day until it is gone. Not fun for him, not fun for mommy and daddy. It takes both of us to hold him down, hold open his eyes, and squeek two drops in any way we can. Ugh! We will ALL be glad when the five days of treatment is up!

Lucky me. I just started to feel like I was getting over the cold when I came down with the flu. Yuck! Body aches, fever, sore throat... I tell ya what, carrying a 25 pound toddler everywhere is hard enough, but when you're sick it darn near makes you feel like your heart is going to explode! Oh, and mom and dad (if you are reading this), I was missing all the good care you always gave me when I was sick. Popsicles, chicken broth, the Indiana Jones series on VHS... I was alone, so I just sat Charlie in front of the TV while I lay on the couch in misery. I'm glad to be feeling much better today.

Hey, so pray Charlie does not catch the flu as well. He's got enough going on with three teeth, possibly molars, trying to break through his gums. It can be tough being 17 months old!
--K

Thursday, June 21, 2007

"Book"

Here is a little video of Charlie saying and signing "book." You have to wait to the very end of the clip (don't worry it's only 30 seconds long). The word "book" comes out sounding like "but," and he always says it several times together "buta-buta-buta." You will see him sign "book" as well.

My hope is to post several clips showing Charlie signing and saying words (not easy!). We are just so pleased with his progress and really credit the Signing Time series for helping Charlie to learn that he can communicate.

Wednesday, June 20, 2007

curious, inventive, rambunctious, sensitive, affectionate

Many people think that children and adults who have Down Syndrome are all the same. It is a common misconception. The truth is, people who have Down Syndrome have many similar challenges, but in personality, looks, and ambitions are very different. As different as you or I. On the DownSyn Forum we participate on somebody asked what 5 words parents would use to describe their child with Down Syndrome. I posted some of the different responses below. As you can see, each description is unique. Not every description used words like 'happy' and 'content'. No one used the words like 'slow' or 'difficult'. Each child is described in terms we might use to describe typical children.

feminine, gentle, active, funny, and engaged...

observant, cuddly, strong, fearless, joyful

happy, active, determined, interested, cute

funny, flirty, calm, happy, stubborn

musical..stubborn...smart....independent...sassy

cautious, observant, snuggly, charming, and cute.

mischievous, feisty, strong, perceptive and hilarious.

silly, rowdy, a chatter box, energetic, and social

Tempered, persistent, cuddly, stubborn and observant.

And I wrote that Charlie is:
curious, inventive, rambunctious, sensitive, affectionate

All the ideas I had about Down Syndrome when we were facing Charlie's diagnosis were stereotypes that just aren't true. Charlie is nothing like what I had pictured when I was in that place of fear. Last night while getting Charlie ready for bed, a ritual Raymond and I do together whenever we can, Ray looked at me and said, "you know, I just don't think we could have gotten a better baby." It is so true. Charlie is simply an amazing little person. I know we could not love him differently no matter how many chromosomes he has. Everyday I am so amazed that we were given this beautiful gift. A wonderful and unique baby boy.

Monday, June 18, 2007

Our Baby Signing Time Success Story

Charlie is communicating! It all started a few weeks ago, Tuesday May 22nd, when he began to say and sign "hat." A couple days later he began to say and sign "ball" (sounds like 'bow'). Now he also says "bubbles" (bu-bu), "pop" (bop), "book" (bk), & "dada." He also signs "all done," "milk," "more," "shoes," "train," & "car."

When Charlie was 8 months old we bought him a set of DVD's: Baby Signing Time, volumes 1 & 2. Everyday before naptime we watch a BST DVD together. The DVD's teach American Sign Language through song. And you know what? It works! All of the words Charlie says and signs, with the exception of "bubbles" and "pop," are from the Baby Signing Time collection!

Children with Down Syndrome often develope language later than their typically developing peers. I never thought we would hear our son say his first words at just 16 months old! Now at 17 months he has a total of 12 words, including those he can say and those he can sign, to communicate with! He is learning new signs everyday. Just today I caught him trying to sign "bath" as he watched the "Sleep Song" on volume 2.

Here is a video of Charlie saying and signing his first word, "hat."


Baby Signing Time and the Signing Time series are great for any baby, toddler, or big kid (or adult!). We plan on purchasing the Signing Time series very soon. Be sure to check out their website.
http://www.signingtime.com/

Saturday, June 16, 2007

Father's Day

June 17, 2007
Fathers Day

My dear Raymond,

Today is Father’s Day. Your second Father’s Day. Congratulations. You are a wonderful Daddy.

I love all the things you do for our sweet son. I think it is really special that Charlie spends his mornings with his Dad. I am so thankful for the months you got up to tend to Charlie in the middle of the night. I love all the little games you play with Charlie that are yours and his together. I appreciate that you willingly change Charlie’s diapers no matter what is in there! You know, not all Dads are as involved, as willing to do the dirty work, or wanting to invest so much time in their children. Charlie is so blessed, as am I, to have a Daddy as dedicated and caring as you.

Thank you for being the best Dad ever!

With all my love,

Kim

Photo Sharing and Video Hosting at Photobucket

Thursday, June 14, 2007

Standing

Last night while getting Charlie ready for bed, Charlie pulled up to stand using daddy as support. Daddy was helping Charlie stand while Charlie was emphatically pointing and "talking" about the quilt hanging on the wall. Then, Daddy let go and CHARLIE WAS STANDING ALL BY HIMSELF! He only sat down once he realized he was standing on his own. In true Charlie fashion this means he will be standing on his own in one months time.

Wednesday, June 13, 2007

Meet Charlie

My husband Ray and I were excited to learn I was pregnant in May of ‘05. My pregnancy was simple, straight forward, ordinary. I was nauseous during the first semester. Energetic during the second. Ready in the third. We had forgone all prenatal testing during the pregnancy, save for an ultrasound at 24 weeks where we saw a fuzzy image of our sweet baby staring back at us with full cheeks, a pointed chin, and big round eyes.

After a wonderful labor and birth, our son, Charlie, was born on January 8, 2006 at 4:45pm. He was 7 pounds, 4 ounces, and 21 1/2 inches long. A precious newborn with brown fuzzy hair, full cheeks, and a button nose. Amazed and blessed to be little Charlie’s parents, we found ourselves deeply in love.

On his second day of life outside the womb, before we left the care of the staff at Mad River Birth Center, we had Charlie’s tiny ears screened for hearing loss. The nurse waited until Charlie was sleeping soundly, then slipped two little ear phones over his ears and administered the test as he dozed. He did not pass the test after two different tries, so we arranged an appointment with an audiologist for further testing. Most of the time when a newborn fails the hearing screening it is because of fluid or vernix in the ears that hasn’t yet cleared up. In Charlie’s case his hearing loss was permanent. A moderate sensorineural hearing loss in both ears. He would require hearing aids in order to hear well enough to understand language and learn to speak. We found this out when Charlie was 6 weeks old. The news was crushing. Our hearts broke to think Charlie had not heard all the songs we sang to him in utero. That he could not hear me coo and speak softly to him as we nursed. This was the begining of our journey to our “new normal.”

At Charlie’s 2 month check up, after updating the doctor about the hearing loss, the doctor began to ask me a lot of questions. Does he poop every day, can he hold his head up on his own, is he a sleepy baby. I’m a first time mom, and I figured the questions were routine until he asked if Charlie had smiled yet. No, he hadn’t smiled yet... Next the doctor said “I think Charlie may have Down Syndrome.”

Down Syndrome. The doctors words hit hard. I came in a beaming new mother, now all I could do was hold Charlie close as the doctor shared with me the signs of the genetic disorder. We would need to do a blood test called a karyotype in order varify the presence of a third copy of the 21st chromosome. I listened calmly, but with a growing pressure in my chest as I fought back tears. I agreed to the test, tucked the order for the karyotype into the diaper bag, dressed Charlie, stopped at the front desk to schedule his next check up, then drove straigth to the hospital lab.

We waited three endless weeks for the results of the test that would tell us if our son had Down Syndrome or not. They were some of the toughest days we’ve spent with one another. We looked at our sweet boy and felt like he was slipping away from us. All our dreams and expectations for our son were threatened. We were so afraid of what our future may be like with a developmentally disabled child. We worried about what the future may be like for Charlie. Would he have friends? Would he be included at school? Would he be accepted by his community? We cried, we prayed, we held each other. And, you know what Charlie did? Charlie smiled. He smiled because he knew everything was going to be alright.

* * * * *

Charlie does have Down Syndrome. And, to our surprise life with our little boy is nothing of what we pictured in those early days. Now 17 months old, Charlie is bright, energetic, and determined. He can crawl and pull to stand, he gets into everything, he communicates through words and sign language. He loves to play with other children. He is accepted by his community. He is sought out by others.

Charlie benefits from Early Intervention services. He sees a Physical Therapist, a Speech Therapist, and has an infant teacher come to our home once a week. He is a bit behind his typically developing peers, but with all the wonderful support we recieve he is reaching every milestone in his own time. We are excited about all of Charlie’s accomplishments and growth. We are excited about his future.

This morning as I watch my beautiful son creep about the house I am overcome with pride and love. In a little over a year I went from feeling like “why me?” to feeling like I’ve won the lottery. I’ve never won anything in my life, but when only 1 out of every 800 babies is diagnosed with Down Syndrome I can’t help but feel like I am that lucky One. Learning your baby has a disability is scary. But as the dust settles fear gives way to acceptance, acceptance to love, and love gives way to a “new normal.” A normal where you begin to see past the challenges, the differences, and handicaps and truely enjoy your child for who he is and the richness and depth that is his unexpected gift to you.
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