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


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


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.
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