Forever Better

Happy 3rd Birthday, Nate!

2012-01-01T13:52:00.000-08:00

Dear, sweet Nate...

I can't believe it's been 3 years since God placed you into our arms and challenged us to allow you into our hearts. Our hearts broke in those first moments, weeks and months. The picture of what we'd imagined for our lives had been shattered in an instant. But, slowly, God picked up those pieces and showed us how they fit into a beautiful picture of love and grace.

Nate, you are...a true expression of joy, resilient, patient, the best cuddler I've ever known, pure, loyal, adventurous, expressive, musical....you are LOVE.

I have learned so much from you. I have gained a deeper understanding of what it means to love. I have learned a new level of patience. I have learned to rely on God and recognize that he planned every step of your life (sorry, I struggle with this one from time to time, but I'm getting better). You have taught me a new level of compassion and understanding for others.

My frustrations with your extra needs and numerous appointments with therapists and doctors are FAR outweighed by my deep, deep love for you - who you are NOW and who you will become. You are amazing to me! Thank you for being one I can come to when I need to feel God's love in flesh. You wrap your little monkey arms around me and squeeze me just the way you know I need it.

Nate, I am proud to call you my son. It's hard to believe I hid you from others in those first few months of your life. If I could now, I would carry you on my shoulders everywhere we go and shout, "He is mine! He is amazing! God loved me so much He gave me this precious boy!".

Happy Birthday, Monkey!!!
Love,
Mama

2011 Family Recap

2011-12-19T14:16:00.000-08:00

Hi Friends and Family! Thanks for stopping by to read our family recap for the year. We had a year of growth, change, fun, love, challenges and a lot of laughter. We like to laugh around here!

CODY

Cody turned 5 in September. He is full of life and very active. He continues to attend Heart Centered Montessori a few days each week and has begun the afternoon math and reading program twice a week. He also plays soccer and has become quite a slugger with the baseball. He loves to build all sorts of things with legos and trios. He takes his role as big brother seriously and is great at teaching Nate new things. Cody talks to Mommy's belly quite a bit these days and tells his 2nd brother that he will "love him for life and can't wait to meet him".

NATE

Nate will be 3 on New Year's Day. It is hard to believe it's been that long already. Nate just began walking confidently in the last month and motors around ALL DAY LONG. We are amazed with his resolve to master new tasks and always with a great attitude. The biggest challenge continues to be feeding as he still hasn't learned to eat solid food. Much of the problem is likely due to the congestion he deals with, so we are working hard to try to resolve that issue. Last week he had new ear tubes put in and had his tonsils out. He's been a trooper. Nate's favorite things to do right now include cuddling, walking, wrestling with Daddy and Cody, putting anyone's shoes on his feet and playing the conga drums that sit in our hall.

DANIELLE

Danielle is now 7 months pregnant and trying to soak it up (she's one of those crazy ones who actually loves being pregnant). This has been the easiest pregnancy with no morning sickness or any other real challenges. She continues to run her boot camp business, West Linn Fitness, and is hoping to teach her classes up until 38 weeks (just like the other 2) before taking a short break. She is constantly trying to learn how to be a better mom and growing in patience daily. Danielle is enjoying being a small group leader for the woman's study at church. She celebrated her 39th birthday by writing a list of 40 things to accomplish before turning 40 and has enjoyed checking those off. Aside from welcoming boy #3 in March, she is most looking forward to running Hood to Coast again this summer (look for team "Girls and Guys with Achin' Thighs").

BOB

Bob continues to thrive at work and home! He has now been with KPD Insurance as a Broker for almost 5 years and has built a great book of business. At home, he works hard to connect on a meaningful level with Cody, Nate and Danielle on a daily basis which makes our home a warm place full of laughter. Bob coached the church softball team to victory and is looking forward to playing again this summer. He is teaching the 5th graders at our church each Sunday and finds new ways to connect with them each time. He's been suckered into running Hood to Coast this summer. Bob's latest quest is to convince executives at Porsche to develop a high performance Minivan (to be purchased before boy #3 arrives in March).

We have grown and learned a lot this year. We thank you all for being a part of our lives.

Merry Christmas and may your 2012 be deeply blessed!
Love,
The Paskins Family

Hard days come and go

2011-11-10T11:40:00.000-08:00

Hi friends,
Again, it's been too long. I'm not a writer so sitting down to write here is something I often overlook.

Yesterday was a hard day. They come every few months. Early on, when they came, they hit like a tidal wave and stayed for a while. Now, they come and go quickly. But, they do come.

While these days are never about not loving Nate, they are about the extra time/attention/perseverance/money it takes to raise him. We love Nate deeply, but sometimes it just feels so hard.

We are on the cusp of a new phase in Nate's early intervention. From zero to three early intervention services come into the home for therapies. In January, when Nate turns 3, we will move into a classroom setting. Nate will be in a class with 3 teachers and 8 students with a variety of special needs. So, what does this mean? A LOT of hard work is happening right now to try to prepare him. We generally have 4 appointments each week (right now, 2 in the home, 2 private) and that's both exhausting and expensive.

Nate is much like Cody was in the major milestones....taking his own sweet time....and then some! He is just now able to walk across a room unassisted (which is exciting for all of us) - Cody didn't walk until 18 months and if you double the timeline (which they say is an average for kids with DS), Nate's right on track for a Paskins boy.

Our biggest challenge continues to be feeding. Nate still eats like a 5 month old. The mainstay of his diet is smoothies (which I fill with all I can think of!) and he'll tolerate very smooth textured spoon feedings. He does not touch any food. Each time we seem to take a step forward, he gets sick and then we take a few steps back again. We've barely made progress in feeding over the past year. We have just begun working with a new therapist who has some great ideas, so we're hopeful, but it's a slow and stressful road.

I constantly feel like I'm inadequate....I am always wondering if I'm doing enough. If I've found the right therapists....if I'm working closely enough with him at home....if having him be so far behind now is a predictor of his future independence....

Last night Bob and I sat down to work through all of our medical bills from this year and came to the realization that $10-$15K each year is what we should expect in expenses for Nate. Our out-of-pocket for Cody this year? $3.71....yes, three dollars and seventy-one cents! That's hard too.

I'm not writing this to complain or get your "oh, Danielle, you're a great mom" comments. I'm writing because every now and then I just need to vent. Ninety-five percent of the time I'm fine. I love Nate and am confident God placed him in our family for a very specific reason. But every now and then I have a hard day. And that's real too.

To Test or Not to Test....

2011-09-22T14:55:00.000-07:00

Of course, at my "advanced maternal age" of 39, nearly the first topic of conversation at my first prenatal appt was regarding testing. Would we test? Would we meet with a genetic counselor? Did we know our "risks"?

Our risks....as in, did we know EXACTLY what was growing inside of me. Did we know for certain that this baby would be a perfect addition to our family? All the right genetic material? "Normal"?

WHO.EVER.KNOWS.THIS? We all know that we cannot guarantee anything with our children. They may have all the right chromosomes, yet bring us the greatest struggle and heartache. And those with an extra chromosome, deemed expendable by many, may bring us the greatest joy and learning. We just never know!

BUT, there was a piece of us that still wanted to get some information. To prepare ourselves. We had many long discussions and prayed about it for weeks. We were leaning toward not having any testing done and then Bob gently passed the final decision to me saying, "I know this is a lot different for you. You are living with the baby growing inside you and think about it a lot more than I do.". Again, my sweet and considerate husband.

For many, this is not even a discussion. They think we should test. But why? We know we wouldn't do anything different if we had more information. And, ultimately, isn't this all about trusting God. Trusting that the God of the universe knows exactly what we need and would never give us more than we can handle.

We soon realized that the initial screening tests likely wouldn't give us the definitive answers we would want and we'd need to do an invasive test such as CVS or Amnio to really confirm anything. These both carry a risk of miscarriage. Nationally, the risk is 1 in 250, but the experts in the Portland area have a rate of 1 in 850. BUT, once you ARE the statistic, the numbers really don't mean anything any more! Then, I spoke with a friend who had recently had a close friend of hers lose a baby after an Amnio. They later found out the baby was healthy. It happens. How could we possibly take that risk just so we'd get some information we'd do nothing with?!

So, we decided against testing. And we are COMPLETELY at peace. We are trusting that the little one growing in my ever-expanding belly is the perfect child for us.

Will the boys have a little brother or little sister...now that's some information we can't wait to get!

October 24th is the day we'll know!

With great anticipation,
Danielle

Adding to the Family

2011-09-20T16:36:00.000-07:00

(Day before Nate was born)

Near the end of my pregnancy with Nate, we felt pretty certain 2 would be a good number of children for us. But after learning Nate had Down syndrome, we began to question.

(Heading home from the hospital the day after Nate was born)

After about 6 months, I started feeling strongly that I wanted to have another. At this point, we were just getting into the nitty gritty of what having a child with Ds is all about (especially in regards to appointments and medical bills) and Bob was feeling this was enough for us to handle.

I continued to express my desire to have another who could "help Nate" and be a long term partner with Cody in watching over Nate. I'd so often heard that children with Down syndrome who are sandwiched by siblings are more successful, with a sibling to look up to and one who quickly catches up and pushes him.

Bob did not feel this was a good reason to have another since we wouldn't know what God would give us and he really didn't want me desiring a child to try to be or accomplish anything specific. So, we continued to bounce back and forth between periods of discussion and periods of independent prayer, promising to come to the other if God revealed anything to us.

About a year ago, after a several month hiatus from talking about the subject, Bob asked me why I wanted another child.
My answer: "I just love both of our boys so much that I want more of that."
His response: "That's what I've been waiting to hear."

My oh-so-very-wise husband had been waiting for well over a year for me to decide I actually wanted another child for the love of a child rather than to fill in some gap I thought was there. He was wise in never pointing me in that direction, but waited for me to come to it on my own.

So we both agreed that we wanted to try for another child and would trust that God would give us what he wants for us.

We will meet who God has designed for our family in the beginning of March. In the meantime, we grow deeper in love with Cody and Nate.

Behind closed doors

2011-08-24T13:18:00.000-07:00

My boys, that is. They're behind closed doors right now in the laundry room. Cody and Nate don't want me in there. Because they are brothers and isn't that what brothers do? They sneak away and do their own thing and don't let mom in. I opened the door and moments later, Cody slithered his body back over to the door to close it and remind me that it's "boy time". And.I.love.it!

Cody and Nate have really begun developing a close bond lately. Of course, Nate adores Cody and Cody loves the role of showing Nate his new tricks and trying to help him learn. Because 2 mischievous boys are always way more fun than just one.

This is something I really wondered about for a while. Would Cody miss out? While their relationship may be different from other brothers, I am deeply convinced that the brotherly bond they have will continue to develop into something amazing.

We still haven't told Cody that Nate has Down syndrome. We haven't seen a need to yet and he hasn't seemed to notice that Nate is any different from anyone else. Isn't that beautiful? We know the time will come, but at this point, Cody just sees Nate as his little brother and loves him as such.

They are blessed to have each other!

Always wanting to put big brother's shoes on!

Chat's in "Daddy's Chair"

And, of course, wrestling matches!

God is Good - a video interview

2011-08-22T15:51:00.000-07:00

About a month ago, my church did a message on God's goodness in hard times. Although the videos did not get shown in the service, I just learned they were posted on the internet. A friend of mine follows directly after mine.

God Is Good: 2 Stories from Willamette Christian Church on Vimeo.

Development Update: Feeding

2011-05-15T14:43:00.000-07:00

How.Do.I.Begin???

This is, by far, the most frustrating area with Nate. At 28 months old we are feeding him like a 5 month old. Feeding issues are common with Down Syndrome, but this seems to be far beyond the common issues seen. For many months we tried to feed Nate simple foods like yogurt, applesauce and pureed foods. At first, with very smooth foods, it went fine. But as we started to introduce more texture (like mashed banana or yogurt with rice cereal), the challenges began. Nate.would.SCREAM. It was awful!

We tested him for sensory issues, but that is not the problem - in fact, he loves feeling all different kinds of textures - his favorite books are "touch and feel". We also did a swallow study where they died his food and watched it go down through x-ray cameras. Nothing was found there. So, we needed to assume that this was a battle of the wills and he was capable of handling the food we gave him. So, we started pushing harder. Just enduring his screaming and crocodile tears. It broke my heart and became a very difficult way to start each day. Cody began begging me to not feed him.

A couple of months ago, I'd had it! He was losing weight and I had lost all patience. So, I started feeding him smoothies exclusively. We both needed a break. Peace was restored in our home and I had a peace of mind knowing Nate was getting everything he needed in my blended concoctions (my favorite: banana, avocado, mango, almond butter, rice cereal and almond milk). So, we gave him 4 or 5 smoothies a day and still did bottles at nap and bed time.

Then, in the beginning of April, we went to our ENT for Nate to have tubes put in his ears and adenoids out. She asked about his congestion and the rattling sounds coming from his chest. I told her it's pretty much his normal and she asked if he'd ever been tested for reflux. NO. hmmmm, really? He's never spit up or thrown up, but the doc explained that he could have silent reflux and not actually show any symptoms. Great!

While he was under during his procedures, she suctioned gunk out of his lungs and was able to definitively say that he does have reflux. Are you kidding me? He's over 2 years old and I'm just now learning this? What?!

Our ENT recommended we get another swallow study done at the Children's Hospital. Our previous study had been done at our local hospital which does not specialize in pediatrics - lesson learned! This test showed something very clearly. Nate was able to swallow fluids (juice) and thicker liquids (smoothie) just fine, but when the food was thickened slightly (yogurt with rice cereal - just a little pasty) he had problems. The first swallow of a bite went down, but the leftovers just swashed around in his nasal passages and throat. So, if we were to add another bite to that scenario, it's clear why he would begin to panic. He felt like he was suffocating! The speech therapist conducting the test said it's "muscular dis-coordination" and that it SHOULD resolve eventually.

So, where are we now? Still mostly doing smoothies and bottles and a little overwhelmed. We have gone all the way back to the beginning of feeding him baby food. We'll very gradually thicken his food and if he cries at all, we are supposed to pull back - just let him lead us.

This could be a.very.long.road!

If you have any ideas or resources, we'd be open!
Thanks,
Danielle

Next update: Communication

Development Update: Gross Motor

2011-05-11T11:27:00.000-07:00

(Age: 28 months)
Hi friends!
Thanks to all of you who read my last entry and left such great comments. I intend to continue this series, but wanted to first get everyone up to speed on Nate's development. I'm going to break it up into different areas so today is Gross Motor.

Nate is strong and does not have some of the joint laxity issues that others may experience, but he has certainly taken his sweet time with movement. However, given that he didn't sit independently until 15 months, I'd say he's moving along great. We are on the cusp of walking independently and hope he will be within the next couple of months. I'm so grateful to be looking forward to a summer of him being up off the ground without me carrying him everywhere.

At this point we are doing Physical Therapy 2x/week. One is in the home through Early Intervention and the other is private therapy at a local pediatric therapy clinic. We're going hard right now to try to push him over this hump and increase his confidence. Nate is doing a lot of great cruising along furniture and is excited to walk when we hold his hands. He loves to climb and I'm sure as he is upright more he will be more motivated to scale all sorts of objects! We were spoiled and never experienced the climbing challenge with Cody, so this will be a whole new adventure for us.

Next Update: Feeding

In HIS Image

2011-05-03T16:41:00.000-07:00

Hi there! I'm the type of person who has a hard time getting past the big, overwhelming task and breaking it down into parts. Hence, the absence on the blog here. It has been so long that I couldn't figure out where to start. Until now.

I've had a REALLY BIG change in the past few weeks. REALLY BIG! I went on a retreat and the theme was "Measureless Love". We learned about how infinite God's love is for us. I always hope God will speak to me with something very specific when I go on a retreat, but often I just have seeds planted and something to explore. This time was different.

My thought before the weekend: God gave me Nate AND He loves me.
My thought after the weekend: God gave me Nate BECAUSE He loves me.

Yes, BECAUSE!

God knew exactly what I needed when He placed Nate in our family. When I came back from my weekend away, I just breathed Nate in and held him and held him. I did not want to let him go. As if to say, "Hi little man, I see you and I've returned a new mom for you. I'm different. Do you feel it?". I think he does.

The week after the retreat, God showed me exactly what He was trying to tell me. Knowing that we are all "made in His image", I had to recognize that includes Nate! So, parts of God's character are expressed through Nate and since he is uniquely created, I have a chance to see something through Nate that I probably won't see through any other relationship in my life. WOW!

This realization made me want to chant, "I know something you don't know...nah, nah, nah, nah, nah, nah...".

I began STUDYING Nate and watching for God to show me what part of Himself He is expressing through Nate. The first 2 things I noticed:
*He cares about the little things - Nate was admiring his hands and it made me stop to see that, yes, all the intricacies of our hands, our fingers, the creases, fingerprints....all of it...it's amazing. God loves the details.
*He can't get enough of me - If Nate had his way he would climb all over me all day and savor every moment. He gives me kisses and cuddles and shows me how great he thinks I am every day. The Creator of the universe feels the same way about me!

I am going to try to share what God shows me through Nate in a series called, "In HIS Image". Thanks for being on the journey with me.

In great anticipation,
Danielle

Words HURT

2011-03-02T09:10:00.000-08:00

Today is "Spread the Word to End the Word" (www.r-word.org) Day, so I'm just doing my part. Please remember to talk with your families about using loving words rather than hurtful ones. This campaign is aimed specifically at the word Retarded since it is one that is often used in a negative way specifically against people with special needs. Please recognize if it's a word you use (many just throw it out when referring to themselves, but ultimately it has a negative connotation) and share with your children that words like this hurt.

Children with special needs are bullied up to 3x more than their typical counterparts. THIS IS CRUEL and breaks my heart to think Nate may have to endure that just because parents didn't take the time to have the conversation with their children. Please, add it to your list of important conversations to have with your kids on an early and ongoing basis!

If you'd like a place to start, here is a 10 minute video of a high school student sharing his thoughts on the r-word and how it relates to his brain-injured sister. This is perfect for middle and high schoolers.

Nate and his friends thank you!

This is Ridiculous!

2011-01-31T21:46:00.000-08:00

I'm talking about the "Up and Down Roller Coaster" - a 10 foot coaster we have in our great room. Nate absolutely loves it and I'm more than thrilled that he can ride down it without us holding on to him, but I think I've gone a little nuts here. BUT, when I saw it I just knew it would be a great tool for him. Fortunately, it comes apart very easily, so we can put it away when the boys are done for the day (yes, Cody rides it too!).

Oh, and someone finally got a haircut! He looks like such a big boy now!

Wordless Wednesday

2011-01-26T10:28:00.000-08:00

I figured after so long of not posting, it would be appropriate that my first would be a wordless one. I'll write soon!

Here are some pics I took yesterday that show the range of expressions Nate shows us - this was all within about 5 minutes!

Enjoy!

We Get it Now!

2010-09-23T15:04:00.000-07:00

It seems appropriate that on this first day of Fall, I take a moment to think back on this Summer. For us, it was the Summer of TRANSFORMATION!

After Nate was born we received many phone calls, emails, notes and random-passerby-mentions to the effect that our son would "bring us so much joy" and "be such a blessing". In those early months we wanted to tell them to keep their happy thoughts to themselves. When Nate passed 6 months, then 12 months and was closely approaching 18 months, I started to wonder when this joy was going to come. I wasn't feeling it. I posted about it a while back and got several responses to be patient, it would come.

AND IT HAS!

Both Bob and I have experienced a major transformation over the last couple of months. And yes, I can say it, loud and clear, "NATE IS AN ABSOLUTE JOY AND BLESSING"! There, I said it!

Nearly everywhere we go, Nate just spreads his joyful spirit around. I often have people ask me if he's always "this happy" and I tell them, yes, pretty much, about 95% of the time. There is a pure love and joy that seeps out of every last ounce of his 25 pound sack-o-potatoes body. It's really hard to be down for long when I'm around him and I happily tell people to come spend time with us anytime they need a pick-me-up. Really, I think it should be called "Up Syndrome". Why did the darn guy who discovered the triple 21st chromosome have to be Mr. Down????

No, I'm not saying having a child with special needs is all roses. But, honestly, if I had to choose a disability, I'd choose to have a child with Down Syndrome. He will eventually be able to do everything. And in the meantime, he is lighting up the world one wide-mouthed smile at a time.

God, thank you for answering our prayers with exactly what you thought we needed....Nate.

-Danielle

More Music, Please!

2010-08-22T21:06:00.000-07:00

"Stupid"

2010-08-13T14:40:00.000-07:00

I've had my first dose of hurtful language toward Nate....from his brother!

Somehow, Cody picked up the word, "stupid". I think the boys at school have been throwing it around while they play outside. They likely don't know the strength of the word.

A few nights ago, we were at our local Down Syndrome organization's annual event at a small amusement park. While we were waiting for a ride, Cody very sweetly whispered in the ear of my friend, Megan, "Ben's stupid.". She looked at me concerned about what Cody had just said of her 4 year old son with DS. I couldn't believe he'd said that and talked with him about how hurtful that word can be and that I would like him to use nice words. Then, last night, as we were getting into the car, he said, "Nate's stupid.". While the comment about Ben was mostly embarrassing, the comment about Nate hurt. It hurt deeply. Not only because Cody had said it, but because I knew this was just the beginning. I know Cody will grow to understand, and likely be an advocate for, Nate, but what about all of the other children out there?

When I dropped Cody off at preschool this morning, I had a quick chat with his wonderful teacher, Meg. She agreed to do a circle talk about how words can be hurtful. I'm sure it won't be the last time we collaborate about something like this.

So, whoever came up with the saying, "Sticks and stones may break my bones, but words will never hurt me."? That's STUPID!

-Danielle

Wordless Wednesday

2010-08-11T15:30:00.000-07:00

I'm sorry it has been so long! I hope to write very soon, but in the meantime, thought I'd show you a few pictures Cody took over the weekend! Pretty good for an almost-4-year-old!

My Champ!

2010-06-20T21:35:00.000-07:00

Early on in our relationship, I began calling Bob "Champ". I honestly can't remember how it started, but with each passing year, Champ grows more and more into his name.

And Father's Day is a great reminder of just what a Champ he is. Bob is an amazing Father! I always knew he'd be good, but he has far exceeded my expectations. He pours all of himself into our boys. No matter what kind of day he's had, he comes home from work and dives right in. He is a "get-down-in-their-world" kind of dad. He'll play chase for what seems to be hours. I often try to play something with Cody and he'll quickly say, "No, Mama, that's Daddy's special game". I love it. I never feel an ounce of jealousy when I hear those comments from Cody or see Nate's face light up whenever Bob comes in the room. I adore him and so do our boys.

Nate's first REAL bath

2010-05-27T14:11:00.000-07:00

Wordless Wednesday

2010-05-26T10:08:00.000-07:00

Making Progress

2010-05-14T10:25:00.000-07:00

Progress is a funny thing. People ask me all the time how Nate is doing. I'm not really sure how to answer that. Well, he's 16 months, but looks and acts like an 8 month old. How is that? He's about the sweetest little guy around, but progress is slow, really slow. Looking at the range of timelines for milestones does not help me anymore. Nate is on the slower end of the range, so what used to give me comfort now causes concern.

I asked our Speech Therapist if there is any correlation between a slow learning curve now and ultimate function later in life. She danced around for a minute, but then said that there are some who believe that a slower start means lower function.

Hmmm, what do I do with that? Do I dig in and push, push, push? Yes, I have to.

As a Personal Trainer, I am used to pushing people. But, I've never had anyone come to me and say, "I'm going to live with you for the next 20 or so years and want you to do everything you can for me to be the best I can". That is a lot of responsibility!

I'm not a runner, but I don't avoid it altogether. I don't hate it, I just don't crave it like some I know. I think it's ridiculous that Marathons have been introduced to the masses. (Did you know the first Marathoner died at the end?) I have seen way too many people burn out or have long term injuries from pushing their bodies to run marathons. I'm more of a short distance girl. 5k, 10k, even a half marathon. So, looking at this long term commitment to Nate's care feels really big!

Okay, so that's what I've been feeling lately. Haven't wanted to write about it because I want to be past this place. I adore and love Nate so deeply, but there is still a part of me that wishes I could blink and we'd be back to the day of his birth and I'd see a different baby....so, I beat myself up. I've had to process this lately because I have been eating out of control and know without a doubt that when I eat like this it's because there is something I don't want to have to deal with...

So, now I'm writing. And dealing...

And actually, we've had some really big progress over the last month. When Nate turned 15 months and still wasn't sitting for longer than 10 minutes on his own, I shared my frustration with our PT. She looked around our family room for ideas of how to help him sit and came up with this setup:

It's a balance disc behind a table the great people at Early Intervention made. So, sitting on this unstable surface gave Nate a constant reminder to work to stay upright. We put him on the front 1/3 of the disc so that if he started to lean back, the pressure of the air at the back would give him a nudge to sit back up. The day after we came up with this setup, Nate sat for 1.5 HOURS STRAIGHT!!!

So, a couple of days later, we were able to take him outside and he sat the entire time while we planted our garden!

We used this approach for about 10 days and then took him off the disc. Now he can sit and play for a really long time!!! He even spins around on his tush to get different toys.

And as of yesterday, Nate is drinking from a straw!!!! This is so exciting for us! It literally just happened. He sucked down an entire honey bear of apple juice with his tongue pulled in!!!

I'm really hoping that he was just stuck in a place of slower development because he hadn't mastered his gross motor skill of sitting. Maybe now he will flourish and just surprise us with all sorts of new tricks!

Here's a video of us playing last week - he was in such a great mood!

-Danielle

Two New Friends

2010-04-07T19:31:00.000-07:00

Nate has made two new friends this week....

1) Talking Elmo, who is really helping him build his endurance while sitting.

2) His reflection, who he really loves to kiss!

-Danielle

Clapping

2010-04-06T20:01:00.000-07:00

Nate has been clapping for a while now, but I hadn't been able to capture it - finally did today - so stinkin' cute!

-Danielle

Picky Eater!

2010-04-01T16:15:00.000-07:00

With all of this extra feeding lately, I am learning that I have a son with an extreme sweet tooth! Nate will not eat ANYTHING savory! I thought maybe it was just because he's been eating jarred baby food and that can tend to be a little bland, but no, I made some great Sweet Potato/Apple/Chicken puree and he didn't go for that either. Seriously, he gets really mad at me and just spits it right out! Then I go right to applesauce, bananas - anything sweet or tangy and he loves it.

I've also tried spicing things up to add flavor, but still, he hates it!

Any ideas???

-Danielle

Oral Motor Therapy

2010-03-29T20:14:00.000-07:00

It has been such a long time since I have written. I apologize to those of you who depend on our blog to know how our little guy is doing. I hope to pick it back up again.

We just returned from a much anticipated trip to Arizona. At the National Down syndrome conference in Sacramento last summer, I attended an all day workshop with a Tuscon-based Speech and Language Pathologist, Sara Rosenfeld Johnson. She is doing incredible work for children with DS, and her approach really made a lot of sense to me. Since Sara is no longer seeing children one-on-one due to her speaking schedule, she referred me to Jenn Buck of Jabbermouths.

Children with Down syndrome are challenged by low muscle tone. This, along with a smaller mouth cavity, causes a noticeable tongue protrusion. Nate is often photographed with his tongue hanging out. So, as a Personal Trainer, approaching Nate's feeding and speech issues from a muscular perspective really makes sense. There are 14 muscles in the tongue and 82 around the mouth that all need to be "trained" and strengthened to work in harmony.

So, we met with Jenn 3 times over the week we were there and she gave us a program to work on with Nate for the next 6-8 months. This includes a "warm-up" time to prep Nate's mouth for the work, and a variety of tools and methods to help strengthen different parts of his jaw, tongue and mouth. The main thing we worked on was giving Nate added support of the jaw to allow his tongue to do what we were asking it to do.

(warming up the mouth)

We began using the honey bear to teach Nate how to drink from a straw, a modified cup to help him handle food that is place at the end of his tongue and employed a variety of methods with the shallow-cupped spoon. Nate did great and I am already seeing progress with tongue retraction and lip closure.

(The Honey Bear with berry applesauce inside)

(Poor little guy was too exhausted to sit up to eat some banana!)

We will continue to work with our Early Intervention Speech Therapist, but will also stay in touch with Jenn and likely try to visit her 2x/yr.

We're feeling encouraged and proud of our sweet Nate Nate.

-Danielle

Nate's Hats!

2010-02-18T22:06:00.000-08:00

Nate sports the Hanna Anderson Pilot Caps every day. Not because I think they are all that cute...honestly I much prefer his little curls on the top of his head...but because he HAS TO WEAR THEM. Our Audiologist recommended them to hold on his hearing aids (he has them in both ears) and prevent him from pulling them off. Fortunately, they are made of lightweight organic cotton, so he doesn't mind wearing them.

If you see pictures of him without his hat, it's likely for one of these reasons:

*I just want to have a cute picture of him with his little curls sticking up

*He is grumpy and the only thing that will make him happy is to decrease the stimulation and take off his hearing aids

*All of his hats are in the laundry

*He has outgrown the ear molds and we're waiting for new ones

*I just need a day off from dealing with them...

http://www.hannaandersson.com/style.asp?from=SC|1|1|156|47|10||&simg=22733_W14

-Danielle

Captured

2010-02-05T16:23:00.000-08:00

This moment was captured by a new friend at a play date today - simply amazing!

A Deep Respect for our Sweet Nate

2010-02-04T20:03:00.000-08:00

As of yesterday, at 13 months, our sweet Nate is sitting!

It has been a long journey to get to this point. He is a very wiggly guy, so sitting in one spot just has not been an interest of his, but yesterday, just like that, he was sitting.

And today, the overwhelming feeling I've had for Nate is RESPECT. Yes, I'm full of pride and happy that he has a new view of life, but the true feeling I'm bursting with is respect. I am just so impressed with how hard he has worked to get this far. He barely complains and just works as hard as anyone around him will make him. He whines a bit when he gets tired, but, hey, I'm a Personal Trainer and most of the people I've worked with would have quit long before Nate.

(don't you just want to kiss that face?!)

I'm learning so much from him and am seeing very clearly one of the reasons God placed him in our family. Nate is here to remind us to strive for our goals and to appreciate the smaller achievements along the way.

Nate, thank you. I love you more than I ever thought I could.

-Danielle

First Time on the Swing

2010-02-03T13:39:00.000-08:00

Nate is stable enough now that we ventured out this week to the swings.

He LOVED it! He smiled and kicked his legs.

Better yet, Cody LOVED it! He quickly figured out how to push Nate without getting bumped in the head and took on his big brother role proudly again!

I just adore these boys!

-Danielle

Please help Sofia!

2010-01-28T13:50:00.000-08:00

This is REALLY important to me....

If you have even just $10 to spare, please read the following post from my friend, Jen. I affectionately call her "blogger Jen" because she is the one who I was pointed to online (thanks Jen Ferrara) after I learned that Nate had Down syndrome. Her words were like bandaids straight to my heart and she was there for me in a huge way, right away!

Now, she is trying to adopt a little girl with Down syndrome, bringing her out of terrible conditions in Eastern Europe. It would mean so much to me if you would help Jen do this since she has helped our family immensely!

Here's her post:

http://savingsofia.blogspot.com/

-Danielle

Stuck

2010-01-27T19:52:00.000-08:00

Nate is doing quite a bit of moving - backward!

He hasn't quite figured out how to move forward, so it can get him into some precarious positions.

Fortunately, Cody has become quite the helpful big brother and is able to pull him back out to safety!

It's been really wonderful lately to see Cody become protective and watchful of his little brother. I'm looking forward to watching their relationship grow.

-Danielle

Thank You to My "Blogging Friends"

2010-01-24T20:49:00.000-08:00

A few days ago I expressed my concern that the blogs that have been such an inspiration and support were now becoming a challenge for me. That by reading other babies' accomplishments, I was questioning if I was doing enough for Nate.

Well, I have received quite a few responses on this and feel very encouraged. Thank you to all of my blogging friends out there - it's amazing to me that I have not met most of you, but feel this deep sense of connection and support through your words.

I am blessed to know you and thank you - I look forward to many years on this journey together.

-Danielle

Comparisons

2010-01-22T13:07:00.000-08:00

Today I read an entry from a blog I read regularly. This mom's 8 month old hit a huge milestone and is now sitting on his own. Sure, I'm happy for them. But this threw me into a tailspin of comparisons and concern. Nate is almost 13 months and still doesn't seem anywhere near being able to sit on his own. Our PT (who I think is amazing and doing a great job) keeps assuring me it's because he is such a squirmy guy. He really has no interest in staying in one spot. He's a roller and he's doing some rocking on hands and knees, but he really has to be entertained to sit up (while being supported) for any length of time. He just shoots his hips forward and slides right out of sitting position.

So, this is tough for me. The source of the most help and kinship comes from the blogs of other parents who have children with DS. But now that Nate seems to be falling behind even the DS curve, I don't know where to go.

Am I doing something wrong? Not doing enough? Or am I just being impatient and this other child sitting up at 8 months is way ahead of schedule?

I don't know, but I'm really in a bummer of a mood now.

-Danielle

This time last year: #3

2010-01-14T15:02:00.000-08:00

IS ANYONE READING THESE?

2/5/09 An email I sent to friends about 5 weeks after Nate's birth.

Hi friends,
I've really been wanting to write to give you an update. It seems I barely have a free moment in my day and when I do have time I just want to read or chill. I know you are all praying for us and can feel it!

First of all, a bit of an announcement. We have changed Braylon's name. His name is now Nathan Graham Paskins. This was a tough decision for us, but there are 2 very good reasons. First, if he has challenges with speech, he may not be able to pronounce Braylon clearly and since many have not heard the name, they may end up coming up with something else. You can imagine the frustration this could cause. The second, and just as important, reason is that we feel we need a name with meaning. Nathan means, "Gift from God". We want our son to know that is how we view him and we also need to be reminded in the challenging times ahead that he is our Gift. Already, with just a day of calling him Nathan, I have a deeper sense of connection with him.

It's hard to believe 5 weeks have passed since our lives changed dramatically. We are doing pretty well, but also recognize this is a lifelong journey we are on. Feelings will ebb and flow. I think we are through the shock and now just feel like we're going through the normal adjustment of having 2 kids. Nathan is very easy still - he sleeps, eats and poops and is extremely cuddly. I am only getting up once in the night, so I'm very thankful for that. I am still pumping and bottle feeding and may just need to keep that up (I've mastered the skill of pumping and doing just about anything - even driving).

Cody is presenting more of a problem right now. He is very 2 and a half! He knows how to push all of my buttons and is showing a lot of aggression. He growls and hits just about anyone. I'm hoping he is just working through the adjustment of having a brother and will return to the sweet boy I knew before he turned 2. His mood can go from great to terrible so quickly and I'm losing my temper with him a lot. I'm trying to get back to reading "Love and Logic", but have mostly been reading DS books lately.

Our support system continues to be amazing. Thank you for all of your devotions/words of inspiration you've been sending me. It really helps me to know I'll have those to look forward to each day. Please know that even though I don't respond directly, I am reading and appreciating them. Our family and other friends have also been great. Mom has jumped in and is really helping. Bob's mom visited a couple of weeks ago and my Dad was here today. We are receiving meals 2x/wk and people here (many from Baby Boot Camp) are trying to do that for many months to come. We have begun to connect with the Downs community and have met up with the family from our church who has a 3 yr old with DS - we really like them and are glad to have them around. Unfortunately, they are moving to a different county to get better services for their son.

That brings me to another subject. We have begun to learn that the services available for Nathan are not nearly what we'd thought. For example, when my cousin (who has DS and is now 12) was a baby, they sent therapists to her house 2x/wk. Now we will get 1 or 2x/mo. So, we are going to need to get a lot of private help. Our insurance will cover some, but not all, so it will definitely be a financial challenge to provide him the help he needs. For example, our insurance will cover 10 speech therapy visits/yr, but we will need many more than that. Also, they don't cover speech therapy for developement of oral motor skills, which is something we will need. We know God will provide the resources we need when we need them and are trying not to get too far ahead of ourselves.

I have found many great resources, but probably the most helpful at this point has been reading the blog a friend sent me. If you have time to take a look, it's http://trisacharm.blogspot.com/
If you don't have time to read much, it would be great if you could at least read this: http://trisacharm.blogspot.com/2008/05/welcome-to-holland.html

Thanks again for all of your prayers and encouragment. I hope that we will all grow and learn as Nathan does.

Love and hugs,
Danielle

This time last year: #2

2010-01-11T20:32:00.000-08:00

Since Nate just turned one, I want to take some time this month to share some of the emails I sent this time last year. I didn't start blogging until March, so these are writings that haven't been on the blog. NOTE: Just a reminder that Nate's original name was Braylon. We decided to change it after a month or so.

1/7/09 An email I sent to friends the day we got confirmation of Nate's diagnosis.

Dear friends,
I write this with tears and great sorrow to report that our dear baby Braylon has been confirmed with Down syndrome. I am overwhelmed with emotion. Bob, Braylon and I are home now while Cody is with my mom for the day/night. Our pastor is coming over in an hour to pray with us.

Our next step is to get an ultrasound of Bray's heart as 50% of Down syndrome babies have heart issues. Our Dr doesn't think that is the case with him, but we need to check anyway. I will also be calling the local support service that will come over and assess Braylon and set up a program for him.

I have never been faced with something so powerful - something that will be part of our lives forever - it's very overwhelming and I'm working on taking things one hour/one day at a time. I know God has great things in store for us - that he will strengthen us to handle this challenge. It's baffling to me now to think that just last week I was concerned about just being able to take care of two healthy boys - I can only do this with God's strength!

Thank you for all of your prayers and support.

Humbly,
Danielle

This time last year: #1

2010-01-08T11:40:00.000-08:00

1/5/09 Part of an email I sent to friends 4 days after Nate's birth

I'd like to start by sharing some of the birthing story with you as I see God's hand in it so deeply and know that he orchestrated a natural birth for me for a reason. After having contractions for 2 days, when I got to the hospital on Thursday morning, I was already at 7cm. After they checked me, they let me go get in the jacuzzi. I spent 2.5 hrs laboring in there. I felt very comfortable and relaxed and would actually just sit back and chill and talk between each contraction. After about 2 hrs, we decided it was time for Bob to take a break and my mom took his place in helping me. Bob went to get something to eat downstairs, but then my water broke. I immediately felt I needed to push, so they rushed me down the hall by wheelchair and got me back to the room. Mom called Bob and he got back to me as fast as he could. At this point I started to panic, but then the Dr (who God appointed to be on call that day and was not my Dr) got close to my ear, squeezed my hand and said, "Danielle, you can do this. You can do all things through Christ who strengthens you". Wow, what a blessing. I pushed for about 40 minutes. Braylon was placed directly on me and moments after holding him, I looked up and asked anyone listening, "Does he look like he has Down syndrome?". I looked at my moms face and knew she was thinking the same thing. They called the Pediatrician to take a look at him. While many things are in his favor (strong heart, strong lungs, able to cry and nurse), there are also several things that caused us to wonder (squinty/slanted eyes, low muscle tone, extra skin at the back of his neck). The Dr would not deny or confirm our concern, but said he could see what we were seeing and suggested we get a blood test done to figure it out (we never did the screening during pregnancy because we knew we wouldn't do anything about it and it could cause a stressful pregnancy - all 3 of my ultrasounds I had never showed any concern).

At this point, the wind was completely taken out of our sails. I couldn’t believe I could have just gone through this amazing life-changing experience of natural labor and now may be raising a child with special needs. But I know now that God made that experience part of the journey to remind me in a strong way that I am a strong, capable woman. I have grown way too reliant on others over the past few years and know I need to rely on God’s strength now and allow him to work through and in me.

Wordless Wednesday - just giggles!

2010-01-06T16:09:00.000-08:00

What a difference a year makes!

2010-01-01T19:57:00.000-08:00

Happy 2010!

It's not only the start to a new year, but today Nate turned one. It is so hard to believe. On one hand, it feels like SO long ago that we first held him, and on the other, it feels like the year flew by.

At this time last year, we were only 9 hours into parenting Nate. We were in shock and very, very sad. His diagnosis would not be confirmed until a week later, but in our hearts, we knew Nate had Down syndrome. We cried so much that week. There were many times I cried so hard I could not even stand. I was afraid to be alone - overwhelmed by the thoughts and unknowns running through my mind. It was the hardest time in my life. I suddenly felt like the pregnancy I'd just experienced had all been a lie. Like I had an expectation and a vision that was so completely different from the reality of what would be.

Reading reflections on other blogs, I often read that people wish they hadn't wasted time being sad at the beginning. That now that they were several years down the road they realize that their sadness was not neccesary. So, today I asked myself if I wish I hadn't had the reaction I had. If I wish I hadn't been so sad. If I wish I hadn't spent hours on my knees begging God to take Nate back. If I wish I'd recognized him as a gift from the start. My answer: NO! If I hadn't had the reaction I had a year ago, I wouldn't be able to realize how far I'd come today. I wouldn't be able to relate to the fear and sadness so many have when they get the results of pre- or postnatal testing.

Over this last year I have grown a lot.

I've come to understand that this life I'm living is not all about me. This life I'm living has purpose. This life I'm living is capable of changing other lives. This life I'm living may look different from "the norm", but I'm guessing it may end up being a lot fuller because of it.

In those early weeks after Nate was born, I wanted to hide him. I was embarrassed by him, felt like there was something wrong with our reproductive capabilities, didn't want anyone to ask questions or make comments. I'd go to the store and make sure he was fully hidden in his little carseat.

Now, I show him proudly! His smile and innocence melts the hearts of just about anyone who comes in contact with him. I honestly, truly, deeply believes he is a gift. And gifts are meant to be shared.

In the coming weeks I hope to share some of the thoughts I had at this time last year (especially since I didn't start blogging until March). This may be especially helpful for those who are new on this journey, but I also hope it will show you how far I (and we) have come. God is so good.

Thanks again for all of your support and love. We are grateful beyond measure.
-Danielle

Merry Christmas - Recap of Our Year!

2009-12-19T11:23:00.000-08:00

2009 brought many joys and surprises. The biggest one (well perhaps not in weight as he was only 8lbs and 3 oz.) was the birth of our second son, Nathan Graham Paskins. Nathan, or Nate-Nate as we affectionately call him, was born on New Year's Day. He was the first baby born in the hospital this year, and the hospital provided us with several gifts to celebrate the occassion. However, as our financial friends pointed out, we just missed the tax deduction. Oh well, that is something to look forward to in 2010.

However, we were not done with surprises on that day. We almost instantly realized that Nate-Nate had Down syndrome. This was a huge shock to us and took a lot of prayers and support to help us adjust to this new reality. We have had countless visits to doctors and therapists (as regular readers of this blog know), but we are encouraged that Nate is quite healthy, and progressing more and more each day. He is a very sweet, smiley little guy.

Cody (who turned three in September) enjoys being a big brother - although he had his reservations at first. Once he figured out he could make Nate smile, it became one of his favorite pastimes. In August, Cody began Pre-school three mornings a week and loves his Montessori program. He's all boy and loves anything and everything transportation-related, playing chase, playing catch and moving constantly. Cody will tell you that his favorite food is salad - with several varieties of fruit close behind. He could eat bowl after bowl of fruits and vegetables and is probably the healthiest eater in the family. Cody is so much fun and continues to entertain us with his great personality.

Danielle is keeping busy and doing great. Not only does she take care of the boys during the day, but she has started a Women-only Boot Camp that meets at 5:45 in the morning. In September, she reluctantly ended her stint as a Baby Boot Camp Instructor, after 3 1/2 years, to focus on the boys - especially Nate's frequent therapy appointments. On top of that, Danielle is involved in the reunion committee for her 20th high school reunion. Oh, and one last note, Danielle also is getting quite a reputation for her prowess in baking chocolate chip cookies. As a personal trainer, she likes to call it "job security".

Bob is still at KPD Insurance and, despite the economic conditions, doing quite well at his job. The boys light up when he is home and constantly want to play with him or help him with family projects. This year he captained the church Men's softball team. The team went 3-6-3 (yes, apparently there are ties in softball) so he is looking to improve on that for next year. Additionally, he has played drums at church several times over the year and tries to play pick-up basketball once each week. His highlights of '09 were going to see Star Wars in concert, and getting special backstage passes to hang out with the band, the Fray.

We thank you all for your support this year. We are extremely blessed to have such love surround us through the twists and turns of life.

Merry Christmas and a Happy New Year to your and yours.

With thanks and love,

Bob, Danielle, Cody and Nate-Nate

Ah-ha Moment

2009-12-12T20:09:00.000-08:00

I recently had a pretty big "Ah-ha Moment".

Since Nate was born on New Year's Day, we still had a wall in our family room covered with Christmas photo cards of many friends and family when we brought Nate home from the hospital. This wall remained that way for several months as it served as an amazing reminder of the support system we had. But the wall also served as a reminder to me that our family photo for Christmas cards would be much different than I ever thought. I shed many tears thinking about our '09 photo and thought making our photo card this year would be very painful.

Well, I picked up our cards yesterday and realized that I hadn't even given it a thought. Instead, I'd simply thought how much I loved the pictures we got of our sweet little guys.

Another realization that feels really, really good!

-Danielle

"Glee" Redeemed

2009-11-12T10:13:00.000-08:00

About a month ago I wrote an entry about how I thought Fox's show, Glee, was not sensitive to people with disabilities. I was offended by some of the things they said about "special ed kids", "mongoloids", as well as insensitive comments about other disabilities. Well, I'd considered boycotting the show, but for some reason, got sucked in.

Last night's episode has redeemed the show for me! I was so surprised to find that what I thought was offensive had now become a show working hard to break through stereotypes and make the viewers aware of the struggles some go through. The entire Glee club spent the whole week in wheelchairs to try to understand what one member of the group experiences on a daily basis. The Glee club quickly realized how difficult his life is and experienced the prejudice he lives with. They then introduced a girl with Down syndrome. The coach of the cheerleading squad (a very harsh, insensitive, guarded character) was forced to hold open auditions. After the girl with Ds stumbled through her audition, the "Cheerios" coach tells her she made the squad. This part made me a little nervous, thinking the coach was going to show her insensitivity again. I actually watched the rest of the show with a bit of anxiety and anticipation, just expecting to be offended. Instead, I was pleasantly surprised to watch this cruel cheerleading coach soften as she walked in to visit her older sister who had Down syndrome. Her facade melted away and she lit up as she sat next to her sister's bed and proceeded to read a story to her.

This show may actually have a chance to raise awareness and change perceptions about Down syndrome and other challenges.

I stand corrected and humbled.

-Danielle

Update - Nate at 10 months

2009-11-08T20:38:00.000-08:00

Hey there! I haven't been writing much lately. I had started using Blogging as a therapy of sorts and think I just got through a really tough patch and then didn't need to write as much. So, now I need to get back to my original purpose of the blog and just keep all of our friends and family up to date!

First of all, we are doing well. We have really turned a corner as a family. We now see that Nate is just another part of our family and we are cherishing him. He has mastered the art of melting our hearts with that full face smile of his and we love it! I can honestly say I don't have sadness over him anymore. Yes, I have times of frustration or just feeling overwhelmed with all that needs to be done for him, but sadness is not part of that. I see that we have a very unique opportunity to see life through a very different perspective than most. I see that our child's special need is not nearly as challenging as so many others out there. Okay, if I'm really honest, I do have moments when I look at other families and wish for a second that I could have the typical life....but, does typical mean great? Has having Nate made us stop and evaluate what life is really all about? Yes, I think it has. And I think, from what I hear, that we will continue to slow down and appreciate the little things in life.

So, on to the update about Nate:

Hearing

We have been using a hearing aid with Nate for a couple of months now. At first, it seemed very cumbersome, with it giving feedback every time he turned his head or rolled. But, with the help of the Hannah Anderson "Pilot" hat, we have worked our way up to 6+ hours each day. They seem to help, but we still know it could be better. These hearing aids are set at very conservative levels since we still don't know his exact hearing loss.

We went to the ENT Doctor last week and she was able to finally see in Nate's left ear canal. She got quite a bit of wax out and then could see to the drum. She does not think Nate has any fluid in his ears, so we will not be getting tubes at this point. Now that we know he doesn't need tubes, we are cleared to go in for another sedated hearing test. This is scheduled for 1pm on Nov 20th. After that, we should know his true hearing levels and be able to get the aids adjusted accordingly.

Heart

We went in last week for Nate's 2nd echocardiogram. There is a valve in the heart that is open in utero and is supposed to close at birth. When we went in at 6 weeks, it hadn't closed, so they asked us to come back. It still hasn't closed, but it does not appear to be affecting the heart. Our cardiologist does not feel it is necessary to perform the procedure to close the valve at this time. We will go back when Nate is 3 and see how it looks then.

Feeding

We're working on this. We FINALLY had a county speech and feeding therapist come out to the house (after a 2 month wait!) last week. I just felt at such a loss on how to feed Nate since his tongue just pushes everything out. She gave me some great exercises and tips, so I feel much more empowered now.

Gross Motor

Nate continues on his slow, steady path. He is rolling all around, transferring his weight while on his tummy, reaching for toys, holding his bottle (at times), pivoting on his tummy, doing a little bit of prop sitting and holding his head up very well. Nate has an opposite challenge than most babies with Down syndrome. Most have very week muscles on their front side (flexors) and stronger on the back (extensors). So, this means Nate loves to lie on his back and stick his feet in his mouth and roll around. But, it means it's very challenging for him to sit up straight. We have started using kinesiology tape, which we tape in a certain position on his back so that if he slouches it gives him a reminder to lengthen his spine and sit up. This seems to be helping, but I'm imagining we have a few more months before he will be able to sit up on his own. In the meantime, I'm just enjoying this elongated "baby" time - don't we all always say the baby phase goes too fast with our typical children? This is my chance to truly appreciate it!

Social

This is the one area Nate is not lacking! Nate is extremely social. He has excellent eye contact and always wants to be around others. He is magnetic!

Okay, I think that sums it up for now!

Thanks for reading!

-Danielle

A Nuzzle says a thousand words

2009-10-05T13:21:00.000-07:00

I wish I'd had my camera this morning. If I did, I would have handed it to any passerby at Trader Joe's. Cody was at preschool, so Nate and I went grocery shopping.

I think I've turned a corner recently. The corner I'd been looking for on that long, narrow path I've been walking for 9 months. I really wasn't sure when I'd find this turn in the road. But, I really think I have.

So, there we were in TJ's. I had Nate facing outward in the Bjorn and was wearing him proudly. Yes, I saw a few of the "oh, poor woman" glances, but mostly I got really kind smiles. But after about 10 minutes, Nate had no interest in looking around. He began searching for me. I didn't have his hearing aids in, so he couldn't really hear me and just had to feel for me. So, he turned his head as far as he could and looked up. I kissed his forehead and he just nuzzled right in. Awww, it felt so goooooood. He just kept stretching that thick little neck of his to try to get just a little closer and nuzzle more. I paused in the dairy section and just soaked it all in. I nuzzled right back.

For a moment, I thought I should turn him around to face me so we could continue our lovefest. But, I didn't want anybody else to miss out on his sweet face and smiles.

This is such a huge shift from those first weeks after he was born. I have such clear memories of keeping him concealed in his carseat while I was out and about. I was embarrassed to be his mom. I'm not saying every day is a walk in the park or that I don't still get sad, but I am saying I see little Nate differently now and am proud to be his mom.

- Danielle

Thoughts on "Glee"

2009-09-17T14:38:00.001-07:00

With the Fall TV Season starting up, I've heard a lot of hype about the new show, "Glee". So, I watched a couple of episodes and am left questioning if I should watch it again. Yes, it's clever and entertaining, but I'm finding I have a new hot button that may just cause me to press the off button.

So far I have heard at least 3 negative comments about "special ed" kids. The Glee club is made up of those who are supposedly the outcasts of the school and they have several times made comments that the kids in special ed have more talent, more attention, etc than they do. This is obviously done in a derogatory manner.

If I just turn the show off, what good does that do? But am I being too sensitive or should I speak up? Yes, the show pokes fun at other "atypical" groups, but this is the one that really doesn't settle with me.

Any thoughts? Do I do something about this?

-Danielle

Hearing Aid Update

2009-09-13T14:42:00.000-07:00

(In order to keep his hearing aids on, our Audiologist suggested getting these Hannah Anderson Pilot hats)

First, to review our findings in regards to Nate's ears.

After 5 hearing tests, we are still unclear as to the exact amount of hearing loss Nate has, but it is believed that he has moderate loss in the right ear and moderate to severe in the left. So, for him, it's like hearing underwater. He hears lower tones, better than higher. A couple of reasons we're having a hard time getting an accurate read: 1) His ear canals are extremely small (even smaller than most kids with DS) and 2) We think he has fluid in his middle ear, but cannot put tubes in yet because his canals are so small. So, he has some degree of both conductive (can be fixed) and sensory-neural (permanent) hearing loss.

Of course, for speech development, get Nate's hearing at its optimal is critical. What we've decided (along with several audiologists and our pediatric ENT) is to get him fitted with hearing aids adjusted to accomodate for the fluid in the ears and then re-evaluate in another month or so to see if his ears have grown enough to see inside the ear and potentially put tubes in. He will then have another sedated hearing test (ABR) and then we can get his hearing aids adjusted for that level of loss.

So, we picked up our temporary hearing aids on Tuesday. Fortunately, the clinic we are working with has loaners, so we can use theirs at no charge until we get a final reading. This will likely be after Nate's 1st birthday and will also be in 2010 when insurance will begin to be required to pick up the very expensive tabs on the hearing aids - amazing!

Unfortunately, the ear mold (the part that goes inside the ear) was already too small when we picked them up on Tuesday. It's a bit of a trial and error system....between the time we get Nate measured for the ear molds and the time they get them made and we get back in to the office, it is 2-3 weeks. Nate is growing so fast right now, that his ears are already bigger and so the molds don't fit snugly. So, we got measured again and will try again in another week or so. The left ear (the very small one) doesn't fit at all as it has to be a nice fit to not give that squealing feedback sound. But, the right one fits a little better, so we're trying to put that one in when we can. The tricky part is getting it to stay in. Since much of his time is spent rolling around on the floor, it makes it tough to get any good time with them in. We basically just put them in when we are holding him or he's in the high chair, so he's only getting about 30-60 minutes each day.

It's clear Nate can hear quite a bit more with the aid in, so we are encouraged!

-Danielle

Help with Feeding, please!

2009-09-04T15:32:00.000-07:00

(here's our sweet little guy playing in his high chair - we hope he'll be eating there soon!)

This post is probably more geared toward those of you who have children with DS or are well versed in feeding therapies...

I NEED HELP!

Since going to the National DS Convention, I feel really lost about how to start solids. I've been instructed by our EI PT that we should wait a little longer until Nate has more upper trunk stability, but then what? I've given Nate tastes of things and have experimented a bit with a spoon, but I just don't see how I'm supposed to do this.

So, you'll probably say that I should go to a therapist for help...here's where I get totally paranoid...at the convention I went to an all day workshop on oral motor therapy with the woman who invented Talk Tools, Sara Rosenfeld-Johnson. She very clearly expressed that many therapists are not treating children with DS appropriately. Either they are doing the same therapy with all OR they just have low expectations (one friend shared that her therapist said that it's "normal for children with DS to not really chew and that was just how it was". What??? Hello, choking hazard!).

So now I don't know who to go to. How do you know that the therapist you are working with is doing the right thing (ie/ not pushing the tongue in, etc)....

On the few occasions that I have actually tried to spoon feed Nate, I put the food on the middle of the tongue and just sort of held the spoon there. All Nate did was look at me funny and stick his tongue as far out as it could go....what am I supposed to do with this???

If you have any ideas for me, I would really appreciate it!

Thanks so much,
Danielle

Sad AND Happy

2009-09-01T20:50:00.001-07:00

Today Nate is 8 months old. A twinge of sadness accompanied the day, but not much more than a twinge. Just that feeling of, "wow, 8 months ago today my life changed dramatically".

A lot has changed since New Year's Day. I'm now outnumbered 3 boys (including Bob, of course) to 1. I am just now starting to get into a good rhythm. I think this was the biggest thing I was struggling with - I just could not find a rhythm with the two boys. Cody is a very predictable child and sleeps 2-3 hrs during the day and 11-12 hours at night - yes, he's a dream child! But, Nate has been really, really tough. Okay, well, mostly tough. He has slept all the way through the night from day 1 (one of the benefits of DS), but daytime has been crazy with no consistent naps until the last couple of weeks. Nate is FINALLY starting to sleep most days and I have figured out that if he doesn't get a nap around 9 or 10am, he WILL NOT sleep the rest of the day. And when this happens (which had been the case for 7.5 of the last 8 months), I feel like I'm going to go crazy by the time Bob gets home. So, I'm doing whatever it takes to get him that morning nap - mostly wearing him in the Bjorn while I go about my business. Movement seems to be what he needs to help him sleep during the day. So, if I get him that morning nap, he'll likely go down for an afternoon nap too!

Something more abstract that has changed in these past 8 months is my perspective. No, I'm not anywhere near to so many of the moms who say they wouldn't trade their child with DS for the world - I still would. But, wow does my heart just melt when Nate smiles that full-faced grin. It's a start.

As far as the sadness I expressed in my last post...it's still there, but it's not as sharp. It's a dull, underlying pain that I just carry around with me. It's that sense that a dream has been lost. The sense that I know in my heart of hearts that all is going to be fine someday, but just wondering when that day will come. But, I learned from a friend in pain a couple of years ago that it is definitely possible to feel deep sadness AND great happiness AT THE SAME TIME. I can feel sad that Nate has DS (and all that comes with that), but happy to have 2 otherwise healthy boys, my own health, a great husband, wonderful family and friends, a warm and loving home....and so much more.

Sad AND Happy at the same time. Not one covered up by the other, but in a careful balance, coexisting. You should try it sometime - it feels deeply real and human.

-Danielle

Sad...again...still

2009-08-18T13:18:00.000-07:00

I've been sad lately...really sad. I'm beginning to wonder if I'm experiencing some post-partum depression, but when I look at the "checklist", I don't meet the criteria for the run of the mill ppd. So, am I just experiencing the expected sadness anyone has with the loss of a dream? Is this normal?

It seems to me that so often, other moms with children with DS are so positive. They don't seem to have the kind of sadness I have. They seem to have found the joy in their child. I am still looking for it...Yes, I know there are a lot of things that could be worse, but this is my reality and it's one I never, ever expected to be living.

Nate still can't hear me, so even talking to him doesn't make a difference - I get no response. The only time I get a response is when I make funny faces or give him a bunch of kisses on his neck. We've finally been fitted for hearing aids, so he'll have those soon. But even the thought of hearing aids is overwhelming to me. Take them out every time he goes to sleep or takes a shower/bath. Change the battery every 10 days. And then there's the concern of if they'll even stay on his tiny ears. Oh, and the audiologist said to expect to visit the ENT often to have Nate's already impossible ear canals cleaned out (nobody has been able to even see in his left ear yet!) - it turns out putting plugs (hearing aids) in small canals that tend to accumulate buildup anyway is not a good idea, but that's the choice - ear infections and cleanings OR very limited hearing.

He is almost 8 months old and his activity is still so limited. I feel like I spend the day moving him from one place to another to try to continue to stimulate him - he just gets bored since he can't sit up or move around on his own. And I can't use the items that were good for Cody - they aren't good for Nate's development. So, no jumpers, walkers - anything that spreads his legs apart or promotes an activity that he is not ready to do on his own. So, that limits the options.

And then there are the napping issues. Nate is a champion sleeper at night, but daytime is a different story altogether. He may take a 30 minute nap in the morning if I'm lucky, but then will go the rest of the day without sleeping. So, he is a complete pill the entire afternoon - fussing and crying and only happy if I hold him. At that point in the day, the last thing I want to do is hold him. My mom keeps encouraging me to figure this one out - I didn't realize how much it was really affecting me. Thanks Mom.

Okay, that's my rant for the day. I'm having a tough time.

To my friends who have called or emailed, I'm sorry I've been distant. To my dear sweet husband whose been incredibly loving - I'll find my way back to happy.

Please be patient with me.

-Danielle

Mondays - My new day "off"

2009-08-12T14:14:00.000-07:00

Since my last post, I have really been thinking about the balance of trying to just appreciate Nate for who he is and making sure I'm taking care of all of his needs. I've had some really sweet time with him this week and am looking for ways to stay in the present.

What I've realized is that therapies, research and making appointments are what really pull me away from this great place with Nate. So, I've decided to try to take a day "off" from DS stuff each week. I think it will be Mondays - those will be my days to just really focus on who Nate is and appreciate his sweet, developing personality. I will not be distracted by therapies, rushing to appointments, reading other blogs, researching, etc. I will simply love on Nate.

One other thing I am going to try is to have one set time to make DS-related phone calls each week. So, I'll just make a list and make all of my appt calls on one day.

I'm excited to try this new approach and hope it will help me to start my week off by remembering that Nathan is a baby, not a syndrome! (I heard that from someone at the conference and thought it was great!)

-Danielle

Welcome to the Club

2009-08-10T21:00:00.000-07:00

So, it's been over a week since we returned from the National Down Syndrome Convention and I am just now feeling ready to write about it. Well, not really, but I feel I need to even if I'm not ready.

First, let me say we are glad we went to the convention and will go again. We learned great information and met some terrific people (loved meeting some fellow bloggers). When we first returned home, I thought I just felt neutral about the experience. Plenty of good and also plenty of reality check.....but, as I've processed more, I've realized it was really harder for me than I expected. It was our official induction into the "Club" we never wanted to be part of.

The hardest parts for me were the speakers and seeing a lot of adults with DS (I still love seeing children with DS) in one place. Yes, those who spoke at the general meetings were impressive and inspiring, but some were also still tough to understand. And if these were the "chosen ones", would this be the top of what we could expect for Nate? And then there was the really broad range of adults with DS we saw throughout our conference experience. Some were well-spoken and took pride in their appearance while others looked like they'd given up and simply shuffled along with their caregiver. So, how much of this is the direct result of their upbringing? I have a hard time believing that all of those people who "shuffled around" were not given the opportunity to succeed - yes, maybe some of them, but not all. Does that mean that we could give Nate every chance to succeed, spending a lot of time, energy and resources on him, but his ceiling is already determined?

When this day started, I had resolved (AGAIN) to focus on today - to look at Nate for the sweet little guy he is and try not to get bogged down in the worries of the future.

But then, during naptime, I had to make phone calls for appointments (hearing aids, 2nd echocardiogram, cancel OT because it seems redundant right now) and do some research (are there any speech therapists in our area who practice the kind of therapy I learned about at the convention?) and those just sucked me right back out into the concerns and "what ifs" I have a hard time escaping.

So, for those of you out there who are praying for us, this is my ongoing prayer request: That we would live in the present and be hopeful for the future.

-Danielle

Wordless Wednesday - Bathtime!

2009-08-05T20:50:00.001-07:00

Grocery Store Comments

2009-07-29T20:50:00.001-07:00

We're in California this week, but I wanted to be sure to post this before I forgot.

We had a very interesting experience yesterday. We stopped at Safeway to purchase baby food, formula (for all of you hard core breast feeders - yes, I tried very hard, but the supply just never came) and toothpaste. I was holding Cody's hand and Bob had Nate shlumped over his shoulder. Since we only had a few items, we went to the self checkout lane. Unfortunately, they were having some issues with the computers and we had to wait for the attendant to complete our transaction. A few minutes later, she came to us and apologized and told us the items were "on us". We were pretty pleased with this, but a moment later she said something that caught us offguard. She said, "Having a sick child is hard enough, you don't need to deal with this too.". If we'd purchased medicine, this may have made sense. So, as we walked out of the store we realized she must have noticed Nate on Bob's shoulder and thought his DS was "hard enough".

This was the first of many grocery store encounters we are sure to have. At least this one saved us 20 bucks!

-Danielle

Convention - Mixed Emotions

2009-07-23T09:45:00.000-07:00

So, we're heading down to CA tomorrow to visit friends for a week before the National Down Syndrome Convention. We'll spend the first part of the week in the SF Bay Area and the 2nd part in the Sacramento area. The convention is F/Sa/Su next weekend at the Sacramento Convention Center.

I have mixed feelings about going to the convention. It feels like this is our official induction into this club we never expected we'd belong to. We have been able to control how much information and exposure we've had to DS in the past 7 months, but at the conference it will be inescapable. Seeing hundreds of people with DS in one place sounds really overwhelming to me.

On the other hand, I am really looking forward to connecting with some of the other bloggers I've been privileged to be on this journey with and meeting others who deeply understand the emotions we are going through. I'm looking forward to having experts at our fingertips. People who know a lot about DS, not just a little bit about a bunch of different kinds of physical/emotional/mental challenges. No offense to the therapists and special ed teachers we've been working with, but they do not necessarily know the latest research as it pertains specifically to DS. I'm also looking forward to meeting people with DS who will be able to broaden my picture of what it looks like to live with DS as an adult.

I'm hoping to come back with a deeper network, more information and to feel empowered to better care for Nate.

I'm not sure if I'll be able to blog while we're gone, but will be sure to when we get back!

NOTE - FOR THOSE OF YOU WHO HAVE CHILDREN WITH DS, BUT ARE NOT GOING TO THE CONVENTION...IF YOU HAVE SPECIFIC QUESTIONS YOU'D LIKE ME TO ASK FOR YOU, PLEASE POST HERE!

Take care,
Danielle

Tongue Tricks

2009-07-15T11:12:00.001-07:00

This is a video I took last week, but have had a hard time uploading it!

Nate discovered his tongue can do some pretty fun things!

Enjoy,
Danielle

Hearing Test # bazillion

2009-07-09T07:36:00.000-07:00

Yesterday was a day of mixed feelings. Bob and I had been invited by a work associate to go to a Mariners game and enjoy it from a suite right behind home plate. We had planned on going, but when the only hearing appt available for Nate was yesterday, we thought we better make him a priority (even though we could really use the connection time). When I shared this with my mom and my dear friend, Ginger, they both jumped at the chance to help out. My mom took Nate to his hearing test and Ginger watched after Cody.

So, Bob and I had a great time while Mom went to Doernbecker Children's Hospital. Nate could not have any formula after 8:30am and the appt was at 2:30, so Mom had her work cut out for her. He was not happy about being deprived (even though I got him up early to make sure he was able to eat at 5 and 8). When they arrived at the hospital, they put numbing cream on Nate's hands and legs. After that took effect, they tried desperately to get an IV in him. Mom had to hold down his arms while the doctor and nurse worked to get in into his legs. They almost had to put it in his HEAD, but finally were able to get it in one foot. So, they sedated him, my mom held his hands and rubbed his head and he went off to dreamland.

The test was 2 hours long and DID NOT GIVE US A DEFINITIVE ANSWER on Nate's hearing. UGH, UGH, UGH! Are you kidding me? This is so ridiculous! This is so frustrating! We think the next hearing test should be free (yesterday's will cost about $2500 because of the sedation). We do know pretty certainly that he does have at least moderate hearing loss in both ears, but one may be worse than that. They just can't get a good read on his left ear because the canal is so small. They even used preemie devices to test, but that didn't even help. So, now we need to go to a pediatric ENT (ear, nose and throat) Doctor, get a plan devised with her and likely have another sedated test (cha-ching). We will then get fitted for hearing aids (cha-ching, cha-ching) and will begin speech therapy (cha-ching)....

I'm noting the cost of all of this because it is overwhelming and frustrating. God is being amazing in providing for us right now, but what if that were not the case. How do people do this??? Hearing aids generally cost $2000-$3000 and have to be replaced and changed. Speech therapy is definitely a must and is not covered by insurance and costs about $125/$150 for each weekly session. Our system is just not set up to help families with special needs.

I'm beginning to understand why so many other parents of children with DS have used the term advocate when describing their role. I think I'm going to have to learn this role very quickly.

-Danielle

New Moves and Sounds

2009-07-06T15:05:00.000-07:00

Nate turned 6 months last week and is doing some new tricks I'd love to share. He's been rolling from his back to stomach for quite a while now, but is now rolling from stomach to back too! He is also doing really well with tummy time, pushing up on his arms and holding his head up for extended periods. I've been working with him to grab his feet lately - I'll take his hands and help him grab onto his feet, then I hold them in place and rock him side to side. He absolutely loves this! Today, he has now discovered how to hold onto his own feet!!! Yeah!

Nate also started making the "b" sound over the weekend. Ba, ba, ba. This is his first consonant sound!

It's fun to see him progressing and helps affirm our work with him.

Nate's sedated hearing test is scheduled for this Wednesday, so we should finally have a prognosis and plan for his hearing. I'll be sure to update the blog as soon as we know more.

-Danielle

Down Syndrome Clinic Recap

2009-06-28T09:26:00.000-07:00

Our appointment at the Down Syndrome Clinic went well. We are awaiting a written report and will determine if it was "worth it" when we receive that. However, we were glad to have gone and to talk with people who are so knowledgeable about DS.

Here's a summary:

Audiology - We started with yet another hearing test. I haven't really written about it, but we are still unresolved with Nate's hearing. We've now had 5 hearing tests for him (3 of them being 4 hrs long) and don't know what his hearing truly is. We've had anywhere from mild hearing loss in both ears to normal range in both ears. We've suspected that there is some loss as Nate really only responds to loud sounds. The test on Friday confirmed that there is some loss and that we need to do a sedated test. So, we'll go back soon and have another long test while Nate is put under. From there we will know if he needs tubes (very likely) and hearing aids (also likely).

Speech Therapy - We met with an ST who mostly asked us questions about feeding and took a lot of notes. We'll be starting solids soon, so we did ask her some questions about that - we weren't all that impressed with this part of our appt, but her written report may prove us wrong. We'll see. She did confirm that we need to begin Speech Therapy as soon as possible (they work on Oral Motor skills, developing the muscles in the face and tongue and helping with tongue control). Our insurance does not cover ST until Nate is 2.5! So, we need to look into community resources to see what other options there are for him. We also need to push more with our Early Intervention team to make sure we are getting as much as we can there.

Neurology - The head of the Down Syndrome Clinic, Joseph Pinter, met with us next. He has worked with DS for 13 years. He started out as a Pediatrician, went back to school to become a neurologist, did research on the brain of mice who had DS and has done a lot of brain imaging of children with DS. He was very passionate and wanted to get and give as much information as possible during our hour together.

We were supposed to end with Occupational Therapy (to assess gross and fine motor skills), but Nate was passed out at this point as it had been 4 hours of poking and prodding. We feel the most confident about his physical progress, so missing this part (and not having to pay for it) was fine with us!

Overall, the team seemed to think Nate was right about where he should be. He is moving and interacting as they would hope. Our main thing is to get the hearing figured out and get what he needs to hear as that is so critical in speech development. We will go back to the clinic when Nate is a year and then yearly after that. The idea of the clinic is to be a resource. They can evaluate Nate and give us written reports to give to our pediatrician and early intervention team. It feels good to have a team of experts to access.

So, our next few months:
*Sedated hearing test
*Sedated procedure to put in ear tubes
*Get hearing aids
*Thyroid test (people with DS tend to have underactive thyroids, so we'll have this tested yearly)
*Oral Motor therapy session to help us make sure we are approaching solids properly
*2nd Echocardiogram to make sure the valve in his heart has closed. If it hasn't, he will need to have a procedure done to close that

I really feel for people who raise children with special needs without the help of family or friends. My mom has been so helpful in watching Cody whenever we need to take Nate to appointments. Dragging Cody along to all of these would make things a lot more stressful. We've also had so many friends and family members help in many other ways.

If you know someone who has a child with special needs and have a little extra time or energy, I encourage you to reach out and ask how you can help. Or, better yet, just tell them how you are going to help (ie/ "I'd like to watch your other child during your next appt, when is it?" or "When is your next big appt day? I'll bring you a dinner that day." or "What night can I come over this week so you can have a date with your husband?") No matter how old the child with special needs, there will always be extra work and juggling with the other kids. Working together can really ease the burden!

Thanks for reading our blog! We'll be sure to keep you updated as we learn more about Nate's hearing.

-Danielle

Anxious

2009-06-25T17:33:00.000-07:00

We have a big day tomorrow. We are heading to the Down Syndrome Clinic at OHSU (part of the Child Development and Rehabilitation Center). We will meet with a team of Doctors (Neurologist, PT, OT, Psychologist) for a 4 hr appt. They will evaluate Nate, help us set expectations, set goals, give resources and suggestions. I'm anxious because we've been waiting for this appt for 2 months (he had to be 6 months to go). I have built it up in my mind to something it likely can't live up to (especially with the hefty price tag we'll be paying!).

So, I'll report back tomorrow or Saturday.

For those of you with children with DS, if you have any burning questions you want me to ask this team, please just post a comment by 10am Friday, 6/26 and I'll be sure to ask for you!

-Danielle

Not Your Average Daddy

2009-06-21T19:53:00.000-07:00

Happy Father's Day!

I thought this would be a perfect time to pause and really think about how amazing Bob is as a father to Cody and Nathan. Really, he is incredible. Before we married, I knew he would be great with older kids (he was a Young Life volunteer and worked with some tough kids in SF for 6 years), but I never could have imagined how great he would be with our young little guys.

No matter what kind of day he has, he digs down deep and finds the energy to give our boys whatever he can - and that's a lot more than a lot of dads out there. He dives right into Cody's world and does whatever he wants to do. I'm amazed that even after a really hard day, he makes it a priority to play with Cody with great abandon, help put both boys to bed, help around the house and then, usually, put me to bed as well.

I often hear about the frustrations other women have with their husbands, but often just keep quiet. I don't want brag that I married a man who actively parcipates in the lives of his wife and children.

But today is not the day to be quiet. I want to yell to the world that Bob is NOT YOUR AVERAGE DADDY. He's an amazing father and husband. I am so blessed.

-Danielle

Blog Therapy

2009-06-19T20:51:00.000-07:00

Blogging is, to say the least, cathartic.

When I first started blogging, I really thought it was for the benefit of others...to keep our friends and family in the loop. But after that first entry, I knew this was an entirely different experience. Making it available and public made my writing so much more therapeutic than a journal. Somehow, knowing others were reading my entries helped ease my burden and my mind.

Initially, I was inspired to blog after reading the blog of a friend of a friend. I learned of "Trisacharm" when Nate was 2 weeks old and I devoured nearly every word as fast as I could. To that point, I had felt so confused and alone. I had so much support around me, but needed to connect with someone who was going through the same thing I was. Reading Jen's honest description of her experience empowered me. I thought, "If she can do it, I can do it".

Since reading Jen's blog, I have found many others! There is such an amazing community of people around the world who are blogging about raising children with DS.

So, my goal is to be raw and honest. To not censor my thoughts, but just allow them to flow freely. This is my therapy. I pray my "blog therapy" can help even one other person the way Jen helped me in those desperate first weeks.

Sometimes I get lost in this blogging world. I think that's okay though....getting lost often helps me find my way...

-Danielle

(And if you were wondering, yes, I love it when you leave comments. It gives some validation to my thoughts and encourages me to continue writing. So, thank you.)

Tunnel of Progress

2009-06-18T21:28:00.000-07:00

I guess I'll start by saying, we're in a "happy tunnel of progress". I call it a tunnel because as long as I stay focused on Nate's progress as it relates to himself and am very careful to not compare him to others, we're good! We just need to keep that tunnel vision and recognize Nate is making progress compared only to where HE was yesterday.

I found a great new toy at Tuesday Morning yesterday. It's called Will C More and it's made by Discovery Health. It seems to be just the motivation Nate needs to really work on some good tummy and side-lying time. He's eager to lift his head to see the screen and this toy will transition with him through many stages. I love it!

Nate is doing well lifting his head for longer periods and is consistently rolling from his back to his stomach. This week he has begun to figure out how to get his hands our from under him after he's rolled to his stomach, so that's great. He has also just started bearing some weight on his arms. He's definitely getting stronger!

Here are a few pics...

I just have to keep taking things one day at a time - that's all we really know we have anyway, right!?

-Danielle

Gentle Approach

2009-06-07T15:52:00.000-07:00

Well, it looks like I'm getting what I hoped for. More and more people are approaching me and being clear that they know Nate has DS. Today at church, I had 2 people approach me. The first told me she is a cytogeneticist. She wanted to make sure I knew she'd be happy to talk with me if I had any questions. The second was a woman who has a 20 year old brother with DS. She approached very gently (it's clear she understands the mixed emotions I have). She introduced herself and her husband and asked my name. She then commented on how she had been watching me with Nate during the service and thought he was so cute. This is the point when I usually get a little uncomfortable since I know he is not the conventional "cute" and that it is sometimes the word people use because they don't know what else to use. But this time was different. Since she had approached me so intentionally, I knew there must be something more. I paused for a moment and she jumped in to share about her brother. I could see in her eyes that she adores him and really wanted me to know how much he means to her. She had seen us in church a couple of weeks ago and told her mom about us, so her mom has also extended an invitation to talk.

I so appreciate these exchanges. But, I've found, I'm still not all that ready to talk with those who have experience with older children or adult with DS. I can handle infants and toddlers - I don't have set expectations for those little ones under 3 or 4. But once they get into school and beyond, that is where I feel challenged. There is just such a wide range of ability.

So, for right now, I'm just going to continue enjoying my sweet little 5 month old. He is honestly the sweetest little guy (well, except for those few hours in the afternoon when he just won't sleep). I'm working hard to not have specific expectations for him, but to allow him to develop in his time with our help.

And when I'm ready, I will be thankful for all of the people who have stepped forward to share their thoughts, advice and experiences.

-Danielle

More Smiles

2009-05-28T16:53:00.000-07:00

For quite a while Nate's smiles have been sporadic at best. Now they are finally beginning to come pretty regularly and we are finding we don't have to make complete fools of ourselves to get them. He gives us full face grins which are so great! We're finding he really loves dancing - smiles come quickly when we turn up the tunes and dance around the kitchen with him.

Many have asked how Nate is doing. It's such a hard question to answer. I do have checklists and lists that give ranges of when to expect certain milestones, but how do I really evaluate how he's doing? Well, this is what I know....he is responding very well to his exercises. His upper body strength is definitely improving and he's tolerating tummy time for longer periods each day. I counted to 34 seconds today as he held his head up in tummy time. He is also rolling from his back to stomach very easily. He continues to sleep well at night and not so well during the day. We still don't trust his hearing tests and will go back again for another test next month. He just doesn't respond to us like we would expect - we think he likely has hearing loss for higher tones - we notice he responds much better to Bob's voice than mine.

So, how is he doing? I think pretty well! He's making progress and that feels good!

-Danielle

Yes, People Notice

2009-05-27T07:22:00.000-07:00

I went for an early morning walk with Nate this morning. It was a beautiful, crisp morning and Nate was enjoying looking at the trees while he snuggled close to me in the bjorn.

About halfway through our 45 minute walk, we met up with Harrison. Harrison is probably in his mid to late 80's and lives with his daughter and son-in-law. I hadn't seen him since the fall when I was doing my early morning walks to ease the back pain I experienced with pregnancy. Harrison likes to sit in his chair at the front of his driveway, read his newspaper, drink his coffee and talk with anyone who slows down enough as they pass him. I've enjoyed many conversations with him and always hope he'll be sitting there as I turn the corner to his street. Honestly, I was starting to wonder if he was still with us, so I was relieved to see him this morning.

I stopped to talk with him and he quickly alerted me that he did not have his hearing aids in this morning. Our conversation went something like this (with a lot of "huh", "what's that", and "could you repeat that dear" in between):

"Good Morning"

"Good Morning. Let's see your baby."

I pull back the hood on the sweatshirt Nate has on.
"Is he an oriental baby?"

"No, he has Down Syndrome."

"Oh, like the Governor of Alaska's baby?"

"Yes."

"Did you know ahead of time?"

"No."

"Would you have done anything about it if you did?"

"No."

We tried to talk a little more, but he was starting to get frustrated that he couldn't hear me well, so we agreed we'd talk again when he has his hearing aids.

So, this was the first time someone actually came right out and asked me about Nate. Sure, it wasn't the most PC way, but I just chalk that up to the fact that he grew up in a time when people like Nate would be shipped off to institutions.

Anyway, I can honestly say I had kind of convinced myself that others don't notice Nate's almond-shaped eyes (and flatter face, protruding tongue, crinkled ears, low muscle tone, etc). So, this morning was a good reminder. A reminder to be aware of the awkwardness that so many feel as they meet Nate. Most don't have the guts to just put it out there (I know I never did), but are certainly thinking that there must be something a little different about Nate.

I still haven't quite figured out if I just throw it out there anytime I introduce Nate, but I certainly want to be sensitive to sharing it if I see someone wants to ask, but is not sure how.

Surprisingly, my conversation with Harrison did not make me sad this morning. It actually felt good to have him say something so I didn't have to. I think I wish more people would just say something (with a bit more tact than Harrison, of course) so it didn't feel like the elephant in the room.

-Danielle

The Silent Type

2009-05-15T14:16:00.001-07:00

I never have been attracted to the silent type. Now I'm truly being tested as I live with one.

I was at Target with Nate last night getting stuff for Cody's potty training day today (he's napping now, so I'm getting a break from the festivities). Anyway, Nate was in his carseat perched up on top of the cart and we were having a fine time shopping. I was almost done and feeling good. Then, I walked past another woman who had her infant perched as Nate was. She was looking in at him and they were carrying on the sweetest conversation. It seemed like he was just exclaiming everything - such volume and joy in his little voice.

I walked out of Target a bit sad and the sadness is carrying through the day today. The sweet sounds I hear from Nate are few and far between. I'd say his cries and complaints far outnumber the sweet sounds. So then I start to wonder - does this mean anything. I've often heard that children with DS are quiet, but how quiet? Is Nate even quieter than his counterparts?

Communication continues to be my biggest concern for Nate's future. Will he be able to express himself clearly enough for others to understand? Does his lack of communication now have a direct correlation to the success of his communication later?

I think only time will tell. God, grant me patience...please.

-Danielle

"Undersnake"

2009-05-12T13:15:00.000-07:00

I just wanted to share a quick laugh from my time at the park yesterday. I was there with the boys and Cody asked to go on the swings. After settling him into the "baby" swing, he quickly requested that I give him an underdog (you know, where you push the swing as high as you can and run forward under the swing).

"Underdog, Mommy!"

I gave him an underdog.

"Undersnake, Mommy!"....he went on to ask for underelephants, undertigers, underlions.

It was one of those sweet moments I hope to remember for a long time.

-Danielle

Family Photos

2009-05-05T14:30:00.000-07:00

We went to get family photos on Sunday and it turned out differently than I expected.

In the past, each time I'd seen pictures of us with Nate, I'd had a hard time. I don't notice his DS features as much anymore unless I see him in a picture. So, I was not at all looking forward to family pics.

But after we saw the pictures, both Bob and I felt much better. We saw our sweet little guy in a new way. We looked at those pictures and said, "this is OUR family".

It's still not the family picture we imagined, but we are settling into this new picture more and more.

-Danielle

Smiles for Mommy

2009-05-01T14:58:00.000-07:00

Right after expressing my sadness about Nate's lack of Mommy smiles, our early intervention specialist witnessed Nate's first real smiles for me today. Wahoo!!! I haven't been able to capture one on camera yet, but as soon as I do I'll post it!

Nate is 4 Months old today!

-Danielle

Tough Thoughts

2009-04-24T13:28:00.000-07:00

Nate is now almost 4 months old and I still struggle quite a bit from day to day. Some days I adore him and other days I just want to hit the rewind button and try again for a typical child. Today is the latter. I have just never faced a "trial" that I didn't see the end to...right now, having Nate seems like a huge burden to me. He still isn't smiling (very, very infrequently, but never at me) and that is really taking its toll on me. It's the first real test of how patient I can be with these delays he will continue to experience. I just feel like I will be able to connect with him more once he starts smiling...

Last night, Bob and I were watching Gray's Anatomy. A father was sitting by his 6 year old daughter's bedside and basically waiting for her to die. I said, "That would be so hard to lose a child." and Bob asked very insightfully, "Which one?". Ouch. That hurt. It hurt because it is truly the kind of tough thought that runs through my head each day. I have to admit that it was easy to recognize that it would be devastating to lose Cody, but part of me felt it would be a relief to lose Nate. What kind of parent thinks that way??? I just can't help it....it's there and I'm admitting it. So many in this community of parents who have children with Down Syndrome say that our children with DS will bring such joy into our lives, but they haven't said when that will happen. I'm waiting and hopeful.

-Danielle

"Naked" Time

2009-04-22T14:44:00.000-07:00

So I read recently that it is good for babies to have as much skin exposed as possible. We've had some warm weather recently, so I thought I'd give Nate a chance to maximize his sensory input with some naked time. Unfortunately, he still has the grasp reflex going on and hasn't learned how to let go. You can see this in one of the pics where he is grimmacing as he pinches himself one more time!

I am doing a lot better with Nate's physical therapy - learning that it's stuff I can do while I'm doing other things and not feeling as overwhelmed. I try to move him through many positions throughout the day (back, tummy, side-lying, supported sitting) and am working hard to encourage him to interact with toys and to develop both sides evenly (he tends to like to look, kick and move to the left). I've been a lot more intentional with his therapy lately and can see the difference. In this picture you can see him reaching up and interacting with 2 different toys - big deal!
The little guy still isn't smiling much, but I can really see the smiles in his eyes and hear it in his coos. Fortunately, we get a lot of smiles and laughter out of Cody!

-Danielle

Early Intervention

2009-04-14T14:49:00.000-07:00

Therapy with a 3 1/2 month old? Yes, we're doing it and it's very important. Right now it feels TOO important and I feel terribly behind in the work Nate and I should be doing together. At this point the county sends over a physical therapist 2x/mo for an hour and a special ed teacher 2x/mo for an hour. The PT works with us on ways to help strengthen Nate's low-tone body and the special ed teacher works with us on ways to stimulate his brain and ways to integrate Cody into the process. The time with these women is very valuable. I'm not necessarily learning anything that earth-shattering, but I'm finding the consistency of their presence helps keep me accountable to spending time working with Nate (I don't want to be the one who didn't do the assignment!) But, right now I just feel overwhelmed. I feel like this is the easy stuff and I can't even find time to get it done. Yes, I could do these things with Nate each day, but then who does the laundry and dishes??

Okay, one day at a time, one day at a time. Breathe.....

Worn Out

2009-04-09T13:46:00.000-07:00

I haven't written in a while and don't have the time to right now, but I wanted to get this video up. Nate had finished his physical therapy for the day and was playing on his mat and just passed out. It was so loud but it didn't affect him. Oh, be sure to catch Cody talking about "sitting on the potty" - he's been practicing lately.
I'll write more again soon!
Danielle

The Lingo

2009-03-31T15:04:00.000-07:00

There is a steep learning curve when you are suddenly thrust into being a parent of a child with special needs. One aspect of this has been learning the lingo that is accepted in this community.

Today is "Spread the Word to End the Word" Day. The word: "Retard"
http://www.specialolympics.org/03-31-09_Spread_the_Word.aspx

So, I'm spreading the word.

Please, don't EVER use the R word - it's old and it's hurtful. Instead, use mentally/intellectually/emotionally disabled or challenged.

A couple of other things I've learned. Instead of saying Nate is a Downs child or Down Syndrome child, a better way is to say he is a child with Down Syndrome. Down Syndrome does not define who he is (although I may feel like it does at this point), but is a part of his make-up. (A very old and ugly term used for people with Down Syndrome is Mongoloid - yuck!!!)

And when describing Cody, the accepted term is "typical" versus "normal".

So, I beg you....help your families and friends to begin to use terminology that is more sensitive so that when Nate is older, he won't have to hear those words.

Thanks!
Danielle

Hearing Test #4

2009-03-30T15:23:00.000-07:00

As many of you know, we've had a hard time getting a read on what is really going on with Nathan's hearing. He didn't pass the test in the hospital, so 2 weeks later we went to an audiologist for a follow-up. In that test, the left ear passed and the right didn't. We went back again at 7 weeks and it appeared neither ear was passing and he may have permanent hearing loss in both ears and need a hearing aid. So, for the past 6 weeks, we've been expecting to have to deal with the hearing aid on top of the other challenges Nate will face.

BUT that's not the case.

Today, Bob took Nate to his 4th hearing appointment and both ears passed in the normal range! Praise God!!!

The reason this has been so tough is he has VERY small ear canals (which is common in children with DS). His hearing may actually be even better than they tested today. He's been congested for quite a while so some fluid and gunk is stuck in the middle ear. So, we'll go to an ENT doctor and get his ears cleaned out (this will likely be something we'll have to do often since his ear canals are so small - his right is actually about half the size of the left).

We will need to continue having his ears checked each year, so prayers for his hearing are appreciated. Clear hearing is so important in speech development, so we're hoping his hearing will stay as they are or even get better.

-Danielle

Better Today

2009-03-27T22:45:00.000-07:00

It's Friday night and I'm exhausted. As I sit here pumping one last time for the day, I reflect on how much better I feel today than I did at the beginning of the week. Today I was able to appreciate the sweetness and beauty of our Nathan. I took many pictures and had some great snuggle time with him. He is such a sweet little guy and I am appreciating that today.

I'm going to try really hard to live in the now as much as possible. Yes, it's necessary for me to look ahead some to make sure we're getting the care Nate needs in the time he needs it, but I do have the tendency to look much farther ahead than necessary. Here are some pictures I've taken in the last couple of days. Nate is starting to smile more, has found his hands, is starting to suck his thumb and cooing a lot at his little toys in his play gym.l It's hard to believe he's already 3 months old.

-Danielle

Overwhelmed

2009-03-23T21:17:00.000-07:00

I'm feeling very sad and overwhelmed tonight. I just have had a sinking feeling all day that I am missing something. I feel like I'm terribly behind in Nate's therapies and care. I'm doing the things the early intervention people have told me to do, but I just know there is more. I've been reading about these programs (neurodevelpment programs) out there that do an intense assessment and set up an aggressive program for us to follow to set Nate up for the greatest success. Of course, these are not covered by insurance and are very expensive. So, I need to spend every moment searching online and reading books to try to make sure I'm doing everything possible.

I barely have energy for Cody right now, so I have that guilt piling up on top of the "not-doing-enough-for-Nate" guilt.

I'm sad....very sad.

-Danielle

Brothers

2009-03-23T13:40:00.000-07:00

When we found out we were having a 2nd boy, I must admit I was a bit disappointed at first. We were pretty sure 2 kids was going to be our max, so my dream of having a girl was quickly slipping away. But, after just a short period of adjusting to the idea, I was very happy for Cody to be gaining a brother. Both Bob and I basically grew up as only children (I have half-siblings who are much younger than I) and felt strongly we wanted Cody to have a sibling - it seemed to us that giving him a brother would be a huge gift.

But now our picture is so much different than we imagined. The relationship Cody and Nathan will have is not what I had expected. Cody will likely feel a big responsibility for his brother and could eventually even need to care for him. They will not relate to each other in the ways typical brothers do. But, I also know each of their lives will be enriched greatly by the other. I hope Cody will learn a depth of compassion from being the big brother to Nathan. And I hope Nathan will learn to acheive more than expected because of Cody's encouragement.

No, this is not the picture I had in my mind, but I'm hopeful we'll see the beauty in it as it develops.

-Danielle

Good News

2009-03-19T17:44:00.001-07:00

We got some good news today! We learned that the cause of Nathan's DS is random and not hereditary (about 5% of cases are hereditary, or caused by translocation). So, that means we are not carriers nor is Cody. Very good news! So, if having another child is in our future, we have about a 1 in 100 chance of having another child with DS versus a 1 in 2 chance - big difference.

Strength

2009-03-18T21:44:00.000-07:00

It was not long ago that I would look at parents with special needs children and think, "I'm so glad that's not me". And during my pregnancies with both boys, I often expressed fear of having a child with Down Syndrome by saying, "I just don't think I could handle that. I honestly don't know what I'd do".

Well here I am....I've been one of those parents now for almost 3 months and now I know I can and will continue to handle this with as much grace and strength as I can find. Now I know the answer of how I would handle being a parent of a child with Down Syndrome - I lean heavily on my faith, family and friends. In those first couple of weeks, I had absolutely no strength of my own. There were many times I cried so hard that I'd fall into Bob's arms and could barely stand on my own. I spent much of those first weeks on my knees crying to God, asking him "why" and begging for strength and peace. I relied on phone messages, emails and cards from friends and family. The first 2 weeks were awful....really awful.

But they were also the best 2 weeks of my life. I felt a communion with God I'd never felt before - a closeness I never imagined. Each morning, as I dragged myself out of bed, stumbled down the stairs and fell to my knees beside our red couch, God led me to places in the Bible that gave me strength and courage. Scripture like:
"So do not fear, for I am with you. Do not be dismayed, for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand." Isa 41:10
"God is our refuge and strength, an ever-present help in trouble." Psa 46:1
"With God, all things are possible." Matthew 19:26
and so many more....

After the first 2 weeks, the shock began to wear off and I began to sink into our new life. Each day I have a time of sadness - some are passing thoughts, some are hours of grieving, but I know now that I have the strength and the relationships to get me through.

I am so aware now of how blessed I am to have such amazing people in my life and am trying desperately to not take that for granted.

-Danielle

Waiting for a smile

2009-03-16T21:38:00.000-07:00

Nate is 10 weeks old and I'm still waiting for a smile. He has smiled at Bob and a couple of others, but not me. I sat and smiled at him for a long time today...and nothing. I wonder if he sees through me, if he sees the concern in my eyes, if he knows I'm forcing myself to smile at him. With Cody, it was so different - he was a really tough newborn, but I still enjoyed just staring at him and smiling. Nate is the easiest newborn I could imagine, but the challenges of our future together don't allow the smiles to come as naturally.

I just wish he knew that if he'd just give me one smile, he'd see a REAL smile from me.

-Danielle

Feeling Raw

2009-03-13T15:23:00.000-07:00

I woke up feeling pretty emotionally raw today. After a long day yesterday, both Bob and I were wearing our hearts on our sleeves last night and had a long talk about how we're REALLY doing. On a day to day basis, I feel like life is pretty normal. We have a toddler who is a ton of fun and discovering so much each day and a newborn who I usually feel guilty about because he's so easy.

But there is so much more.

There are so many questions....
*Why couldn't we have just had two typical sons?
*Why don't I see any other children with Down Syndrome when we're out and about?
*Will Nate be able to hear?
*How in the world are we going to pay for all of these medical bills?
*When Nate is an adult, will he speak well or will he speak like a 2 year old?
*Why do 90% of people who find out they are having a child with DS end up terminating the pregnancy? And of the 10% who have the child, 80% give them up for adoption.
*Will the stimulus plan affect early intervention? Will there be more or fewer services for us in the near future.
*Will Nate live with us for the rest of our lives?
*Will all of our vacation time and money be spent going to Down Syndrome conferences?

These are only a few of the questions that run through my mind each day.

Nate is waking up from his nap now - sometimes I want to just ignore him and pretend he never arrived, while other times I want to run to his rescue.

today I'm running....

-Danielle

Name Change

2009-03-11T21:23:00.000-07:00

Most of you know this by now, but we wanted to put this in the blog as a reminder of the reasoning and process we went through regarding our little guy's name.

After about a month of his life, we changed Braylon's name to Nathan. This was a tough decision for us, but there are 2 very good reasons. First, if he has challenges with speech, he may not be able to pronounce Braylon clearly and since many have not heard the name, they may end up coming up with something else. You can imagine the frustration this could cause. The second, and just as important, reason is that we feel we need a name with meaning. Nathan means, "Gift from God". We want our son to know that is how we view him and we also need to be reminded in the challenging times ahead that he is our Gift.

Update

2009-03-10T21:36:00.000-07:00

So, here's the update:

Nate - He continues to be very easy. He sleeps a ton and is a good eater. He cries only when he's really upset and is sleeping through the night. We still don't know the prognosis of his hearing, but I feel the last test that showed he has mild hearing loss in both ears is probably pretty accurate. He doesn't respond to sound much unless it's very loud. We have an appt on the 18th with a pediatric ENT doctor and then another Audiology appt on the 30th - then we will likely need to get him fitted for a hearing aid and get him going on that ASAP. We have been having weekly visits at the house with early intervention. We're learning different ways to encourage physical and cognitive development - the meetings are helpful, but feel a bit overwhelming sometimes too.

Cody - He's doing much better. We were really having a hard time over the last 4 months of him hitting other kids without any reason. We actually had the children's pastor from our church come over to the house last week to talk about his behavior and ideas of how to deal with it...somehow though, it seems to have gotten better in the last week, so I'm very thankful for that. Cody seems to be doing better with Nate and is becoming a great little helper.

Bob - Work is going well and he continues to give everything he has to be a great dad and husband. He is beginning to develop a lot of great friendships and getting involved at church. He is going to play the drums at church for the first time this weekend and he and another guy from church are organizing a men's softball team. I'm really excited for him to have some outlets he enjoys!

Me - I'm adjusting to being a mom of 2. I'm getting into a better rhythm and enjoying the boys more. I am doing 2 Beth Moore Studies (Patriarchs and Esther) and am loving those (even though I don't usually make it through all of the homework). I went back to teaching Baby Boot Camp last week and it went well. I'm only scheduled to teach 1/wk, but taught 3x last week due to others being sick. A huge prayer answered is that a friend of mine from childhood who lives here in West Linn asked me if I would teach an early morning boot camp here if she got some people together. She just asked me last night and I told her I would need at least 8 ppl to get started - she emailed me tonight and she already has 6 interested. I'm really excited about this as I love teaching, but just couldn't figure out how to find the time/energy to market and get a crew together. We'll likely start at the end of April/early May.

Overall, we're doing pretty well. Each day is filled with mixed emotions. Most of the time I don't think much about Nate having Down Syndrome, but when I do it hits pretty hard. I still get sad and wonder why this happened to us. It's just hard to believe this journey is for life. We went to a dinner for parents with children with Down Syndrome on Friday night and it was both good and bad. There were about 40 people there. It was great to meet more people and recognize that we're not alone, but also difficult. We talked with one man whose son is 11 and his vocabulary is about the same as Cody's - that's really tough to swallow. We are pretty certain Nate will be fine physically, but the cognitive/communication piece is what we're most concerned about - we just won't know for a long time.

All we can do is trust that God knows our hearts and knows what's best for us.

-Danielle