2011 Family Recap

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

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....

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

 (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

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

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

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

(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

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

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!

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

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!