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!