Sunday, May 15, 2011

Development Update: Feeding


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!

Next update:  Communication

Wednesday, May 11, 2011

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

Tuesday, May 3, 2011

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.


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'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,