Outpatient Update

The boys had an outpatient therapy appointment today!

Here are some updates:

First and foremost they exercised their lungs. :-)

Neck/Core/etc: I’ll start here by showing you the new gadget.  http://www.medline.com/jump/product/x/Z05-PF30708

Now that you have that visual…I will be able to use this awesome tool to help with tummy time, side play, “sitting”, and various other positions! Something as simple as playing on their side is difficult when they can’t hold themselves in position, or in Nolan’s case, he arches and twists until he gets on his back with his head to the right – AKA his “comfort zone”. This will help us position them firmly, but safely. PLUS! I’ll be able to do it hands free! I’m very excited about this. Instead of putting all of my effort in to holding them in a position, I can let this do the work, and I can work on visual and auditory stimulation, or even sensory exposure! Imagine them in the sitting position…playing and rubbing in shaving cream! Or on their side, but with me helping them get their hands on toys, and pushing buttons to create noise. I see this as a great way to improve the “fun” part of their play time.


Necks: I believe she could also see a slight improvement in the boy’s willingness to look left. But there is still a LOT of room for improvement here. Especially with Nolan. Some subtle clues you may have noticed in photos, and others you may have not: his right ear sticks nearly straight out from always getting folded over when he rolls his head right. His head is misshaping a bit, especially in the back right. And his bald spot (normal enough) is one-sided. All clues to his strong right side preference. The above positioner will also help me get and KEEP him on his left side for a while, as well as get him in to tummy time and a sitting position for longer spurts…all helping get him off the back of his head.


Sensory input: We’re continuing with the brushing and joint compressions. The boys don’t like it. They are particularly defensive about their hands being brushed. I’ve been doing it on bare arms and legs, but I might try to do it through clothing ½ the time for now, so they can feel it both ways, and hopefully slowly become more receptive to it. (Reminder – the very soft brush does NOT actually hurt…they are just tactile over-sensitive.)


Vestibular/ Spacial Orientation: My favorite new homework is…indoor swinging! We are going to use a sheet for now, and perhaps a more stretchy fabric if I find myself at Joanne’s Fabrics soon. But the idea is to get them more aware of a moving environment. They are far more stationary than a typically developing baby. As such, their vestibular awareness is lagging behind. (Vestibular is the leading system that contributes to movement and a sense of balance). I am also trying to keep them with me more often. Walking around the house, rocking, bouncing are also good ways to help in this area.  I want to do more baby wearing. But the times that has seemed convenient have been few and far between. Here’s a link I found useful in summing up a lot of what we talked about today.  http://www.developmental-delay.com/page.cfm/287 Honestly, Vestibular was a new word to me. Or at least one I had quickly forgotten from early biology/health classes.


While it feels like our list of goals and needs is ever-growing, it feels good to have a list of tools that is ever-growing as well.  And I am particularly thankful that I am seeing a way to make more of this “fun” for them too!

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Ironic Firsts

You know that Alanis Morissette song? Ironic? Rain on your wedding day, free ride, already late…all that?

There’s a commonly overlooked verse.

When you get your first shiner square on your nose…right before your first school pictures. 

I present to you…Landon’s first big bruise.


Occurring two days before Landon’s first school picture.

Also coming soon…Landon’s first time wearing concealer.  :-)






*For the record, we think he lost a battle with mama’s collar-bone.  But on a bright note, look at those eyes!

Tales from our Crib

Just a quick one to hopefully give you a smile, and help you feel a bit better about yourself.

I’m behind on laundry, WAY behind on laundry. We’re all wearing things we’d rather not. Even the babies seem embarrassed. Karson might experiment with a toga soon.  Is this even my shirt?

I’m exaggerating.  Or am I. 

Anyway, imagine my surprise when I am folding Karson’s basket of clean clothes, and I discover a pair of 3T girl jeans in all their bedazzled glory.

Am I so far behind that these are mine from 30 years ago?

Is there a little 3-year-old walking around wondering why I stole her pants??

Did I forget I have a daughter???

Am I being recruited in to the Sisterhood of the Traveling Pants????

Some things in life are better left as a mystery.

To A Tired Mommy

Hello tired moms. You are everywhere. You are balancing snotty noses, smelly diapers, skinned knees, school fundraisers, themed birthday parties, dusty shelves, sticky floors, doctor appointments, school meetings, practice schedules, tight budgets and bedtime battles. On top of that, many of you are also trying to maintain a career, build a strong relationship with your husband, or possibly remember to say hello to a friend or two every now and then.

You are tired.

As if that wasn’t enough, the mom next to you sent her kid to school with a lunch box filled with organic fruit, homemade kale chips, and little hummus sandwiches shaped like Disney princesses. Is that homemade bread??

Hummus Elsa stares at you in judgment as you unpack your child’s Mac N Cheese cup for the 2nd day in a row. Why doesn’t my kid like hummus? What IS Kale?

Keeping up is hard.

In this Pinterest loving, HGTV aspiring, have it all society, we can drive ourselves batty trying to excel at motherhood.

At life.

Why doesn’t my kid have a magical reading closet? I should make edible play dough. I’m going to start yoga classes. I need to teach the kids Spanish. I will keep that box and turn it in to a puppet theater. Then I shall make fantastic homemade puppets. I shall do all the things wonderfully all the time, and with a twinkle in my eye.

Good golly, no wonder we’re exhausted. We’re doing it to ourselves, and in turn to each other. And at the end of the day we’re missing out on the extraordinarily ordinary moments that are all too fleeting.

We are too busy to be present.

One hectic morning, 5 (yes 5) dirty diapers hit the household before 7:00 am. I finally rushed out the door with still wet hair, oblivious to the smear of formula Nolan had used to mark his territory on my tired left shoulder. The sink was full; a pile of bottles evidence of an evening and night spent trying to get our babies to grow. I stepped over the dirty laundry basket that was already on deck for the evening. The kitchen table had a pile of insurance and medical paperwork needing filed, next to an unfinished sensory ribbon project. Maybe I’ll finish it tomorrow. Probably not. I grabbed Karson’s bike helmet at the last-minute, thankful the neighbor had reminded me that today is the trike-a-thon at school.

I saw “The Foot Book” peeking out from his lunch bag and remembered we were supposed to read it. Instead, there it was, due to be returned to the loaner box at school. So I squeezed in to the backseat, and while daddy drove, Karson and I read The Foot Book (3 times). His lunch is ordinary. His clothes are of the ill-fitting-bottom-of-the-drawer-mommy-needs-to-do-laundry variety. He needs new shoes that will stay fastened better.

But I know without a doubt his favorite line is “fuzzy fur feet”.  And for this morning, that is victory enough.

Today, I encourage you to just be. Listen. Exist. See. Enjoy.

You aren’t doing everything right. And that’s ok. Someone is absolutely doing it better. And that’s fine too.   Because while you’re feeling guilty and inadequate, your little ones are looking up at you like you’re a hero. A hero who kisses boo boos, makes the best mac, is the passer outer of canned pears, gives the best hugs and says “fuzzy fur feet” funnier than anyone else.

We are each fearfully and wonderfully made. Loved just as we are.  So stop trying so hard to be the world’s kind of perfect. And learn to be. Be present. Years from now, that is what your children will remember. Not what they ate for lunch, or whether or not their toys sat amongst the dust, or if you embarrassed them at soccer practice with your wrinkled button down shirt and horribly wind-blown hair. But that you were there, lovingly participating in their childhood. Present.

Be present. Truly present. And today will have been a success.


Psalm 139:14,  I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well.

Matthew 6:34,  Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Romans 12:2, Do not be conformed to this world, but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect.

Philippians 4:6, Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your request to God.

Colossians 3:15, And let the peace of Christ rule in your hearts, to which indeed you were called in one body. And be thankful.

Thessalonians 5:16-18, Be joyful always; pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus.

Outpatient begins!

The boys started outpatient therapy this week. I’ve been anxious to get started. For one thing…in general I want to keep taking action, getting ideas, and moving forward. But more specifically, Nolan has been having an issue that I wanted help addressing. So here are the main points discussed at our first appointment:

Nolan’s neck: Both boys turn their heads right and up. If you’ve paid attention in photos where they are laying down, you’ve likely already noticed that. They CAN turn their heads left, but generally don’t choose it. And in Nolan’s case, even if I start him on the left side of his head, he usually switches it quickly. The result of that is that his skull is forming with a flatter spot on the back right. Not only that, but we’re starting to worry about his neck muscles. Uneven strength/tightness can become a compounding issue. The technical term for this is Torticollis. I am aware of it…I am trying to fight against it…but I need new ideas, and having another set of eyes watching it will be good. We’re not positive why he does this. It can be more common in children with neurological issues. We also have vision concerns, so one theory is that he can see out of his peripheral vision better if he turns that way. Or perhaps he hears better out of his left ear. Regardless of why – we need to work on it early and often. New ideas include: Incorporating neck stretches and flexing in to each diaper change for Nolan, and every other for Landon.   Use objects to incentivize them to turn left. (Something soft against their cheek, our voices, lights, etc).

Tactile/Touch: I have theorized that touch is their strongest sense. Perhaps because hearing and vision are impaired, or perhaps because of reactions/overreactions I have noted. New ideas include: (Wilbarger Protocol).Using a special brush on their limbs, hands, feet, and back 1-2 times per day.  As well as joint compression.  We will also continue to try to introduce new textures to their skin. And we see an opportunity to use their desire for something soft against their cheeks and face as a way to incentivize them to turn their heads left more often.

There’s tons more to discuss, but those topics plus the initial assessment and getting to know each other made for a very full appointment with lots of great discussion! I’ll keep you posted as new ideas emerge, and as goals are checked off.  It feels good to expand our team. We already have a very engaged and caring day care staff, and a developmental specialist who has been great at helping the day care and I implement ideas. Adding outpatient and the resulting daily “homework” will up the busy factor, but we are eager to kick it up a notch, and help these boys reach their full potential.


L - Those cheeks...

L – Those cheeks…

N - Those eyes...

N – Those eyes…


To My Other Child

Dear K,

I still see you.  I see how big you’re getting, so smart, so kind.  I am slowly bringing out your old clothes for your brothers to wear, and am shocked each time, convinced that only yesterday, you were so small as well.

Life is not always what we imagined.  When we excitedly told you that two little babies were going to join our family, your excitement was timid.  But it was authentic.  And I could not wait to see you become a big brother.  When we found out they might be very ill, I pulled back a bit.  I instead talked about how they would need a big brother to help them.  And in our bed time stories, I often had you pulling them on adventures with you in a shiny red wagon.

They are here.  And they are ill.  And they demand more of me than I sometimes have to give.  That doesn’t always leave a lot left over for you.  You deserve so much, but you happily accept what is offered.

I often worry about how all of this will impact you.  There is plenty I could fret over, but I try to focus on the good.  And YOU, my dear K, will learn far more about compassion and acceptance than many of us do in a life time.

At the end of the day, you’re actually teaching ME about those things.  You do not see our babies for what they are not.  You only see them for what they are…Little Brothers who need love.  And kisses.  And help holding toys.

You now celebrate with us and exclaim “Landon’s eyes are open!”  “Nolan’s smiling!”  or most importantly, “He’s happy!”  and I realize YOU care about the right things.  Even if I sometimes get off track.


Two specific moments recently really hit home for me.  One night I was trying to help your brother learn the feel of a spoon.  So while I was cooking dinner, I would turn around, and try a spoonful of milk.  Landon drooled more than he drank, but it was a worthwhile exercise that will likely be repeated often, long before it is mastered.  I ran upstairs to get a load of laundry, and took a few minutes to return.  When I did, you were there, by his side, just sitting with him.


On another occasion, we all returned home around the same time, but in two vehicles.  I was still bringing babies in, but you didn’t know that.  You ran in the house, went to their “spots”, and when they weren’t there, you started bawling and crying that the babies were gone.  You don’t even understand how real of a concern that is, yet your choice of words and truly devastated reaction hit me like a punch to the heart.   I’ve cried about that moment several times since.  I was reminded of how much YOU stand to lose.   And how much you are invested in our boys.  But it also reminded me how seriously you are taking your role.  And how proud I am of who you are.

There are a lot of things that make these boys seem unlucky at a glance.  But thanks to you, there are also things that make them seem like the luckiest little boys alive.  They have you.   And I have all of you.  And that makes me a pretty lucky mama too.



Not so long ago…I was uploading photos of the boys’ first day at day care.

Two boys.  Perfect in their own way.  Doing so well that I am able to continue to work.  And there we were, documenting a first day at day care.  I feel so grateful to be able to celebrate ANY “first”.  Remember…we weren’t sure how many we would get to celebrate.

On that same night, I discovered several unread messages in my facebook inbox marked “other”.  It seems because they were from individuals not on my friends list, they went in to a different folder.  Nonetheless…I had overlooked them for months.  The first one dated back to July when we first heard the Dandy Walker diagnosis.  They continued throughout the pregnancy, peaked on the day the boys arrived, and continued again as we’ve watched the boys on their journey.  Each was a reminder of the ups and downs we’ve been through.  And of the spiritual journey that has helped to define me.

It was a reminder to me to always remember.

I tried to send very belated “thank you” notes to most of them.  One in particular was from a fellow mama to be, waiting on the arrival of her sweet baby with Dandy Walker.  By the time I responded to that message, that sweet baby had become an angel.   The strength and faith of that mom was and still is amazing.

A strong, strong reminder to me to remember.

It is easy for me to be thankful when things are good.  And to seek God when things are not so good.  But I want to remember to be thankful when times are tough.  When storms rage on.  When prayers aren’t answered.  And to seek God, even when life is easy.  Even when we’re taking two babies to day care, going to birthday parties, and planning summer vacations.  Even when where we were seems so far away, and what we still fear feels impossible.