Friday, September 30, 2011

Apple Cider

Today we attended a field trip for Gwen's preschool where we pressed apples to make cider.  What a wonderful way for the children to experience community, and take pride in their work.  The children participated in each step from picking the apples off the trees, cutting the apples, pressing them and then the glorious satisfaction of drinking the cider they had made as a community. 

I think these pictures will speak for themselves. 
(You can have fun picturing me taking these photos with Luke in the front pack...)

Tomorrow we are participating in the Step Up for Down syndrome walk in La Crosse, Wisconsin.  We are so proud to be a part of this community and can't wait to show our support tomorrow!  If you happen to be in the La Crosse area, please consider joining us. 

Registration begins at 10:00 am with the walk beginning at 11:00 am.

Also - thank you so much to those of you who have donated to Luke's Team.  I am not very comfortable asking for donations, so this was a bit out of my comfort zone.  COTH was responsible for the wonderful resources we were sent home with after Luke's birth. We do not pay dues to be a part of this organization and Luke is able to participate in music therapy free of charge.  Above all, COTH is giving Luke and our family a support system that is invaluable.  So, thank you for loving Luke and supporting this wonderful organization.  We are truly grateful for our community of love and support.

Thursday, September 22, 2011



Blessed is the servant who loves his brother
as much when he is sick and useless
as when he is well and can be of service to him.
And blessed is he who loves his brother
as well when he is a far off as when he is by his side,
and who would say nothing behind his back he might not,
in love,
say before his face.
-St Francis of Assisi


Friday, September 9, 2011


Did you know that opening up the hand is a developmental milestone for a baby?  This was news to me, and I have read a lot of books about babies and children!  With my other children I never had to think about their development.  It just happened.  Of course I helped them by reading, playing, singing and talking with them.  But basically, I put them on their tummies and eventually they started crawling and walking without me noticing the smaller steps along the way.

This time I have to pay attention.

We know that Luke will eventually walk and talk, but there is a high probability that those things will take a little longer for him.

Gwenyth, 6 months

Colin, 7 months

Luke, 7 months

When Luke was a month old we were visited by our Service Coordinator (SC) and a nurse who were assigned to us by the Iowa AEA.  They came with resources, contacts, and a plan of attack to make sure Luke had everything he needed.  The reinforcements had arrived!

Luke has an Individualized Family Service Plan (IFSP) which lists our goals for Luke.  It is the birth to 3 version of an Individualized Education Plan (IEP) for those other teachers out there.  :)  Every month from now until Luke is 3 years old, our SC will come to our home and work with Luke and our family.  Besides our SC's visit, we also have had visits from a Physical Therapist (PT) since Luke was 2 months old, and as of last month we now have a Speech-Language Pathologist (SLP) who will also be visiting each month.  These services are all free through the AEA under the Early Intervention Program.  I am grateful for these amazing professionals who are so caring and knowledgeable.  It really does take a village.

So, the story of the superman pants ...

Phone picture

At our PT's first visit she pulled out these little red pants and said that when Luke was a little older we would have him wear them to help strengthen the correct muscles in his core.  As she looked at the pants and at Luke she paused and said she guessed we could try them on him.  (I believe she said she hadn't used them with a baby as young as Luke before.)  I couldn't believe it!  Because Luke has hypotonia he tends to lay with his arms to the side, head to the side and knees turned out.  When we put the little red pants on him I actually gasped!  I hadn't even noticed that he didn't hold his body like my other children had.  The pants pulled his hips into alignment and immediately I could see that they would help him. 

Hello Superman Pants! (yes - capitals!)

Now when he wiggles around, rolls, and pulls up his knees he is strengthening the correct muscles in his core that are essential to roll, sit up, pull up and eventually walk.  We have SO many pictures of Luke wearing the superman pants, but it's not so much that he wears him, but what he can do because of them. 

Things like this ...

and this ...

This may look like a tired baby to you, but I see the movement from tummy to sitting up here.  Knee up, hand in the right position ... not quite strong enough, but the foundation is there.

I appreciate every small step.  Nothing is lost to me.  I notice every movement of Luke's body, every muscle he uses and those he avoids.  I notice how his eyebrows raise when mine do and that he mimics my vowel shapes when I talk to him.  I also notice other babies his age, or even younger, that seem so much older.  It doesn't bother me because I am completely in love with my Luke, but I do notice it. 

We get to experience all the typical milestones with Gwen and Colin.  Luke is our adventure.  There is an innocence in his eyes that I fall in love with each and every day.  A look of love and trust.  A look that makes me put his superman pants on yet again, and take the time to work with him, because he deserves it.  And because I don't want to let him down. 

As Colin says whenever Luke has his pants on ...
"Super Luke!"

Maybe it's not the pants that are super, but rather the boy wearing them.

In other news: 
Gwen is back at Kinderhaus for preschool this year.

1st day of Kinderhaus 2010

1st day of Kinderhaus 2011 (with a sleepy Luke)

I love how growth is measured not in inches, but in stones on the fireplace...

Have a wonderful weekend.