Journey begins

E & T

Written Sep 23, 2011

Well, I’ll update this blog once or twice more in the next week and then that should be the end.  Timothy isn’t giving me much Caring Bridge worthy material, though if I can get my kids’ representatives to agree, we may continue this as a separate blog on a different site about Timothy and us wading through life’s first year.  We’ll see.

Like all good Irishmen in our family, Timothy has taken well to the bottle and is a big eater.  You would never know that this kid was hooked up to an IV just a few weeks ago.  Physically, he is doing awesome.  He’s gaining weight, his digestive system is working well and he looks cute with his little vacuum bag on his tummy.

We clean out the colostomy bag a few times a day, which is easy.  Then, every other day, we remove and replace his bag, which is not bad once you get the hang of it.  Soon, we should be ready to have ‘Minute to Win It’ competitions to see which family member can change big dog’s bag the fastest.  Could get messy.

Timothy has had a few home nurse visits, and on Friday, we’ll get a visit from the Bloomington public health nurse and a representative from Edina’s Early Childhood Special Education department.  They’ll talk with us about his Down syndrome diagnosis, and about services and a plan for the man.  That’s when this journey really begins.

Although young T is already a champion eater, he is only on and off with nursing, and that is the challenge right now, as it leads Laura to have some long nights with the young gun.  Our hope is to get him taking all of his meals from breastfeeding in the next month, and to start moving him to a more regular schedule.  We’ll let you know what he says.

I close with a prayer.  For 13 years, our family has said the same prayer before dinners at our house (and I’d like to say that it is always said with joy, sincerity and gratitude but that would be a lie).  It is one that Elisabeth learned at her Presbyterian preschool in Albuquerque, New Mexico.  We haven’t succeeded in offending anyone with it, and I love its simplicity, and the fact that it begins and ends with ‘thank you’.

Thank you, God, for rain and sun,

For games we play and all our fun.

For crackers to crunch and juice to drink,

Thank you, God, for everything.  Amen.


The Lees

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