Saturday, January 29, 2011


It's been a few weeks since I updated! Thanks to everyone for their thoughts and prayers and wishes. We haven't felt alone on this journey.
Things have been up and down. We all had a cold. Henry doesn't manage colds very well. It exaggerates his gag reflex, and makes feeding difficult.
We met with a PT, an OT and a SP last week. We're putting some plans together for goals on oral feeding and in his speech therapy we have decided to start getting Henry ready for a couple of switches. We use his right hand for yes and his left hand for no. We tap his hand on the correct side to indicate a positive or negative response. Later, he'll have a switch with several options that he can click through to communicate with. It's exciting, and I'm trying to stay in the moment. I don't want to be disappointed later.
Henry's feedings are getting better. But earlier this week, he slept for two days, barely waking to smile and snuggle his stuffed puppy. I feel like he's been gone for a month now. I miss him!

Anastasia is gearing up for the Book Sale. All proceedes will be sent to the United Cerebral Palsy of Oregon. She's got a great venue for free, and an interview on a local radio station. But she NEEDS MORE BOOKS! We've been collecting for weeks, but need to boost our efforts in the last weeks!

Next week is a slow one for appointments - just the fitting for his braces- Hopefully! The following week, Henry's birthday, we meet with an Ot, the Pt, his Education Specialist, his Gi doc - we go to a Low Vision Clinic for his official vision impairment diagnosis, and we meet with a nutritionist to discuss his tube feeds and the introduction of solids.

Now, what to do for his birthday. I want to have a birthday party for him. I know he won't understand that it's a special day, but the rest of us do. What should we do? No one is eating sugar, so cake is out. We're not eating pizza, so that's out. Henry doesn't have a favorite meal, so I can't make that for him. How do we celebrate his special day? It falls on Valentines Day. I wonder if we should have a theme? Hearts and love seem appropriate. Spell out Happy Birthday with cut out hearts, and decorate with paper heart streamers!


  1. Can't even begin to tell you how badly I wish I could be at that party...Hearts and love seem to be surrounding you and your family... a perfect theme it seems to be....amazing're just amazing..sometimes paths cross and the person standing in that path lights the way for you....I see're glowing with light... I love you my friend .....As always..XOXOXOXOXOXO

  2. Your 1st birthday party theme idea is...perfect and appropriate. It's such a great choice and all of that love? An amazing part of the celebration!