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On our own

Posted Jan 19 2013 7:01pm

I must admit, I was terrified at the end of the day yesterday. We have Nathan to feed all weekend long, all by ourselves. Will I remember the rules? Will he comply?

I can only speak for myself, I would like to think Jay was somewhat nervous, but I’m not sure he worries much about anything. He balances out the relationship.

In order to sleep better, I read the instructions carefully, examined his current food list (nothing new introduced), and I planned out all 4 meals.

I was not going to have Jay drag him out of bed at 6:30 am for treatments, we figured we would try to get a little extra sleep. So the only variable would be the meal times, depending on when Nathan woke up.

Knowing that I could sleep in, I woke up at 5:30 am, naturally.

I looked to my right, Teagan and Jay both deep in slumber. I couldn’t have been more awake, so I decided to get up for the day. I hopped on the elliptical and into the shower. By the time I was done with all that, Teagan and Jay were waking up.

Nathan woke up soon after and we tried to schedule our day the same as the day program he is attending.

His day went somewhat like this:

• Prevacid immediately upon rising.
• Xopenex, 30 minutes vest, hypertonic saline
• 8 ounces 1.5 cal pediasure, 1/8 teaspoon salt, 5 enzymes (Creon 6)
• Bactrim
• Get dressed, put on orthotics

2 – 3 hours

Meal 1
• 1 ounce greek yogurt
• 1 ounce puréed waffle
• Followed by 2 ounces 1.5 cal pediasure in open cup with enzymes

2 – 3 hours

Meal 2
• 1 ounce applesauce
• 1 ounce sweet potato
• Followed by 2 ounces 1.5 cal pediasure in open cup with enzymes
: he gagged on sweet potato and vomited, the purée was too thick, once I thinned it, he accepted and swallowed all bites ::

2 – 3 hours

Meal 3
• 1 ounce pear
• 1 ounce sausage, egg, cheese
• Followed by 2 ounces 1.5 cal pediasure in open cup with enzymes

2 – 3 hours

Meal 4
• 1 ounce greek yogurt
• 1 ounce puréed chicken breast
: this was a tough meal, he accepted all bites without tantrum or complaining, however the texture of the chicken was not smooth enough using my baby food processor. He gagged multiple times and vomited once. We need to get thinner, smoother consistencies with our purées. Ultimately he ate all the chicken, when I allowed him a sip of pediasure after he swallowed. It took 5.5 ounces of pediasure to do it. ::

Bedtime routine

• Zyrtec
• Bactrim
• 3/4 cap Miralax in 2-3 ounces juice
• Xopenex, 30 minutes vest, hypertonic saline
• 8 ounces pediasure, 1/8 tsp salt, enzymes.


All in all I’d say we survived our first day on our own. I’m not going to do chicken again tomorrow unless I can get it smoother. Nathan repeatedly asked for soda, but he listened when we said no snacks or drinks between meals.

We are in awe of this progress. He is even listening a little bit better. After meals he has been trained to place his spoon in the sink. Loving the day treatment program.

It’s been a rambling sort of post, but this is me and my rambling mind. Good night, time to plan out tomorrow’s meals so I can get some sleep. I just know my eyes are going to pop open at 5:30 in the morning. I may as well just lay out my workout clothes tonight too.

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