Thursday, June 4, 2009

Sorry I missed yesterday...

Hi Folks,

First of all, I have to say thank you to my mom and the Feldsteins. Why is it that I can hold it together most of the time, yet cry like a baby when I get a card or package from home? Thank you! It was exactly what we needed. We broke out the toys in the playroom and had a great time tossing the lightup suction cup ball. It didn't matter that the kids were all from different countries, their smiles said all I needed to know! Thank you! Attention baseball scouts...the little kid from Turkey throws like a major leaguer, I know, I almost lost my head...several times!

We're finishing up our third week here...can't believe it...and Ethan has still not taken one bite of a new food...kinda can believe that. (Insert sad frownie face here.) Our cardio appointment is July 2nd and Ethan's G-tube and scopes are scheduled for June 25th. Our official discharge date is July 13th, but I'm already starting to smell an extension. Please pray for an eating break through.

Speaking of eating, I figure you might be interested in what it is that Ethan actually does eat. He gets the vast majority of his calories from Yoplait Strawberry Smoothies and Yoplait Vanilla Custard Style Yogurt. He also noshes on some crunchy, yet quick to dissolve, foods like pretzels, Goldfish crackers, Ritz crackers and Reece Puff cereal. The crunchy stuff comes and goes like the weather. He's known to eat Jello Fat Free Pudding cups and vanilla ice cream with strong pursuasion. He used to eat spaghetti until the whole nasal regurgitation thing, but that is a story for another day. His fruit menu consists of banana and an occasional applesauce. There are no meats or vegetables in Cafe Ethan. He sips some water from a fountain and sometimes sips thick chocolate milk. I say sips because he rarely has these and rarely more than a 1/4 cup when he does.

The problem with this diet, aside from the whole misinterpretation of the four food groups as Dairy, Sugar, Salt and Flour, is that he accepts NO SUBSTITUTIONS. His food has to be the SAME BRAND, SAME FLAVOR. He even checks the labels.

He drinks 4-6 smoothies per day. The thing about smoothies is that they are trendy. In Cincinnati, trendy means that all the major grocery chains have discontinued to stock them. Biggs was the last grocery chain to carry the smoothies. A special thank you shout out to Dave, Phil and Jeff in frozen foods at the Mason-Montgomery Biggs store for special ordering the smoothies for months. Thanks guys! But alas, Biggs also chose to discontinue the smoothies. The last known (to me) store to carry Ethan's smoothies is Target. Tim in Market (Fields-Ertel store) special ordered the smoothies for Ethan until we came to Baltimore. Thanks to you too, Tim! If we cannot get the smoothies, Ethan will not drink PERIOD. He has been known to go 3.5 days without drinking anything because the distributor has been out of smoothies.

Baltimore appears to be on the same trend line as Cincinnati. I found one Target that carries his smoothies. It's about half an hour away from the Ronald McDonald House. (Cincinnatians, think of Over the Rhine, and the Mason.) I didn't get to update the blog last night because we were out looking for smoothies. We found 12. Hoo Haa!

We were about a mile from our home away from home when the big old storm hit. We got drenched. I thought it best not to update the blog in an electrical storm! So here we are.

Ethan is already sleeping. The program is very intense....have I mentioned that before?!?!...and it wipes him (us) out.

We miss you all! Please give a nod to the big guy upstairs for all the kids here...and their families. Love you!

Molly & Ethan

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