Stricken with Strictures (?)

Yikes, after such a glowing report a few days ago, Evelyn suddenly started having real trouble getting food down (and by food I mean pureed veggies or small bits of banana, etc). In fact, Linette had to “save her” from choking once and me three times (we applied a modified Heimlich Maneuver, and up came copious amounts of food that had apparently backed up in her esophagus)…cool to save your daughter’s life but not so cool to have a mess all over yourself and the floor. Oh well.

Evelyn's chest x-ray, May 1, 2011

We immediately suspected that either A. she had swallowed something and it was stuck in her throat, or B. she had developed some sort of stricture–an abnormal narrowing–of her esophagus at the point of her surgical repair (which we were warned could easily happen).

After it happened this morning, we took her to the ER and had her chest x-rayed (see camera phone picture of her in a plastic tomb to keep her still!) but there was no foreign object. So in the next day or so we will have another barium swallow study to determine what is happening to her esophagus. Once we know, we’ll post. Pray that we can figure it out quickly (she is getting hungry!) and that Dr. Baesl can fix it easily and safely.

More soon.

Growing!

Been awhile since we’ve posted — things have been hectic here!

At any rate, yesterday our pulmonologist called to tell us that Evelyn’s overnight oxygen test went well and he doesn’t need to see her any more. We are thankful and relieved that she is off oxygen and doing well!

On May 5th, she has a regular appointment with a physical therapist. Awhile back a specialist told us Ev is behind on her gross motor skills (she struggles with sitting upright, etc), so we have been working with her on that. It might take her a few months to catch up, but considering all she has been through in her first year of life, we’re not surprised — or concerned.

In June she will see her surgeon and cardiologist for one-year checkups. We expect those exams to go well, too.  In short, she is doing fantastic and, as always, we are grateful for your thoughts and prayers!

From left, Margaret, Henry, Evelyn and Olivia. Easter Day, Colorado Springs, CO - April 2011

Evelyn Update

It has been a long time since we’ve shared how Evelyn is doing. The good news is that she is doing really well. She is growing normally, gaining weight, and smiling at everyone. She continues to impress us with her gentle, sweet spirit. We are thankful! Here are a few photos I took of Evelyn and Linette about three weeks ago.

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Evelyn did a swallow study earlier this month and it was determined that the site of her esophagus repair is about 30 percent of the size of the upper part of her esophagus. So basically that means this area needs to get stretched out. She will do another study in December, and if it is still constricted like it is now, they may need to do a procedure to stretch it out. So this is something we’d like prayer for.

The other thing is that she is still on oxygen. She has not had any more seizures, but she does have sleep apnea issues. We are not sure what is behind that–it could simply be altitude. But until her oxygen levels are consistently high without any of these apnea issues, then she will continue to be on the oxygen. Please pray that this issue will resolve as well.

Thanks for all your kind words, notes, and prayers! We will update again in December. In the meantime, if you live in the area and haven’t yet met Evelyn, we’d love to have you drop by and see this little girl–she is great and we know you’d love her!