Dr. Baesl would like to repeat the barium swallow test in a few weeks; he is considering doing a dilation procedure to try to widen her lower esophagus, which is narrower than the upper portion. Although there is no stricture, he would do this to help keep another blockage like this from happening again, or at least try to lower the odds. Since Evelyn will continue to move into eating more and different types of solid food in the months ahead, then this would make perfect sense. Dr. Baesl will evaluate after the next barium swallow study.

Meanwhile, thanks so much for your prayers and kind notes–they have been very encouraging and meant a great deal to us!

Evelyn immediatly after the surgery, still asleep from the anesthesia. She woke after about five minutes, looking for food!

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.

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 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!

No one was able to pinpoint why she had seizures, but since she hasn’t had another one and since all the tests are clear, there is no great reason to worry about it. So we aren’t. (If Evelyn has another seizure we have a plan to treat her with medication and follow up with another EEG). The best news, in our opinion, is that her heart has shown improvement. We are very happy about this, to say the least.

We are turning off the lights now and are so thankful that Evelyn is home and for your prayers!

Linette spent most of today with our pediatrician getting Evelyn checked out as well as in the ER, where she had to go to get in to see Dr. Baesl, Ev’s surgeon, to have him look at her wound, which had become pussy and red. He spent some time cleaning it and getting it redressed. There was no infection. More good news.

Evelyn does have a nasty IV burn–a large black spot about the size of a silver dollar–on her head. But it, too, is expected to heal. If it does leave a scar, it looks like it will be under her hair. So maybe even this will become a non-issue.

Other than some raspy coughing, Evelyn continues to do well. She will see the surgeon and the pediatrician again soon, and we trust she will receive good reports. Then later this month she will see the cardiologist about the hole in her heart. But even in that, we are optimistic and trust that the hole will close on its own. We’ll write more as we know it!