We began this morning with negative test results for all respiratory illnesses including Covid-19! Mom was relieved to stop wearing all of the protective gear.

Eva has had no fever today. We are guessing that yesterday’s fever may even have been neurological!

We are awaiting the urinary culture to verify that Eva does not have a UTI. It is still a definite possibility that she does and might require further antibiotics, but the absence of fever seems to point away from that.

The big news is that Evangeline is being discharged today!! The doctors have given the green light for us to go home.

We are excited to be bringing Evangeline home and look forward to a time of better seizure control so that she can start getting stronger again.

We continue to appreciate your love and support and prayers! Thank you!

Today has been a day of progress!

Eva produced three wet diapers completely on her own today, and we were finally able to help her have a significant bowel movement. She has got to feel better with all of that stuff out!

Eva has also spent several hours this afternoon completely off of oxygen. Such an amazing milestone! As the evening is coming on, she may require a low level of oxygen to help her sleep comfortably. This would not be a setback, and we anticipate being completely off of oxygen for good soon.

We have also been able to continue weaning down on two of Eva’s seizure meds without adverse effects. This is a huge win! The EEG has shown us that she continues to have seizures we cannot physically see, but today Eva enjoyed quite a bit of awake time with little seizure activity noted by Mom. Our goal is to reach a good balance between seizure control and alertness to achieve her best quality of life.

Your love and support and prayers mean so much to our family! Thank you!

Today was a good day. Evangeline got off the EEG. The neurologist believes we have learned what we needed to learn from it and no longer need it. Eva loves not having a bunch of wires glued to her head!

We believe we have reached a good level for the new seizure med and are currently weaning down on two of her old seizure meds.

Eva’s oxygen needs have stabilized and even lessened today. We are heading in the right direction!

Eva had quite a bit of awake time today and even had a bath. We are hoping for another good night of sleep.

We are still waiting for Eva to urinate on her own without our intervention and to have a bowel movement that she desperately needs.

Your continued prayers are so appreciated!

Evangeline had another relatively good day today. Her oxygen saturation levels are not improving as quickly as we might like but she is stable and still battling to get rid of the pneumonia. The doctors are still working on tweaking the meds to try and get the balance right for improving her seizure activity but also not have her be so sedated that she is inactive. This process is going to take several days. However, we are pleased that they can make adjustments very quickly since we are in the hospital.

One area that is being closely watched is her urological functioning. Prior to entering the hospital she already had difficulty with bowel movements. The last couple days she has not released her bladder in a regular fashion. A plan has been fashioned this afternoon to try and help improve this function.

One good piece of news: Evangeline moved one step down from PICU this afternoon. I think everyone feels that she is moving in the right direction currently. The progress is slow but we pray it continues.

Today has been a relatively good day. After experimenting with a couple new drugs overnight it appears the doctors have found one that is improving Evangeline’s brainwave activity. Now the plan is to attempt to get her on a dosage that will help her to maintain the improvements. We are all encouraged by this new plan. The strain of so much time at the hospital is catching up with Mom and she could use some good rest.

Please pray that the new treatment plan continues to work and for Mom to get some solid rest. Thank you for your continued support!!

Today has had its ups and downs. Evangeline did not have a great night as she was not tolerating lower levels of oxygen. After the oxygen levels were increased early this morning, she was able to rest comfortably again. The doctors indicated that they try to be fairly aggressive with decreasing the oxygen so this was not totally unexpected. The neurology team consulted with Mom and Dad this morning. It was suggested that Evangeline get on an EEG to take a look at how her brainwave patterns have changed these last few months. This was welcome news since we had determined that we would like an EEG. This afternoon shortly after Evangeline was hooked up to the EEG, the neurologist came for a visit. He indicated that Evangeline was experiencing near constant seizure activity. While this was not surprising, it was troubling. However, the neurological team was encouraged that they had, at the least, discovered a reason for what was presenting clinically. Therefore, tonight Evangeline will start a test dosage of a drug that we all are hopeful will improve the neurological activity.

One specific prayer request tonight – please pray for both Mom and Evangeline to get some good rest.

Thank you for your continued prayers. Our family is deeply appreciative of your care for us!!