We are out of the hospital and doing great. Summer ran up to him yelling, “Ethan!”, and threw her arms around him. Then, Gabriel came running up. Ethan saw him and said, “Bubba!”, and gave him a big bear hug. They missed each other very much. It truly took my breath away to watch them. We wanted our littles to all be close in age because we wanted them to grow up together, play together, and be best friends. So far, we are so happy that they do have the relationships that we had hoped and prayed that they would have.
We have always walked a delicate line about how much we tell Summer and Gabriel. To them, Ethan is perfect, funny, loving, and kind. They see him just the way that see him.. He is their brother, and they love him dearly. Yes, they are aware that he does not talk, and, of course, they want that for him. They know that we are doing everything that we can to make sure that he is happy, healthy, and always safe, just as we do for them.
So, we are hopefully finished with testing, procedures, and appointments for now. Here is a breakdown of what we know. Ethan likely has verbal apraxia or dysarthria. In addition to the speech therapy that he receives at school, we are now working with a private speech therapist twice per week to see if she can help work his mouth muscles and coordination to increase his speech.
Ethan has stomach ulcers and esophagitis. Thankfully, the biopsies and lab work all came back normal. So, we believe that the ulcers and inflammation are a result of a lifetime of reflux. He will be on medication for a year, and we will do another endoscopy in 2-3 months to see if the medicine is working. Right now, Ethan seems to be feeling great, so we have every reason to believe that the medicine is working.
The 48-hour EEG resulted in great news. Everything was perfectly healthy and normal. Since Ethan does not sleep in our room, we were not 100% positive that he has restful sleep each night. All that I knew is that he is always asleep when I check on him. Children with sensory processing disorder often have irregular sleep patterns. Since the neurologist monitoring the study this week is also a sleep specialist, he was very interested in reviewing the nighttime EEG information. We were very happy when he told us that Ethan’s sleep pattern is excellent. Ethan slept 11-12 hours per night both nights. While a doctor at one point told me that it was not “normal” that Ethan required that much sleep, this doctor told me that it was absolutely wonderful that Ethan could sleep for that long of a stretch. And, the fact that the EEG showed that Ethan is receiving the proper cycles of sleep was truly great news.
While we do not have all of the answers that we have been seeking, we do believe that we know more than we did a few months, or even a few weeks, ago. We are encouraged by the team of specialists that we have in place for Ethan right now. And, we are confident that they are all doing everything that they can for Ethan. I firmly believe that his ability to touch the hearts and souls of so many people is one of the many reasons that he was given to us. I just cannot express enough, because there are just not words that are powerful enough, how blessed we are that this magical little boy is ours.
Thank you again for your thoughts and prayers. I feels so fortunate that I am able to share our story with so many kind, compassionate, caring people.
Have a great Saturday!