Ethan Barona

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November 18, 2010 2:00pm

I am updating again! I am trying to stay up with updating everyone.

I want to first start off by saying that I had a wonderful time in Seattle. It was great to meet all the mom's going through a lot of the same things. It felt as though we'd been friends forever. I am so grateful to have made friends and shared with people, most of whom have been on this journey longer than I have, and who were able to give me a lot of encouragement. It was a lot of emotions for me though, cause even as I am grateful there are more people going through this, I am sad at the same time that we've all had to face such traumatic and emotional circumstances. It was a much needed break and time away. It was a beautiful place and we got to spend a lot of time just laughing and playing games and talking, which was really nice. Also, the lady who put it together did an awesome job, had everything worked out and we didn't have to do anything and it really was a treat!

I also wanted to update about Ethan's swallow study. We had that this morning just to check on how he's swallowing. He did great on all pureed foods, even as thin as yogurt and as thick as pureed rice and chicken (semi solid), with no aspriation. I was expecting to get this response, but it was still good just to check. He's now been eating 100% by mouth for 3 months!! But, when we did the thickened liquid, he did aspirate a little, so the therapist said still no liquids for now. I will keep practicing with thin foods like applesauce consistency and yogurt to help him practice. We'll repeat the study in another 6 months. I understand it's a process (as it's taken this long to do well with food), but I was still hoping for a better response. I am not discouraged though, as I have faith the next one will be better! One neat thing happened though, the therapist who performed the study was one of  Ethan's therapist's two years ago when we went to therapy at CHOA on Satellite. She was so excited to see all his progress, how happy he is, how he can smile and respond, how well he's doing with food, etc. When she saw him it was when he was still crying all the time and barely responsive. She asked if she could go back and tell all the therapists who saw him how well he's doing! This really was exciting and encouraging to hear!! It helps me realize and appreciate all the progress he's made.

In speech he continues to do well, as well as in PT and OT, slowly making progress and meeting the goals they've made for him. I am still working on meeting with the school to evaluate him and see what services they will offer us. I am excited to see how he'll respond to some of the other things they can do for him. Talking to some of the mom's in Seattle I began to hope for more from Ethan, as far as school and education goes. I know there is a lot he understands and can learn, and I am hoping we can just find the magic key to help him unlock it. He has so much potential and I think I've forgotten that. I came home overwhelmed with emotion and saddened by my reality, but also hopeful and appreciative of all I have, and hopeful for even more in the future.

Lastly, I just want to say that God has really been showing me that He is in control and that He still loves and cares for us. I have been reminded of this by people reaching out and blessing and showing us love. I am shocked by how God has put people in my life to say or do just the thing I need at just the right time. This is God's loving way of reminding me I need to do a better job of trusting Him and not letting the stress of life allow me to lose sight of what's important. Thank you so much for caring for us and for my sweet boy. Thank you for your continued prayers for Ethan and his healing, and for my strength to keep going.