A ray of hope

Today is a good day. Today is the day Ryan smiled again. I haven't seen a smile from him in several weeks. Lately he's been unfocused and disengaged. I don't know if it's because of his Infantile Spasms or the ACTH medicine he's on, but he just hasn't been here with us. I was beginning to get discouraged that he would never engage with me or smile again. I would work with him on his stretches and exercises I am learning through our EI and PT, but again, he wasn't participating or trying to move really at all.

We went for a Neurology follow up this week and did his weekly EEG. According to our Neurologist, Ryan's EEG still looked good but wasn't totally "normal". She wasn't too concerned and said he might be someone who will never have a normal EEG, but she didn't see any seizures. She felt like we could once again lower his dose of ACTH and so now we can do injections every other day, instead of everyday. She was a little concerned about his left eye, which looks like it may be wandering and she's going to do a referral to an ophthalmologist. She thinks he may need to get an eye patch to strengthen his weak eye. So we'll see what the eye doctor says when we have that appointment. Another thing is that Dr. Hunnicutt wanted us to get some lab work done to test a few things. She said she's casting a wide net right now and wants to either find out what's going on or eliminate a few things. We were able to eliminate Muscular Dystrophy. I was definitely glad to hear that. We haven't gotten the other test results back yet. Although his EEG still looked good, I left the appointment a little concerned and dismayed. I just felt sad and wanted better news or to hear something really good!

I have continued my prayers and I think God gave me a gift this morning. Fifi, Thomas's aunt that has been staying with us this week, mentioned that she thought he was focusing more and seemed to be seeing stuff, instead of just looking this morning. Before he left for work, Thomas said that he thought Ryan's eyes were more lively this morning. Then a miraculous thing happened. Ryan smiled. And he repeated that sweet smile several times. Tears of joy immediately sprung to my eyes. I needed that smile. I needed a sign that my baby was still there. I needed it to rejuvenate my hope and my attitude. Even if he has a bad day tomorrow, I now know that he can come back and the future is looking much brighter.

His smiles are such a gift. I can truly appreciate them so much. Maybe this is one small piece of Holland that I can enjoy right now. I am so thankful for this glimmer of light at the end of a dark tunnel.

In addition to the smiles, he was engaging in his stretches and exercises this morning. Instead of being limp, he was looking at Fifi and me and was moving around more. I can't wait to hear and see what our EI and PT think.

Y'all, I think our prayers are working and now I am here tearing up again just thinking about it. Thank you for all the prayers...keep it up!

Here are a few pictures of my beautiful boy. You can see his cheeks are definitely getting puffier from the steroids! Bless his sweet heart.