4 weeks later

Hello everyone, its hard to believe that its been 4 weeks since Ethan had his treatment. Lots has happened since then, mostly small things that have an impact in a BIG way. His balance has improved significantly...and has been on many a time out this past week....While that's not the "good part"...what is good is that while on those time outs, he's been sitting on his bottom on a regular chair (without arms) and his balance has been incredible! Before he would have had a startle reaction as he was fearful of falling...now, nothing but a big pout lip and a "Mommy...you are mean!"... He sat on a time out one day for 20 minutes. The other thing I've seen a huge difference with is brushing his teeth! Before his tongue got in the way and it was hard for him to keep his mouth open very long...Now he opens really wide with a much more controlled tongue. Our physical and occupational therapists too have seen much more controlled differences in his ability to keep his hands open as well as how he walks on his knees. Its been an amazing journey and with all journey's there are still challenges. We are now awaiting an appt call to see an orthopedic surgeon to help address the tight (and short) muscles in his heel cords and hamstrings. Once that is addressed and we take care of those struggles (which the stem cells will not help), we should see considerable strides. We realize it will not be an overnight fix but with therapy and persistance I've been told that there is a very likely chance Ethan will walk without crutches or a walker one day. WOW...that's all I can say. I still hold cautious but the little glimmer of hope makes me smile.
Monday will be a tough day for us however as we go to get Ethan's wheelchair. Due to the amount of tone he's lost combined with the tight muscles in his heel cords and hamstrings, he can no longer walk very far as it takes way to much energy and strength; so until we can get the surgery, its been recommended to put him in a chair. This will be hard for all of us, especially Ethan, as he is a very independent boy and one that likes to move on his own 2 legs. I'm nervous and worried about his reaction but know that the prayers are on their way.
Thank you for all those who have reached out to me for status checks and/or information. I have met sooo many incredible people along the way and none of us would have traded this experience for the world.
Good Luck to all of my new friends going to the Xcell Center in the next few weeks (or for those that are there now)...our thoughts and prayers are with you all...

That's it for now... talk to everyone soon!

Lisa