Here is the latest update on Ethan. I decided to put the whole thing on here so you can see how amazing Ethan's mother is. She stays so positive and can find blessings in the smallest things.
A Little Christmas Miracle
Miracles come in all shapes and sizes, some seen and some unseen. Many of you have been praying for a Christmas miracle for Ethan, and though this may not have been the exact miracle you were seeking, we must say that we did get a miracle in the form of family and good general health. Ethan was able to enjoy being with both sides of our family, was able to play and smile and open presents, and he did not have any other illness to bog down the fun! Given what Ethan has gone through these past few weeks and months, it is nothing short of a miracle that he had as wonderful weekend as he did with his loving and caring relatives. We are so thankful for the blessings we have received throughout this journey and cannot begin to tell you how much your prayers have meant and made a difference!
It is said that "out of difficulties grows miracles," and as we continue to count our blessings, we know that our Christmas miracle is just the beginning of what we need to pray for Ethan. He has continued struggling physically, unable to walk more than 3-5 feet without falling, and when standing in place he will often begin walking backwards ending up in a fall as well. Because his neurologist has left the country for a couple weeks holiday vacation, there is no other plan on the table other than to "hold out on any changes to see if the diet works." The suggestion in the meanwhile was to take him to see his physical therapist to ask her opinion on whether the unsteadiness was seizures or "ataxia" (a significant lack of muscle coordination). We brought him in on Thursday night and at the end of his session, the therapist delivered some news that was tough to swallow at first. She admitted that it is too difficult to tell whether it is seizures or ataxia. She did say, though, that Ethan is likely going to need a walker or arm brace crutches to aid his mobility, as he has needed nearly full assistance to walk longer distances. She said that a wheelchair may also be an option to look at, but she preferred not to go there just yet as she wants to "make sure he does not lose the muscle that he has left." We were left to stew with this thought over the weekend, and as we watched Ethan, the reality finally set in that this was really the direction that we have been headed. Ethan's neurologist once said on a TV interview, "no seizure is good for the brain," and due to the hundreds of daily seizures the physical signs of this are finally beginning to manifest...he has slowly begun to deteriorate. We are hoping to connect with the neurology clinic as soon as they return from the holiday break, to see if there is anything else we can do to help ease some of the significant tremor and ataxia as we wait for the neurologist to return and visit with us at our clinic appointment in January, though, we are not sure that there really is anything that can be done until the seizures are slowed or stopped...nothing except for pray and play, as often and as much as possible! In this, we know a miracle will grow...in some shape or size, seen or unseen...