It has been two weeks since the last blog post, and we have heard that some of you are concerned and wondering where Emmett is. There is no need to worry as Emmett is enjoying quality time with his family at home and has continued to provide us with little signs that the communication from his brain to his bodies' various muscles is improving. We are so pleased and, with an illness that we were initially told there was no hope, we are absolutely hopeful. To put this into a better perspective for you, at the beginning of October, Emmett had lost a lot of strength in his neck. He used his eyes, of course, but if there was a noise on his right and he was looking left, he couldn't move to see it. We had to turn his head. That is something that you cannot see in the pictures of this cute little darling. His arm movement had become very weak - basically moving up and down. He couldn't grab and hold his own hands. If you wrapped a helium balloon ribbon around his wrist, he could move it, but small, slow movements. It was a very challenging time. Of course, we have honestly always been hopeful but hope is easier when there are positive signs.
Fast forward to today and Emmett is actively turning his head from left to right. His arm movement is, amazingly, likely back to the same level of movement he had in late August or early September. He will firmly grasp your finger or, when it's placed near him, he will grab the helium balloon ribbons and vigorously yank it around. All the while making faces like in the picture on the left - that is absolutely his balloon face. One of concentration as he tries and succeeds in moving the balloon and excitement as he observes it bouncing around. He was in his special harness to use his Jolly Jumper and, while in it, was turning his head left and right. Before he would possibly swat at something with his entire hand/arm; now he reaches out to his pinwheel with his pointer finger (that same finger that's reaching for the leaves above) and spins the wheel using his finger! These may not seem like much, but he has never done that before. His eyes would look around, but this time it is absolutely his head that is turning. Going back to October, I was holding Emmett one afternoon when a solitary tear rolled down his cheek. It is presumtuous to make assumptions about what he was thinking, but I am positive that he knew that he couldn't reach the (toy, balloon, hand, soother, ...) that was right beside him and that he knew just a few weeks earlier that he could. That was such a powerful moment for me - and one that wiped out any questions I had of this experimental ISIS drug trial. Not only is it very much an experiment, but needles and lumbar punctures have to hurt; however, for the chance of improvement it is something that we must put Emmett through. Especially now that we can see something happening.
balloons. We found some, but that's not the biggest change. In just two weeks, Emmett has changed. He's growing. He's simply bigger. No teeth yet, but they'll arrive when they're ready. Pam and I gave Emmett, Alisha, and Josh a bit of space and we've been travelling for the past two weeks. Since Emmett was in a good place, it was time to give this family a little bit of room and independence. Coming back it is so interesting to see the changes in this little boy. Josh had changed too - his beard was gone and he only had a Movember moustache. He's (Emmett, not Josh!) also more verbal - making sounds all the time. And his arm and hand movements are almost constant. We are seeing movement that we haven't seen since late summer. Emmett's head must be constantly supported, but even here there is a difference, as I said already. Emmett is moving his head left to right more than before. There appears to be more support. While Emmett only gets to the community pool once in a while, he does get swimming exercise daily in the family bathtub. This 'weightless' environment is where Emmett is really beginning to show movement. This is so incredibly awesome.
Oh, and we did find some new helium balloons! Pictures of them in a later blog post.