November 2015

Even More Balloons!

You may remember that I promised a long time ago, well just a few weeks ago probably, that I would make sure Emmett had helium balloons. The expression on his face is absolutely priceless. While there are some who have felt that I'd already gotten enough balloons, I have been on the hunt for more. I thought that DisneyLand would have some interesting balloons. And they did, sort of, but not ones that looked like they would last and not cause potential issues. For obvious reasons, latex style are being avoided and only foil will do. No foil balloons at Disney! That surprised me. So the search was on throughout the Pacific west coast for a 'better' balloon (well, we really only stopped at one store, but through the GPS we sort of looked!).

When Emmett looks up, he now sees what you see in the picture above! Four Balloons! As you can appreciate, when the older ones fade away, they are retired because they've completed their tour of duty. The expression on Emmett's face when the Mickey balloon appeared in his line of vision was priceless. And a couple of hours later when the giant Lightening MacQueen balloon arrived, it wasn't just Emmett's expression. It was also Alisha and Josh! More priceless looks - but no kodak moment as we were too busy watching to take pics at these moments. That last balloon is almost big enough to lift Emmett off of his crib. It blocks the sun like an eclipse ... we need to get a couple more!

Adults have a maze of balloons and ribbons to meander through to get any where in the house, but a promise is a promise. I will continue to keep getting balloons. I really don't think that there will ever be a time when Emmett has too many! Of course, I'm probably in the minority on this perspective, but within some sort of reason they will keep coming!

Of course, Emmett also needed to spend some time in his Jolly Jumper. He is so much more comfortable in it that it absolutely makes us all smile. The opportunity for him to be vertical is something he enjoys. And who doesn't like to bounce. So here are a few more pics of this special little boy. Plus a video of him playing with his balloons.

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.

But why no Blog updates for two weeks? That is because we've been on the search for better and bigger helium

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.

There is no question, this little boy is planning some mischief! Emmett's Grandpa Roger took this picture a couple of days ago and we're pretty positive that Roger is in on the plans!

Have a great day!

Our dear little Emmett is back to BC's Children's Hospital for the third part of his blind drug test. If it's the placebo then it is just a needle prick; if it is the real thing it is a lumbar puncture. All we know for certain is that Emmett really gets worked up with these tests and this is the third one in four weeks. After this they will be spread out over a much wider time span.

We're here for you, Emmett! And we're praying lots! (I will update this post late today about how it went.)

UPDATE:

Emmett has had a great afternoon, well, apart from the experimental drug procedure where he was separated from his parents. He did not enjoy that but, after a bit of anger and fussing, Emmett had a little nap and woke up happy and enjoying everyone around him. Over the past two weeks we've seen Emmett improve his movement and his strength. Babies with SMA Type 1 lose strength - they don't gain it - and this was confirmed by his doctors. That Emmett has gained strength was also confirmed. Apart from the hope gained by entering the trial, this is a bright moment for Alisha and Joshua. This is cause for hope - never give up! Thank God for the miracle of modern medicine.

Aside:

After the study, Emmett and his parents went back to their hotel, where we had Emmett's fourth helium balloon waiting for him. It was a 'Cars' balloon and you should have seen his face. He absolutely knew that it was a new balloon. I loved it! They'll all be home later today!

And here are a couple of pics from Hallowe'en. (Did you know, if you click on the pictures they will open up into a larger sized picture so that you can really see Emmett? If you didn't, try it!)