18 Months | Daily/Weekly Thoughts
Daily/Weekly Thoughts

18 Months

With a shout of hooray, Emmett celebrated his one and a half year birthday on September 9 - the same day his Auntie Katie was celebrating her birthday. There was no joint party, as Aunt Katie is now living in Australia. To celebrate this milestone Josh's cousin, Jocelyn (Jocelyn Isaak Photography), captured a number of amazing photographs for us to share. Emmett was also visiting BC Children's Hospital this past week - don't worry, nothing was wrong. It was just time for a series of tests and observations as this was the finish of the first part of the Ionis Pharmaceutical drug study. He is now moving into the second stage. Plus he got to visit with his crew. Emmett loves his crew (his medical team) and will gladly skip his naps so that he can visit with his hospital people. Another benefit of this trip to Vancouver was that his wheelchair was dropped off at the shop (bypassing wait time for a home visit) and they got it sorted out and set up better than ever. Last night Emmett went for a stroll in his power chair - it took maybe 30 minutes to go 400 metres. Circles. Backwards. Sideways. Stop to watch the cars. Stop to watch the clouds. Stop to just stare! Go backwards because mom wants him to go forwards. It was a typical toddler stroll - except Emmett was in his newly functioning power chair. 

While in Vancouver Emmett got to stay in a fancy hotel and he got a huge bed all to himself. He quite loved the luxury and, if he could have, would have been on the phone to room service. Emmett can be quite demanding, as I'm sure you can imagine. He always wants to be active and doing things, so keeps mom and dad pretty busy. Of course, even when demanding he's a great baby and his volume is much lower than most fussy 18 month olds. But he's still demanding!

At the hospital he was poked and prodded while they were checking out all aspects of his physical ability and responses. The usual blood tests which you never get used to. A nerve study which really sounds uncomfortable. And observation ... lots of observation.

 

They liked what they saw. While Emmett is not necessarily doing things that are evident for the casual observer, he is absolutely showing giant steps to all of us. Especially his medical people. For instance, Emmett's legs three months ago were barely moving unless he had the benefit of being in water. Today, Emmett moves his legs and if they are placed in a bent knee position he can hold them there for seconds, correction here, minutes at a time. Two or three months ago, they would instantly fall flat to the table. Compared to one year ago and the differences are almost beyond belief. In fact, they are beyond belief. One year ago his movement was so drastically limited that many of us doubted we would see this birthday milestone!

Yet here we are. This is a miracle. This drug trial from Ionis is a scientific wonder and miracle. That Emmett is one of 120 kids worldwide in this study is a miracle. While we would love to see it available to all children with SMA, the process of approving a drug and making it available to the public is painfully slow. Beating the odds of colds, flu, avoiding pneumonia, and all of the other normal childhood ailments that would be life-threatening for a little one whose respiratory system has been significantly compromised. Yes, it is a miracle! Continue to pray for Emmett. Continue to pray that this drug is made available to all children who need it.

Alisha, Josh, and Emmett celebrate the miracle of life each and every day. Emmett puts his hands up in the air and cheers! He started doing this at 'Charlie and Florence's Run to End SMA' and it continues. He loves to cheer. He loves to wave to people. If you see him, please wave. In fact, if you see any toddler in a wheelchair, then wave and say hi! Wave long and hard. And be patient - as it will likely take Emmett quite a few moments to get his body to respond and wave back. But he will wave back! And you will make his day! Alisha and Josh's too! 

 

 

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God bless your life Emmett :) - Helene Halpin