Yesterday was a day of sleep. As Emmett is intubated that means that he is also sedated and he was resting comfortably. This was a relief and meant that Alisha and Josh could get some much needed sleep also. I have never been involved in a Tsunami, but I wonder if the feelings are the same? You look around at the relative calm but see how the power of the ocean has changed everything. Likewise, yesterday's events were so powerful that everything has, once again, changed. With time, we hope that this will fade but right now it's still really present for all of us. There are many challenges that Emmett must face over the next few days - the most critical being that his lungs need to be cleared!
Alisha and Josh want you to know about one highlight from yesterday. It made us smile, perhaps even giggle. This is because it is a testament to the strength and will-power of this little boy. How fantastic the treatment Spinraza is! And how medical professionals become so invested in their patients that they are part of the family circle.
Yesterday morning Emmett's amazing neurologist - who has been with him, Alisha, and Josh from the day of Emmett's diagnosis with Spinal Muscular Atrophy, Type 1 - was in to check up on Emmett. She smiled when she saw Emmett's hands were tied down. And you know, we smile and laugh too. Not because Emmett is being restrained. We absolutely want him free of these bindings and allowed to fully express himself with movement. But we smile and laugh because, as his neurologist pointed out, Emmett HAD to be restrained to stop him from pulling and dislodging any of the tubes inserted into his body. SMA Type one patients do not need to be restrained because they don't have the strength to pull out any tubes or IV's. Indeed, before Emmett started on Spinraza (long before it even had a name), Emmett could barely move a helium balloon. Yet his neurologist observed him fighting his restraints. So we smile and laugh, because even though this little boy is fighting a very serious virus, he is still demonstrating strength that is truly amazing.
As Emmett is in this battle with the RSV virus we are hearing stories of other youngsters fighting RSV and facing monumental obstacles - and they are typical, ordinary kids with no underlying medical issues like Emmett has in SMA. This flu and cold and RSV season is a terrible one. Please remember to sanitize and avoid little ones - well, avoid everyone - if you have a cold or flu. We pray for these kids.
Thank you so much for your support and prayers. The support for Emmett is amazing. Many of you know we are a Christian family. You have seen our requests for prayer and support - and have responded with so much support. We have prayers, notes and comments from Christians, Muslims, Buddhists, Atheists, and Agnostics. Please continue. We thank God for all of you in helping to lift our spirits and to support Emmett.
Our journey continues - but there likely won't be multiple updates each day (as has happened the last couple of days).