Sunday evening update

I was thinking today about how long we've had sickness in our home! And it's literally been for almost 2 whole months now. There have been periods (like maybe 4 or 5 days) in between an illness. But, for the most part, there has been illness in our home for the last 2 months! Of course, it's always harder when Ryan is sick and this time it hit him pretty hard. Last night, we were really concerned when he started to get the chills out of nowhere and suddenly didn't want to eat his dinner. This is usually a sign that he is heading in the wrong direction and possibly even hospitalization. But, so far, God has been protecting him! We are so thankful that we can treat him at home. No matter how exhausting it can be with his routine sometimes even going on throughout the night, it is MUCH better than being in the hospital!! For those reading that don't know the routine. It usually consists of something like this. Ryan will get a breathing treatment through his nebulizer with medicine that he breathes in to help loosen things up. This usually takes about 15 minutes. After that, we cough him using his cough machine. After the cough session, we suction out his mouth. We then set him up for his percussion treatment AKA "The Vest". It's an actual vest that Ryan wears that shakes his body all over shaking loose any secretions that might be stuck to his lungs. After about 10 to 15 minutes of the shaking, we then place him on the couch for the postural drainage stage. This usually takes another 15 minutes or so. Throughout the entire treatment session, he usually requests the cough assist multiple times as we are bringing up junk out of his lungs. But, after everything is done, he usually improves quite a bit for a while until we start the whole thing over again usually about 3 to 4 hours later.

I know that any SMA family reading this will appreciate this. But, yesterday, Steve rigged up a way for Ryan to be able to suction himself! It's amazing really and will make such a huge difference for Ryan. Basically, having the suction machine for Ryan would be like having the ability to blow your nose or clear your throat. Since Ryan cannot do these things, the suction machine does them for him. However, when he is sick, he needs the suction machine sometimes every couple of minutes. (again, imagine yourself with a cold and how often you might blow your nose or clear your throat). So, Steve re-wired it so that it now has an easy push button for Ryan to push and suction himself! It's still a work in progress and we are working on positioning and finding a good spot to place the suction wand when not in use. But, just to have Ryan be able to do this is AMAZING and ,of course, helps us out too!

Thank you again for your prayers for Ryan. The prayers have been working and he is hanging in there. I know he is NOT out of the woods yet. But, he did have a better day today.

Attached are pictures of Steve re-wiring the suction machine with Joshua watching carefully. And also, one of Jorie and Joshua from the other day.