11.23.15

I feel like I'm due for an update but honestly I don't really have one. Which is a good and a bad thing because that means we are still at Primary's but on the other hand no news is good news right? Right now we are kind of at an awkward point. We are pretty much just waiting for Holden to stabilize and become stronger. As of right now the only thing that is stopping us from going home is he is not strong enough to be on the home vent and he has these "episodes."  Holden has been having these "episodes" for awhile and no one can really explain or pinpoint why they are happening. It's hard to explain what they are and what he does but mostly they aren't necessarily good. Me and Jess have an opinion on what we think it is but not sure everyone agrees with it. Today they think it's his medication causing it so they may be making some more adjustments to that to try and find his perfect dose. 

So what this means for us is we are just in another waiting game. Holden is almost to the point where he isn't really considered an intensive care patient anymore. Which is a good thing! But what does that mean for us? We will probably be going to another hospital called South Davis. It's more for kids who could go home but aren't strong or big enough yet to get there so this is where we will go as we work on getting him on the home vent and home!

But other then all that medical stuff Holden is still as cute as ever! He is such a good baby! I may be a little biased. His physical therapist wants him to start working on sitting up more to become stronger so she got him a bouncer the other day. Yesterday me and Jess decided we wanted to put him in it for the first time and see what he thought. When we turned it on at first he smiled then he made a funny face and wasn't really sure what to think. Eventually he just slept and all his numbers were the best they had been all day. 

He also has found his thumb!

With the Holidays coming up I would love nothing more then to have Holden home with us but I am thankful that I have him here. I am thankful for all the doctors and nurses that have taken such good care of him. I am thankful for modern medicine and technology and the many more holidays we will be able to have as a family because of it. I am thankful for all our friends and family that have supported us through all of this and have reached out to us. I cannot even put into words how much it means to us and how grateful we are for each and every one of you!