Monday, May 6, 2013

I Knew When I Met You An Adventure Was Going To Happen...

By Jonah Rhodes-

What an adventure we have been on with Nash the last 13 months. To say it’s been breathtaking would be the understatement of the decade. I have a few more gray hairs on my head and in my beard because of it as well. But the past 4 months have made up for all of the hard months we experienced by leaps and bounds. Our sweet Nash is progressing faster than the doctors thought possible. His lungs have grown bigger than they thought, and he isn’t fazed by anything.

One thing we have learned with having a preemie is there are a lot of doctor’s visits and appointments. One of the main appointments we have is called Vent Clinic. At VC, Nash is seen by his team who accesses his progress and gives us a plan for weaning his ventilator and the different goals they want to achieve by the next appointment. The last 3 appointments have been wonderful. Nash has amazed his doctors at how well he is doing and handling all of the vent weans and other progressive steps they planned for him. The ultimate goal is to have him off the vent and the trach removed by the end of the summer. This could not come soon enough.

Now that the dreaded RSV season is over, we have been given the 'ok' to start taking Nash out and about with us when we want. This is something most parents take for granted. There are many things that most parents of healthy babies take for granted, but that’s for another time and place. So for a year, Nash has only left the house for doctor’s visits and that’s it. But about a month ago, Nash got to go on his first social visit to our local NICU reunion. I must say he was treated like VIP. Everyone was so amazed at how big he was and how well he was doing. I still get tears every time I see him doing ‘normal’ baby things. Nash has now been out for a total of 3 social visits, and he was a hit at everyone and handled it amazingly. I must admit this was a little scary for me. I don’t handle change well. I like being able to control the environment around Nash. So, Nash being in a public place scares me to death. I like being able to ask everyone coming around Nash if they have been sick or if they washed their hands. This is a new adventure that I am slowly becoming comfortable with.

I’ve learned that this adventure will have many chapters and as one chapter closes another one that's just as exciting starts. I must say I’m glad that the new adventures are exciting in a good way and not it in a ‘your son coded for 9 minutes, and he’s not responding to CPR’ way.

Nash will soon be off the vent and the adventure of him learning to walk and then run will start which will scare his Mom to death and thrill me to death. We will start the adventure of helping him learn to talk and express his feelings. Sometimes we will walk, sometimes we might even crawl, and then there will be times we will end up running on this adventure. But it’s not the speed that we travel this adventure that matters; it’s the fact that no matter how slowly we are making progress towards the goal, progress is being made. So no matter how long the adventures takes, I’m willing to walk, crawl and, yes, willing to run with Nash on this great adventure he will know as the Life of Nash.

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