Friday, May 25, 2012

Our new found routine

There wasn't a single day that Preston was hospitalized that we didn't spend 12 or more hours a day at his bedside. Our typical routine started at 7am we would break for lunch and then come back and stay until 10-11ish nightly. So as you can see we pretty much took up residency at the bedside. We would take shifts and one of us would spend a few hours back at the Ronald McDonald house to work and catch up on phone calls. We had a full office setup back at "camp" so that we could try to work and have some sense of normality to our lives. Thank goodness we are both in real estate and have so much flexibility in our careers. We couldn't have done it though without the HUGE support and understanding of Ken and Melina, Stephanie (I still owe you some cocktails and a lot of them!!!), Max, Jen, and Joseph. If I didn't feel it before, I certainly do now feel like you all are a true extension of my family!

Tyler and I have always been a little on the workaholic side. We knew once Preston arrived it would be different, but not to this extent! We thought that we would be able to have him at work a day or two a week while he was tiny and throw him on the Moby wrap and wear him while at the office....I guess you just can make plans too far in advanced!

Boy has life changed! We're now not only working full time in real estate and Property Management, one of us is always at home with Preston due to his immunity so we're stay at home mom/dad trading off work days, and on top of that we feel like we're full time care providers having to do more than a "normal parent" would do. I know there are two of us but feeling like we now have three full time positions is really tricky.  Thank goodness for everyone that has helped us tremendously with the cooking, cleaning, housework and for our business too.

Managing daily medicines in itself is quite a job with 16 different doses throughout the day of oral medications, shots a few days a week, IV infusions 3 days a week. The phone calls ........holy smokes...... 4 different pharmacies for medications and supplies, nurse case managers for insurance companies, the home health nursing agency, and several doctors to report to throughout the week. If I didn't feel like I was going crazy before, I sure do now!

I just thought I would kind of share a little bit of our new found home/work life so that everyone knows what our new routine entails.  I promise this blog will soon be less about us and more about Preston.  I just thought this would help to answer everyone's question of "How are you doing?" aside from my normal response of "things are going okay".

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