Friday, June 6, 2014

Four Months

It has been a little while since our last update, and we sincerely apologize to those who closely follow the life and times of Mighty Max. Time easily slips away from us and it seems that after two quick blinks a whole week passes. Even though things often feel stagnant on certain days, time is flying by so quickly that I hope it slows down before Max graduates high school. We have been trying to cherish every moment with the boy and appreciate the little things, such as his warm smile and afternoon naps. Oh man, do we love our naps. As long as we're able to piece together six hours of sleep in a 24-hour period that counts for something, right?

Speaking of time, Max turned four months old this week! It is hard to believe that it has already been four months since his birth, but at the same time, we can't remember life without Max. Things remain relatively similar as to our last update in terms of health, blood counts, medicines, and everything else related to his well being. For the first time since we brought Max home, we did not have a doctor's appointment for a solid week. It was surreal and it often felt like we were forgetting something important. This break was a beautiful glimpse into relative normalcy, which was a nice change of pace. We won't have another clinic appointment until next week, as well as a four-month check-up with our pediatrician, so we will have more information and hopefully some good news regarding blood counts by the end of next week. Not that we can really do anything in the nasty heat that is Phoenix, but we can't wait until we have the option to take Max to do things outside of the house that do not involve the hospital.

Time really is a funny thing. Not only did Max turn four months old, but this week also marks six months since Emily and I initially moved to Phoenix. It is hard to believe that it is well into June--well, hard to believe until you step outside--and that Max is doing so incredibly well. We never thought we would get to this point where our days are filled with smiles, playtime, diapers, crying that doesn't relate to pain, and family time. Our lives no longer revolve around the hospital every day and medications are simply a part of daily life. We don't have to wake Max up in the middle of the night to feed him and give him medications because we adapted his schedule to fit his needs. Outside of the couple two-hour blocks that Max has to be "NPO" (meaning Nil per os, or basically without oral feeds) because of his immunosuppressive medication, Max gets to set his own feeding schedule, and we love that (plus, it is obviously working with how much weight he has been packing on throughout previous weeks). Max has been tube-free for months and he is actually fitting into age-appropriate clothing (he still has a lot of room to grow in terms of girth, but his long torso has him fitting into clothes for infants of six months and up). Back in February, all of these milestones felt like impossible dreams, but here we are. It goes to show that despite how improbable and difficult a situation appears to be, there is always hope.

Even though we would all love a little more sleep and be able to do small things like see our friends, visit our hometown, or even go to the grocery store without worry of bringing a nasty bug home to Max, we couldn't be happier. It is easy to get bogged down in the daily grind and to let the exhaustion and isolation affect us more than it should, but when that baby looks at us with those eyes, nothing else matters.

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