Day by Day

A mama blogs the journey to transplant and beyond...

Friday, July 18, 2008

A Little More "Normal"

We have had an awesome accomplishment in our home - Joaquin has been ng free for almost a month! One morning baby brother pulled it out. Apparently Sage had decided that it was time because ever since then we have not had to put it back in. I didn't think it would be happening so soon. At an appointment either in January or April, Dr. Alexander was saying that it would probably be another year before he could have it out.

So now he's officially drinking 1.3 liters of liquid a day. At first it was like pulling teeth to get him to drink it all but we've noticed that it's been getting easier and easier and we find ways to make it easier for him. Things like pouring smaller amounts into little cups or using straws. Juice boxes are our friend and we also have a little water bottle (called a Kleen Kanteen) that holds 12 ounces. It's rather easy to know how much he's drank every day.

We are now almost 2 years post transplant. Joaquin is able to go swimming now. We are obviously staying away from stagnant lakes and the like, but since he never really swam before this he's been taking his time warming up to it. A friend of ours gave us a free season pass to the local water park Wild Waters. Chris and I were talking about how Joaquin like the energy of the waters parks, like all the kids running around, but he's not so sure about the water. We're taking our time and easing him in. I'd like to do some swim lessons with him eventually too.

The beginning of July always means festival season for us. High Sierra Music Festival is always fourth of July weekend - which is also Chris's birthday (well, July 5th). So we all went. This was Sage's first festival but definetly not big brother's first. He's been to 3 High Sierra Festivals. He really enjoys himself. Loves playing in the dirt, camping and partying. This year he was way into the kid's zone area. Lots to do and lots of kids to play with. Thankfully this year it wasn't as hot as last year!

I always thought that having the ng tube out would be such a dramatic difference in our life. True, now I don't shield Joaquin's face anymore from nosey people, but I don't feel like it's as big of a deal as I thought it would be. Kind of like after we didn't have to do dialysis anymore. It's just another step in the direction of "normal" - whatever that means. I guess for us normal means feeling like our lives are more than a kidney transplant. When Joaquin would have to wear the ng tube it's all people would see. It's all people would ask about. It was this giant elephant in the room. Now we go places and we don't get stared at. We don't have people coming up to us and asking what's wrong with Joaquin (which I find incredibly rude). The only time we've talked with an outsider about what happened to Joaquin was at High Sierra when he was at the kids' zone and had his shirt off. A little boy noticed the scar on his chest and asked what had happened and we told him. This little kid thought Joaquin was some kind of super hero for having "his stomach cut open!" It was actually pretty amusing. And I didn't mind talking about it.

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