Keeping Strangers At Bay

Month: April 2017

Keeping Strangers At Bay

I recently published an article for Today Parenting, and it ended up on the Today Show’s Facebook page! I got a ton of (mostly) constructive feedback from others, many of whom are experiencing the same phenomenon. Now, as is the nature of the beast that is the internet, I did get a few less-than-helpful comments. My favorites were these two gems: “Here’s an idea. Keep you [sic] “immune-compromised” baby in your house. Not all germs are transferred through touch. Some are airborne and none of them care who they land on.”  (I’m sorry, why the quotations around immune compromised? As if I’m

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Semper Paratus

The thing about having a transplant child is that you must always be ready. For anything. Without so much as a moment’s notice, you could get called from work to pick them up for any kind of illness (isn’t immune suppression a peach?). Because of this, I’ve found that it helps to be ready for any situation in which N would need medication. I pretty much always have Tylenol on me, in case he spikes a fever, and you’d be hard-pressed to catch me without his Tacrolimus. If we are going out anywhere and there is even a snowball’s chance in Hades

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Therapy Programs

Sometimes extended hospitalization can lead to a need for different kinds of therapy. Like I mentioned earlier, N needed occupational, speech, and physical therapy while he was recovering in the hospital. However, he still needed professional help even after we got home. When his neurologist told us he still needed therapy, I was hurt. No one wants to hear their child is developmentally delayed. I took it as a personal insult, even though N was very clearly “behind” from lying still in a bed for 11 weeks. At five months old, he could barely move his arms and legs to swat at

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Celebrate the Victories

I grew up in a household where every victory was celebrated, even if it was just with a giant bear hug. This made each of our accomplishments that much sweeter, because they were acknowledged. In the medical realm, we can’t always guarantee victory, no matter how much effort or hard work we put into maintaining our health. That can be a hard pill to swallow, especially for a child. Even when we do everything right, sometimes things just go wrong. That’s why I still celebrate all of our victories. When things do go right, it really is cause for joy! Last year,

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Social Situations

Social events and situations can be difficult to navigate when you suddenly become acutely aware of the billions of bacteria present on literally everything we touch. I considered myself cognizant of cleanliness and sanitization before N became immune suppressed. But since he’s become so vulnerable to infection and disease, my sensitivity to these things has increased about a hundred times over. Whenever we go out to eat, I always take a Lysol wipe to clean any surfaces I think N may be able to reach, to include the sides, and often the underneath of, the tables themselves. Typically I get

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Meeting Your Donor

We have not yet met our donor; in fact, we haven’t received any contact from them at all. I am hopeful that some day we will, but I have no idea what to do if and when that day comes. How do you act around them? Do you speak to them about their loss? Do you plan something fun, or should the meeting be somber? The answers to a lot of these questions are highly situational. How you behave and what you say will depend on how much time has passed, what their demeanor is, and how much contact you had prior

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