Wednesday, July 29, 2009

Still Here

I don't know why I have such a hard time updating Noah's Adventure lately.

Maybe it's because not having anything to update makes me feel like we are just a typical, non-special health care needs family.

Maybe it's because Noah is doing so well that his updates just get mushed in with regular family updates over at my other blog.

Or maybe I have just been so distracted with other things that I'm a huge slacker with blogging.

Yeah, that sounds more likely.

Noah is doing really well though. So well, in fact, that while counting our blessings and remembering our miracles, I still seem to always be "looking over my shoulder" for the sky to be falling again.

Noah may be immune-suppressed and we try to keep him away from germs and stay disinfected but I do a better job at exposing him than I do at living in a bubble. We are home bodies at that helps a lot. We don't really have many "hang out in real life" friends so that helps too. But we still go to amusement parks, aquariums, the zoo, and even the mecca of germies; Chuck E Cheese's.

I know it's naughty and I don't want it to seem like we are ungrateful for the wonderful gift Noah was given. I have many thoughts on the subject. Deep, thought-provoking, self-reflection sort of thoughts. I haven't decided what my story on that is yet though.

I just know that we have been so insanely blessed. I can't even begin to imagine what my life would be like without him.

Some recent Noah News:

  • He celebrated his 2nd birthday and his 2nd transplant anniversary.
  • Shortly after the Dr started to suspect he might have more than just a speech delay (apraxia) he said his first full word Bah-Gul (aka bottle). He still says just the first sound for most things but he's figuring it out. He did say "I tackle" when he jumped on my back yesterday. And he also said "Not yet" when I asked him if it was time to leave the park.
  • We went swimming at my grandparents house on the 4th of July. As we were leaving we caught him laying on his tummy in the garage LICKING the floor. Thank goodness my grandpa's garage is cleaner than my kitchen. Unfortunately he still got a bit of a rash on his upper lip. But I suspect it's related to the rash behind his ears. The staph and strep came back. So while the antibiotic (oral and topical) did help a bit, it hasn't cleared up completely and we will need to take a trip to the Dr's soon.
  • He has his next heart cath in Denver this August. I'm not nearly as freaked out about this time around. All I needed was one cath without an awful outcome. When I got that last year it really helped calm my fears. Of course, it's still worrisome. I am afraid that's when the sky might fall again but I am visualizing a completely negative (Zero Rejection) result. Plus, I want to make sure the stiffness is getting better.
I promise I will do a better job at updating. Sharing Noah's story and helping to raise awareness for Organ Donation and for Congenital Heart Defects is still such a huge priority for me. I just needed to get to a place in my life where I can do it and I think I am almost there.

Thank you for sticking around. I do read many of your blogs (if I don't, then you need to leave me a comment so I know to come visit). I may not comment a whole lot, but that is on the needs improvement list also. So hopefully you will see me around here and over there.

Much Love,

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