Archive for September, 2012

Nora’s Time

September 30th, 2012

We have news so big it’s hard to even believe….are you ready? Nora had her port removed! It’s so great I’ll say it again.

Her port was removed a little over three weeks ago. The port removal was a simple outpatient surgery with a small incision and a few dissolvable stitches under the skin. She was a bit sore for the first couple of days but she was back to running full force in no time. There is very little that slows her down these days. Nora has come a long way from the days of when she used to have to take frequent rests and struggled to keep up with her friends energy levels. Those days really weren’t that long ago in the grand scheme of things and she is certainly making up for lost time, now we struggle to keep up with her at times!

From the day of Nora’s birth she has had some sort of catheter running in her veins, she blew through numerous PICC lines until she got her first port at 2 months old. All of which brought a very serious risk of deadly blood infections but yet were also necessary to deliver the life supporting TPN that she needed until last December. So as you can see this news is very exciting for more than one reason. The fact that her body is supporting itself without TPN and/or hydration fluids is amazing on top of no longer having the foreign object in her body that posed an infection risk is very wonderful to say the least. Although I must admit that as odd as it may sound, at first it was a little scary letting go of our “security blanket”.

Up until a couple of months ago Nora still needed to get monthly blood draws for labs which we would pull from her port. But now she is so stable she will only be getting labs drawn every six months so there was absolutely no reason to keep her port in any longer. Even though her growth has been very slow since she came off of TPN her GI doctors feel very strongly that there is no need for her to go back on TPN. At this point we are actually taking her to an endocrinologist to asses her slow growth.

Somehow, someway Nora knew long before any of us did that she would be getting her port removed when she was 5 years old. Early last year way before any talk of getting her off TPN came up, let alone absolutely no talk of her port being removed had even been mentioned yet, completely out of the blue one day she looked at Montana, pointed to her port and said “when I’m 5, I won’t need this anymore”.  Her comment stuck with me because first of all she had never said anything about her port being removed before and secondly, Nora has known things before with no logical explanation of how she would know them. I’m not saying she’s psychic or anything like that, but there certainly have been quite a few very big coincidences, or she has a very heightened sense of intuition.  Whichever way you look at it, it’s pretty amazing. But she herself is pretty darn amazing. :)

Nora has become quite the busy bee. We officially started homeschooling her last month. When most people hear of kids being home schooled the first thing that usually comes to mind is the lack of socialization compared to traditional schooled kids. That was the first thing that came to my mind and we did not want that to be an issue for Nora and made sure it certainly is not. We are involved in the local homeschool group that meets weekly on top of having a lot of extracurricular activities and opportunities for the kids to get together in a fun and creative environment. Nora loved gymnastics so much in the summer session that she’s now taking classes twice a week for the fall session. She’s also in a weekly music and drama class and she goes to a class for homeschooled children at the Tallahassee Museum every other week. She loves meeting so many new kids and is really enjoying learning in so many different environments.

I’ll wrap this up by mentioning a book that my cousin Emily gave Nora many years ago called Ruby In Her Own Time. It’s always been one of my favorite special books and although the story is simple, it’s very reflective of Nora’s life. Ruby is a little duckling that did things in her own time instead of at the typical pace of the other ducklings. But when she finally spread her wings she flew farther and wider than all of the other ducklings. Now it is Nora’s time to sore and she is flying far and wide above the clouds, just like Ruby.


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