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.
NORA HAD HER PORT REMOVED! 🙂
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.
What an absolutely wonderful post, and the pictures are so appropo!! Words really cannot describe how far little missy has come in this year alone, in addition to all the gigantic steps she had made in her first 4 years~ She is such a joy to all who meet her! She is one special little girl with her own fan club of medical teams, friends and family alike!
Nora’s story is an inspiration to anyone of any age. She is truly a miracle child and so blessed to have you two as her parents!
OMG!!!! That is huge! LieLie was really undersized at five and she was evaluated by a growth specialist who said to give her one more year before starting drugs. It was good advice because she had a major growth spurt between 5.5 and 6.5. She grew so much she had to get physical therapy because the bones grew faster than everything else could stretch and she couldn’t straighten her legs. Now she is the shortest kid in her class but doesn’t look noticeably small in a group.
GREAT news!!!! She is such a special little girl!! Give her a big hug for us! We love you all.
Such amazing news. I’m so happy for you guys
We LOVE ‘Super Nora’!!!
Such wonderful news! Love that amazing little girl so much!
Yay! I’m so happy for Nora 🙂
Nora is AWESOME!!!
Congratulations Nora!!! I just lucked up on Noras blog. Thank you Mom, for taking out the time to document her progress it gives me hope. I have an 8 month old daughter with SBS. I would love to ask you some questions.
That is the best news I’ve heard in forever! Congratulations!!! Please remind me how many centimeters of intestines her surgeon was able to save? I know it was very few and simply underscores what incredible obstacles you have overcome as a family (and Nora, as a miraculous being)!
oh, duh! it’s up at the title of the blog! How much has it grown to? AMAZING!
This is the best news ever! EVER! Love you guys. So proud of all of you! Hugs and love to Nora.
Hi! Its Davids mom from Central Florida. I lost your email address and wanted to ask you a couple questions. Look forward to hearing from you. And SO HAPPY for Nora and her latest accomplishment!
We adopted a little girl from Hungary last year who had part of her intestine removed as a newborn. We use Dr. Mestre in Birmingham. I was wondering who your doctor is.
Our daughter is very tiny for 7 but has not had any treatments since she was released from the hospital as a baby. So, that is great. The GI doctor also said that from the ultrasound he could not see that a significant part of her intestine was missing. There are no records of how much was removed.
Our pediatrician is thinking of sending us to an endocrinologist. She has come so far and I am trying not to have fear – but I also want her to GROW!! and be healthy!
I have searched for blogs about small bowel for a year, and just found yours today.
I would love to hear your thoughts or any helpful advice – medicines, diet and especially if your doctor is Mestre or another one in Bham.
Thanks so much.
Your daughter is beautiful.
Just wanted to let you know what an inspiration this blog has been to me for the past few month. My son was diagnosed with Short Gut in June 2012.He came home with a G-tube, Colostomy and a Brovic central line. He has been doing so good!!! Only one infection and has done nothing but make progress so there is HOPE!!! Colostomy will be reversed on Tuesday. One thing down two more things to go! Thanks for posting brought tears to my eyes when you posted her Port was removed!!! If you have any suggestions for what to do/expect when he has the colostomy reversed please email me. Thanks again!!!!
my email is shill6@emich.edu if anyone wants or has any input. 7 month old boy with SBS
Hi. I loved reading the story of your daughter Nora, I hope she flourishes more and more. My son has 55cc of small intestines due to entercolitis after a premature birth. He is ten months now and weighs 3kg only. I contacted dr. Puder. I am from Saudi Arabia is the treatment long? In my country we do not have Omegaven, therefore I do not know if they agree here to administer the medicine. Thank you and good luck.