Nora’s appointment at Shands went very well on Tuesday. The GI doctor, Dr. Andres, was very pleased with her condition considering all that’s happened since stopping TPN….. teething, getting a stomach bug and starting to walk which is burning off a lot of calories. He thinks Nora has a good chance of gaining her weight back but if she looses any more weight than he would want to try another g-tube before going back on TPN. We were extremely happy to hear this as we were expecting that they would suggest TPN right away. Even though Nora has lost a good bit of her fat she hasn’t lost an unhealthy amount by any means and the fact that she’s still developing mentally at an impressive rate is a very good sign that she’s absorbing nutrients. Her labs are still looking good and aren’t showing any signs of deficiencies.
We started Nora on coconut oil today in hopes that it will help her gain weight. Coconut oil is a natural source of MCT oil (medium chain triglyceride) which is an easily digestible fat for people with malabsorption issues, it is the same type of fat that is in Elecare formula. She seemed to tolerate it well and her stools were thicker today than they have been in weeks. We are focusing on getting Nora on a more varied solid food diet and less Elecare. Her system seems to do better with new foods and variety. We’re taking Nora to a new nutritionist tomorrow to get yet one more opinion on what she should eat. With so many different doctors and specialists having such different suggestions on what foods to try with Nora it makes us realize the best thing we can do is gather as much information as we can and then try to make the best decision based on all the options.
Nora continues to amaze us everyday with her sweetness and growing personality. She loves to snuggle and show her affection. She is quite the silly goose and already has a big sense of humor. She brings so much happiness that it makes all the challenges worth while. Here is the silly sweetie playing with her tiara in her one red shoe.
Super Nora strikes again!!! Not only is she the smartest and cutest niece anyone could wish for, she’s also a little fashion diva!
It’s funny to see her pics with one red shoe because just this morning, Miss Marin wanted to wear one pink shoe and one blue shoe to preschool! When I told her she looked like a clown she replied ‘no mommy, clowns wear one blue shoe and one red shoe’…as if to say DUH!?! Who knows what kind of outfits these two little clowns will be able to come up with when they put their minds together…in just 5 days from now!!!!
I just can not believe this little miracle girl! I watch her videos and look at her pictures and am totally amazed. That sweet face and big smile, looks like she is always going to be your sunshine. I hope one day she will realize that her sucess is not only due to her incredible spirit but to having two of the best possible parents in the world.
Hi i am really amazed by Nora my son Josh has short bowel syndrome and only has 64cm of small intestine and 1/2 his colon. I still have Josh on enteral feeding overnight but would love to cut this out. I am having trouble getting him to gain any weight he has just turned 6 and weighs 16.4kg and any suggestions you may have i would love to hear. I have him on the specific carbohydrate diet because he has bacterial overgrowth and was getting D lactic acidosis which was not good due to carbohydrates. Would love to hear from you. Kim
HI ISAW YOUR CASE SHE IS SO ADORABLE IAM GLAD SHE IS HEALTHY !! WELL IALSO HAVE A SON WITH SHORT GUT HE IS A TWIN WITH A GIRL HE WAS IN TEXAS CHILDRENS HOSPITAL SCINCE NEW BORN HE WAS OUT WHEN HE WAS NEARLY 9 MONTHS KNOW HE IS DOING FINE AND REAL ACTIVE WE SHOULD GIVE THANKS TOO GOD AND TOO THEM FOR BEING STRONG AND HAGING IN THERE GOD BLESS YOU AND YOUR DOUGHTER LOTS OF LOVE DONT KNOW YOULL BUT I UNDERSTAND ALL YOULL WENT THROUGH ALL THE SURGERYS BYE TAKE CARE WE ARE FROM HOUSTON TX