I feel like I haven’t updated on Nora’s medical status in a while, but there really hasn’t been much new to report lately, which is a good thing. Overall she’s been doing really well but she hasn’t gained any weight in over a month. She’s been hanging right around the 22lb mark since mid January. Her trend had been a gain of at least 1/2lb per month. We are hoping that the stop in weight gain is due to the teething marathon that’s been going on in her mouth recently. For the longest time Nora only had six teeth in the front and then all of a sudden it seems that she’s getting a mouth full of teeth all coming in at once, molars and all.
With a mouth full of new choppers Nora can explore new foods which is really exciting. She munched on a fresh apple for the very first time last week and I think it was the most excited I have ever seen her eating something new. She’s had apples before but they had always been cooked. After her second bite she said “mmm, favorite!”
Even though Nora is doing good at the moment and staying healthy, her GI care has come to a slow aggravating process in the past few months. We are constantly researching new things on our own but it makes for a long drawn out battle to make headway when her GI team is dragging their feet on the most basic issues of Short Bowel Syndrome and TPN management. At this point we feel like we are pretty much alone in her SBS care with little guidance. Nora’s local pediatrician is wonderful and willing to work with us but he just does not have the expertise that is really needed to manage her TPN and dietary needs. The south is good for a lot of things….sunny beaches, country cooking, nice people….. but SBS specialists is not one of them. Her current GI’s are out of town but still in Florida, it’s looking like we will have to go out of state to find a new GI doctor that’s worth our while.
Nora has her monthly (this time semi-monthly) GI clinic appointment coming up this week. We have a long list of issues to be discussed with her doctor. We don’t want to burn any bridges with them because unfortunately until we find another team we need them to manage Nora’s TPN. And as unhappy as we are with her current care, we don’t want to switch to a new doctor just to switch without knowing for sure that we’re moving her to better care. So far after talking to other SBS parents, talking with other SBS doctors and nurses from around the country, along with research, it seems that the closest specialists with a good reputation are over 700 miles away in Ohio. Of course if Nora wasn’t doing so well or having an issue we would take her elsewhere immediately. But with her so stable at the moment we don’t want to drag her up north in the winter during flu season. So for now we’ll continue our search for a new doctor, try to get her current docs to get their act together for the next few months, and wait for springtime.
A side from all of the medical hub-bub, Nora is still our amazing little angel with a growing sense of independence and personality galore. She is still the sweetest thing but she definitely is developing sassy side and loves to practice making her “mean” faces in the mirror, which she is quite good at. 🙂 She is sweet, girly and loving but by no means wimpy in any sense of the word. She is tougher than nails and knows what she likes and doesn’t likes. She has started telling her own version of jokes and laughing at them. She is very shy though so only those close to her get to see the full Nora show. We’re just now starting to get a glimpse of the little person she is turning into and it’s such a gift to watch.
Oh sweet Nora, thank you for being the wonderful little being that you are and bringing us so much joy.
Ohio, eh … that’s interesting because there’s a little state called Kentucky just below it … a state where Nora just happens to have numerous family members … interesting!!?!! 🙂
I can relate to the slow aggravating process regarding SBS, and feeling alone. We have been there for many months now. Researching and trying things on our own, looking for a doctor that is more than just time, money and protocol. I think that we are members of a new era of infants who have and are still surviving SBS. We will probably help pave the ways for those who come after us and help push the doctors into a new way of thinking…Not all “standard treatments” for SBS are necessarily standard. Children with SBS cannot be put into a box and all wrapped the same way. Just from reading these many blogs of SBS children it is obvious that what works great for one may have no effect on another. Hopefully we can help get the word out…
You all have done a fabulous job with your little Nora and have been ever inspiring to me. Thank you.