A Late Announcement

The wait is over. Aidyn is off TPN and Omegaven! We had our CAIR clinic appointment on February 10th and we were given the go ahead to stop all IV fluids. I was shocked! I didn’t realize it would be cold turkey. IV Hydration is only as needed. Aidyn has been doing so well and it’s been almost three weeks. Last weekend he needed fluids, but that’s for another post (explained below). His weight probably hasn’t changed much since his weigh-in in Boston. It was 10.42 kg, or 22.9 lbs. We actually had to wait an extra month to find out Aidyn would be off TPN. The original Boston appointment was set for January 13th, but all flights were cancelled due to the Nor’easter. We scheduled for two weeks later, but after a lot of thought, we cancelled so we wouldn’t end up being stuck in Boston. Finally, another two weeks later, the appointment was set. Boy was it cold! Aidyn got to see the snow. He loves the outdoors, even when it’s full of snow and cold. If you can believe it, the next week, while we were back home and attending the appointment with the local GI doctor, Boston was hit again with more snow.

Dr. Ursea expressed her happiness on how far Aidyn has come during our local appointment. She reminded me that Aidyn’s weight gain would be slow for now. The nutritionist said he only has to make up an extra 200 calories per day with the loss of TPN. Sounds easy, but when you have a toddler whose eating all day anyway, with a threshold for volume, it can be tricky. I have realized this new, wonderful change, this new leaf means another adventure. The learning and researching continues. This turn in the journey with Aidyn has made us happy and excited, yet it is a little scary. We will see how he does over the next month and if all goes well, Aidyn’s line will be pulled by Dr. Puder during our April visit! He’ll be two years old by then and ready for a new chapter.

Valentine's Day - The last day of TPN.