Clinic Visit

Ellie had her periodic clinic visit today at Children’s. Abby took her while I went to New Hampshire for the third day of interminable fisheries management meetings.

In addition to charming everyone in the place with her smile, laugh and walking tricks as they did laps around the clinic, Ellie also had a bang up day with her tests which is great.

It was a meeting of the Omegaven families club today with old and new families there to see the docs. Abby met lots of families that were only names on the internet or email and even met a family that learned about Omegaven through this blog that we didn’t even know about. The community of families that has assembled around Boston is really something and growing by the day.

Please come to Boston for the Fish Oil....

Her weight is up. Up 320 grams from the last visit which is more than the 280 that the nutritionists and GI docs had hoped for. She still is in the 50^th and 75^th percentiles for weight and height respectively but ahead of where they want her to be. She now weighs 8.75 kilograms or 19.25 pounds. Quite a load that is giving Abby quite a set of arms.

As promised, we have reduced her TPN again. This time, in addition to reducing the overall volume, we are getting one whole night a week without TPN. She will still get fluids by IV on those nights since her colon isn’t fully attached to absorb fluids but no TPN.

The weaning continues and will continue as long as we can keep increasing her feeds. The new goal is to be at 500 ml per day when we go back in a month. Since we have already gone past 500, this shouldn’t be a problem. Shouldn’t but you never know.

We are still hesitant to increase too fast and Ellie will have an upper GI dye study done to check on the progress of her bowel and it hopefully shrinks.

We got word from the docs that we are doing well with foods and got the okay to add new foods to her diet. As long as it doesn’t have lactose in it, we are good to experiment which should be fun and let Ellie exercise the tooth that is trying to come in her top front.

She is happy and growing and absorbing lots of the food that passes through her ostomy.

Lots of folks are very happy with the way things are going.