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Quick Trip to Boston, busy Sunday

posted Sep 16, 2013, 1:09 PM by FightingFor Mya

Well, it's been awhile since I've posted news for everyone. We have been quietly going through our 100 days of isolation, trying to stay healthy and infection free. As of right now, it seems like we are going to make it to our 100 day marker with no readmissions. We are very thankful for this.

Earlier in the week, Mya was complaining about some sensitivity around her G-tube site, so I brought her down to Dana Farber this past Thursday as a precautionary measure. They looked at her and said with no fever, she seems to be alright. However, as a precaution, they wanted to add another antibiotic to the one she is currently taking 3 days a week. So, she is taking this new one for the next 10 days, which should bring us almost to the 100 day marker. The G-tube site looks ok, but it has a little discharge, so it isn't awesome, but it isn't horrible either.

On the issue of eating, Dana Farber advised me that it could take a VERY long time before Mya's taste buds come back and her appetite comes back strong. (months to a few years...) Some patients remain on the thin side for the remainder of their lives. So, all we can do right now is continue to offer her choices of her favorite things and keep getting her to try foods. Her weight (as of Thursday) is at 14.9 kilos which is 32.78 lbs. Normal weight for a 4 year old is between 37 - 40 pounds. So she is down, but not horribly so.

On a brighter note, we went apple picking today with some friends of ours. Mya has so much fun! We didn't use her stroller for the first time since her illness and she was able to keep up with no problem. We took a tractor out to the orchard, then went within the trees to pick our bag of apples. Mya loved the fact that we could pick the fruit right off the tree. After we got our share, we went back and picked out our pumpkin, then took home a bag of fresh donuts for daddy! Mya ate some apple, and a few pieces of donut. Win for today!

Will try to post more frequently, its tough to squeeze it in. Trying to keep up wth both of the kids!