Day +251

Yesterday we had what felt like a big appointment with the Continuing Care Clinic at the SCCA.  Georgia is doing well, she has put on weight (10.73kg) she's a bit taller and her skin has improved. Everyone is happy with the results the NG tube is having - the doctor however was hesitant to be too optimistic about how her body is tolerating the NG feeds because she is still on two steroids. Today, we started a week long taper of the lower gut steroid and will continue the feeds as we have been. Assuming her body continues to tolerate the feeds, we will start a taper of the upper gut steroid in two weeks when we are seen in clinic again.


The other big topic we discussed was her Sirolimus level, the goal is to keep her level between 5-10 - her past three levels have been 18, 13 and on Monday it was 16.2.  The hope is that her gut is healing, allowing her body to absorb more of the drug, we have decreased her dose for a third time  and will continue to check the level. The other possibility is that because she is still on the steroids they are being more absorbed which is giving a false sense of a healthy gut.

I truly feel that her gut is healing - since starting the NG feeds I have seen weight gain, speech development, coordination development, her hair has grown, her eyelashes have grown, she's taller - I have to believe that with the drug levels going up her body has the ability to absorb and utilize the nutrients - steroids or no steroids.

I'm frustrated that again I feel like we've gotten on a ride and now can't get off - the idea of tapering the NG feeds and getting rid of the tube was pushed significantly farther out than the 4-6 weeks we'd initially talked about.  I said, my goal is to have it out by her second birthday... the response, well, we can always hope for that.  I know that having the NG tube while we taper these steroids is a good idea, it will continue to nourish her body and give us insight to what she needs.. as with all of this however, it wasn't part of my plan.

My prayer is that this is the beginning of the end of steroids!