Yesterday we spent the morning at Primary Children's getting more labs. We checked her IGG levels, Calcium, and did a full panel on the liver. There are a few questions I had on some things that are requiring a liver check. We should find out today if we need IVIG this week or not. They want to push her to a 12 week schedule instead of every 8 weeks. We found out that she is still on IVIG due to Rituxan - we thought it was the Hi CY. We are hopeful she does not have to do this for many more years. She's tired of going.
We are also getting set up to meet with Endo on a growth hormone stimulation test. They want to start her on growth hormone shots. She will also be meeting with Pulmonary soon to schedule a sleep study that is long overdue.
As of now Haven is doing great. She is finishing up 3rd grade and going to 4th next year. She has definitely overcome many obstacles and we're so proud of her. She continues monitoring her own foods and watching her sugar intake. She keeps to under 20 carbs a day and carries a carb calculator with her everywhere ---- which can drive you crazy! :) So far she is down about 25 pounds and doing amazing.
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