Latest on Adi

This month has been filled with appointments. After meeting with the surgeon in April, we have been meeting with everyone to see if we can find out any additional information before making the big decision to operate. On the 19th we met with Dr. Stotts at Shriner’s to discuss the next step to helping her walk and deal with her contractures. He believes with continual stretching and standing she will be able to work through her contractures just as she did with her hands. On the 20th we met with the perinatologist to make sure everything was looking good with this next baby. Everything looks great!!!
The 22nd we met with Dr. Donaldson, an endocrinologist, to see if he could shed any light on why Adi isn’t growing. He ordered some tests to check her hormone/ insulin levels and thyroid. Tuesday, the 26th, we met with Dr. Bleyl, her geneticist, who told us her chromosome test came back normal and if she continues to not grow we would continue to do a few other tests to check her ability to store fat and a study to check her bone age which is a way of describing the degree of maturation of a child's bones. We will follow up with him in 6 months.
Today, the 28th, we met with her GI doc, Dr. O’Gorman and Sharleen, a dietician, to discuss what they think. We found out from the endocrinologist office Adi has a thyroid issue and will need to start on 25 mg of levoxyl. The other test isn’t back yet so we will have to wait for those results. They suggested we place Adi back on a NG tube to supplement her calorie intake. Scott and I don’t feel that’s the answer—she is eating well and knowing the NG didn’t help her gain weight the last time we are not quick to return to torturing Adi that way. After voicing my opinion and feeling a little outnumbered things quickly changed. As a family we have praying the specialist working with us will have answers to help us come to the best decision for the next step we should take. I know Adi needs to have better nutrition and have been thinking about how to help her like drinking anything but water. I have been wracking my brain and looking for anything that would be a good substitution for milk (which she needs for calcium and calories) and have just not found anything. When I was talking to Sharleen about her needs without remembering those concerns, she brought up several suggestions. During the trip home, a feeling came over me- I was not alone in this process. I was tired and couldn’t remember as much as I normally could but Heavenly Father knew what I needed and he inspired Sharleen to answer my questions without me asking. How grateful I am to know when we ask for help and invite Him to help us He will not leave us alone.