Maggie is now losing weight. I could not contain my disbelief at the ENT's office the other day when we weighed her. I thought something was wrong with the scale. Surely not, I said. We've been on this strict schedule and she hasn't been vomiting but once a day, and the dietitian assured us she is getting the proper amount of calories every day. It just doesn't make sense. Is there another issue going on that we haven't discovered?
I look back at pictures from the wonderful month of April when the e-stim was working and her legs actually looked a little chubby. How could I notice that her face is now almost gaunt and her legs are so thin? I want to scream for somebody to help her. I left several messages for the doctor, nurse and dietitian three days ago - do they not see the urgency in this situation? She is tired more than usual and really fussy. She grabs her stomach in pain - but she cannot tell us what is wrong.
Lord, help us. Show me what to do. Should I start making her own formula? The doctor and dietitian say no, but I've heard so many stories of success with vomiting and failure to thrive babies from moms who have done it. At one point do I stop listening to the doctors and try something on my own?
Is it the right thing to go to another city? Is it going to be a big waste of time and money and only leave us more frustrated -as happens to many times - because "renowned" doctors don't want to commit to these strange cases where success might not be in the future. I am sending her records off to the two of the best GI clinics in the country. Lord, if it is your will, lead us to the right doctor who can help Maggie.
I just cannot believe we are back to the this issue, when we should be dealing with her neck issue? But I know that really she make progress anywhere else until she starts gaining weight and her strength back. But, really, what is the deal her neck? Is it ever going to get better?? Every time I look at her I just feel anger and frustration. Not at her, but at myself.
And hearing loss? I just could not believe it when the audiologist told me that the other day at her hearing test. Please, Lord, let it be from fluid in her ears so hopefully it will get better. But how come no one told me she was at risk for hearing loss being on oxygen and antibiotics so long?
Lord, help this child. Heal her. Bless her. Show us your plan for her life. Give me joy like Maggie has joy- and rid me of all bitterness - as I continue on this journey.