Mahiya - 7 to 10 months

Our bi-weekly appointment became monthly. Blood is drawn at our every visit to get a panel of things tested. Few of many things are ammonia, prealbumin, Glutamine...etc..But Mahiya was a very hard poke and every time the Lab people will struggle to find a vein. Sometimes she needed an ultra sound to put in a line to draw blood off of it. Our doctor was asking us to consider to put in a port-a-cath. Which is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort than a more typical "needle stick". But we did not want to put her through another surgery. We were holding back.

Mahiya was sitting unsupported for few mins at 6 and a half to 7 months. There was not much improvement and I asked the early intervention team to evaluate her. They were actually happy with her sitting. And they said she is not very far from sitting longer without support.

Then soon she started rolling from one end of the room to the other end. At about 7 and a half months she was sitting very well. Then she was trying to get on her fours and rock, I was expecting her to crawl but did not happen soon....... I was really getting worried. It was at that time she learned to sit from laying down position. She was practicing that for couple of weeks. She will go from sitting to on her fours and then come back to sitting. When she was very close to 10 months, she started crawling. We were so excited. She would crawl from the living room to kitchen and explore the dish washer!!

At our may visit Mahiya was 10 Kgs and the doctor said she is a a good size now to think about liver transplant. It blew us away. She has been so stable this far and why would they ask us to list her. The doctor said that she has a very severe mutation, because there is a total stop in her urea cycle, she might get unstable at any time. We came home confused. But my husband Raj was open for talks with the transplant team. But I was very hesitant. He said I don't want anymore damage to her brain, if this is what needs to be done to protect her precious brain, we have to go ahead. I could not make up mind at all......... a month went by .......