1 Week Under Our Belts!

Maddie has been home for a week now and continues to improve in all aspects. Her current weight as of yesterday is 7 lbs 11 1/2 ozs. She was 7lbs 6 ozs when she left Children's last week. According to her pediatrician she should be gaining about 1/2 oz a day so she is doing well. She does still reflux quite a bit which had us concerned about her weight so we were relieved to find that she was gaining weight. She is not bottle feeding quite as well as we had hoped she would be at this point, so for most of her feeds she receives a majority of it through the feed tube. It's taken us most of the week to get the whole feed tube down as far as knowing how high to have the syringe so that the formula trickles down at just the right speed so as not to fill her little belly to fast causing her to send it all back at us. (Just for a visual you can see her feed tube in the picture above. It's a big syringe (just under the yellow animal)connected to a long tube (running by the green pacifiers)that attaches to another tube (at her feet by the pink and white blanket) which in turn is connected to a button right on her belly where the food enters her stomach.)

Maddie's new challenges now will be pushing her limits as far as her range of motion goes with all of her joints through physical therapy. She came home with splints for her feet, legs and hands as well as a brace for her hips. Yesterday she had her first physical and occupational therapy follow-up since leaving the hospital and it went extremely well. Dominique and Nancy are Maddie's therapists in those respective areas and have been working with her since day 1 and for that we are extremely lucky. They, much like the nurses, have treated her as if she were their own and we are very optimistic that Maddie will continue to progress as she has thus far based on past progress and the fact that Nancy and Dominique are her therapists. Thank you ladies.

As for everyday life here in Orchard Park, things are about as hectic as we had imagined however aside from Maddie's extremely structured feeding schedule we are thoroughly enjoying flying by the seat of our pants.