Birthday Party!

Wow! We get to celebrate a very deserving and happy 1st birthday. Long ago over a year ago we were told that she might not make it this far, but she has and she is doing better than anyone can believe. She is the joy of our lives and the happiness that never goes away. She is doing fabulous. She doesn’t have to be on the vent except at night. She is stating perfectly and she is learning to move. We don’t have another doctor’s appointment until the beginning of August so we are home free for a couple of months. We are celebrating her first birthday next weekend, and her reaffirmation of her baptism. We can’t thank all of […]


Sorry everyone for not posting more often.  It has been quite a hectic past couple of months.  Namine has been home since March and doing great.  We spent two days in the hospital for heart monitoring and they called it equipmentitis.  She has been stating in the low 90’s to even 100% O2 stats at the cardiac visits.  We are slowly weening her off of the vent and she is up to about 12 hours on the trac collar during the day and the vent only at night.  She is up to about 2 hours on the HME which is awesome.  She hasn’t gained any weight and she has grown an inch and a half.  The biggest news that we […]