We spent most of April visiting doctors. Grace got her first big respiratory infection since her bout with pneumocystis pneumonia two winters ago. It was a nasty infection that just didn't want to let go, but after several rounds of antibiotics, steroids, bronchial dilators and some good ole' TLC she was able to beat it without a hospitalization!!! We have otherwise been able to stay healthy.
Grace had a check up with her GI doctor last week and he was so pleased with how she is doing with her weight and height. She is in the 10th percentile for weight and finally made the chart at the 3rd percentile for height! She is eating a variety of foods and getting most of her calories by mouth. Dr. P said that as long as we keep watch on what she eats and make sure she is getting enough calories by mouth we don't have to run the feeding pump! Hallelujah!!! That pump is my nemesis! I have felt that for the past 6 months it was counterproductive and I am so glad to be able to back off and let her actually get hungry and eat! This has been a long time coming (18 months) and we are SOOOOO happy to almost be done with the "tubie" as we call it at home. We are going to leave the MIC-KEY button in place for at least another 6 months, possibly up to a year, but having a deadline, even one far away, is wonderful in and of itself! The real miracle of this whole battle is that Grace eats! I have written about this issues before, but until you live them, it is really hard to explain what a huge deal her eating enough by mouth really is, and just how much work it took to get her there. Just to put in perspective, over the past 18 months Grace has gone from only eating 100-200 calories a day to 900-1200 a day. We owe a lot of credit to her speech therapist who worked with us in feeding clinics every week for several months and to the appetite stimulant Grace started taking.
Probably the biggest change in our lives right now is that Grace started a school program this summer. We originally thought that we would wait to start her in the Fall in a 3K program, but were worried about how she would handle the change. We decided to send her this summer a few days a week to a program with my nephew, Samuel, thinking that a familiar face would help with the transition. Grace did wonderfully and didn't even flinch when I went to say goodbye. She just turned right around and said, "Bye Mommy! See you later!" and jumped into the games. She has been going for 3 weeks now and loves it. She continues to be excited to go and play with her new friends. She is really blossoming and we are enjoying all the fun times having a 3 year old can bring.
I am glad to again have a place to update and look forward to more regular updates. Pictures to come!!
Helen
