Follow - Up Doctor Visit

 Dr. Rodgers let us know the results of the path report. Like the nurse said last week, the growths or masses are not encapsulated which is not a good thing. We will watch and wait for regrowth but he recommends that we leave all of the masses alone and remove them if they interfere wth anything.

This is so frustrating, I really want her to be as normal as possible but she's different and people "will" judge her, especially kids. Yes, I realize that we all question "normal" and I get so irritated when people say "well what's normal". I want to say... Look at your kid and look at mine! I want her to wear skirts, shorts, sandals, tanks, etc... But she can't or people stare. I am getting better, I no longer cover legs with a blanket but she does wear socks and she probably always will!

Anyway, Dr. Rodgers wants to see her in January to look at the lipmatous growth and check for regrowth. I will be scheduling her foot surgery in November with the group in Boston, and the local physical therapy team wants to start seeing her in January after she has healed. I am also working with the state "community services" worker to get Em into the system. Hopefully we can keep the Medicaid!
We see Dr Hart in August to check for her weight gain to see if she is gaining enough muscle in her upper body. In September, we have our routine kidney ultrasound and also a 12 month development appointment.

Michael is doing terrific, nothing new to report. This week, Dad and Terry are here, so we'll be hanging out with them. I'm excited that they can finally meet Em and M :)
With Love,
Adrienne