It's been awhile...

It has been a while since I have posted on this blog, so I thought I would just do a little journaling, for my own sake. I never posted the girls' letters for the birthdays this year. That makes me feel terrible. Izzy turned 6 and Brooklynn turned 4 - I can't believe they have grown so fast! Izzy is truly amazing. She is bright, funny, caring, loving, athletic, and just plain awesome. She is 6 going on 16 some days, throwing her little attitude around when she doesn't get her way and this drives me CRAZY! However, if she is this way when she is 16, I think I can manage. She always wants to help others, and any time she sees someone sad, she wants to cheer them up with a hug or a story, or just by distracting them with playing. She tells me she loves me all the time and I love that she understand what that means. She tells me everything, and even when it is hard for her, she still knows she can come to me. I hope she always feels that way. I am amazed at how much she has learned, from addition and subtraction, to reading, to science, to the world. She is a sponge and just sucks in all the knowledge and really enjoys finding out new information.

Brooklynn is her amazing self as well. She is resilient, strong, loving, caring, funny (hilarious actually), energetic, interactive, and creative. She has made significant improvements this year by progressing with her interaction skills at school - she has "best friends", she plays, she tells stories, and I love hearing her little voice talk. After years of not being able to explain how she was feeling, or to tell us a story, this milestone truly makes my heart grow! She is a little more timid now than she used to be with things, but this is a good thing - she used to be fearless, now she is starting to understand what limits she should have. Yet she pushes past when she thinks she can't do it any more with encouragement. She is learning her letters, she is writing most of her name, she is starting to understand the concept of numbers. We have decreased the amount of follow up appointments (actually, most specialists have officially cleared us unless something pops up). She is able to finally be a girl who goes to the doctor when she is sick, not just to evaluate what could be. I love that. I can't wait to see how much further she is in another year from now! Even her teacher, when we sat down to go over her IEP, didn't feel like she was the same girl as the year before. This teacher didn't have her last year, and she didn't see her struggles. So it was nice to see that her IEP was no longer pertinent (mostly) and that she has made such significant strides in improvement. I love my girls, and am very grateful for all the things they teach me as the years go on.

We are trying to get into the Cleveland Clinic to meet with Dr. Charis Eng, who is the expert in PTEN. We are really hoping we can go this summer, meet with her and other specialists, and just get an idea as to what to expect. There is also a research study about developmental delays and milestones, so we will be enrolling her (hopefully) in this, and be receiving a full blown developmental evaluation from someone who understand PTEN and the struggles that others with this diagnosis face. The knowledge and expertise will be amazing to hear - not that the doctors here aren't knowledgeable, and some actually see other patients with PTEN. But this is a clinic actually devoted to PTEN! How exciting.

So we will see what this next year brings. I am anxious, excited, nervous, hopeful, and truly grateful for every day.