What a year this will be!!

I can't get over how many things are going to be different this year!! Many of them are going to be so exciting, but challenging. First off Izzy started Kindergarten!! I can't believe how big she is now!! She is enjoying school so much, and is loving learning all the new things and interacting with new people. She is getting wiped out though, falling asleep by 8:30 most nights (tonight she was out by 7:30). We signed her up for another year of dance, this time graduating to the Combo class, where she will learn more technique for tap and ballet. She keeps asking me about gymnastics, so I told her we will enroll her in gymnastics during the summer so she can experience both! She was thrilled. I also am doing a very grown up thing and have signed up for...gulp...PTA!! Holy cow I can't believe I have a child old enough for me to do things for in PTA. Crazy.

Brooklynn's starts back at Early Childhood Center this year, hopefully beginning the transition from a special education classroom into the regular preschool classroom. This means she will get to interact with children who don't have as many developmental delays. I am really hoping she can start transitioning this year to spend half her time in the Title 1 Preschool, and maybe next year be completely in the preschool, with just having to have therapies every once in a while. The elementary school we go to does not have a special education program, only therapies, and therefore fi she can't transition to a regular class, she will need to go to a different school. We have 2 years for this to happen, so I am glad we are slowly transitioning her so it's not a shock.

I have also made a big step this year and am starting back at college. I am going to Benedictine University online to get my Masters of Science in Nursing for Nursing Executive Leadership. I hope to get into program development, management, something that I can help create and initiate policies and procedures that help with families and children who have special needs manage their medical care easier. I am hoping to get the tools I need to create a program that helps parents manage their child's care.

We have dealt with stomach issues with Izzy. She has complained her stomach hurts since May. So in July, we started her on lactose free milk. It seems to be helping. She seems to do okay with occasionally cheese, yogurts, ice cream, but it was the constant milk drinking. I don't know if this was the solution, or if we will face with stomach issues again, but for now we will stick with lactose free milk. Her doctor feels like she might have a lactose intolerance, so we will just keep monitoring her and if her stomach pains start back up, we are to go back.

I am really enjoying us not having doctors appointments or lab tests pending. We are having Brooklynn's PT look at her at school, as she is starting to rotate her ankles a little more inward, and her toes are pointing out a little more so I am wanting to see if her hot dog inserts are enough to help her muscle tone, or if she needs something that goes up to her ankles. Hopefully they will let us know if it is anything to be concerned about. So we might end up having a PT appointment but we will see. After that our next appointment that is planned will be a thyroid ultrasound in November, and than a cardiology appointment in April!! Yep that's right - in six months we only have 2 planned appointments! This is so amazing!

I have learned, though, based on other people who have experience with PTEN that you never can get too comfortable, and to appreciate all the time you have where doctors visits are not a part of your world. Things seem to just pop up out of nowhere, mostly causing pain, growths, etc that are of concern. I feel like I have to be hypervigilant, which stresses me out. I have to always be aware and do assessments, because I need to catch something at the first sign. If I allow myself to relax and not watch for things, I might not catch something and it might be too late. Today I read about a little girl who is 6 who has PTEN who just had to have her leg amputated because of a tumor that grew that cut off circulation to her body. They had to amputate her leg to save her life. While I know this will probably never happen to us, the fear that something similar might happen freaks me out. There seem to be lots of growths that pop up on kids that cause the to have to have surgery, that affects them through pain, or that cuts off blood supply. It's scary. It creates a sense of fear in me. It makes me hypervigilant. So to all those people who are tired of hearing me talk about it, I apologize. I started this blog post off with some really amazing things. And than it ends with my worries. But again, this is my blog, and it is where I can rant. I hate it, because people talk about their kids, or people they know, and the bad things that happen, and it seems many of those things are possibilities in our lives. I have a coworker who talked about her son's best friend from high school, who had an AVM on his brain, which caused him to get really sick and had to have brain surgery. This could happen to us. She also talked about her son who has GI issues, which increases his risk of GI cancer. This can happen to us. I have a former coworker who is dealing with breast cancer at a much too young of age, and my husband's cousin who has dealt with this battle as well, much too young. This can happen to us. I know this may never happen to us. But I know in the back of my mind that at any time, something COULD happen. Her chances are too high for something to NOT happen. I know something can happen to any of us, but I hate that there are SOOO many things that can happen to her. Just by having this mutation, her risk is too high for too many things. TO a mom, this sucks, it stresses me out. I thought I would be over this stress by now. But I am not. Just when I think I am better and I can move on, I hear another story that makes me think "what if". I hate that.

Brooklynn is such a fun loving kid. She is always happy. She is always cuddly with us. She is funny. She has no fear (sometimes to a fault). She loves to dance, she loves to sing. The thought of anything happening to take any of that away scares me. She is blessed with an amazing big sister. Izzy is amazing with her. She helps take care of her - I know Izzy will always be there, to help support her, help her through her troubles, love her, dote on her. The sisterly bond between these two is amazing. Our family is so amazing. I pray we have many, many, many years where we have no health scares. I am weak - I know I am weak. I cry at the drop of a hat. I am fearful and a worry wart. Those are my weaknesses. My kids are my strengths, and they are my biggest weakness. I don't know if I am strong enough fro anything to happen to them. I know these are all worries that I shouldn't think about. But I am still processing what our life will be. I am still adjusting to that fact that it is not how I had planned. Even though life is not how I planned, I am still extremely blessed. My kids are truly amazing!