Having a child with PVL is a waiting game we were told. No one knows the effect the cysts in her brain will have on her development, motor skills or cognitive skills. I remember in the beginning charting milestones… or should I say not charting milestones. Milestones were so important to me. I would spend time every week going over what she was doing and what she was not doing, I was driving my self crazy and it really was not helping. Now, a year later, I pretty much stopped charting since there was really not much to mark down. “Pretty much” meaning that I look at it every 3 months 😉 Mattie is at a 6 month old level in most skills except gross motor where she is more like a 4 month old. Since Mattie was born 9 weeks premature, she is still very small for her age. Mattie weighs 16 pounds and just recently made it on the growth chart for weight (7% Woohoo). Even though Mattie was diagnosed with cerebral palsy in December, we are still playing the waiting game. We are not really sure what Mattie’s full potential will be.
I will start with what she can do. She lights up a room with her smile. She thinks funny faces are really funny. She laughs all the time and is a very happy little girl. With a lot of therapies this past year, she has been able to keep her hands unclenched. This has led to her being able to grab toys and put them in her mouth. Since starting an alternative physical therapy, ABM, she has learned to roll over!! She can roll to her right, almost across the entire room, but still can’t roll left. In the past 3 months she has become verbal and has also learned to eat pureed baby food.
Our current goals for Mattie are to sit, use hand gestures to tell us what she wants, drink from a sippy cup, eat table food without choking, say mama and dada, and reach up to be to held. We have many longer terms goals such as standing and walking, but are focused on some “smaller” milestones right now.
We were told that she may walk one day… or not. We were told her speech may come late… if it does at all. We only know a few pieces of this puzzle, so as we continue to wait for the rest to unravel, we are doing everything in our power to make sure she will reach her full potential.
Mattie does weekly occupational therapy, physical therapy and craniosacral therapy. Monthly, we drive to Gainesville (a 2 hour drive) for 4-6 sessions of ABM (Anat Baniel Method), an alternative therapy that uses simple, gentle movements to help the brain’s capacity to heal itself by shifting the focus to connecting rather than fixing (more about this method at a later date). We also have a speech therapist that works on her feeding and verbalization. Mattie is in “Baby Boot Camp” every day. Our boot camp consists of stretching exercises, squatting-sitting-rolling exercises, swinging for vestibular motion integration, sign language, and infant massage. Week to week things are added, backed off of, or stressed a little more. Our boot camp is primarily done by our fantastic nanny, Sarah. Mattie has really come a long way. We owe a lot to Sarah and all the members of Team Mattie for all the efforts they have put into helping our little girl reach her full potential.
I started a blog when I was on hospital bed rest. You can read my CarePage Blog, “Steady As We Go”, Room #311, Mattie’s Birth, the 9 Weeks that Followed and Mattie’s First Year. I recapped my “Week 17 Nightmare” when my water broke less than ½ way through my pregnancy.
I know many people have followed our story and have heard through word of mouth how things are going. I know I tend to answer “Mattie is doing good” A LOT. Sometimes I just don’t feel like getting into the details of what we go through when it comes to Mattie. I am restarting this blog in celebration of Mattie’s 1st birthday to share our experiences, look for support, and just let you know what really goes on behind the scenes.
Here is something I wrote in my journal when she was 4 months old:
This girl is special, I can see it. She is going to do amazing things. She is going to show the world that she was meant to be here!
Mattie – There is not a day that goes by that I don’t smile thinking about you. You light up my life. I think you are the strongest person I have ever met. You have defied great odds and I am lucky to say that I am your mom. You have made me realize what is important in life. You are my miracle and my inspiration.