It's the small stuff

We are learning to appreciate the small things around here!  This past week with our therapists has been an eye opener for me.  I was in my own little bubble of frustration over Madi and her progress.  It seems abysmally slow to me.  However, both therapists remarked on how well she is doing and how far she has come.  This made me think back to when we started therapy and how little she could do to entertain herself or move around. 

When we started therapy, her hands were often fisted and she only played with and grabbed a toy after it was put in her hands.  She now reaches for things that catch her interest.  She will grasp them and put them in her mouth.  The biggest change I have noticed is that I rarely see her hands fisted! 

At six months she was just starting to roll, but often couldn’t get back onto her back because she had trouble positioning her hands to help her.  Now she is all over the floor.  She can even play with toys while on her belly.  It’s amazing to see how well she can move her arms now.  She doesn’t purposefully roll to get something she wants, but it is only a matter of time before she puts 2 and 2 together.

The other big thing I have noticed is that with the ability and desire to reach and grasp, she can now entertain herself for short periods!  How amazing it is to have five minutes to run and switch the laundry or put it away without listening to her scream at the top of her lungs.

Just this week she finally was able to get her feet to her mouth.  It was an exciting moment to see her do this.  This is such a big thing for her because it involves so much.  She has to be completely relaxed in her back, have strength in her abdomen to pull her legs up, and be relaxed in her legs so that she can bend her knees grab her foot with her hands and put her toes in her mouth.  It’s not an easy task, but she is getting the idea.

There are so many other little things that she is able to do, I could probably write a small book.  I just need to focus on what she can do and quit focusing on what she can’t.  The little things lead to the big things!  

Sharing with our girls

A few days after our visit with the neurologist we decided that we needed to tell the girls about Madi.  We were concerned about when to tell them and then how much information we should give them.  With school starting soon it seemed like a good time to let them in, at least a little, on what we know so far.

It seemed best to just give the girls a little bit of information and then let them ask questions.  We wanted them to understand that Madi will progress and reach milestones at her own pace and that they shouldn't compare her to other babies her age.

Telling Alex separately from the younger girls seemed like the best approach.  We knew she would ask some hard questions and have a better understanding of how this can affect Madi.  And man did she have some hard questions.  She wanted to know if Madi would have to be in a wheelchair.  We told her we didn't know.  She wanted to know if Madi would be able to learn like she and her sisters do.  We told her we didn't know that as well, but she was meeting those benchmarks at the moment.  She also asked if she would be able to speak.  AGAIN we had to tell her we didn't know.  It breaks your heart to see your eleven year old cry and realize how much this is to take in at her age. 

We waited a couple days and then told the middle three girls while we were eating dinner.  They didn't really have any questions.  I don't know exactly how much they understand, but they seemed to take it in stride.

We chose not to tell them about her cerebellum, we didn't see how it would benefit them to know this.  All they really need to understand at this stage is that it will take Madi longer to learn some things and other things she may not be able to do.

I feel a little bit of relief now that they know.  When people come up and ask me questions or want to know how things are I don't freak out or worry about the girls overhearing.

Right now, we are just taking things one day at a time.  We continue to do physical and occupational therapy once a week.  I am so relieved that we will soon be getting into a "normal" routine, whatever that looks like!   It has become apparent that any new information regarding Madi is going to be slow. We won't know anything new until after the holidays when the test results are in. 

Below is a video of Madi rolling.  It's amazing to look at her.  This video was taken a month ago.  She is now a rolling machine.  She continues to push herself to be able to do things.  Contrary to what our research says she is making strides in her motor and cognitive development.