PT, OT, Neurologist....Oh my!

I would be lying if I didn't say I was scared to death for my child. I have been scared most days since she was born. I was scared when she was in the NICU, scared when they let me take her home, scared at every doctor appointment, and I am scared to death for tomorrow.

Tomorrow we will be taking Maelee to a pediatric neurologist. Maelee has high muscle tone (hypertonia) in her legs and left arm, a little on the right arm. She is stiff the majority of the time. Getting her in the car seat can be challenging, giving her a bath is sometimes a very hard task, and trying to change her on a very stiff day is almost impossible.

We noticed the stiffness around 5 1/2-6 months and brought it up at her well visit at the beginning of March. We were told to watch it and let them know if we had any more concerns, well over the month of March it became apparent that Maelee's muscles were stopping her from rolling, sitting, and even putting her feet down (she tries to stand directly on her toes or stands on the outsides of her feet). We brought Maelee back to the pediatricians office and they were now as concerned as we were- she was referred at the end of March to receive physical therapy, occupational therapy, and to see a pediatric neurologist.

Maelee has had 3 sessions of physical therapy and we are so thankful for this! The days she has therapy Maelee is able to move better and it is amazing to see her roll without a struggle. Her therapist is such a wonderful woman who has taken the time to get to know Maelee and who seems to really enjoy her time with her. Maelee is scheduled to have physical therapy once a week for a minimum of 6 months. We are on the list for occupational therapy and are hoping that will begin in the next few weeks.

Going to a neurologist was something we never considered Maelee would need this young. I figured when she was 13 and possibly got migraines like I did she would need to go, but at 7 months. The hardest part of being a Nurse is knowing what signs and symptoms go with certain disorders......its never a good thing when it comes to your child. I know the things hypertonia is associated with, I know the risk factors my child already has, and I know the outcomes can vary. Tomorrow we will be meeting her neurologist, he will probably just evaluate her, maybe schedule a MRI or imaging study, and then schedule a follow up. Many times it's a wait and see thing. They want to wait and see if this is related solely to prematurity or not- I don't want to wait and see anymore.

As her mother I felt guilty when Maelee was born early. I felt guilty when she was hooked up to all those machines, tubes, and wires. And now to think her prematurity has caused something else; something that may just go away or something she may live with forever.

I pray she learns to stand, I pray she learns to put those feet down, I pray she learns to walk and to run, I pray she is always happy no matter what, and most of all I pray that she is forever my Maelee! No matter the outcome I do not want a label or treatment of any kind to determine my little girl or to change who she is. I won't allow it. She is perfect in every way!