Hannah is a vibrant little girl with a delightful smile, and zest for life. She has Periventricular Leukomalacia (PVL), translated she has mild to moderate Spastic Quadraplegia Cerebral Palsy (CP) She recently underwent the surgical procedure, Selective Dorsal Rhizotomy, to reduce spasticity,and increase her range of motion. The goal was to make some of the tasks we take for granted posible for her, and give her a sense of independance, and success. I am pleased to report that the Rhizotomy has made a noticeable difference already and updates are posted in her Rhizotomy Journal. I do my best to keep it updated with all the exciting changes.
Hannah started life prematurely. She was diagnosed through an ultra sound at bedside soon after her birth with Periventricular Lekomalacia (PVL). I've visited other sights with very good explanations of PVL and what causes it, I, however remain respectively ignorant as to the pinpoint cause. I speculate that through my pregnancy, that the cause was because I had a great leakage of amnionic fluid which resulted in a diminished oxygen supply for Hannah. I didn't learn of her PVL until she was six months old, but by then I had notice how different physically she was from other infants. Hannah was extremely stiff, she detested movement of any kind, she didn't like to sleep on her belly, she was difficult to diaper and dress, and she had a persistant colic that couldn't be calmed. Hannah was six months old and being a persistant "complainer" her neurologist told me she has PVL. I was absolutely crushed I had no idea what this meant, and the doctor didn't explain to me what this would mean to Hannah. PVL is lifelong, and starting at a very early age she would need continuous Physical, Occupational and quite possibly Speech Therapies throughout her life. He did not tell me that her PVL would result in Cerebral Palsy (CP), that there is no "cure" and she may possibly never walk. I did not leave his office feeling confident at all about what to expect and how to help my girl. The first two years were pretty tough, she was so stiff and moody, and well let's be honest I wasn't sure either one of us would get through it. Before this I thought "tone" was a good thing.
Don't let the pictures fool you, therapy hasn't always been a favorite past time of hers, and often I found myself giving up on her altogether because of my own fatigue and vague understanding of Cerebral Palsy. In fact, I had to carry a camera around often with me because she could scream an entire session away, but put that camera in front of her and say cheese, she dried those tears and posed as if the day had been going splendid. Maybe she just needed to get it out of her system because today Physical Therapy is so important to her that it's the opposite reaction as in the past when a session is cancelled.
Hannah has always enjoyed much of what any other child would, and of course she could protest loudly along side any other child when it came to bed, or bath time. She was two and a half when she began talking and four years old when she came to crawling on her hands and knees, before that she got around "comando" or by rolling.
When she was five we went to the Shriners and they put her in casts to loosen her heal cords. I was told then that if she didn't begin to walk within that year she would never walk. Unfortunately when she came out of her casts, and into AFO's her ankles hurt too badly to bear weight and I didn't (and still don't) know what I should've done to maintain that level of looseness without causing more pain. In the end that was not beneficial to Hannah, the year came and went, and unless she was aided by her walker, or someone she had trust in she didn't begin to wallk.
Her differences and challenges are obvious, but she doesn't let that stop her. She fully believes she can accomplish anything if she puts hard work and belief in herself behind it. I'm truly blessed to be this little girls mother, and I know in my heart whatever she does or doesn't do I will always be her biggest fan.
Some other resources to check out are:
Adaptivemall -adaptive equipment for children with disabilities
UCP Research -Current research being done in the treatment of CP
IDEA -Individuals with Disabilities Education Act
