Make A Child Smile

Robin's Story
written by mom Heather

Robin was our first child, born April 2nd, 1999. She had lots of medical problems from the time she was born... she was not able to keep anything down. It took 6 months and lots of tests and ER trips until we learned that there was a muscle spasming in her stomach that was making her so sick.
Once we could feed Robin baby food things got much better...she was growing and doing all the 'fun' things toddlers do.

Robin had always walked on her toes and always had tremors, we asked our doctor at the time about it and they said there was nothing to worry about. The tremors and toe walking did cause Robin to have some delays... she started receiving OT at 4 to help with her fine motor skills and PT at 5 to help her learn to walk with 'flat feet'.

Robin's brother was diagnosed with several neurological disorders (Chiari I Malformation, Hydrocephalus, Tethered Spinal Cord, Syringomyelia...) in August of 2003. He required several surgeries and at one point his neurosurgeon commented on Robin's tremors and asked if she had had an MRI.

Robin had an MRI in January of 2004 and was diagnosed with Spina Bifida Occulta (tethered spinal cord)... the tethered spinal cord explained why Robin had toe walked and why she was having so many issues with potty training (she has a neurogenic bowel and bladder). She was also diagnosed with PVL, a condition where a tiny spot of brain tissue has died (usually from lack of oxygen during birth). The PVL could help explain her tremors and overall delays.

Robin had surgery in March of 2004 to detether her spinal cord, she was in the hospital for only a few days and did so well. She recovered and healed very nicely.

Later that year Robin started premature puberty, in order to see why puberty had started so young (she was 5 at this time) they did an MRI. They found a small mass in her pituitary gland. Robin started hormone therapy, a hormone shot every 3 months to stop puberty and hopefully shrink the mass. It has been successful at stopping the puberty but it has not shrunk the mass in her pituitary gland. Robin has to go in about every 6 months to have her eyes checked to make sure that the mass isn't growing.

Despite all the medical issues with Robin she also deals with the stress of having a sick little brother. She takes care of him after surgeries and helps him so much. Robin was diagnosed with an anxiety disorder shortly after her brother got sick... through therapy and medication it is well controlled now.

At this point Robin is fairly stable medically... she continues with her hormone therapy (and will until she is about 10) and takes several medications to help with her anxiety, her bladder issues, her bowel issues, her asthma and allergies and to help her sleep.

Robin wears braces on her legs to keep her from toe walking, so far this is working well! If at some time it stops working she may need botox or a calf lengthening surgery.

Robin is our pride and joy! She is such a hard worker at school and at home... she is above her grade level in reading! You can often find her cuddled up somewhere with a good book (she is into chapter books now)!

Robin doesn't like to see anyone hurt in any way...she wants to help everyone and to make a difference in peoples lives...we truly believe that she already has!