The Story of My April Butterfly: Cutest Little Pirate

Friday, August 25, 2006

Cutest Little Pirate

The next adventure in Maggie's life. Her left eye wanders when she is tired or looking at something far away. So, for three months we have to patch every other eye for the last two hours of the day to give her eyes extra rest. Hopefully this will give her more strength in her eyes to control their direction.She is still the cutest little pirate we've ever seen!

UPDATE: The patch didn't really work for Maggie, as she was ALWAYS pulling it off (looking back, we should have been told to start the patch earlier- at an age when she wouldn't be as aware or able to pull it off).

We worked really hard to help her keep it on- distract her, sit with her for those few hours, but ultimately her eye just needed time to strengthen. Realizing what Hypotonia is- a weakend muscle system in the body- many of Maggie's muscles need help getting strong. Her eye stopped wandering soon after we stopped using the patch (about a month) so that might have been enough time for her to strengthen her eye.

1 comment:

Laura Ellen said...: That is one cute pirate! I have never seen this blog before Heidi. I love it. Scott's mom still prays for Maggie everyday. I'll link her to this!; October 8, 2007 at 4:56 PM

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Maggie spent the first three weeks of her life in the NICU... first to investigate an irregular heartbeat- cleared with a diagnosis of a wandering pace-maker and sent home at 5 days old. She stopped breathing 2 hours after we had been home... we gave her rescue breaths, called 9-1-1 and Maggie was transfered by ambulance to the NICU, again. At 20 days old Maggie was sent home with a diagnosis of mild Laryngomalasia (floppy windpipe) and an apnea monitor to wear for 6 months. At one year of age Maggie was diagnosed as Hypotonic and spent the next 6 months of her life being seen by a Neurologist, a Genetic Counselor and Occupational Therapists. She began early intervention for her developmental delays. At age 3 she began attending a Special Education Preschool. She attended a typical Kindergarten class with RSP help for fine motor delays. Beginning in 1st grade she began her journey through Special Education for intensive help with many developmental and cognitive delays. Beginning in 3rd Grade I decided to Homeschool Maggie through a local charter school. She still received Special Ed. services, but I was in charge of her daily curriculum. We began her 5th grade year by enrolling her back in public school. This year will either prove to be a great stepping stone to the rest of her education, or it will be a year to revisit other options. This is our journey living with a child who is Hypotonic.