The Story of My April Butterfly: Something's wrong...

Sunday, April 3, 2005

Something's wrong...

The nurses were concerned with Maggie's heartbeat.
They decided that she needed to be transported to
Loma Linda's Children's Hospital to have more tests run on her heart.

Maggie is inside this helicopter...
she's only 2 days old.

When we finally arrived at the
hospital this was very scary for us to see...
we didn't know if she would live or die-
all we were told is that they are concerned!

We were also concerned about how Maggie sounded in the hospital the first night she was born. If you listen very carefully to her you will hear her make a sort of raspy "honking" noise. This noise will prove to be what caused all of her trouble from this day on...

1 comment:

Cathy said...: My son too had something like that when he was born and he is & months old and they dont know what is going on he is going to loma linda as well so far hypotonia cerebal palsy so far not sure on the cp tough, she is beautiful by the way!; April 5, 2011 at 7:40 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.