Wednesday, March 6, 2013

Catch up

David and I have been fortunate enough to adopt 2 amazing children together. Gracelynn, who is now 4 and Simon, who is now 1. Both of these two children have medical issues that making caring for them a challenge.
When Gracelynn came to us at 5 months old, she had suffered severe head injuries which has left her with seizures and motor functioning issues. Her motor functioning has led to delays in both fine and gross motor skills. She frequents therapy for OT and PT, as well as her neurologist for neuro monitoring and her pediatrician for growth and development concerns.
Simon came to us at 3 months old as a failure to thrive baby weighing only 7 pounds and having many medical issues. He was born with cleft lip and pallet and a genetic disorder that he is writing the book for, since no one else has his genetic abnormalities. After months of fighting with him to eat orally and struggles to gain weight, he received a g-tube for feeding. At the same time, he had a Nissen (sp?) which wrapped his stomach around his esophagus, to keep him from throwing up his food, in hopes he would be able to gain weight, between the two procedures. Simon is also very delayed developmentally in every area (speech, fine motor, and gross motor). He receives OT, PT, speech, and eating therapy every week. He has had 9 surgeries so far and several hospitalizations for failure to thrive.
Currently, we are running to 5 therapies a week' between the two kids and receiving one therapy in-home. Simon is being monitored by 12 doctors who deal with his growth, asthma, genetics, cleft pallet, audiology, eyes, allergies, and other typical baby stuff. Gracie is seeing a therapist to deal with adoption and the loss of her birth family as well, right now. She was just tested for ADD and that was negative but that's when we were informed of her motor delays and neurological concerns.
We are blessed to have these gifts from God but overwhelmed at times with their needs. We need and desire the support of many. Prayer goes a long way but often physical help is also required. Our current struggles seem to be to find a person that can watch our children in our home, who can deal with their needs.

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