Tuesday, April 21, 2009

Vision Services and Kyleigh Update

Today we met with a therapist from Governor Morehead. Governor Morehead is a community-based early intervention program that serves babies birth to age . The focus of intervention by Governor Morehead is to enhance environmental and educational experiences, provide adaptations, visual assessment and training, skill development, pre-Braille and Braille instruction (if needed) and orientation/mobility instruction. The program is state funded through the general assembly. Today the therapist went over paperwork and discussed the medical history of Kyleigh. Next Monday she will return to do an assessment of Kyleigh. Along with the information provided by doctors she will determine Kyleigh's eligibility for therapy services. 

In addition we found out today that Kyleigh will be tested for genetic disorders this week. Our plan is to take her in tomorrow to the lab for blood draw. The blood will be sent off and results should follow in 3 to 4 weeks. The geneticist is testing for a specific syndrome and chromosomal deletion disorder. We don't know anything specific about either the syndrome or chromosomal deletion disorder at this time. We will wait for the results and pray. 

Kyleigh's reflux is still bothering her. It is severe enough that the nutritionist feels it has become a deterring factor for Kyleigh's lack of eating recently. Babies tend to associate pain with events. If her pain happens every time after she eats then her brain is telling her, "don't eat". Both myself and the nutritionist have put a call into the doctor's office today to get them to address our concern. Until then we have added vanilla flavoring to the unflavored milk in hopes to entice her to want to eat. Of course, it could be her ears hurting that is keeping her from eating as well but her ear re-check isn't until next week. 

So for now- keep praying for good eating, weight gain, and patience while we wait for blood test results. 

2 comments:

Sissy said...

Crystal, I continue to pray for this little one. Wow. I know you must be overwhelmed with each thing that comes. Poor Kyleigh.

Jennifer Stone said...

Will keep precious Kyleigh in my prayers tonight...

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