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Sponsor a Child in Need: Tima J.
FUND IT FORWARD received this letter from Tima's mom:
Tima was born prematurely by emergency C-section due to severe Hydrocephalus. She has developmental, physical and feeding challenges as well as other health issues including sensory difficulties. She has a VP shunt, a Medtronic Strata Valve (her second one). She also has a partial absence of the septum pellucidum, Esotropia (crossed eyes), aductual stenosis, developmental delays, aspirates (inhales) liquids (now has a G-Tube for feeding), GERD, central and obstructive sleep apnea and possible seizures. She also has unique chromosomes (Structural chromosome rearrangement complex ring 6 in mosaic pattern).
Alltogether Tima has had 8 surgeries. These include her first shunt placement when she was two days old, a shunt revision at two months, two EVD's (External Ventricular Drains), a new shunt placement, a Peg-Tube placement, a G-Tube placement and a cranial vault reconstruction. Tima has therapy three times a week and physical therapy bi weekly. She has a lot of doctors and specialists that she sees. When Tima was younger she had simple reflux precautions, sitting her upright for 30 minutes or more after feedings and using a wedge and Danny Sling. Now that she is older she doesn't fit in either of the slings I had for her. I sit up and hold her while she sleeps or I prop her up with two Boppy pillows and surround her with other pillows on her mat. However she is still not angled enough and it's a very unsafe way to sleep. She refluxes all the time now and has been having obstructive apnea very frequently.
Earlier this year in March Tima stopped breathing 3 times back to back. I took her in and she had a 4 day hospital stay. We found out that she has both types of sleep apnea. She is now on monitors while she sleeps and has breathing medications, a suction machine, and reflux medication. Even with the reflux and nebulizer medications, Tima continues to have obstructive apnea.
The Comfy Lift bed was recommended for Tima, however our insurance will not cover the bed. I also tried to have a case study done so that she could keep the bed afterward but I have not been able to find a home care provider willing to do the study. The Comfy Lift bed would help Tima to have a safe reflux free nights sleep.
Thank you so much for reading Tima's Story. Thank you so much for your help.
Sincerely,
Siearra J., May 2013
Would you like to help Tima?
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FUND IT FORWARD, P.O. Box 457, Wexford, PA 15090. Please include the child's name on your check.