My son Tim asked me if I would write an entry for the blog. We know that many people check the blog frequently, looking for news about Taylor and her progress. It is understandable that Tammy and Jeff are very busy. Both are back at work, and when they are home, their time is consumed by Taylor's needs, as well as the needs of their very active boys. Dick and I have just returned from four days in North Carolina, so I am happy to share an update on our Taylor.
We were delighted and thankful to learn that the initial report from an evaluator for The Governor Morehead School for the Blind recommended that Taylor should receive services from a teacher of the visually impaired one time per month for one hour visits in her home. While Taylor is considered to be legally blind, (diagnosed as Cortical Visual Impairment) it was noted that when Taylor is awake and alert, her eyes move together almost as if she is attempting to focus. She also will turn her head in the direction of voices as if she is attempting to see who is talking. She seems to particularly respond to voices that are familiar to her.
According to the evaluator, "vision is best improved when it is enhanced and stimulated." In other words, a child with a visual impairment must be taught to "use" whatever vision she might have. It is hoped that Taylor can become more actively engaged in her daily routines. The vision therapist will work on this, as well as give Tammy and Jeff and her nurses things to work on with Taylor. While Taylor has not had a recent vision test through Duke for some time, it would be such a blessing if she were able to see more than was originally predicted. The healing process is ongoing, and God's time is not our time. If there is one thing we have learned through this past year, it is that patience is a necessity. We pray for Taylor every night, and we believe that many people are still praying for Taylor, too. The power of prayer can be an awesome thing.
We got to see the physical therapist work with Taylor on Friday morning before we left with the boys for a pumpkin patch and Chuckie Cheese. Taylor was responding well. They are concerned about her tendency to always want to turn her head to the left. The therapist was working to relax her muscles and get her to turn her head voluntarily to the right. Tammy and Jeff are working on this, too.
Another concern is the number of seizures that Taylor has each day. Despite the increase in her seizure medicine, she seems to still have multiple seizures. They only last seconds, but it is very apparant when one occurs. She will jerk involuntarily and her eyes will roll back. When it is over she always seems to smile. Next month, she will be evaluated again at Duke Medical Center. Perhaps they will have some answers. Again, we pray for her healing to continue.
On a positive note, the hyperbaric oxygen chamber has arrived! It is a huge apparatus that takes up one whole wall of Taylor's room. It is another blessing that the many contributions given for Taylor's benefit allowed Jeff and Tammy to purchase this. It allows Taylor to continue the treatment that was recommended without driving four hours round trip to the nearest facility, something that would not be possible with school underway. They are using the oxygen chamber five times a week for one hour sessions each time. A parent has to be with Taylor in the chamber. It is somewhat claustrophobic, and so far, Tammy is more comfortable with it than Jeff. Someone on the outside has to turn it off and unzip it when the session is finished. They usually wait until the boys are in bed at night to use the chamber. Taylor is usually asleep at this time, so she doesn't seem bothered by it. It will be some time before they can evaluate the effect this might have on Taylor's progress.
Finally, I wanted to share how heartwarming it is to see the love that surrounds little Taylor. She has two wonderful nurses who are part of her daily care throughout the work week. We only got to meet one of her nurses, but we know through Tammy and Jeff that both nurses are outstanding in their care and concern for Taylor. The boys give Taylor hugs and kisses a lot, and both Jeff and Tammy hold her and interact with her frequently, especially on the weekends. If love has any healing power at all, Taylor surely can feel its warmth.
Thank you all again for your continued prayers...May God keep you in HIS care, and may HE continue to watch over Taylor and her family.
Donna Whitehead (Jeff's mom)
God Bless
~
We were delighted and thankful to learn that the initial report from an evaluator for The Governor Morehead School for the Blind recommended that Taylor should receive services from a teacher of the visually impaired one time per month for one hour visits in her home. While Taylor is considered to be legally blind, (diagnosed as Cortical Visual Impairment) it was noted that when Taylor is awake and alert, her eyes move together almost as if she is attempting to focus. She also will turn her head in the direction of voices as if she is attempting to see who is talking. She seems to particularly respond to voices that are familiar to her.
According to the evaluator, "vision is best improved when it is enhanced and stimulated." In other words, a child with a visual impairment must be taught to "use" whatever vision she might have. It is hoped that Taylor can become more actively engaged in her daily routines. The vision therapist will work on this, as well as give Tammy and Jeff and her nurses things to work on with Taylor. While Taylor has not had a recent vision test through Duke for some time, it would be such a blessing if she were able to see more than was originally predicted. The healing process is ongoing, and God's time is not our time. If there is one thing we have learned through this past year, it is that patience is a necessity. We pray for Taylor every night, and we believe that many people are still praying for Taylor, too. The power of prayer can be an awesome thing.
We got to see the physical therapist work with Taylor on Friday morning before we left with the boys for a pumpkin patch and Chuckie Cheese. Taylor was responding well. They are concerned about her tendency to always want to turn her head to the left. The therapist was working to relax her muscles and get her to turn her head voluntarily to the right. Tammy and Jeff are working on this, too.
Another concern is the number of seizures that Taylor has each day. Despite the increase in her seizure medicine, she seems to still have multiple seizures. They only last seconds, but it is very apparant when one occurs. She will jerk involuntarily and her eyes will roll back. When it is over she always seems to smile. Next month, she will be evaluated again at Duke Medical Center. Perhaps they will have some answers. Again, we pray for her healing to continue.
On a positive note, the hyperbaric oxygen chamber has arrived! It is a huge apparatus that takes up one whole wall of Taylor's room. It is another blessing that the many contributions given for Taylor's benefit allowed Jeff and Tammy to purchase this. It allows Taylor to continue the treatment that was recommended without driving four hours round trip to the nearest facility, something that would not be possible with school underway. They are using the oxygen chamber five times a week for one hour sessions each time. A parent has to be with Taylor in the chamber. It is somewhat claustrophobic, and so far, Tammy is more comfortable with it than Jeff. Someone on the outside has to turn it off and unzip it when the session is finished. They usually wait until the boys are in bed at night to use the chamber. Taylor is usually asleep at this time, so she doesn't seem bothered by it. It will be some time before they can evaluate the effect this might have on Taylor's progress.
Finally, I wanted to share how heartwarming it is to see the love that surrounds little Taylor. She has two wonderful nurses who are part of her daily care throughout the work week. We only got to meet one of her nurses, but we know through Tammy and Jeff that both nurses are outstanding in their care and concern for Taylor. The boys give Taylor hugs and kisses a lot, and both Jeff and Tammy hold her and interact with her frequently, especially on the weekends. If love has any healing power at all, Taylor surely can feel its warmth.
Thank you all again for your continued prayers...May God keep you in HIS care, and may HE continue to watch over Taylor and her family.
Donna Whitehead (Jeff's mom)
God Bless
~
