Happy March everybody...February landed Taylor at Duke Medical Hospital for a week in order to try and figure out what to do about her seizures. The neurologist ended up taking Taylor off two seizure medications (sabril and topomax). They are trying her on a new seizure medication called zonegran. Since her stay at the hospital, Taylor's seizures have decreased slightly. She still has between 6 to 8 per day, but that's an improvement! Taylor has also been much more alert and verbal over the last month. I really feel taking her off the sabril medication has made a huge difference in her physical appearance!
Friday(March 3rd) we travel to Greenville to see a Pulmonologist. Taylor struggles so much with off and on wheezing and upper airway congestion. One minute she sounds terrible and the next she sounds great. She still receives oxygen throughout the night and as needed when napping.
On March 17th, we will travel back to Duke for a Neuro check. They would like to start Taylor on a new kenogentic diet. It was not available when we were there in February. They said it would become available at Duke within the next 6-10 weeks. This is what the Epilepsy foundation website says about the diet...
The ketogenic diet, which is very high in fats and low in carbohydrates, was first developed almost 80 years ago. It makes the body burn fat for energy instead of glucose. When carefully monitored by a medical team familiar with its use, the diet helps two out of three children who are tried on it and may prevent seizures completely in one out of three. It is a strict diet, and takes a strong commitment from the whole family. The ketogenic diet is not a do-it-yourself diet. It is a serious form of treatment that, like other therapies for epilepsy, has some side effects that have to be watched for. More research is being done to learn about the underlying reasons for the diet's positive effect. http://www.epilepsyfoundation.org/answerplace/Medical/treatment/diet/
Sorry, I haven't done a better job updating Taylor's blog.....I feel so overwhelmed at times. I feel like I could climb in a cave and sleep for days! Life is just really busy with 3 kids begging for attention as soon as Jeff and I get home from work. I will try and do better.....
(Donna B. Thank you for keeping up with our daughter's progress. You and your family were so kind to us when we met you in Durham. We will never forget you!)
Every night we say this prayer for our little Taylor. Tanner and Tate know it by heart and pray it with us...
Heavenly Father, through your son Jesus Christ, All things are Possible. In the name of Jesus, Heal her Heart, Mend her Mind, and Restore Her Body. In Jesus' Name...Amen.
Love,
Tammy
God Bless
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