First of all, we hope everyone had a very Merry Christmas and a Happy New Year. We had a very excited Christmas as we watched our two boys tear through their Christmas presents in a record 1 minute and 22 seconds! Then, for the rest of the day they played their little hearts out! Taylor was also as cute as a bug throwing us a smile here and there. All in all, it was a great day for the family.
In November, Taylor went back for a 4 day stay at Pitt Memorial Hospital. She was diagnosed with mild case of pneumonia. Thankfully we had her home by Thanksgiving! Unfortunately, she has continued to have upper respiratory congestion.
In early December, we took Taylor back to Greenville to see a Pulmonologist. He recommended that she take a Prevacaid for reflux. Although, Taylor had a Nissan when she had GTube surgery he still felt she might be having some acid reflux. We will follow up with them in February.
Taylor also visited her neurologist at Duke University Medical Center. They decided to put her on a new seizure medication called Sabril. This medication is relatively new in the United States, as it has only been approved for about a year. However, it has been approved in Europe and Canada for the past 20 years. The main side effect is loss of peripheral vision. She was required to see an Opthamologist to have a vision exam before starting Sabril She will take this medication for 3 months and then require another vision exam.
So, on December 21st, we made our way back to Duke to see an Ophthalmologist. The doctor performed her exam and kind of gave us some bad news. She felt that Taylor was completely blind. Even when she shined the brightest of all lights into Taylor’s eyes, she did not have a response. She told us what we had already heard concerning damage to the occipital lobes. She also said that if we were able to get a grasp on Taylor’s seizures that could help improve her chances to possibly see again. We are still hopeful that another part of Taylor’s brain will compensate for the damage to her occipital lobes.
Just recently, on New Years Day, Taylor started having some abnormal seizures. Her heart rate went up and she spiked a low grade fever. We took her to Pitt Memorial Hospital and they admitted her over night for observation. She didn’t have any more abnormal seizures while we were there, so they discharged the next day. This afternoon, the doctor from PCMH called and said Taylor has a Urinary Track Infection. The bacteria Ecoli grew on her urine culture, resulting in a UTI. She called in a prescription and she will start that tomorrow.
Exactly one year ago today, Taylor struggled to make it through the night. She held on with every ounce of her and showed tremendous strength. It is because of her will to live and God’s Grace that she has come so far. Today was a hard day, thinking back to what our family has endured over this past year. I still don’t know how we did it… However, there’s a verse in the Bible that comes to my mind, “I can do all things through Christ who strengthens me.” Philippians 4:13. I have said this verse in my head many times…
God Bless ~ Tammy
In November, Taylor went back for a 4 day stay at Pitt Memorial Hospital. She was diagnosed with mild case of pneumonia. Thankfully we had her home by Thanksgiving! Unfortunately, she has continued to have upper respiratory congestion.
In early December, we took Taylor back to Greenville to see a Pulmonologist. He recommended that she take a Prevacaid for reflux. Although, Taylor had a Nissan when she had GTube surgery he still felt she might be having some acid reflux. We will follow up with them in February.
Taylor also visited her neurologist at Duke University Medical Center. They decided to put her on a new seizure medication called Sabril. This medication is relatively new in the United States, as it has only been approved for about a year. However, it has been approved in Europe and Canada for the past 20 years. The main side effect is loss of peripheral vision. She was required to see an Opthamologist to have a vision exam before starting Sabril She will take this medication for 3 months and then require another vision exam.
So, on December 21st, we made our way back to Duke to see an Ophthalmologist. The doctor performed her exam and kind of gave us some bad news. She felt that Taylor was completely blind. Even when she shined the brightest of all lights into Taylor’s eyes, she did not have a response. She told us what we had already heard concerning damage to the occipital lobes. She also said that if we were able to get a grasp on Taylor’s seizures that could help improve her chances to possibly see again. We are still hopeful that another part of Taylor’s brain will compensate for the damage to her occipital lobes.
Just recently, on New Years Day, Taylor started having some abnormal seizures. Her heart rate went up and she spiked a low grade fever. We took her to Pitt Memorial Hospital and they admitted her over night for observation. She didn’t have any more abnormal seizures while we were there, so they discharged the next day. This afternoon, the doctor from PCMH called and said Taylor has a Urinary Track Infection. The bacteria Ecoli grew on her urine culture, resulting in a UTI. She called in a prescription and she will start that tomorrow.
Exactly one year ago today, Taylor struggled to make it through the night. She held on with every ounce of her and showed tremendous strength. It is because of her will to live and God’s Grace that she has come so far. Today was a hard day, thinking back to what our family has endured over this past year. I still don’t know how we did it… However, there’s a verse in the Bible that comes to my mind, “I can do all things through Christ who strengthens me.” Philippians 4:13. I have said this verse in my head many times…
God Bless ~ Tammy
4 comments:
I didn't realize until I read the blog that it had been a year since Taylor started this long journey. I will never forget that day nor will I ever forget the strength, love, and perserverance that your whole family has shown through all of this. We love you with all our hearts! You know that we pray for Taylor and your family every single day! We continue to expect God to continue to bless in ways that we may not always see, but know are there. Angela and Evans
Your family and Taylor are always in our thoughts and prayers. Taylor is a strong little girl and is showing how strong she is. She has a wonderful support system and a mommy and daddy who go to any distance for their daughter, she feels that love and that strength from you all. Remember if God brings you to it he will bring you thru it.
I look at your family in sheer awe... The love, the perserverance, and the faith you all have had and continue to have is truly an inspiration to us all, especially my family. Taylor has had a special effect on me, I cannot quite explain it. She has taught me so much. Your family is a true testimony to the wonderful workings of the good Lord. May he continue to walk with you on this journey, that he surely has his hand in. Love and praying for you all...
We continue to pray for Taylor in our daily devotions. God bless you all...Dave & Carol Hanneman
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