It has been so long since I have updated the blog. I am sorry. I have been trying to update the Facebook page with pictures and brief updates. This summer was full of change as we moved about 80 miles south of our old hometown. Being in a new home, school, church and town has brought many changes we are working to embrace. We have kept all Grace's specialists the same, but she does have a new PCP doctor. She has been good to work with us and we are getting to know each other better.
Grace's vision has continued to decrease and we are working to get her the state services she needs at school to be academically successful. Her GI diseases have been relatively stable the last six months and we are so very thankful for that. We have a day surgery scheduled the Wednesday before Thanksgiving to check her esophageal health. We continue to do Botox injections and baclofen daily to help with her cerebral palsy issues. She still sees a lot of doctors, but she is working so hard to make great strides and we are proud of her.
She continues to have increased pain which she describes as “thunder & lightening” in her neck, lower back and legs. In September we added gabapentin to her medicine routine and she has done a lot better, but evenings and nights are still very rough. We haven’t been able to identify specific pain triggers and that is why we went to Dr. Gandhi. Dr. Gandhi said that the reason we haven’t been able to pinpoint a trigger was because it is caused by nerve damage. She says this is a lifelong problem and we will have to work together to make sure she is getting good pain management. Grace can often appear uncoordinated and jerky in her reflexes. The doctor said this is due to uncontrolled nerve pain. She is changing up her medication dosage and schedule for the gabapentin.
Dr. Gandhi also talked to us a long time about Grace's physical activity level. We have always encouraged Grace to do as much as she could physically handle. Dr. Gandhi told us that was not okay. With Grace’s nerve damage she said she doesn’t need any more than 30 minutes of physical activity before having 15 minutes of rest time. She said that the physical impact on her body from high intensity activity causes more damage and increased pain. She said even if Grace does not want to stop the activity that she needs to be told it is time to sit down, rest and hydrate. She told us to encourage low impact activities for extracurricular physical activity (swimming, biking, golf, Pilates and yoga). These will increase her muscle flexibility while not taxing her nervous system.
She loves kindergarten and she loves her teacher. We are all working together to get her the accommodations she needs to be successful. She is excited to go to school in the morning and she has made several friends. Her teacher reports that on days when she is absent some older girls always stop by her room to check if she has heard from me and if she is sick. That is one of the perks of being in a very small school district.
Please continue to pray for our girl and for Gator Dog. Gator Dog continues to struggle with ear infections (honestly I think the original one has never cleared and no he has not been in the water). He is always working so hard for Grace, but we can tell when he just doesn't feel well. He goes back to the vet on Monday and this time Daddy is going to take him.
You are a blessing to our family. We covet your prayers, love and support.