April 3, 2017

Sierra has been sick the last two weeks with ear infections and a UTI. On top of that, she had an allergic reaction to one of the antibiotics she was on. Today, however, she seems to be feeling much better and has returned back to school.

I also wanted to update everyone that we are still planning on using some of the funds for a handicapped van, but we are also hoping to take her to California sometime within the next year to the NAPA therapy center where she would do a 3 week intensive therapy session. This place is highly recommended by many families with kids that have CDG and really makes a big difference in these kids' lives. We will keep you updated. Thank you for your love and support.

September 5, 2016

Sierra is fighting a bug right now, but she still being her usual happy self. Her seizures have been slightly worse. We believe that her body is still getting use to the new device or it will need adjusted.

August 22, 2016

Sierra will be going to surgery tomorrow morning at Nationwide Children's Hospital to have her VNS battery replaced. Prayers are appreciated.

August 11, 2016

Today has been an emotional day for me. Right now I am worried about my sweet Angel. She has to wait for surgery till August 23rd to change the battery in her VNS. Earlier today she had a seizure where she nose dived into the pillow next to her and did not move. Of course I jumped up and ran to her. She seemed okay after a few seconds, but still worries me, especially since I have to work and rely on others to watch her. Plus, I have to go visit her new school tomorrow. Praying they will be a good fit for her. I did find out that her homeschool may have to provide a nurse or aide for her. That would definitely be helpful. Although things can feel overwhelming, I am thankful for a lot of things. Sierra is over being sick and slept longer last night.

August 11, 2016

Sierra slept more than two hours in a row! We got up at 4 am. She slept for 7 hours in a row!!! Hopefully this trend will continue. Now that I am up, I am going to make my to-do list for today. First thing, I am contacting one of her specialists and getting a lift for the house. Picking her up is getting more and more difficult. (She now weighs almost 65 lbs.). My back won't hold out much longer. Second, follow up on my bathroom remodel. We are just now starting the process to put in a walk in shower on the main level for Sierra. Bath time has been stressful and we are looking forward to the new bathroom.

August 9, 2016

Sierra is sick today and her autoimmune thing flared up as a result. Unfortunately,today was the day she was suppose to have surgery to have her VNS battery replaced. When this flares up her eyes swell shut and lip swells up. So, I had to cancel the surgery and now we are resting at home. Hopefully she can have surgery next week.

July 22, 2016

Sierra is a little more irritable than usual and is having more drop seizures. She is waiting to have surgery to replace her VNS battery. We believe this is why we are seeing more seizure activity. As a result, she is not sleeping good at night. Prayers for Sierra are appreciated.