Yesterday was the MITO night at PNC Park and what a amazing turn out. We had 180 people come out to support Aubrey and we raised a grand total of $530!! It was such a beautiful day for a ball game and I am so glad everyone has such a great time.
Aubrey had a doctors appt. Friday with my favorite doctor ever Dr. Amy Goldstein who is a specialist in mitochondrial diseases. Aubrey has been doing a lot of jerking with her arms and legs lately and doing these movements as if she is being startled. They come in clusters several times a day. Dr.Goldstein let me know that movement is a Myoclonic seizure and told me we now need to change her seizure medication to get these under control. Her new medication Keppra will take 4 weeks to introduce it all to her because we have to go in stages. She is pretty confident this will take care of this particular kind of seizure.
We discussed Aubreys progress and how well she has been doing with all of her therapists and physical activities. She was very happy with her muscle tone and the strength she is building up. One thing she did want to prepare us for because it is very common in PDCD children is stroke like episodes. She said all kids with pdcd will go through this where they will lose all function in one side of there body. When this happens they try medication to restore function then they will have to do a MRI to check for any lesions on the brain. She said it is scary but will be treatable.
