Ricki was given a additional diagnosis of Postural Orthostatic Tachychardia Syndrome - which is of course another rare condition! Ricki is definitely one in a million in more ways than one. In some ways it is finally a relief however odd that seems. We have been to several doctors and they have been telling us it is all in her head:( so it is a comfort having a cause for some of what she is experiencing. The next step is to experiment on some of the suggestions they gave us to lesson the symptoms and make life a little more comfortable for Ricki. We will be focusing on diet and some very specific excercises. They were so cute as they worked with Ricki. One of the challenges is any type of movement needs to be taken slowly.... No wonder she loves Flash the Sloth from the movie Zootopia! One suggestion was to sing "happy birthday" between each movement to let her body adjust to each new level. This is something she already had started doing naturally but not all the time.
The other issue that has been of concern was with some of the tumors on her c-spine. There has been talk of surgery but Dr. Blakely felt a better route for now would be an occipital nerve block that could relieve the pain without surgery. Her concern was that surgery could actually irritate all the nerves back there even more and make the pain worse so it is better to wait as long as possible to remove the tumors.
Several other things we're discussed and we loved how thorough Dr. Blakely was. It was fun to watch how detailed she was and she knew exactly what to be looking for. She was vey optomistic and felt Ricki was really doing great with all she had going on!
We feel so blessed and have some relief knowing we have someone with more experience keeping an eye on things with Ricki that we can continue to go to for the future care of Ricki.
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