June, July, August, September & October Update

June 2009:


Eye doctor appointment. We were told that RunYi most likely had conditions that could not be repaired with surgery as well as vision that could not be corrected with glasses. This was due to damage to her optic nerves. Needless to say this was more than a little disappointing. Scheduled additional eye testing that would tell us how to move forward.

International Adoption Clinic appointment. RunYi saw the infectious disease doctor, occupational therapist, psychiatrist and social worker. Everyone had great things to say, and her immunization titers were all okay—no more vaccines for now!

RunYi started physical therapy with our local provider. Thankful to be finally moving toward some improvement.

Met with our equipment guy and ordered a mobile stander and walker/gait trainer. Decided to wait on the wheelchair to see exactly what she would need.

July 2009:

RunYi had her MRI in St. Louis under anesthesia, and did great. We got the results and she also has periventricular leukomalacia (brain damage to the ventricles in the gross motor section of the brain). We were so relieved to get this news. I asked the NP if she had ever had a parent excited to receive this news…she said no, but understood our happiness. We were thankful that we were dealing with CP rather than a condition that would get progressively worse. CP is just managing what you have, not dealing with regression.

We sold our house and moved to a rental, which has no high speed internet available. I disappear from bloggyland.

Finally got RunYi cast for her new ankle foot orthotics (AFO’s), or braces.

Had the additional eye testing done. RunYi’s vision is 20/80 in one eye and 20/100 in the other. Again, nothing we can do to help her see better at this time.

August 2009:

RunYi had her dental work under anesthesia. She had lost one of her front bottom teeth a few days prior to the surgery. The dentist pulled the other tooth next to it (it was loose) and also her two front top teeth. They needed crowns, but the dentist said they were already beginning to lose root, so he pulled them instead and saved us about $400. She looks so much older when she comes out!

We got her mobile stander and walker/gait trainer delivered!

RunYi and Graycen go to St. Louis for sedated spinal taps (LP’s). The neurologist wants to test the level of folate in their spinal fluid. There is new research that correlates low brain folate levels to increased muscle tone.

RunYi gets her new AFO’s, or foot braces.

September 2009:

We continue with physical therapy and begin the process to enroll RunYi in school. Lots of testing and meetings.

We get the results of the girls’ LP’s. Graycen’s folate level is fine, RunYi’s is very low. Our neurologist orders some genetic tests to determine which medicine will address the low folate best.

October 2009:


The neurologist prescribes leucovorin for RunYi, to raise her folate level.

We begin Garrett’s Marching Band season…thankfully RunYi loves music.

We have our 6 month post-placement visit.

We finally have RunYi’s IEP meeting and set her first day of school for October 19. She will be in a special education classroom with some time spent in a regular kindergarten class with an aide.

We have an appointment with a local rehabilitation medicine doctor to discuss Botox injections for both girls.