Well it has been a full week. Noelle was scheduled to see a developmental specialist in Oct, his earliest new patient apt. Well they had a cancellation on Wednesday at 10:30 so they called and we got in three months early. Praise the Lord! He is doing some genetic testing to confirm his diagnosis Rubinstein-Taybi Syndrome.
It seems that she does not have any of the major health problems just some physical symptoms. It is a big praise that we got in to see him because he recommended not to do Noelle's eye surgery right now. So we have canceled it until she is closer to one.
This Syndrome can be very bad but as of now she is doing really well the doctor was very impressed with her development. He wants us to keep doing what we are doing add some speech therapy in a few months and maybe some physical therapy too. He is going to do a brain scan in a few months and we will do the eye surgery hopefully in January or February.
to be very honest it has been a hard week for me just trying to wrap my head around everything and feeling very overwhelmed and unable to deal with all of this. God has given me a peace that has washed over me and now I feel more at ease with everything.
It is hard because my parents are having a hard time accepting all of this. Every time I talk to my mom she tells me some horrible thing about the syndrome. It is hard.
God is my anchor. My strength. My ever present help in trouble.