Today was a very busy day. We started the morning with an MRI, then had an echocardiogram to check the babies heart, met with a genetic counseler, met with the head nurse of the clinical trial, followed by a 2 1/2 hour ultrasound, and lastly a meeting with a social worker. It was a long day and we didn't really get much new information. Tommorow will be the day that we will meet with all the doctors to go over the results and talk about the specifics of the study. The only information we really gained today was it appeared on the ultra sound that the tech confirmed that the lesion starts at L5/S1 area; however we have not heard the doctor say this for sure. The only other thing we know for sure is that this little boy is moving around a TON. He was really giving the ultrasound tech a run for her money to get good pictures of his spine because he would not stop moving. When the radiologist came in to take a look she said that she was impressed with how much he was moving his legs as well:) This can all continue to change though, because the amniotic fluid can continue to cause damage to the exposed nerves at this point, so even though he has the movement now does not mean that it will stay this way. However, it made us smile today:) We are looking forward to learning more tommorow, even though it will probably be a very long day for us. So far all of the staff that we have met here at CHOP are so friendly and are making us feel very comfortable.
Zander is doing great as well according to my dad. He got to spend the day out at the lake yesterday and was busy playing today with grandma and grandpa. We miss him like crazy and can't wait to see him!! We are looking forward to skyping with him tommorow hopefully since he won't talk to us on the phone:)
We promise to update more tommorow as we learn more. We are trying to stay positive and focused, but it is still easy to slip off the track at times because it is still just so overwhelming. Thanks again to all of you that are following our journey and offering such kind words of support. We are forever grateful to have such loving family and friends.
Grayden's 9th Birthday!
4 days ago