Sorry that I have not had a chance to update everyone since my last post. The past few weeks have been a little busy since I have had to work and also try to stay on top of all these appointments as well as preparations for the clinical trial. Here is a little update since last post. Following our first neurosurgeon appointment Austin and I were a little discouraged as we were told that the baby's hydrocephalus appeared moderate per the neurosurgeon's opinion and that more than likely he would require a shunt following his birth. We left his office very frustrated and upset because he had been looking at the same ultrasound pictures as the previous "specialist" and had a completely different opinion. Since that visit however, I have been reading many other posts written by moms who have kids with Spina Bifida and am learning that this is somewhat common for docs to have different opinions and to try not to get too hung up on it. So anyways, at that appointment because the doc had the difference of opinion we were given the option to have a fetal MRI. We were told an MRI would hopefully give the doctor a clearer picture of what was going on inside the babies brain and to possibly rule out any other anomalies. This past Tuesday we were able to have the MRI and meet with the neurosurgeon again. He still believes that the hydrocephalus appears to be moderate at this point, but he did not think that it had changed since the last visit (which is a good thing). He said that it is still unknown at this point if he will need a shunt but he is leaning toward probably. He also said however that the lesion appeared to be slightly lower than he originally was thinking and that L5 may possibly be closed meaning the lesion may be at the sacral level. (I am not banking on this though because he didn't sound very sure of himself when he said this). The baby was actually moving the entire hour that they were doing the MRI so they were not able to get the clearest pictures. I really don't think he liked all of the noise. So anyways, it is still basically a wait and see and hope for the best situation. Waiting, as many of you know, is not my forte so this is extremely difficult for me. I am a planner, not a wait and see type of person, so this experience is really testing me.
As far as the clinical trial goes, we are still waiting for them to receive some of the final paperwork and we will hopefully be scheduled for our three day evaluation within the next week. I talked with the coordinator today and it sounds like more than likely we will be placed in Philadelphia at the Children's Hospital of Philadelphia. So if we decide to participate at least we will be a little bit closer to home than San Fransisco:)
So the next two weeks will mean a lot of decision making for Austin and I as to whether or not we will choose to be part of the trial. We want to make the best decision for Grayden and his future but also for our family as a whole. At this point we will continue to research and empower ourselves with knowledge to aide in our decision making.
We are scared of what the future holds for us, but also excited to meet our newest addition. We know that he will bring so much joy to our lives and no matter what the obstacles we will face them together. I am trying to prepare myself for the challenges that we may face, but also constantly reminding myself that Spina Bifida will not define our son, it will only be one piece of who he is. There are so many other things to look forward to, just as we did when we were expecting Zander.
Thanks again to all of you who have shown us your support. I promise to try to keep people updated these next two weeks as decisions are made regarding our participation in the clinical trial. We appreciate all of the positive thoughts coming our way!!
Boulder Ridge Zoo
1 week ago