As of today we are just over 7 months past Henley's surgery. Wednesday we had Henley's MRI scan to show us just how her brain had settled since the surgery. Apparently it takes several months for the brain to settle in its final spot after a surgery like hers. Because they removed part of her occipital bone and thinned out the dura (the lining of her brain), it has changed a little bit in shape and location.
When we left the hospital on Wednesday from Henley's MRI I told Adam that I felt like we had just crossed the finish line of a very long marathon. I felt really good about things and was just so relieved that it was over. Although, this time Adam and I both got to be with her while she was being put to sleep, I was never so thankful to see her face when she woke up from anesthesia. Although my trust is in the Lord, there is nothing more nerve wracking in my opinion than having your child's life completely in another human's hands and you have to be sitting in a waiting room. We were really hopeful that this would be the last time she would ever have to be "under" for an MRI.
Today was our appointment with her surgeon Dr. Roberts. Right away he walked in and asked us how she was doing. We had nothing but great things to say about her life since surgery. She is eating, swallowing, not throwing up, gaining weight, walking normally again, speaking like she never was before surgery, does not seem to have headaches, and is just overall a much happier little girl. We told him that the surgery had changed all of our lives for the better and we were so thankful. He told us that he thought that was all great news. He said that He and the radiologist were having a difference of opinion regarding her MRI results and that he wanted to show them to us. According to the radiologist, Henley still has some compression on her cerebellum, however Dr. Roberts believes that as far as her spinal fluid flow and amount of fluid able to pass through, it definitely looked different from the pre-surgery MRI. After looking at the MRI with Dr. Roberts and comparing the pre to the post MRI images we agreed that "the proof is in the pudding" and if all of her issues seem to have resolved then Dr. Roberts "would not touch her with a ten foot pole" to do any more to her brain to resolve what the radiologist believes is still brain compression. Because things are not completely cleared up as we had hoped Henley will have to have another MRI next year at this time to see how her brain looks at that point. Between now and then we will just be watching her to see how she progresses through this next year. If we see anything in her that looks like we might be taking a step backwards we will call and address it sooner. Otherwise we will wait to see what the next set of images show.
Another issue that was addressed at this appointment was the fact that Henley has had a total of 6 seizures or breath holding spells over the last year. We had a 24 hour EEG done back in December and that test was concluded that she did not have epilepsy. However, Dr. Roberts wants us to visit with aneppileptoligist to do a full workup on Henley regarding her seizure potential.
We left the appointment today not exactly sure what to think. It appears that this chapter is not completely finished and so we will continue to walk in faith that the Lord will use this journey to shape and bless our family. We can not say enough to those of you who have walked with us and prayed us through this trial. We are beyond grateful.