Calm before the storm

Adam and I both have been meaning to write. I feel like we are right in the middle of the calm before the storm. We have had two more doctors appointments since Christmas. One with our Neurosurgeon and one with our Neurologist. Because so much transpires from one week to the next for us, it was very important for Adam and I to get one more appointment with each of the doctors to get answers to all of the questions we have come up with since our last appointments. The last month has been filled with tests, blood work, unexpected developments which resulted in confusion....oh, and Christmas.

We had a really good Christmas. We made every effort to be as low key as possible and really soak up the family time we had together. We hosted Christmas celebrations for both mine and Adam's extended family and that was really good. We love to have people in our home and it's sometimes easier for us to host events than pack up our little circus and drive all over creation for the holidays. We hosted a brunch on Christmas Eve for my family and it was such a good time. Before everyone headed home my uncle decided to have everyone pray over Henley. Listening to the prayers from my family was so humbling and was a great reminder that we are not alone in this trial. I am thankful to be surrounded by other believers who are on their knees on our behalf.

The night before our appointment with Henley's neurosurgeon, Haven asked us if she could come with us to the doctors appointment to meet the doctor who was going to be doing surgery on her brain. Of course we were fine with her coming with us. I am thankful she wants to be a part of what is going on and we are doing our best to make sure she is not left out. When I told my dad about her request he said "I want to meet him too, can I come to the appointment?" So armed with our list of questions and a few extra family members we walked into our final appointment with the surgeon before the big day. The appointment went really well. The doctor spent a solid hour with us answering every question we had. We left the appointment feeling confident that we were making the right choice. We discussed the genetic issues with him and questioned whether or not that could be the real problem or if these things were all Chiari related. He said that it was a tough question because most times in medicine the answers are clear cut. For example: you have a tumor and it's causing problems, you remove the tumor and it most likely solves the problem. For infections you take antibiotics to cure the problem, for cancer you have a protocol for that as well. For Chiari it's more of a toss up as to whether the procedure will fix the problem.

Tuesday of this week we met with our neurologist. Haven wanted to go to that appointment as well. It was another really good appointment and we got some really good time with the doctor. It's been about a month since we saw him last and so we were anxious to discuss all of the tests and recent blood work results. He agreed that the genetic issue was unexpected and made things a bit more complicated. He was also shocked that the EPS results came back in the normal range because it was obvious to all of us that there was a problem with her reflexes. Either way he explained that her Chiari is considerable and there is a significant amount of pressure being put on her brain stem because of the amount of crowding at the base of her skull. This is what we believe is causing the majority of her symptoms. For example her overly sensitive gag reflex, her frequent coughing, gaging and throwing up spells, her inability to gain weight, her problems walking and her vocal tone/ slurred speech. Because of this he said that it was still a good idea to go ahead with the surgery. In his opinion it would only be a matter of time before we were having to do the surgery for one reason or another.

So many of you have asked us to post a list of specific prayer request as well as details about the actual surgery and recovery process, so we will be posting about those in the next few days. As always, thank you so much for the prayers, emails, texts and Facebook messages. We are so thankful for every prayer going up on our behalf.