The cliffs notes version & the plan

There is just so much information that we have been trying to process through and we have spent the last couple of days trying to do that. I was able to record the appointment in its entirety and so I have gone back and listened to the entire appointment twice just to make sure that we heard and understood everything accurately. 

Our appointment with Dr Greenfield was Thursday December 15th. There was so much nervous anticipation leading up to this appointment. Adam and I were both anxious to speak to this doctor face to face about Henley and hear his thoughts and opinions on what he felt like we are dealing with. Dr Greenfield is one of the top pediatric neurosurgeons in the country, who specializes in Chiari and Ehlers Danlos Syndrome. He even spends a lot of time giving lectures about Chiari to other neurosurgeons around the country. It’s safe to say that this is one of the guys paving the way for the other neurosurgeons in the field as it relates to this condition.  

Dr. Greenfield agreed that Henley’s case is complicated as she has several issues that need prioritizing, with possibly different actions. We discussed her genetic disorder and how that might make the waters a little muddy when it comes to her symptoms. In addition to that, Henley has EDS (Ehlers Danlos Syndrome), which is a connective tissue/joint hyper mobility disorder. I’ll explain why this plays an important role in a more detailed post following this one. However, The cliffs notes version of our appointment was this: Although Henley has two other “co-morbidities” (co-occurring conditions) in addition to Chiari, it does not change the fact that she still has a pretty significant Chiari and substantial brainstem compression that needs to be addressed with surgery. When we asked about the time frame in which this needs to be done, we got an answer of “anytime between now and the next 6 months based on how much she is being affected in her quality of life and how much school she is missing because of her pain." They offered us December 21st which is what I was afraid of, but we declined and told them we really wanted to come home for Christmas and be able to make some plans before coming back up if possible. 

Adam and I were able to talk more after leaving the appointment and I even called back the next morning to clarify some things with Dr. Greenfield's PA. We have taken SO. MANY. THINGS into consideration in choosing a surgery date. We have several things going on in our immediate family that are also "big things" that need consideration. I have personally been having some health challenges that need pretty immediate attention as well and we are working through those to try to get me to a healthy state before taking this on too. Because of this and several other key dates we are working around we chose the date of MARCH 8, 2017. This is the Wednesday before our Spring Break and so this will allow us the most time possible to be up there as an entire family. Being together in this as a team is a very important to us and also for Henley’s morale. This date is set, but with the understanding that if she begins to decline even faster than she is now, we have the option to fly up there if things are more emergent and do the surgery sooner. We are shooting for March though and not before if we can hold out until then. 

We now will be in planning mode and trying to figure out all of the many details that there are to be able to make this all happen. Here are things we are working on, so If you have any awesome hook-ups in Manhattan or know someone, PLEASE email me and let me know. First of all, we are looking for a place to stay for about 2-2-1/2 weeks total. 

The plan is to fly up there on Monday or Tuesday March 6th or 7th. Henley’s surgery would be on Wednesday the 8th and she would be in the ICU for about 4-5 days. Sometime after that she would be released from the hospital to wherever we are staying and we would have to stay about another week before being released to fly home. We would likely have all 5 of us and a grandparent or two up there with us to help with Haven & Zane during their spring break. Dr. Greenfield requires us to stay the extra week because he wants to make absolutely certain that Henley is stable before she gets on a plane and he feels 99% sure that we wouldn’t need to see another neurosurgeon once we got home. 

With Henley being in the ICU its very likely only one of us could stay with her at night so the other parent would have to have a place to stay not in the hospital but near by. We have already checked the Ronald McDonald house and it’s under renovation until June so that option is out. Henley would be at New York Presbyterian / Weill Cornell Brain and Spine Center which is on 70th street and York Ave. Basically, the upper east side of Manhattan on the river. 

With everything being ridiculously expensive up there, we are trying to fundraise with a gofundme along with some other things we are trying to work out that would be available soon. If our story has touched you, we ask that you share it and share the link for the gofundme. We will likely need to raise around $20,000 to cover the things that our Insurance will not cover. It's very stressful just thinking about that number, but we know God has gone before us and he works out all the details.

Thank you all so much for the prayers this week. Here are some continued prayer request for our family: Please keep Dr. Greenfield in your prayers as there is always a person behind the surgeon. Pray for his family life, his marriage and his 4 boys that are ages 9 and under. He is a parent just like we are and has a life and stressors too. Pray that the Lord uses his talents to heal Henley. Pray for safety and COMPLETE resolution of Henley's symptoms after this surgery and for there not to be a need for another surgery after this one. (We do NOT like the idea of the surgery that would follow this if this one didn't fix the problems.) Pray for us as a family. Pray for Haven and Zane as I am certain they will need a little extra love and attention over the next few months with their sister getting what feels like an unfair amount. Pray for Henley. She broke down in tears the other night at the thought of being put to sleep. This is her GREATEST fear right now. She hates it and its terrifying for her. I honestly think this is scarier than the whole brain surgery thing in her mind. Pray for my health and for the things we are facing to be resolved quickly and for me to be healed completely. Pray for Adam. He does such an amazing job of taking it all in stride, but it's a lot. He is working and in school and trying to make sure that he stays balanced too. He has an unusual amount on his shoulders. Pray that we get our dog back. We have been missing Colby since Thanksgiving. He got lost on our ranch and we have tried so hard to find him. It's another heartbreak that we are trying to walk through right now. It just really feels like we are being hit from every single angle and we are trying to stay focused. Thank you all so much for being with us on the front line of this battle. We love you all more than we can say.