I'm actually starting to look forward to next week. Because it is here. The waiting is horrible. The over thinking everything is even worse.
So, today I got a call from the pre-operative scheduling to get us on the schedule for 11am for bloodwork and a ton of questions for anasthesiology. I am getting numb to it all. The first time they called to schedule the surgery I cried while scheduling it on the phone. Several calls later to docs office, hospital, billing, insurance, Ronald Mcdonald House and today the pre-op. I think the plan is to wear you down as a parent until your just going through the motions.
I don't really have any cool pics on this post or much news. We are going to try to have a super fun weekend and I'm going to prepare on Monday with a packing list and get suggestions from people that helped make their lives easier. I broke down and bought a tablet for our time up there so we can get on the internet and it not run down our cell phones. I sure hope they have internet connection in the rooms there! I didn't even ask!
I did run across a blog that was so helpful to me because this family used the same Neurosurgeon we are going to use. Here is a link to her blog and they seem so delightful! http://wordsofhisheart.wordpress.com/category/andres-chiari-1-malformation/
Like I said, I needed to read about some kids having such good news. We are also looking to meet another family that is going to be there at the same time as us. We will arrive on the 18th which is the day this girl that is 5yrs old is having surgery. I think Dr. George does these decompressions A LOT. I know he is participating (or maybe doing his own) research study. He has mentioned it to us more than once. Nothing registers on every visit 100%. I will say that navigating the scheduling and imaging and insurance is 75% of the battle. I think the surgery is only 20% and the other 5% is just your parental thoughts.
I'm praying for supernatural strength and wisdom. I also am praying harder that we have only ONE surgery and a perfect surgery and all of the headaches, symptoms and syrinxs will be healed in Jesus Name!!!!
Thanks for agreeing with me in prayer! We just wish happiness, health and so much love to everyone following.
Hugs ya'll
http://youtu.be/vI-Y7yKwyEU
ReplyDeleteI think this is the hardest week of my life. I have tried to keep distracted as this has a long ways off. Now it is here, and I have to stay strong for the girls and fr you Jessica. I know this has to be done and doing them together is the best thing to do, but that doesn't make it any easier. I find tear flowing when I am alone in the car or at the office. I know God will see us through and they will bounce right back.
I love you Jessica.