Chiari Daddy & Daughter Brain Surgery

Jeremy and Summer were diagnosed just two days apart with Chiari Malformation 1. Now they are both having brain surgery along with Summer having plastic surgery. Here is a little about my family. Jeremy and I have been married 17 years this October. He has been my rock through the loss of 11 babies. Most of them were lost in the first trimester except in 2005. We were pregnant with our second set of twins and I finally allowed myself to get a little excited when I pasted the first trimester. Then 22 weeks into the pregnancy my cervix let go and my two angles were born early October 25^th. Lance lived for 30 minutes and Lizzie for 5 minutes. We held them in our arms and loved them every moment they were with us. After their funeral I was unsure about so many things and God saw I needed a miracle. Six months later we were pregnant with Summer and I was on full bed rest for eight months. Finally she made her grand appearance December 2006 and she was the best Christmas present I have ever received. She was born with a huge birth mark on her left scapula and the doctors said it was ok we would just have to watch it as she grew for changes. A couple months later we noticed she was becoming sick a lot and it would take a long time for her to overcome it. At first we thought maybe I was going overboard and being a scared new mom or something. Then the Dr. agreed something wasn't right and after many specialists later she was diagnosed with IGA (an autoimmune disorder). We quickly learned how to become pro-active with her health and things started to get a little better. Then we noticed she was having issues controlling her body temperature and would complain of muscle spasms and as well as arm and leg fatigue. At age 4 she was then diagnosed with Vitiligo, a second autoimmune disorder. Well we researched that one too and her Dr. limited her to 15 mins a day in direct sunlight due to it being a trigger. She has white patches over her body because when she gets a booboo instead of it healing normal the pigment does not develop and instead heals white. This disease puts her internal organs at risk for inflammation as well as her eyes. It causes her skin to thin and she may look like Cruella De Vil at age 20 because she already has quite a few white hairs growing out of the middle of her head. Needless to say she has been through a lot for a kid her age and our savings and everything else has been exhausted due to the many medical bills and medications she has required growing up so far. The crazy thing is this sweet little six years old is so positive about everything. She knows God made her special and she thanks him through the good and the bad days. Most people don't even know she is sick unless they see her spots or her purple bags under her eyes all the time. I decided to go back to school and finally six years later I am finally graduated with a physical therapy degree and will take my boards in January and hopefully be able to focus and pass them so I can help us regain our financial security. I thank the Lord that a couple months ago my husband finally listened to me and went to the Dr. about his crippling headaches, muscle pains, nerve issues in his arms and legs and he sleeps all the time yet is never rested. The doctor performed a MRI after a Cat scan showed something odd. He was diagnosed with Chiari Malformation I and was told it is hereditary. Two days later Summer had an MRI and she indeed has it too. So after many more MRI's, sleep studies, lab test, and other countless things for both of them, we get the news Summer has true Chiari and needs surgery soon:.. But they want to do the brain surgery and take off her birth mark at the same time since it has been changing over the years and that can lead to cancer. It will take 2-3 surgeries to remove it all he says and will set it up with the plastic surgeon that we were currently talking to. Now its set October 18^th 2013 is her first surgery and the others will follow into the first of next year. While we are waiting on all this with Summer the neurosurgeon in Dallas that Jeremy has been waiting to get into calls and says come in Wednesday Sep. 11, the day after his 35^th birthday. We find out he has true Chiari as well and the Dr. doesn't want to wait long and says within the next two or three weeks he needs it done. We go back home and the next day around 6:30pm they call and say the Dr. has looked over his MRI and wants to do it next Tuesday???????? OK, can we say shock::.. We are not prepared for this we thought we had time!!!! So here it is the day before surgery and I am sitting up here at the hospital waiting on him to finish yet another MRI of his back this time. I would be lying if I said I had it all together and was not worried. I do know that with GOD everything is possible and this was his timing and he is going to help us take care of everything. I know it is a lot to ask complete strangers to help a family in need but at this point I don't know what else to do. It's a lot to take on, it's 2 hours away from home, I can't stay with him in ICU so I had to get a hotel and then we must eat and pay for gas and medical bills, medication and any extras then turn around and do it all again in three weeks which is when Jeremy may be cleared to go back to work. So I am praying for help with this. If you cannot help financially that's ok I get it, but you can pray and share our story. The more people praying the better things will be I know. God has this and I believe this is an avenue he lead me to in order to help us. Thank you from the top to the bottom of our hearts. I will keep everyone updated on our progress. Please continue to follow our journey and keep us in your prayers. God can move mountains and he is showing me that every day.