The Story Continues...

I feel as is I should write a segue to connect my last entry smoothly into this one, but it would be impossible to fill you all in on the joys of the past 4 months since my last surgery. It has been restful and rejuvenating and as Paul and I were reflecting on it the other night, we couldn't remember a happier time in our lives. I think we've been taught a huge lesson on perspective. There aren't any days that stand out in my memory, we've just had a feeling of being so blessed by the Lord and content. It is impossible to recount the events of the last 2 years without acknowledging that God is sovereign and has carried our family through times we could not have bared alone.

Although our struggle is not over, we know from experience we will be carried through it by God's mighty hands. It is already overtly obvious that He is laying down the path in front of us. Allow me to share...

1. Our son's ENT, Dr. Trey Fyfe, who has only known me as a "mom" (not a patient) has been my hero in helping me find the location in my brain that was leaking Cerebrospinal Fluid (CSF). He found it, called a neuroradiologist (who had a great personality and was very nice and helpful to me - a miracle in itself!) and arranged for me to go directly from his office to imaging for a spinal tap and cisternogram that definitively found the hole in my dura and skull that the CSF was leaking from. A 1 1/2 year mystery finally solved! They found a 5mm hole in the base of my skull on the cribriform plate.

2. How did I break the bone in the middle of the bottom of my skull? My intra-cranial pressure (ICP) became so high that it broke through the bone, causing the dura (protective covering around your brain) to burst and CSF to leak out of my nose. My ICP continues to get so high multiple times every day that it continually re-ruptures the hole in the dura and CSF leaks almost continually. It sounds bad, but it's actually a HUGE blessing. If my ICP had gotten increasingly higher and had not leaked I would have suffered a serious brain injury. The fact that I have such a defect in my connective tissue that it weakened my skull actually saved my life as I know it. And it continues to act in the same way a shunt would - to drain off excess fluid from my brain to protect it. God is so cool!

3. My friend, Lissa, called the other day and could tell I was not doing so well. She asked me what was wrong. If you know me you know my standard answer is "great," but for some reason I opened up to her about our insurance cancelling our out-of-network benefits and my fear that I wouldn't be able to find as great of a neurosurgeon in Texas who could operate on someone with my condition. She asked if I minded if she called her mom to see if she knew anyone, and I said sure. Then we got cut off and I didn't think much of it until she called back that night with her mom on 3-way. Her mom asked me exactly what was wrong and said she worked for an orthopedic spine surgeon and, if I didn't mind (yeah right!) she would get to work the next morning finding me a world-class neurosurgeon. By 9 a.m. she had found me one of the best neurosurgeons in the country, consulted with two other surgeons and found me a geneticist who specializes in Ehlers-Danlos. WHAT!?! I couldn't believe it. I had just told a good friend the day before that I had no idea how God wanted me to find a neurosurgeon, but I was pretty sure it wasn't going to fall into my lap! Joke's on me...when will I learn not to challenge His power?

There are countless more ways that God has shown me that He is holding me tightly in His arms and carrying me as I prepare to face the biggest surgery I have ever had. The surgeons will have to remove a big piece of the top of my skull through an enormous incision, lift up the frontal lobe of my brain, repair the hole in the bone, make any needed repairs to my retina and eye socket that the high ICP have caused, place a shunt in my ventricle and run a small drain tube into my abdominal cavity - I hope they will throw in a free face lift when they close the incision! (my neurosurgeon in NY said this surgery would make my first brain surgery look like a cake-walk...honest, but not so reassuring!) This surgery will be the biggest testimony that it is all Him who is going to get me through. I had such a strong will to fight and survive before the last 2 surgeries, but they drained me of my reserve. However, I feel Him giving me more and more courage and strength every day, which is a miracle because I was out!

I can't wait to see what He teaches me through this trial, as well as how He will work in the lives of all of the people around me. As I look back through the periods in my life when He has taught me the most, it is in the depths, when I have given up, that He has changed my soul. I am also reminded often that this life is but a blink in eternity and of Romans 8:18, "For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us."

There is no doubt that I am exhausted of my body and its condition, but my hope is in the Lord who tells us in Philippians 4:20-21, "For our citizenship is in heaven, from which also we eagerly wait for a savior, the Lord Jesus Christ; who will transform our lowly body into conformity with the body of His glory, by the exertion of the power that He has even to subject all things to Himself."

What's next? I have an appointment with my new neurosurgeon in Houston on March 25th. I am hoping we will come out knowing the intricacies of the procedure as well as a surgical date, but who knows for sure?

Much love and thanks for your prayers and support!
April