In late April, Anna and Lizzy had their annual checkup with the doctor. During Lizzy's exam, the doctor noticed a couple of things that were concerning: she had a curve in her spine and her reflexes were not responding normally - one of her knees would kick out very strongly and the other wouldn't respond at all (we later learned that the one knee was the only reflex in her body that was responding - all others including her gag reflex are dormant). So, Lizzy got sent upstairs to see the Orthopedic doctor about the curvy spine. He took some X-Rays and measured the curve at 30% - she officially has scoliosis (and it's fairly advanced for her age; normally scoliosis doesn't present itself until adolescence). The doctor said there were some other abnormalities so he wanted her to have an MRI to 'rule out some things.
The next day, Tammy took Lizzy to have her MRI ... that was a pretty scary ordeal for Liz - she had to lie perfectly still for a very long time (many children have to be sedated). She did wonderfully and made it through wide awake. Before leaving, Tammy asked for a copy of the MRI which she took home and immediately sent to her brother Todd who is a radiologist at the University of Iowa Hospital. Within a couple of hours he was able to call and let us know about additional things going on inside Lizzy, and they weren't good.
Lizzy has what is called a Chiari Malformation type I (CMI). CMI is caused when the brain grows down into the spinal canal ( because the skull is too small) and blocks the normal flow of cerebral spinal fluid. This, in turn, can cause pressure on the brain stem and can lead to all kinds of pain and motor control issues (in Lizzy odd or no reflex response).
Lizzy also has what is called syringohydromyelia, which is the direct result of the abnormal fluid flow caused by the CMI. Instead of flowing nicely down the outside of the spinal cord as it's supposed to, the fluid is being forced inside the spinal cord and pools there (the pocket of fluid is called a syrinx). Lizzy's syrinx runs the whole length of her spine and has caused her spinal cord and spine to be twice the width it is supposed to be and is the cause of her scoliosis. A syrinx can cause nerve damage and a wide assortment of motor problems because it interferes with signals being transmitted between the brain and the rest of the body. Lizzy's syrinx is beginning to grow up into the brain stem area and cause further pressure on the brain. Because this part of the brain is where the breathing and heart are controlled (we later learned that the syrinx is within 1 mm of where her breathing is controlled), if left unchecked, this can become a life threatening problem.
The good news is that this can all be corrected. There is a surgery that decompresses the area where the brain is plugging up the spinal canal which should relieve pressure on the brain stem and restore normal flow of fluid. We've been told that once that happens, there is a 60-80% chance the syrinx will collapse on it's own, 80% chance her reflexes will return to normal, 60-90% chance her scoliosis will stop progressing or self-correct. The problem is that the surgery is fairly invasive - parts of the skull are removed, some of the upper cervicals are removed, and sometimes brain tissue is removed to create the space for the fluid to flow. There will be a week long hospital stay after the surgery and a long recovery period afterwards.
All-in-all, it's a very scary thing for an eight year old to have to face. Because Lizzy is so bright and attentive and inquisitive, she understands very well what is going on and what she's going to have to go through. As you can imagine, it's caused a lot of emotion and fear, but all-in-all, she's been amazingly strong through the whole ordeal and has remained very optimistic through it all. She is truly an amazing young lady and we are so proud of her for how she's handled this wave of bad news in her life.
Her surgery is scheduled for tomorrow - June 16. We'll be updating our blog periodically throughout the next few weeks. It's a worrisome time for all of us, but we have great faith and confidence that everything will turn out well in the end. We have already seen many miracles and blessings during the weeks leading up to this. I wanted to record some of them here.
Count your many blessings:
1. Lizzy's problems were discovered before it was too late - one more millimeter and it could have been devastating.
2. Lizzy survived gymnastics. The surgeon said even a minor neck injury with this problem can cause things to spiral out of control and end in tragedy.
3. We have one of the world's best surgeons for this procedure living in Iowa. Dr. Menezes is world renowned for his work with chiari and syringomyelia. He's quite literally written the book on treatment of this problem and specializes in working with children. He's performed this surgery more than 1500 times and is the surgeon that will be working on Lizzy.
4. Tammy's brother happens to work at the same hospital as that great surgeon and was able to help us understand the problem early and track down answers to our many questions for us. He and his family have been very kind about letting us stay with them during our visits to Iowa City and will be watching our kids throughout this week for us - we are so grateful they are here.
5. We got in to see Dr Menezes within a couple of weeks of diagnosis. He told us he has a 3 month waiting list and wasn't sure how we were able to get in to see him so fast. We think our orthopedic doc was insistent that she needed quick attention, and for that we are grateful.
6. Lizzy was scheduled for sugery so quickly. Normally another 3 months passes before the surgery is done, but he had a cancellation, and he gave the spot to Lizzy.
7. That Lizzy hasn't already had more serious problems. Dr. Menezes has been amazed that she hasn't had more trouble with a syrinx as large as hers. He repeatedly asked us about her breathing, swallowing and walking.
8. Our friends and family have been so kind to us. We've wrecked all kinds of summer vacation plans for family, but so many have dropped everything to come to our aid and be here for us. And our friends have been remarkable in the ways they've given for us and especially for Lizzy.
9. Above all else, faith is alive and well in so many good people. Literally hundreds of people all across the country are praying for Lizzy, including many who joined with us in a special day of fasting and prayer for Lizzy last week. That alone has meant so much to us and we so appreciate it!
10. Spiritual gifts are real, in particular, the gift of the comforter. We are so grateful for the amount of comfort and peace we have felt through this whole ordeal and know that that is a gift from God.
This time has really heightened our awareness that the Lord loves and cares for us, that he is very aware of each one of us. Please continue to pray for Lizzy this week. We will try to post at least once a day with news of her surgery and recovery.