Just when I thought the storm was over, we were hit by lighting!!
It all started a few weeks ago when Erica started to complain that when she looked up, her "eyes would go black". She also said that she was very dizzy after these episodes. I took her to her regular doctor and he thought it was a virus. When it continued I sent out an email to her doctors explaining her symptoms. A few days later we had a regularly scheduled appointment with the geneticist. He said that he thought that her skull was starting to slip from the base of her spine. This is causing the bones to either impinge the arteries going into the brain or hitting against her brain stem.
I cannot believe we are in this position AGAIN!! I thought when the doctors fused C1-2 in her neck, that she was safe. Apparently this is extremely rare. But to be honest, no one knows what to expect because she was one of the first to be fused at C1-2 and one of the youngest.
The best scenario would be that it was just hitting against the arteries. Best scenario, she could have a stroke. Really?!! Come on, REALLY??!! A stroke? the worst case scenario obviously is death because she is hitting her brain stem and the brain stem is what controls things like breathing and heart beat. What the doctors are saying to us is there is a possibility that if she moves her head in the wrong direction, she could die immediately. Wow!!
How do you go on from there? How to you just sit and joke with her? She is wearing her neck brace and hating every minute of it. Do I tell her how dangerous it is to go without it and what could happen as she is trying to negotiate with me? Where is this in the book "What to Expect When you have a Child"?
Right now we have several doctors doing what they can to think of the best way to keep her safe. One doctor is calling other doctors from around the country to find someone that has experience in dealing with cases like this. She will be seen locally here in Cincinnati, but also up at the Cleveland Clinic. But this has been going on for weeks and only her regular doctor, the geneticist and a doctor outside of the Children's Hospital. If she simply had a broken arm, she would have been seen and on the way to healing. When it comes to her brain and we have to wait around!! God is calling me to wait upon Him, so I cannot argue with that.
Erica went for a CT scan the other day. It took over 45 min to convince her to get onto the table for the test. CT scans are very quick, but she had it in her mind that she did not want to do it. Through the screaming and crying we all discovered that she is scared to death to find out the results. To be honest, I feel the same way. I cannot imagine going through something like this as an adult, let alone an 8 year old going through this for a second time. She does not trust anyone at this point. She does not understand why the adults around her don't know what to do. When her eyes go black, she gets very frighten. When Erica self-limits her activities and decided to use a cane on her own because she is afraid of falling you know this is a miracle in and of itself!
All things aside, I know that I know that I know that she will end up okay in the end. People say I have a lot of faith. I am not sure what that means other than I have experience to show that God will never leave us. He has kept every promise and fulfilled every need just as we need it and sometimes even more than we could have ever expected. I would be a fool to stop believing Him now.
The hard part is getting to that "okay" status. The school called and asked that we agree to put her on home instruction. I understand their point and to be honest, if I were in their shoes, I would do the same thing.
We are so blessed to have so many of you that have prayed and supported us over the years. I believe that God has listened to your prayers and His blessings have rained down upon us. All I have to do is to sit in my kitchen!! Please continue to pray, please for CJ and Elizabeth and especially Chuck. This is very difficult for all of us.
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