Yet another diagnosis

I just returned from a 10-day tour with the high school singing group I direct, but wanted to be sure to update everyone about Lexi's progress.

We took Lexi to Cleveland Clinic on June 7th for a brain and spine MRI and an EEG.  The EEG done at our local hospital was not done properly and 80% of the test was not even readable (but, of course, we had to pay for it!).  Lexi was a trooper!  She had to sit still with 36 wires attached to her for over an hour and then be taken immediately down to MRI and be sedated and placed on a vent to help her breathe. I never cease to be amazed at how tolerating she is of all of it and it reminds me to stop sweating the small stuff!

We walked in the door from Cleveland Clinic about 6:30pm and the phone rang.... it was Lexi's neurologist....that's never a good sign.  The good news: Her MRI has not changed- the chiari malformation is still at 6mm which is a praise!  However, her EEG showed some disturbing readings.  The neurologist is pretty certain Lexi has epilepsy.  He said the type she has (I can't remember the name of it after the last few weeks I've had) is fairly common in older children and they tend to outgrow it by their mid-teens. However, Dr. Frieman (the neurologist) said it is extremely rare to see this type of epilepsy in a child so young (Of course it is! Lexi can never be simple!!).  He wanted to do bloodwork immediately and put her on a strong medication for this condition, but also gave us the option of additional and more extensive testing, which is what we are choosing to do.  We would like to be certain this is what is happening with Lexi before we put her on such a strong medication that she could quite possibly be on for the rest of her life. 

So, we will be going to Cleveland Clinic July 6,7,8 and possibly 9th for 72 hours of constant EEG/EKG and video monitoring in the pediatric epilepsy unit.  This is going to be a REALLY long 3-4 days with a mobile child hooked up to all sorts of wires!  Fortunately, I will be able to stay with Lexi and Jon and the twins are going to try to get a room at the Ronald McDonald house.

Many prayers would be appreciated.  We are very saddened by this new diagnosis- our poor sweet baby has soo much on her plate already and we feel like every few months, a new condition develops.  It is simply exhausting to keep up with all of it on top of trying to sort through my own brain tumor.  My neurosurgery appointment in town is June 26th and from there I will be seeing a pituitary tumor specialist at Cleveland Clinic (assuming our insurance will grant us in-network coverage!)

Please pray for:
My appointment on the 26th for my pituitary tumor. The local neurosurgeon has taken a position with Cleveland Clinic (believe it or not) so if I need surgery, he will not be able to do it.  I would like to see a specialist at Cleveland but they are out of network. We pay for it for Lexi because it is worth it. However, we cannot add additional out-of-network expenses for my medical issues!  Pray that God will allow all the right people to come in to place so the insurance company will make an exception for Cleveland Clinic to be covered in-network for me.

Pray for our appointment with Lexi on July 6,7,8 and 9.  Please pray for patience for me and Lexi and creativity as I try to keep her entertained for 72 hours hooked up to all her wires! Please also pray that the results are more favorable than her first EKG at Cleveland Clinic.


Thank you all! We will keep you posted!