Joy comes in the Morning

After waiting patiently (okay I know that's a stretch) we got to go see Kamiree's new neurologist today to get test results from her EEG on January 22nd.  I always hate these appointments because if you go in with optimism you usually leave crying, and if you go in with dread you usually leave crying.  So what's that leave us??  Lots of crying.  It's always at these appointments you again realize that you don't have a "normal" kid.  I know some of you are already thinking...there is no such this as normal...but I disagree.  If I had a normal kid we wouldn't go to the Children's hospital every 2 months just to hang out and see some doctors.  I know there is worse, I know Kamiree is not on the worse spectrum in many minds, but again you don't live with her or have to deal with her mood swings and problems everyday like I do.
We found out Kamiree is having spikes still 20-30% of the time, with most of them happening at night. This is good news, because she was at 50% before we tried any drugs.  The spikes did go up a little from the last time, but not enough to warrant change.  It was explained to us that basically this medication is covering up the problem not stopping the spikes.  There is no medication that can stop the spikes.  Kamiree has not had a huge regression in the past 6 months, which is HUGE, but we could be coming upon one again soon.  You never know with this syndrome, so for now we laugh and TALK with her and pray to God she doesn't go back to where she was.
Her neurologist also showed us her MRI from this past summer and showed us 2 white spots that are barely visible on her brain.  He said this might be possibly from a brain infection and might be the tip of the iceberg for all her "problems."  This was the first time anybody has told us that this might be the root of everything.  His recommendation is to have another MRI this summer and see if the spots are still visible and we will know something might have happened.  He said the brain infection and hearing loss then may be related!  Another step forward to finding what's going on, but another guess as well.
He also ordered a genetic test.  I have always wanted this just to see if this syndrome might affect the other kids.  I don't want another child like this, saying this does not mean I don't love Kamiree.  I'm saying it would be so incredibly hard, as if it's not now, but in a way that I wouldn't be able to explain.  There is only so much I can take, and I want to know what our future may hold basically.  Even though honestly, if it is my DNA's fault I'm going to feel guilty.  I have always taken Kamiree's diagnosis as my fault as a mother and even though I deep down know that I am not GOD and cannot control what my child was born with or developed later...you can't help but think what you could have done differently.  Especially if it really was a brain infection...how did I miss that?!?!  I just have guilt and hurt for my daughter.

This being said, he recommended every therapy we can find (which we have been doing), and to continue on this new medication for at least 4 more months.  To give her the best chance of as much of a "normal" life as we can give her.  Hearing this though really did bring confirmation that we are in the right place.  I know I say that often, but for some reason it never gets old to hear or find out.  I don't love Denver, but I love what it is doing for our daughter.  We have found people to love us, pray for us, comfort us, and best of all be our "family" down here.  My MOPS group has changed my life.  I no longer sit inside my house sulking for this life I have been given.  God is comforting me through these people and showing me He cares.  I do still want to scream why!? and I still don't understand why!? but God does and really that's all that matters.