Sometimes in life there are moments that seem to change the direction of our lives. This year alone we have had a couple. In December we found out Kamiree had apraxia of speech and we knew we had to go somewhere to get her some help so that has been our focus. Today was another one of those moments. We found out our daughter is having seizures, and not just a few, numerous.
Yesterday when we checked in to the Children's Hospital we were told that if they didn't see any seizure activity we would only be in a night. So this morning when a lady came in at 9 am to start taking Kamiree's electrodes off we thought all was good. I put her in the bath, and all you would see is smiles. My mom came in to the bathroom to let me know that the doctor was there so I stepped out happy as can be. He looked at me and told me that Kamiree's EEG is abnormal. I just kept staring at him thinking that he accidentally said the wrong thing...waiting for him to fix it. He did not but continued by telling me that she is having numerous or frequent seizures in the left lobe which houses her language and comprehension. It could be one of 2 things, either the seizures and apraxia of speech are correlating or they are working independently in which case she has another thing to add to her long list of not being a "normal" child in today's world. Phew...okay so I was acting like all was good, hoping he would just go so I could just cry, and he did go...and I did cry.
We were checked out with the instructions to call next week and talk to our neurologist to set up a repeat MRI, to see the damage in there, and then they will figure out a game plan for our sweet child Kamiree who is looking up a mountain with no top. Even though she doesn't know it, I am seeing it for her.
So even though this move to Denver has been stressful, taking a step back, God planned it. Now we will be in our "hometown" while they figure out what drugs work for Kamiree. I don't want to smile right now, just cry...but I know my heavenly Father has a plan, and this is it. He loves Kamiree. And for right now, that's what I'm holding on to.
Kamiree: The struggles and triumphs living with Landau-Kleffner Syndrome
Wow that's difficult news to take! You're not crying alone, by the way (although I've never met Kamiree, I'm so sorry that you and your family are going through this). Even though we know God always has, always does, and always will work everything out for good and for His glory, these kinds of circumstances are just overwhelming. GOOD FOR YOU to hold on to what you KNOW to be true -- God loves your sweet daughter, He loves you, and He is the all-powerful One in control of the whole situation.
ReplyDelete